Based in Pittsburgh, PA, Cancer Experience Expressions is an online space for the sharing of cancer stories. 

collection from Nancy's journal

 

(Passages carefully selected from https://www.caringbridge.org/visit/nancyorr)

This story begins February 2012…

In Feb. 2012, I returned from the islands and my stomach was bothering me. Ernie and my brother, who were with me, also said they had stomach problems. We had switched sources for our drinking water so I thought perhaps that was the reason. A week later I had a physical scheduled with my GP and I told him about some pain in my abdomen. He said: "It's probably gas. You are healthy. My advice is to stay away from doctors". The rest of the physical was a joke as he talked about his travels. Two weeks went by and I was in his office again with a sharp back pain. (I very rarely go to the doctor so it was quite unusual for me to be there twice). I thought I might have a kidney infection. The nurse said I did not but to watch for a rash in case it was shingles. Did I want them to run more tests? I said no, I just wanted to make sure it was not my kidney. Weeks go by and my symptoms persist. At the end of March I went to Florida and when I asked my friend months later if I had complained about my stomach, she said yes and that I mentioned the word cancer. You see my cousin's daughter had just been diagnosed with ovarian cancer and abdominal pain was her symptom. I made an appointment with a GI specialist for May 10. Meanwhile I was thinking I had developed a glucose or lactose intolerance. I read the current Mayo clinic health letter which was five pages devoted to gastrointestinal issues. It said that everyone thinks they may have cancer but that is rare and it could be any of a myriad of things. My GI appointment was canceled and rescheduled for May 24. My symptoms are worsening and I tell Ernie I cannot travel to France until I figure out what is wrong with my stomach. On May 24 I saw the GI and he did not examine me, just scheduled an endoscop/colonoscopy for June 4. I had my annual gyn exam May 30 and she said it may be fibroids to get a sonogram. My stomach is getting bigger even though I am eating less. At this point I have seen three doctors and none of them have raised any red flags or remotely suggested it may be cancer. It took me awhile to schedule the sonogram for June 11. My endo/colonoscopy showed nothing except some irritation of the lower esophagus. The nurse said to take prilosec.

When I got my sonogram, the doctor rushed in with a look of horror on her face and said: how long has this been going on? There are masses everywhere. I am shocked. I'm doomed to death I thought. I had to go home and face Ernie. The next day I had scans and Dr. Z said I had stage 3 ovarian and he would operate in three days and that is when this journal begins ...

My doctor (Peter Zucker) just moved here from John Hopkins in Baltimore.  I am his first surgery here.  Fortunately he is not a Rotten Ravens fan or I would never be resussitated.  We are very impressed with him and feel I am in the best possible hands.

     I feel I am riding a tidal wave of love into surgery tomorrow morning.  It is an exalting feeling.  I cherish each of you and thank you from the bottom of my heart.

The word hiccup has taken on a new meaning for me. It isn't in Webster's unless it is under obscure torture methods. Hiccupping is enhanced by using a breath machine at the same time.

I have a beautiful view of Pittsburgh from my room. It may be costing more than a dinner at La Mont but it makes it all bearable.

Somehow my room temperature went from a comfortable high '60's to 90 last night. Maybe they are trying that warming your blood method without my having travel to Germany. Whew!

Michele brought me Evian water - the only thing I can enjoy right now. Technically I am allowed to have this but housekeeping can't resist making a clean sweep of my tray and giving me a fresh pink plastic pitcher of ice water with a straw.

Back to the breath machine .... They hear some wheezing in there

Home Sweet Home takes on a whole new meaning. Buster curled up next to me, cool summer breeze wafting through. Sunshine. Ernie and I breathe a sigh of relief and happiness. I have a newfound respect for the nursing profession and thank my sister-in-laws, ex-nurses RoseAnn and Rosemary for helping me transition from hospital to Home Health Care. Navigating the world of medical jargon,pills,equipment,directions etc,etc is totally overwhelming. My idea of HHC was finding the right size bandaid. When I first met the surgeon I asked him if I would be in the hospital overnight. I intend to treasure this day and it's gifts.

To those of you just checking in, my diagnose has changed from ovarian cancer to apenial cancer (don't know how to spell it - cancer of the appendix)

Many thanks to all friends who showed up yesterday to help. It didn't take long for me to totally poop out (literally ha ha). I managed to force some food down and take two little walks. This morning I am calling the insurance company and the fun will start with them. I am very grateful to have insurance tho. I can only take this one day at a time. I could not get through this without Ernie. I really worry about him. All the attention is focused on me and he is crying inside.

Another stunning day out there. Sue, an old friend from Meadville, went home yesterday. We will miss being waited on hand and foot. Thank you Sue! Life is settling into a surreal, slow pace. It feels very good and healing. You know things are not far from normal when my 91year old father can still drive me crazy. Who invented phones anyway?

I walked to the end of the street and am enjoying food again. My next appt. Is with my new team at the Hillman Center on July 5. It is possible they could start chemo that day. I hope to heal as much as possible by then.

I'm getting emails that you enjoy the posts so will continue although I am no Nora Ephron. RIP

I called the doctor's office yesterday and the surgeon himself took the call and was quite chatty! He said I was his favorite patient and he thought about me every day. Hey, I'm easy. I told Ernie that he may have to move over and he wanted to know exactly what the doctor said. Ha Ha Ha. (it hurts me to laugh so I have to print it out.)

Dad visited with his dog and caretaker. He was on his best behavior. I imagine he was thoroughly coached although that rarely works. The biggest insult our spouses can hurl at us is "You are just like you Dad!". Even Ernie has resorted to this one. I told my brothers if I pass to the other side, they are to keep him here.

Big day today! I become untethered from this catheter. I will have to find Ernie another job. I think marriage vows should be more specific: I will empty your catheter bag until death do us part. That way you know if you have a keeper.

At the risk of losing campers, I have not mentioned body fluids and other taboo-ables but something is bothering me. (Escape point). I reek. As in smell. There is no escape. Someone told me it is the anesthesia but it is two weeks now. Anyway to get rid of this? I wonder if it is OK eat the fresh garlic in my CSA box. That might do the trick.

I had a pleasant visit with my father yesterday. We were taught to always have an escape route. We sat in the last row at movie theaters next to the door. When sailing we anchoed the farthest out, even if it was too far to row to shore. Once a French boat hit ours anchored out there and forever solidified how my Dad felt about the French. Our Christmas stockings were filled with whistles, hot pepper spray and other unfathomable survival objects. A special Christmas gift was the chemical gas mask. Much to my Dad's torment, I live in the city. Normally one does not save City Dwellers, a disposable item. But we got a detailed map and plotted my escape routes and practiced driving them. (I have to admit I was quite proud of myself when I discovered a new one recently). If you see me driving by in my Mini Cooper with a gas mask on and paying for gas in silver, get behind me. All escape routes lead to: D.A.D.. You tell me which is worse: dying in a terrorist attack or taking care of Dad in a confined area while under attack.

Stay cool

I was euphoric arriving home last Saturday from the hospital with the glorious weather but now I feel entombed in a dark,cool,quiet cave watching everything outside wither. I will probably get a cactus plant in my CSA box this week.

I started filling out, for the umpteenth time, the paperwork for the new doctors. I just want to stamp it: I have cancer. What difference does it make what age and health my siblings are, what vitamins I take, do I have a chihuahua or a pit bull. They want this prior to the appointment on Thursday but they aren't going to get it because I am on Holiday. Weds is a holiday so that means the whole week and both weekends are a holiday. The French would turn it into a month, no problem.

I've kind of plateaued. (sp? iPad doesn't have spell check, it just writes what it feels like writing). I thought I would be walking in the

park by now. My digestive system doesn't have it together yet, maybe because it has been shortened. I started drinking coconut water to stay hydrated. Does anybody know anything about this? Sounds a lot better than gatorade. One box = 4 bananas. I'm eating a lot, as much as I can stuff in without being in agony but I am very thin. They did a number on me in the hospital - 9 days without food or water. Mr. stomach must have disappeared.

Someone left a book, "The Anatomy of Hope" by Jerome Groopman, MD. It is fascinating although the details are a bit more gruesome than I am ready for right now

I called the doctor's office yesterday and again, the surgeon took the call. He said to cut out the pain pills which I did and I'm feeling better. He said he thinks of me everyday. Mamma Mia!

Ernie is taking all that paperwork to the doctor today. He does not know I declared this week a holiday. Ernie's Childhood Experience did not include things like holidays, birthdays,anniversaries,etc. He says: "It's what? Oh, OK. Should I buy flowers?". Bruce Springsteen, the Who, Supertramp, totally missed his radar screen. That's why he sings the blues.

When I remarried I wanted a young handyman. Well let's just say that is not what happened. It must have been the law of supply and demand. Handymen vs. Phenomenological psychologist/bluesmen.

But what I haven't told you about is El Hunko because I want to keep him a secret. (Hands off Nettie) El Hunko is Mexico's gift to the US. He does everything from gutters to foundations and works 7days/week. On Sundays he starts at noon and does landscaping, his passion. After two years I am running out of projects for El Hunko and am moving him into the basement where water issues can keep the most clever tied up in knots for a long time. Sure that interior French drain can be extended three feet. Let's try that. The only problem is the basement is Ernie's studio. I figure he can practice his guitar outside through October. Look how much money I saved by not going to see Mike and Mike five times. Now if anyone has an extra ticket .....

What a night. Lots of thunder (God's Gas) and desperately needed rain but not much sleep. Fortunately we are down from 3 dogs to one small dog because having three dogs in bed all terrified of the thunder or fireworks is a bit much. Especially our pit bull, Hazel, trying to burrow as far as she could under the covers. Once we were robbed in the middle of the night and I am the only one who heard it. Ernie and all three dogs slept blissfully through it.

El Hunko's ears must have been burning from that post yesterday because he stopped by. He is so sweet.

I received a phone call the other day: "Nancee,(pause), Nancee"

I said: "Sophie?". "Yes,yes Sophie. I love you, I meez you, I keez you. Nancee." Sophie is one of the old Russian ladies at the gym. None of them can speak English. I was moved to tears that she got hold of my phone number and called.

Today I have ordered all my systems to be on their best behavior because I am leaving the house for the first time. I have a 25 mile ride to my brother's house (Keith and RoseAnn) for a picnic. My niece called yesterday to see what kind of cake I wanted them to bake. Without hesitation I said chocolate or carrot. I don't know why but I can't get that cake out of my mind. I have been so damn careful with my diet that that piece of cake symbolizes Liberation (from what I am not sure).

Yesterday was exhausting. I did not eat first because I did not want an accident. My 1:00 appt. did not see me until 3:00. The place was freezing and they gave me a heated blanket. Then I had to see the second doctor.

The good news is that the word cure was mentioned. This is the first time I have heard that word since this all started. No matter how remote the possibility, it is possible and the hope will sustain me through the grueling treatment. In about two weeks they will start chemo. They want me to heal first from the surgery. I go in every two weeks for chemo and then wear a pack home that a nurse comes and removes after 48 hours. This lasts for three months. Then a break and then major surgery again where they go in and look everywhere for cancer cells. While under anesthesia they do this thing where they pump your abdominal cavity full of warm chemo and then rock you so that it gets in every nook and cranny. Then three more months of chemo. At this point, the thought of major surgery again is particulary

daunting. So a year of hell to stay alive. I don't think there is any

question of what you would do at my age. If I was 80, don't think so.

This is the largest center for this in the country and they accept people from all over the world. One trump card I was dealt is that I only live three miles away. Even Sloan Kettering does not do what they do here. Three thousand people a year get appendiceal cancer in the US. It hits all age groups. They know of no cause or genetic factor.

Just feeling quiet,contemplative. Like it's the calm before the storm. Sue came down to stay with me again as Ernie's band had to perform in this wicked heat yesterday. I figure I 'm OK by myself but sure enough she had to drive me to the hospital to pick up a test kit. They are concerned the ongoing diarrhea is sign of infection but I think it is because I over indulged on the 4th and the next day had nothing at the

HCC. (from now on I will refer to the Hillman Cancer Center as HCC).

For the second time we put on a movie that was supposed to be a comedy and wasn't. This one was "50/50" about a young man who receives a stage IV cancer diagnosis. Yeah, we were just doubled up with laughter. I could feel Sue rolling her eyeballs my direction wondering if I had picked this out. It just came to the top of my queue and was shipped out. Now that Is funny.

Ernie collapsed in bed when he got home and there is no sign of life. I see that I will have to switch from patient to nurse today.

Anyone in the medical profession out there who would like more detailed information may email me and ask for the report.

I decided it was time to move from Stage One (Shock) to Stage Two (Pitty). So I threw a Pity Party yesterday. Ernie though this was a good idea so we hurled curses at the universe for inflicting us with suffering and the unfairness it all. Very therapeutic.

Many of my neighbors are doctors. If one moves out, another moves in. Probably because a lot of doctors prefer to live close to the medical facilities also. This comes in handy. Once I put Scalpicin in my eyes instead of eye drops. The bottle used to look the same until I wrote the company a letter. I run in a panic to the cardiologist next door and he wisely says: "Flush it out." Ernie is the only musician on the street and does quite well busking in the evenings if everyone isn't shut in by the heat.

Nights are long. Advil/Tylenol don't cut it. I need something a la Michael Jackson. Don't all of you menopausal insomniacs want a night of deep sleep uninterrupted by having to pee or the dog/husband having to pee? What is it with dogs that at 4 am they need to do their business? It was a three ring circus when we had three dogs. And how can men sleep through all of this? I can hobble downstairs with Buster, let him out, wait for him to throw up and as I sink back into the pillows Ernie invariably mutters: "I'll take care of it Hon."

Having cancer reminds me of my sailing days. How to go nowhere very slowly, at great expense, while feeling miserable. Like sailing life centers around the toilet (or a bucket on the boat as the head rarely works).

The HCC sends me videos to watch before any procedure. It's great to be informed but a cheerful, calming voice lists all the risks involved. You can click on each risk for more information. Then the voice says there are more risks but they are rare and won't be discussed. Death is a risk of any procedure. Well I have to have a port installed for the chemo. I wasn't aware this was any big deal until I watched the video. Now I am taking my living will and organ donor card with me. Anybody want my organs? I have a few left.

I had to give the hospital all sorts of legal documents-living will, POA, medical POA,etc.. I am one step ahead of them. I included a "Do Not Reincarnate" form (available online). I'll take my chances on the other side. Thank you very much.

I am settling into my new job assignment: Oncology Patient. It is full time and I need a staff: chauffeur, secretary, cook and Patient Advocate. I was on the phone all morning with nurses setting up appointments, insurance (after 20 minutes they say the computer is down) and Dr. Z. Dr. Z actually called to see how I was doing and to discuss the intricacies of my bowels. Now who else would find this so interesting? Dr. Z and I have a special relationship and we're going to find a way to keep him on board even though I have transferred.

Ernie's only domestic interest to this point has been watching the Food Channel. He has taken on all the chores with alacrity. So what's the problem? Moi. Control Freak. I manage to keep my mouth shut 98% of the time but it is the 2% that gets me into trouble. After an "exchange" Ernie says; "Did you win that that one?". This guy does not even know how to argue let alone score points. I'm retreating to my room with my iPad and trust the gods of domesticity will keep things under control until I'm back on my feet.

Yesterday I re-read my whole stack of cards. There are a lot because RoseAnn's mother Bea who has stage IV lung cancer, sends a card every few days. She has her neighbors and relatives sending cards too. She's Greek. I'll save a discussion on Greeks for another entry. I have to tread lightly with this one.

Yesterday was the worst day so far with the big D. I see Dr. Z this morning to have my staples removed and I guess he will decide what to do about it. Just so they don't throw me back into the hospital. I've become rather attached to these staples. They out punk,out grunge any body piercing or tatoo. But hopefully I will be more comfortable with out them as I feel I am strapped into a corset.

I live for this time of year and farmer's markets. The frig is full of home grown organic lettuce from my weekly CSA box. I don't dare eat any of it. Nothing is going to keep me from a fresh picked tomato though.

When I came home from the hospital I started turning on the ball games, finding the soothing sounds and memories of lazy summer Sundays lulled me to sleep. Slowly I began to pay attention. The Pittsburgh Pirates have been in last place for twenty years. Some Camper must have said something in a prayer because the Pirates are now in first place. BC I would never have taken the time to watch a baseball game. But now, what great entertainment!

Today is the one month anniversary of the fateful sonogram.

Cat scan. No big deal right? Wrong. The cat scan machine at HCC was broken so they sent everyone to the hospital across the street. This overwhelmed them so it was wait wait wait. The nurse had a helluva time getting the IV in my arm. Then I had to drink about 48 oz. Of thick white chalky fluid. Between colon cleanes and cat scans, this is the fourth time I've had to do his recently. Normally I stoically down it right down. Well not this time. I couldn't. They said you have to or the picture won't come out. So I drank it over the next 75 minutes on the verge of tears. Ernie escaped to the cafeteria for awhile. To make matters worse the guy sitt ing next to me said: "This isn't bad." and drank it down in one gulp. I asked him if he wanted mine. I got through the cat scan and then the Pain started. I've only able to eat and drink very small quantities. Now this is sitting in my system. After no relief I call Dr. Z around 8:00 pm and talk to the dr. on call. He was a bit peevish and I had to calm him down to explain my problem. I am sorry mister peevish on call doctor that my farts are not on a 9-5 schedule although I am training them to do so. Suffering does not punch a time clock and go to the beach for the weekend.

He said just to let it work through. Ernie, a basket case by this time, talked to the oncologist across the street who said the same thing. So I started walking back and forth across the house and eventually moved enough through me that I could take an advil PM and pass out.

OK, what's next on the schedule?

Unable to sleep, I've been on the back porch watching the hummers. They are very busy this time of day. Ernie is really upset because he hasn't seen any of his chipmunks since the neighbor's cat visited and killed a pigeon and a cardinal. We love cats but not when they come into our yard and slaughter everything in sight.

The cat scan fluid passed through but I remain in pain. Just when I finally had things working pretty well. Hopefully today things will get back on track.

My dad is coming to visit this morning on his way to our cabin in Canada. This cabin is only accessible by boat. After this he has trips planned to Las Vegas and Florida. (with his caretaker). Now what is wrong with this picture? He never exercised, drinks martinis, smokes cigars, likes his steak charred on the outside and eats copious, legendary quantities of ice cream. His blood pressure and cholesterol are lower than anybody's. Talk about a charmed existence! Well more power to him. Maybe being bullheaded and stubborn is what you need to get through life. I can tell you he never worried about chipmunks.

I had a much better day yesterday and even ate two slices of Mineo's pizza. Normal people food. Dare I introduce salad into the mix?

I received pre-opt instructions for my port placement on Weds. They said to bathe in Hibiclens for 5 days and stated all kinds of warnings with this and then included a $1 coupon. NO WAY! The surgeon can just swab the area in alcohol. I am not going to disinfect and delouse myself for 5 days for a port. I didn't have to do anything like this for my surgery. Smells like a drug scam to me.

When I was preparing for my colonoscopy last month the doctor's office gave me a 20% coupon for the cleanse. When I picked it up at the drugstore it cost $76. I said I am not paying $76 to poop! So they switched it to a generic brand for $8. Then Dr. Z said two weeks later that I needed to cleanse my intestine for the surgery. I said: Not again, I just did this. And he suggested buying two bottles of calcium magnesium (I think that was it) over the counter, mixing it with ginger ale and drinking it. For $4 it easily went down and it worked. He had to cut into my intestine and he said it was very clean. This leads me to believe the colon cleanse for colonoscopies is a scam. Campers, do not let this sway you from getting one. Believe me you do not want an easily preventable cancer.

I've been hearing from overseas Campers via phone calls and emails. Thank you! Ernie and I have made the decision to postpone a trip to France late September although the doctors said they would work around it. Traveling is difficult under the best of circumstances.

Monday morning. I can hear rush hour gearing up out there and the city coming alive.

After several hours yesterday morning of severe gas pain, things settled down and I had a good day. I went for a walk in the park for the first time, did some Tai Chi and Ernie and I made pesto. A quiet day. Weds. I have the port placement and Thursday chemo begins.

I have been negotiating with PWE to take a nap in the afternoons. Protestant Work Ethic. Those of you raised by Protestant depression era parents know what I am talking about. Napping is a sin. As soon as I lie down PWE whispers in my ear: you should do Tai Chi, you should be studying French, etc.. My mother would rather drop dead than be caught taking a nap. She suffered acutely in the heat but would not even consider buying so much as a room air conditioner. The family bought her a hat that held ice cubes in the rim. She cut our wash cloths and towels in half, turned them around and stitched the strong parts together. She cut the feet off my worn knee socks so I could slide them down and wear them as ankle socks. This did not go over very well. My sister and I were well trained in the kitchen so when my sisters-in-law came along and threw out the white ends of the celery stalk she muttered under her breath and pulled them back out of the compost when they weren't looking. I could fill a book with these stories but suffice to say I miss my mother more than anything in the world, every single day and especially now when I am sick. I know that she is holding my hand on this journey.

Dr. Z called after 9 pm last night! My heart is still pounding and to think I almost didn't pick up the phone. He's not even my doctor anymore. He got a copy of the cat scan and said it showed no surprises. That everything looked as expected at this point after surgery. He said it hasn't been that long since surgery and it takes a long time to heal. Said I should start feeling better after chemo (as far as abdominal discomfort and pain). He was quite chatty and concerned. What an angel this doctor is.

I asked to be the first surgery tomorrow for my port placement. We have to be there at 5:30 am. I hope my surgeon has his cup of Starbucks. A port is like one stop shopping. Installed at the collarbone, a catheter is threaded into a large vein and all chemo and bloodwork are done through the port. No more sticking needles into veins.

Yesterday I was able to hang my laundry out for the first time. I've been looking for a clothesline prop and coudn't find my mother's or one on the Internet so Barb & Kathy made me one and it works perfectly!

My brother and I have a large berry patch at my dad's house - black and red raspberries and blueberries. The berries came on as I was having surgery. Not only was I unable to eat them, I was not able to pick them. This is very tedious, especially in the heat. I owe my brother, Tom, a huge thank you for taking care of the patch this year and picking and freezing the berries for us. Other family pitched in to

help pick and water. I am already enjoying a few frozen berries on my oatmeal in the morning. Ernie gave Dr. Z a pint of organic black raspberries and he said it was the nicest present we could have given

him.

 

I am laying in a hospital bed all prepped for surgery. It's only a 30minute procedure to put in this port but they had me arrive 3 hours prior. Wait,wait,wait

The chemotherapy drug company called and said my insurance would pay for the chemo drugs. Well that's a good thing. I said to make sure they didn't dilute the drugs or buy them from Cairo. I have been hearing on the news recently that clinics have been doing this. Anything for a buck. They should be charged with murder in my opinion. I trust they do not use diluted chemo at HCC.

El Hunko called yesterday and said I was in his prayers. My heart went thumpety-thump. His English is not good but his soulfulness shines through.

We had a nice lunch at the Frick. I always found their portions small but yesterday they seemed gargantuan and I could only eat half. I am dismayed that my appetite has shrunk so much. We wanted to go to the exhibit at the museum there but I had to make a mad dash home.

I watched the video of the port placement and thought I knew what to expect. Nowhere in the list of side effects did they say I would have throbbing pain in my right arm and not be able to use it (still the case this morning). Also the big D returned - probably because I had to go so long without eating or drinking. I came home, took a vicodin and slept and watched the Pirate game (the same thing as sleeping).

A huge thank you to Michael for installing a beautiful oak hand rail yesterday along the staircase and to his wife Carol for the delicious soup. Michael found time to do this even though they are leaving today for Alabama to help Katrina victims rebuild. They have been doing this every year.

Ernie's brother-in-law, has multiple myeloma, age 61. He is home recovering from a stem cell transplant at Sloan Kettering. Our prayers are with him as he must live in a totally sterile environment. Ernie and his sister recently lost their brother at the age of 66. Now they both have spouses recently diagnosed with cancer. Isn't this strange?

I limp into my first chemo appointment this morning. I am unable to put weight on my right foot (I think it was from the hours of pacing I did in my bare feet after the cat scan last week) and I can't use my right

arm. But I say: "Let's get the show on the road!"

Just to let you know I am sitting here with the chemo. Drip,drip,drip. The cancer cells are dying off with each drip.

A steady rain has been falling all night. Blissful music.

My first chemo day started on the wrong foot when the nurse who draws blood was very upset with me because I didn't tell her they

left the needle in the port yesterday and she had to throw out stuff and start over. I was a bit taken aback by this and she softened and said she had rectal cancer nine years ago and knew what it was like.

After that everything went smoothly and I had private room with a tv, wifi, bed, recliner, sink and a restroom on each side and across the hall. (The big D is a side effect of chemo.)They brought us a nice lunch and then Ernie went home because they said it would take 4 hours but the actual drip was only two. The nurse droned on and on like I had an IQ of 50. She said: You're not asking any questions. I said that is because you have repeated everything three times. She says I have to make sure you understand this. Sigh. They sent me home with a pump that is slowly pumping chemo into my port as I type this. It is heavy and awkward but only has to be in for 46 hours. I had abdominal pain for the rest of the day.

A story was on the news about a woman who went bankrupt with cancer even though she had insurance. 41% of people cannot pay their cancer bills. My friend Sue, a school teacher with great benefits, bought a cancer insurance policy from Aflak. It is not that expensive and covers all kinds of things that insurance won't pay for and you get money back for each screening you do. I suggest either doing that or having a medical fund set aside. I do. It's called: "Thank god I didn't have to put any kids through college" Fund. I haven't seen any bills from my surgery. My insurance company (Highmark) owns the hospital so they can't say anything about overcharging. We can't imagine what they paid to get Dr. Z to leave John Hopkins after 31 years.

Other than fatigue, yesterday was much better. Gas pain has been replaced by D. which I'll take at this point. The nurse showed up on time to remove the pump and reassured me that everyone felt as crappy as I did and were very relieved to see her walk through the door. She was full of useful info on how to deal with the chemo, more so than anyone else. She is on the front lines and sees us at our worst. She said one woman's cat kept chewing through the line. And BTW, the line is flammable so be careful around a gas stove. Good Advice. This pump is about the size and weight of a brick. Too heavy to carry, I just lug it around and hope I remember it when I make a mad dash to the bathroom. I forgot once and thought I pulled my port out.

To remove the pump, she put on a haz-mat suit and also there is a haz-mat kit to use in case of a spill. She said if I didn't want to clean it up to call them and they would come out. Now how does this make me feel? The chemo is dripping directly into my vein. She dons a hazmat suit just to disconnect the line. I'm a walking talking hazardous waste site! She said to drink a lot of water and that would flush the chemo out. That's good for me but what about the environment?

It was great to take a shower. My first since Tuesday when the port was installed. Good thing as I had a lot of visitors in the afternoon. Thanks for the turkey and soup Gail. Buster and I will be happy to see Ernie today.

Yesterday was rough. I spent most of the day in bed with fatigue and the big D. Very difficult to get food down. Hopefully I have the chemo flushed from my system and will feel better today. It is good to have Ernie home; Buster is no longer velcroed to my side. Sounds like he had a great gig and that the break did him lots of good. Thanks for taking care of me once again Sue, barrel of laughs that I am. A big thanks to Rosemary for weeding my garden yesterday. That was quite a job!

My friend Beth was telling me that she was sitting there with four other people getting chemo when one person vomited. Then the next person vomited. Then they all were vomiting. Then the nurse came in and vomited. Ha ha ha. Both Beth and her partner have had cancer and chemo and she said she does not know which is worse: getting the chemo or watching your loved one suffering.

Another day of Battle of the Bowels. I am fine at night and in the morning (when I write this). It is when Food is introduced to the System that the battle begins. Things were a little bit better yesterday so onward!

When I lost 20 lbs. the first thing to go were the boobs. Zap. Gone. Flat as a pancake. I am supposed to have my annual mammogram next month. This should be interesting. In all fairness, when you receive a cancer diagnosis it should make you immune to all other cancers and disease. One Whack in life is enough. But no, it is still sunscreen (especially with chemo), and all other screenings.

As I sit here and watch the birds I realize that I made an amazing discovery. I can actually see them if I put on my new bifocals. For years Ernie has been pointing out the various birds to me and I just nod and look interested. Now that I can actually distinguish them apart and have nothing else to do with my life, other than watch baseball, I find it quite entertaining.

I have an appointment with an oncology masseuse today at noon. I hope I feel well enough to go

A beautiful cool morning. I made it to the oncology masseuse. It was transformative. To have this alien,skeletal, diseased body gently and lovingly massaged moved me to tears. It was very healing and a turning point. I can get through this. I know I can.

All has been quiet on the DAD front. My sister is taking care of him at our cabin in Canada where he does not have access to his telephone. It gives everyone a break. Maintenance is being done on his house which is impossible when he is there. His caretaker, Donna, is moving into the basement with her adopted four year old granddaughter. My Dad is used to having Donna's undivided attention so it will be interesting to see how he takes to having a four year old

around. Production doubles at ORRCO when he is not over there at "work" everyday. His idea of work is sitting down in your office with a cup of coffee and a biscuit, clearing his throat and saying: "Nancy, there is something I want to talk to you about." He then makes the rounds to everyone's office and works his way through the plant. He has the secretary writing daily letters and making phone calls to the Secretary of the Navy, the Chamber of Commerce in every city, a lady in Utah who sells survival food .... His list is endless. He absolutely will not take "No" for an answer.

Nothing on the menu today except to eat. I must eat!

Yesterday was another tough day. I force myself to walk as far as I can twice/day and to eat what I can but other than that there is not a whole lot I can do. There is a war raging in my gut. Ernie's stomach rumbles and grumbles in sympathy wanting to jump to my defense. Ernie likes my new sleeping schedule-10 hours/night plus a morning and afternoon nap. Buster has decided there is no point in leaving the bed except to eat.

As I force food down I can't help but think of force feeding a goose for foie gras. That must be very uncomfortable to say the least. I have tasted foie gras when in France. (California recently banned it.) It's nothing to get excited about. I'll take a Chicago hot dog any day.

I am going to the dentist today. Chemo can affect your mouth and it is best to keep a close eye on it.

Yesterday was better. Systems are back on track. The dentist said the chemo is drying up my saliva which is why I often feel like I am chewing cardboard and my mouth glues itself shut at night. He gave me a rinse to use. Orrco is close by my dentist so I had a very nice visit with my brothers et all. Strange to be out there after so long and to see my Dad's house empty as he is in Canada. Hopefully I'll be back before long.

I received a really nice note from the masseuse. She said how much she enjoyed working with me and that I had an amazing spirit. When I called for an appointment they said she was not taking anyone new but she is taking me on a regular basis so I figured she enjoyed it. I'm so grateful!

My cousin, Lynn Wolff, is flying in from Boston today to stay with me as Ernie must leave for the weekend. Don't worry Sue, she is not taking your job. I see a urologist this morning to have a stent and catheter removed that he installed during surgery. I don't think this will be a big deal (famous last words).

When I went to have my stent removed yesterday, the urologist said: "You did really well with this. Most people are miserable and always calling my office". I felt like saying when you are already so miserable, what's a little extra piled on. But maybe the stent has been causing some of my problems. I hope so. I did get tested last week because it felt like I had a bladder infection but it came out negative. Nobody ever mentioned the stent or that it had side effects. I'm just glad Dr. Z remembered to tell me it was in there. It is a six inch piece of thin plastic tubing with curly ends. The dr. put me on Cipro.

I had more energy yesterday and a better appetite but my abdomen hurt all day

Hope everyone had a good weekend. I felt great yesterday and had two long walks in the park and ate a lot. Lynn painted each of my toes ten different colors, including polka dots. If I need a laugh, I have no farther to look than my toes. We watched Glenn Close in Albert Nobbs-quite a performance. Ernie made it home tired but happy. Says he wants to work more so I had better get back on the job!

Chemo #2 is Thursday. While I am feeling better I want to get Ernie enrolled in Medicare and supplemental insurance. He turns 65 in September. There must be a lot of money in the insurance because we have been getting solicitations in the mail daily for months.

Another good day. It's amazing how the stress level has decreased in the household with my improved health and spirits. My friend from high school, Beth Miller, and her partner Kathy visited yesterday. Both of them have had cancer and been through it all. Chemo comraderie. I like to hear their story, keeping in mind that everyone's cancer journey is unique. Right now they are just happy to escape the heat, humidity and traffic of Washington DC.

My next visitor was DAD! He stopped on his way home from Canada bearing gifts of peaches, blueberries, melon and delicious Canadian cheddar cheese. One thing I can eat no matter how poorly I feel is a grilled cheese sandwich. I have to admit it is good to see him again, stinky cigar and all. His caretaker moved in while he was away. There is just no way he can live alone anymore. His 91st birthday is

Aug. 8th and he is planning his party-a cookout.

Difficult to believe it is August already. Time flies whether you are having fun or not. The only way to make it stand still is to get in the express line at the grocery store.

Yesterday was great. I am eating more than Ernie now. He has lost a good bit of weight. I'll have to start giving him my Boost. I walked a lot, did Tai Chi and took care of getting Ernie on Medicare and a supplemental plan. That's a load off my mind. We are going out for lunch today as chemo is tomorrow and Ernie leaves for Maine on Sunday. He teaches every August in Bar Harbor. I go with him and book a couple of gigs around the state. I really miss not being able to go with him but Maine will be there next year. We canceled two gigs as he does not want to be away any longer than he has to.

DAD is back to work. He goes into Keith's office, shuts the door, sits down and says: "There is something I need to talk to you about" and proceeds to discuss an issue that we have already been over a hundred times. Everyone's blood pressure is creeping back up.

Full moon tonight.

Yesterday was filled with visitors, phone calls and gifts of food. We are enjoying every morsel. Thank you! I am going into chemo #2 fattened up and stronger. It has been seven weeks since the surgery. Join me in saying "Good riddance" to a bunch more cancer cells.

I had a phone call from the home care agency that removes my pump wanting to know how I was doing. Well the entire conversation was a computer. At the end I was able to leave a comment and I said I was never talking to a commuter again and if they wanted to know how I was doing they could put a person on the phone. Geez...

The gym and pool I go to is the Jewish Communtiy Center in Squirrel Hill. I am so fortunate to live a mile away from this marvelous facility. Over the years a caring bond has formed with the women in the locker room and several of the guys in the gym. The day before surgery Chloe had that locker room rocking and rolling in prayer. Chloe is confined to a wheel chair and goes through heroics to get there and get into the pool. The lift that places her and many others into the pool has been broken now for a month. I am going to over there and have a sit in until they fix this for these folks. Chloe calls me at least once a week and prays for me. She is in a great deal of pain and very poor but has such a compassionate heart.

Hi ho, hi ho it's off to chemo I go.

Long day yesterday. First we waited on the wrong floor for the bloodwork. Whoever designs casinos designs hospitals. Once you're in you have no idea where you are. At least hospitals have lots of toilets whereas in casinos you only pee your pants if you hit the jackpot.

Then the nurse could not get my port to work. I am getting more and more anxious and I say: "I'll stand on my head if I have to." Just then she lowered the recliner so I was down headfirst. I am cursing the port and she is laughing. Still didn't work. Finally she got it going by maneuvering the needle around. Ouch.

Then we had a two hour wait to see the doctor. Doctor=Wait. Synonym. They said I lost five pounds which I find very hard to believe. They perscribed steroids. Blame it on the rogue DAD gene but I balk at every new perscription I get. Nevermind the fact I'm on chemo. By this time we missed the lunch cart in chemo and were starving. I didn't pack food this time. They found us a dried up turkey sandwich. Ernie went home then and I had a two and a haf hour drip. It doesn't take much to throw my system off and I had quite a bit gas pain and stood a

good bit of the time. My chemobuddy asked me what was wrong and

I said GAS. That is all you need to say to elicit nods of sympathy.

So I got home very tired and with stomach pain. A few side effects are more pronounced. I cannot drink or touch anything cold. My voice is weak. Nothing too bad yet.

I slept like a log for 10 hours. I was exhausted. I got on the scale this morning and the doctor's scale was right, I have lost weight. Time to get serious about this. I am sitting here drinking room temperature Boost. I spent my whole life trying to lose five pounds and now I can't believe I cannot gain five. At least I am not having the big D with this round of chemo and last time I had six days of it. I woke up feeling great yesterday - went for a walk in the park, pulled some weeds, ate. I thought maybe this pump wasn't working. But around noon I crashed and that was it for the day. We watched the Artist - great film. Won the Oscar I think.

Today the nurse comes at 1:30 to don her haz mat suit and disconnect the pump. Yea! Sue is coming tonight and taking Ernie to the airport tomorrow morning. He is very anxious about leaving for Maine.

Just spent my first night alone. It was a little lonely at first but I am happy to feel somewhat independent again. I am driving myself to my massage this morning. Another first, all of one mile away. Sue said there was a remarkable improvement with this chemo over the last one. Cousin Marilyn is visiting today and my 7th grade homeroom buddy, Sherra, is arriving this afternoon for two nights.

Ernie sounds great up in Maine. I hope he is breathing in all that crisp, clean air off the ocean for me.

Big doin's in my family this week. The first wedding in the next generation. My niece Kelly is getting married on Sunday and I am invited to all the surrounding activites. We'll see I am up for.

I am feeling very happy to get through this chemo with bearable side effects. With a major surgery and two treatments behind me with no complications I feel I am on my way. Everyday I am thankful for the miracle that my diagnosis was changed from ovarian to appendiceal. In thirty one years of surgery, Dr. Z has never seen that happen. All your prayers are working!

My deepest condolences to my cousins. Jennifer Orr passed away five months after being diagnosed with ovarian cancer. Age 42. Marilyn waited until she saw me yesterday to tell me. She took me to my massage (which was fantastic) and then we just spent a quiet afternoon watching the birds and talking. Very sad.

Sherra arrived full of good cheer and presents but I was a party pooper. Went to bed about 7:30 with stomach pain and very tired.

Happy Birthday DAD! 91 today. My brothers are cooking out for him. He likes his steak CHARRED on the outside. And lots of homemade ice cream and cake. Keith's back is still sore from cranking the ice cream on the 4th of July so he bought an electric maker. Sherra and I plan on making guacamole and driving out this afternoon with Buster.

I was very fatigued yesterday and the big D was back in full force. I rested in the morning so I could make it to the birthday cookout. Thankfully Sherra was here to drive me out. As always it was healing and wonderful to be surrounded by family. My Dad was in his glory. Smoking cigars, drinking gin and eating his favorite meal of charred steak and corn cooked over the fire with cake and homemade ice cream. Although he has been driving everyone crazy, it was good to see him happy and well cared for. So far things are working out with Donna, the caretaker, and her granddaughter moving in. I don't know how she takes it.

Dr. Z. called! I can't believe it. Just checking in. He was very chatty and caring. What a unique individual and compassionate doctor! I wrote a letter to the CEO of West Penn Hospital about him. He hadn't heard about the letter.

Ernie called from the summit of Cadillac mountain as he watched the sunset last night.

I used to roll out of bed and have a strong mug of coffee and cream before anything else. Now it is decaf green tea. I know, I know. Sounds terrible. I tried coffee not long ago and it wasn't the same so it is probably not a good idea right now. Ernie found me a delicious, fragrant tea. I don't miss the caffeine but there is nothing like the aroma of fresh ground coffe.

Yesterday was another day of big D. Sherra left in the afternoon. Thanks for helping me through a couple of difficult days Sherra. I managed to go pick up my CSA box myself. Barb has been getting it for me but she was at the ballgame. I have to give most of it away, especially without Ernie here. One thing in it I can enjoy are the fresh eggs and I am going to cook one up right now with my dad's Canadian cheddar cheese. No matter what else I have been forcing myself to eat and drink nutritional shakes. I am feeling better this morning and hope I have kicked the D. It totally drains me of calories and energy.

I brought home a huge bag of mail and paperwork from Orrco and will start plowing my way through it. I have yet to receive a bill for anything that has happened in the past two months. This is so strange.

Kind of eerie.

Have a great weekend Campers! It seems like everyone I know is either on vacation or hosting guests. Marilyn said when I started feeling restless , which I am, it was a sign I was healing.

The weather provided a perfect backdrop for a stunningly beautiful wedding held outside in the boondocks about 30 miles north of the city. Kelly was radiant and that's all matters. Keith gave a heartfelt toast that reduced everyone to tears but him. Nice going brother. I had the pleasure of sitting next to DAD at dinner. He could not get a grip on who was paying for dinner and that took an endless amount of explaining complete with alll of his facial expressions and superlatives. We left it that I would take him to the bank today so that he can withdraw enough money to pay for it. (not likely). He insisted repeatedly that he take home a huge bowl of red skin potatoes that was left by his plate. The last wedding he was at? He had a total meltdown when he couldn't get a margarita. He made such an embarrassing scene that someone had to drive him home and miss dinner. He has not been invited to a wedding since and margaritas have become an inside joke at all family get togethers.

As for me I held up well eating and drinking everything and I made it through dinner before having to leave. I want to mention that Ernie and I were inspired and moved by Bea, RoseAnn's mother, who was there against odds with stage IV lung cancer. She is no longer getting chemo and is going for quality of life towards the end. A beautiful woman.

I am going to try and make it to the brunch this morning. I may as well pack in all the fun I can before chemo no. 3 this week. I told Ernie I was going to take a break from my body and go chill out at a beautiful lake somewhere and just leave it behind.

We took Buster to the brunch and it was fabulous. RoseAnn was still smiling and laughing after four or five days of entertaining. This must be a Greek trait as you do not see this on the WASP side of the family. When company arrived when we were young, all of us kids made a mad dash for the third floor and hid there. That hasn't changed much.

This is one of the best Small World stories I have heard. One of Ernie's guitar students at the camp last week gave him a ride to the Bangor airport. William is a classics professor at Swarthmore and soon they were discussing Italy. Ernie and I know two people in Italy, Bruno and Mariagrazia whom we stayed with on their olive farm in Tuscany. Mariagrazia is an archeologist and heads a museum in Grosseto. Well it turns out that years ago William met M. at a dig while a student at the American Academy in Rome and Mariagrazia was the love of his life. What are the odds of that? (William just sent M. an email about the incident so I feel free to tell the story.)

I am off to chemo #3 and have been eating and drinking nonstop since I got up. I am determined to have my weight at least where it was the last time. I thought of filling my pocket s with coins but ...

I made it to the JCC yesterday (Jewish community center). I did the warm pool arthritis class. Let's just say it was Very Slow and quite an age difference between me and the rest of the class. But I knew a few of the ladies and it felt so good to be moving around in the water. The main benefit was psychological.

Ernie and I had a wonderful celebratory lobster dinner out last night. We were joined by Michele who is here from Maine for her son's wedding this past Sunday. I look forward to having her around for awhile. She brought me some special whey protein made by a doctor in Maine. That out to cure me.

My niece is already at the doctor this morning having surgery on her knee for a torn ACL. She gets to return to Penn Staye on crutches for six weeks. Hope all goes well for you Sara!

gotta run. Not looking forward to this. Gotta kill of those bastard cells!

I slept in. I didn't sleep last night because I am trying to not take a vicodin every night so I didn't. Yesterday, a 2-1/2 hour drip morphed into 6 hours at the HCC. My white blood cell count is low so they needed to get permission to continue with the drip. They did but I have to have shot on Sat. when the nurse removes the pump. It "pops" the wbc from the bone marrow to the blood stream. Just like that. My weight was exactly the same. My secret weapon? Avocados. I eat a big bowl of freshly made guacamole every day with chips. Divine and good for you. BTW, the chemo regimen I am on is the same one they use for colon/rectal cancer. Appendecial cancer is too rare to have it's own.

The doctor said "no" to having a root canal next week. He doesn't want the risk of infection. This means I have to chew on the right side of my mouth to keep my tooth from hurting. This just makes my ability to eat all the more difficult. Also he said to cancel my mammogram and bone density test. He said: "What for? If your mammogram is positive we are not going to do anything about it anyway. If your bones are weakened we are not going to do anything about it. And your kidneys are fine". (The urologist who removed the stent requested a renal scan). A sobering thought. Until we beat this, there is no need to be concerned about anything else.

Yesterday was a quiet day spent mostly in bed reading and dozing. I did get in two long walks. I look on walking and eating as matters of life and death. You do it no matter you feel. I had phone calls from my family which was nice - hadn't heard from anyone since the wedding. My friend Carol said she was reading a book about the history of cancer so I ordered it expecting it to be scholarly. It turned out to be a fascinating page turner and a Pulitzer Prize winner: The Emperor of all Maladies by Siddhartha Mukherjee.

The nurse removes my pump today at noon. I hope my WBC shot is delivered by then so she can give it to me. Otherwise I'll have to give it to myself, knowing it could give me flu-like symptoms for two days. I'll think I'll try and make it to the Farmer's Market this morning and get Ernie a nice steak and hopefully the olive oli man will be there. He sells great local cheese too.

 

What a gorgeous day yesterday. I made it to the farmer's market and hung the laundry on the line before pooping out for the day. The shot of neulasta arrived overnight on ice in time for Nurse Hazmat to give it to me. So far I am not having side effects from it. I am very fatigued and have tingling in my finger tips. I can't drink or touch anything cold.

Michele swooped in yesterday and chloroxed everything. She made fish chowder and brought us a Cuisinart hand blender. What a great gadget! She made an almond butter smoothie with almond milk, peach, Maine whey powder,etc. 450 calories. Ernie made guacamole and grilled cheese sandwiches so I will look like a pumpkin in no time at all. Thanks Gail for dropping off the frozen stuffed cabbage soup. I am totally spoiled.

Ernie is having a tough couple of days. For my past two chemos he was out of town after the initial drip. We just pick each other up and soldier on hoping the poison is doing it's job. He is reading that book I mentioned yesterday and is really into it. Today he goes to the studio to begin recording a new cd.

Dumb, dumb and dumber. I ate a huge tomato, cucumber and onion sandwich for dinner. Suffice to say I paid for my indulgence dearly last night.

Thank you Dr. Wiles and Becky for a delicious lunch at Paris 66. Thanks Tom and Rosemary for doing all the yard work last evening. It looks great! I am really looking forward to my massage this morning. The thought of this reward eases me through the chemo.

A call from home this morning. DAD was on a rampage yesterday and out of control. He is just impossible to deal with. It is so frustrating. Maybe the meds can be upped. It is a shame. He has everything you could possible want and just doesn't appreciate it. Just demands more.

Yesterday was a bit of a setback with the big D and a weight plunge. Ernie kept feeding me grilled cheese sandwiches. Very fatigued. My massage was fabulous and I am still feeling it's calming, healing effect.

I plan on going to the arthritis swim class today and seeing my friends at the JCC. Hopefully all systems will be back to normal! If anyone has a favorite shake or smoothie recipe, please send it along. I love my new hand blender.

I went to the arthritis swim at the JCC but a kid pooped in the pool so there was no class. I'll be glad when all these kids are back in school. The park has been invaded by hordes of jogging teenage girls.

But all my friends were there and I soaked up all the hugs and kisses, especially from the two old Russian ladies who cannot speak English. I was very moved and touched by my welcome. I hung out at the machines awhile with Gail and Cil and did a few without weight.

Late afternoon I got hit with an attack of nausea, stomach pain and D. This is so discouraging. I have to admit I am sick and tired of not feeling well. Literally. One day you are happily cruising through this life and the next day you live in Cancer World, a foreign, frightening country and things are never the same. Well I had my first good night's sleep in awhile and hopefully today things will be better.

Yesterday was the worst day yet for the big D. I stayed in bed for the most part and tried to stay hydrated, even ate some ice cream. Nutrition has gone out the window. It's a matter of survival now. I am taking double the dose allowed on the box of immodium (per my doctor). They don't seem concerned. Said to call back if it persists. Well it is persisting. They know just how much chemo to give you without killing you. I am going to stop eating until this passes. It just goes right through and wreaks havoc on my system.

I read in the paper of all the people in Africa dying from diarrhea from cholera and am thankful I have clean water, smart water, coconut water,etc.. I contacted a nutrutionist that came highly recommended by another cancer patient. As soon as I get back on track I have to get serious about rebuilding.

Whew! The big D ended yesterday morning and I felt miracuously better. Perhaps overly ambitious, I drove out to work to take care of some things and visit family. I wanted to get some smaller sizes of clothing from my nieces as all my clothes droop. I'll see how a teenagers style looks on my boney butt. Michele dropped off groceries to put me on a BRAT diet (bananas, rice, applesauce,toast). I just had white toast, banana, applesauce and apple juice for breakfast. For lunch I am having a dry Beefeater martini on the rocks with blue cheese stuffed olives. That is Phase 2 of the Brat diet, right Michele?

Since I know now when the big D will hit, I will go on this diet as a preventative measure next time.

After that harrowing day, I decided I need to join a cancer support group so I don't feel so isolated. Ernie thinks it would help him also. I am sure there are lots of them around.

Other than a quick morning trip to the market, I spent a quiet day marshaling my resources. I am a continual fart machine. My goal is to produce enough gas to heat the house this winter. I have a few good days ahead of me and must use this window of opportunity to get my weight back to where it was two weeks ago.

Because this is the Internet and many people are reading, I have to censor my blog-nothing illegal, immoral, offensive or politically incorrect. For instance, my dad had a date last week. I could get a lot of mileage out of this story but I don't want to embarrass anyone. So you just have to use your imagination sometimes.

Thanks B&K for bringing Ernie a new hummingbird feeder. The bees have invaded Ernie's feeder and the hummers are unhappy. Ernie has been obsessed with getting rid of them - this is the first time it has been a problem.

My big outing for the day will be the street art festival in Shadyside. Michele is working there. She is the kind of person who shows up from Maine and immediately has three job offers. Everybody wants her.

I have stayed away from the internet but yesterday, when I looked up Mario Lemieux to see what kind of cancer he had, up popped a page for a support group for people with appendiceal cancer. Www.pmppals.org. Deciding to join, I had to enter my diagnosis and realized I am not sure what it is. There are at least six different kinds of this cancer. On June 4th, I had a sonogram. On June 5th, we are sitting across the desk from Dr. Z, and he says I am not likely to live three years (thinking I had stage III ovarian cancer). It was like getting hit on the head with a baseball bat. Gotta be #1 on the stress chart. He only told me because I asked. So I decided I wasn't asking any more questions and especially not going to cruise the Internet. As time goes by I am curious and can absorb bits of information but I still do not click on prognosis or statistics. I just kind of circle around that. I know what I have is not good or I would not be in Caringbridge Camperland.

Ernie and I have taken to hanging out with Mother Mary. On our evening strolls we often find ourselves at St. Bede's where Mother Mary is framed by rhododendron and there is a covered swing in front of her. She is painted GOLD. So we sit there on the swing - a WASP and a Jew with Mother Mary contemplating life's mysteries. My only experience with the Mother has been with the Christmas Story so it is nice getting to know her better.

Yesterday was a feel good day. Hallelujah! Finally! It's a good thing because tomorrow is chemo #4. I'm sitting hear watching hurricane Isaac pound New Orleans.

It was sad saying goodbye to Michele who is driving back to Maine today. She has been unable to sell her house there for two years now. Very frustrating. Lynn Wolff called to tell me all about her safari in Kenya. That has never been on my bucket list but it does sound like an amazing trip.

DAD is coming in to take us to lunch today. I always tell him no but what the heck. I'm feeling good and can handle it as long as he keeps that frigging cigar in his pocket and doesn't whack the waitress with his cane. Taking him out can be a real ordeal because you never know what may set him off: What, no DRAFT beer? I smell GARLIC. This plate is COLD. I can SMOKE. I want ICE CREAM on that CAKE. And then the salad must be dry with no dressing, bread served immediately, milk not cream with the coffee, the steak charred and the meal will be returned if the plate is cold. On second thought, I am not going out with him today.

Another good day. Wow. Two in a row. It really helps to get in the right frame of mind to take on another chemo. I made it to the arthritis swim and the ladies were very encouraging.

Dad came in for a visit but we did not go to lunch as he had dinner plans. Got to get on his social calendar early. He was rather quiet and concerned. Was quite lucid and mentally sharp. Ernie and I went out for a nice dinner instead.

I am sitting here eating and drinking as much as I possibly can in an hour. Turned on the news and see that Robin, from Good Morning America, is leaving for a bone marrow transplant. My heart goes out to her. Well off to chemo #4 Campers!

The good news is that my white blood cell is back to normal and I do not need the shot this week. Also my electrolytes are where they should be which is a challenge with the D. (smart water and coconut water). The bad news is I lost another 5 lbs. and they will put me on a feeding tube if I lose anymore. My weight has gone from 145 to 119.

It is the 5-FU causing the D and that's what is in my pump right now. They eliminated the 5-FU booster shot they give right before I go home. Well wouldn't you know I had D the minute I got home whereas with the last two treatments I did not have D until the fifth day. The peripheral neuropathy ( from here on out referred to as N) is much worse. This is a sensitivity to cold in your fingertips. I picked up my

iPad this morning and almost dropped it. I dug out a pair of gloves. Ever try breaking an egg into a skillet with gloves on? I am typing this using the side of my finger.

Before my next chemo I will have a pet scan and ct scan to see if the chemo is working and meet with the surgeon. At least we'll know.

I have never bought myself ice cream. Does anyone want to suggest a brand? Ernie brought a pint of Hagen Daz vanilla and it is good with peaches. I got rhubarb in my CSA box and may cook it up to put it on ice cream. The N affects my throat so I may not be able to eat ice cream for a few days. Mom had a rhubarb patch and I made lots of crisp and cake with it. She liked it hot on a piece of buttered bread. Her crisp recipe is legendary and still shows up at any family get together. Easy to make and delicious. I tried replanting her rhubarb in the berry patch but the black walnut tree nearby killed the plants. As the tree was affecting our berries also we eventually cut it down (when DAD was out of town or we never would have been able to do it).

All things considered yesterday was good. No D, N dwindled and is not as bad this morning and fatigue was not overwhelming. I am looking forward to Nurse Hazmat arriving at noon to remove the pump. You know, none of the nurses in the chemo unit where hazmat suits and they are doing a lot more connecting and disconnecting of tubes then Nurse Hazmat. She only wears the suit once and then puts it in a box for me to take to the post office. Seems like a waste.

My 40th high school reunion is this evening do you think I should go? I really want to but don't want to push myself. Transportation is a bit of a problem. I'll see how I feel this afternoon. I get ambitious with plans in the morning and then start fading.

Nurse Hazmat arrived promptly and removed the pump. These visiting nurses know more than the staff at HCC. When I told her that, she said it is because people are more relaxed in their homes, she is there for thirty minutes and they talk. They tell her things they don't tell the doctor. She's right. I told her about a minor side effect I was having and she says everyone has that. ( a hiccup in the breathing now and then). When I said that in the doctor's office she just looked at me blankly and said tell me if it gets worse. Like she had never heard of it before.

I waited until afternoon to make a decision about the reunion and regretfully decided it would be too fatiguing and proceeded to doze for most of the day. Hopefully I will live long enough for the next one.

Maybe it was the big fried fish sandwich Ernie brought me from Wholey's in the Strip but I had the D with a vengeance at 2:30 am. I don't know what I'll do when cold weather comes and I can't open the windows, if you know what I mean. Ernie and Buster will move to the basement.

Any day without D is a good day in my book, although the steroids I 'm on for three days to boost my appetite don't allow me to sleep at night so I'm tired. I must have consumerd 3,000 calories yesterday between Ernie's grilled cheese sandwich and four cheese ravioli dinner.

The scale is edging upward! Has anyone heard of the Metabolic Typing Diet? I never read diet books and have never been on a fad diet but Sherra has been on this diet for a year with a consultant and says it has really helped her and I find the book quite intriguing. I meet with a nutritionist this week and I'll ask her about it.

And while I am spending money, I thought I would try acupuncture. Quite a few years ago I was addicted to a computer game, tetris 3D and my elbow swelled to the size of a softball. I got acupuncture and it really helped. Needless to say I have not played Tetris since although I indulge in solitaire.

Buster got me up about 4 am and that was it for the night. The Big D struck with a vengeance at 4 pm with much gas pain and agitation. I got it calmed down and was able to sleep. It helped watching Bogart and Bacall fall in love in "To Have and Have Not". I thought my weight had been going up but the scale showed otherwise yesterday so I am concerned. A nutrionist is coming to the house today. I just feel I am in over my head with trying to figure out the best diet.

I made it to the JCC and did the machines with Gail and Cil ( no weight). It was great to be back in the circuit yakking away like old times. And I swam 10 lengths! I can't tell you how good that felt to be back in the water, swimming next to Gail. All the ladies in the arthritis class were cheering me on. And you know what made me feel best of all? A woman in the locker room said: "Are you the Nancy that has been sick?". I said "Yes". She said: "Everyone has been praying for you and talking about you. You are really loved and supported here".

Nothing like the healing power of love.

Gotta get my laundry on the line early these days. I love the dwindling light of September.

Well now my hair is falling out. I thought this was one indignity I would be spared. They said it may "thin". I got a bald spot on top of my head. We'll see what happens The D has been controllable with immodium but the immodium gives me gas and cramps.

The nutritionist walzed into our house yesterday bouncing with health, vitality, youth and exuberance. She is a vegan. No animal products. She is into juicing, supplements and eating lots of greens. She said the biggest "No" is sugar-that it feeds cancer. Although not a vegetarian, I have always been into a plant based diet without sugar (except for what is in wine and beer). It is just since I've been sick that I have been eating things with some sugar, cheese, etc. trying to gain

weight. She said it was important to get a grip on the insomnia as much healing goes on at night. When she left Ernie went to the co-op to buy some things and I met my friend at Deez for a hot dog. (I told her I was doing that and I thought she would fall off her chair.) Hey, one last indulgence! Seriously, she has done work with terminal cancer patients and reversed their diagnosis. She works with doctors and teaches workshops for them. We were very impressed. We are not ready to go vegan-looking forward to that roast on Steeler Sunday but we are going to slowly start incorporating her suggestions into our diet.

Kale, chia seeds, hemp seeds, spirulina, sprouts, algae, enzymes ....

YUMMY! Pass the probiotics please.

For those of you who asked, my nutritionist is www.janetmckee.com. In the smoothie I am drinking as I type: unsweetened hemp milk, whey protein (just using it up, J doesn't like dairy), hemp protein, spirulina, wheat grass juice, banana, apple, blueberries and almond butter. That should put hair back on my head and make my cancer cells so disgusted they look for another host. They are like: Where's that ice cream?

I fell sound asleep during my one hour acupuncture appointment. Guess that's good. He told Ernie to come back six times so I will stick it out that long and see if it makes any difference. He is Chinese and doesn't talk so to every question I ask he says Yes. (Dr. Yoon in Monroeville.

I went to the movie, "the Welldigger's daughter". I loved it, the ultimate chick flick. As I was afraid of, I had a very difficult time sitting there for two hours. Mostly due to trying to control flatulence. I just can't be out in public. Dr. Yoon had to fumigate my room. Oh and we watch Hitchcock's "Strangers on a Train" last night. Very scary. Great film.

I slept straight through last night without aids! I wonder if the acupuncture is helping my insomnia. I had mentioned it to him. Also I asked the neighbors to change there exterior lighting as it shines into our bedroom. They were really nice about it.

I will not mention the unmentionable other than to say it is a sad, tired morning in Pittsburgh. Ok, for the Campers in Europe I'll just mention it once. The Steelers lost.

I made it to my Tai Chi class! It was very healing and wonderful to be back eith everyone. Stan gave me a great acupuncture exercise for my abdomen. I made it through most of the class then had to sit down. Then I was overcome with dizziness, sweating and Odiferousness. I feel the tai chi was working the toxins out of my system.

A beautiful day - we went to a the Fair in the Park. The best of the artist and crafts shows. Then the kitchen was filled with wonderful smells as a roast, then rhubarb crisp baked. Dad will get lots of leftovers today. My brother and I are taking him to Carbone's for dinner. Dad and I went there weekly but I haven't been there since

May. As you can tell I am feeling better. I plan on swimming today. All this activity does leave me very tired and I rest frequently. Trying not to think of the week ahead filled with tests, doctors appointments and chemo.

I have a pet scan and cat scan this afternoon to find out if the chemo is working. I have to go about nine hours today without eating. This is very difficult for me to do and not good as I have not been able to gain any weight even eating constantly. For the pet scan they give me radioactive sugar. I said: "That's wholesome". He said: "Don't worry. It has a half life of two hours and will be out of your system in ten hours". Oh great. Then I have to drink that scum for the CT scan. This is my third cat scan in three months and they cause cancer. Just shoot me. ( I give myself permission to whine as needed.)

Yesterday I felt good and did not need to take any immodium. I swam and went out to my dad's. It was good to see the folks at work. My brothers and I took Dad to dinner. I notice a decline in is ability to get around. He needs a walker but won't use one. I tried to put a lid on the cash situation. He always wants more (in case of a cyber attack he wants to be able to maneuver) but it just evaporates. So you have to fake it, he can't see the bills anyway.

I am going to see how much I can eat in the next hour. I already had my smoothie and an egg, tomato and cheese sandwich.

To take my mind from not eating we went for a long walk in the park and then to the summer flower show at Phipps. It was a picture perfect day and the show was awesome.

Ernie dropped me off for the PET scan and then went to Whole Foods on a mission to have a smorgasbord ready for me when I got home. I carried enough reading material to last me for a week only to be told I could not read while I waited because they did not what the radioactive sugar to go into my muscles. Sigh. I can endure anything if I have a good book. I had to lay comatose in a darkened room. They put a huge clock in front of me so that I could drink my second large glass of radioactive sugar in twenty minutes. There I was stuck with my own mind watching the minutes not roll on the clock. I was not raised to chant and meditate and have never been able to calm my mind despite years of tai chi and swimming. As Camperland starts to rumble with suggestions, I hand my mind you in a bowl of essential oils. I'll be Donald Duck. Quack.

Once in the machine and having an IV that shoots warm liquid in your veins and makes you feel like your peeing when your not he asked me what radio station I like. I said classical. So he turned it up and blasts Aaron Copeland in. Copeland is like listening to fingernails on a chalkboard. There I am once again, told not to move, arms stretched over my head, poison coursing through my body, stuck with this nerve wracking music. I admit I am not cut out to be a patient. I am considering a career change. With my growing expertise in torture, maybe the CIA. Just put the detainee in a hospital for 24 hours and he'll turn into Donald Duck and start quacking.

There was an article in the Sunday Times about flame retardant. Once again the government, its mighty wisdom, passes a law that flame retardant has to be added to everything so that a smoker does not burn himself up on the couch. So what if the flame retardant ends up in everyone's blood as a carcinogen. The author threw out all her furniture and had custom built furniture made.

 

 

NO EVIDENCE of CANCER! Haven,t met withndoctors yet. More later. We are sitting here sobbing.

So the good news is that things are as good as they can be at this point. The chemo is working. The cancer is most likely still there but it is small and doesn't show up on the scans. I am sitting here getting Chemo #5. One more treatment in two weeks and I am done with the first round of chemo. Then I will still have the surgery in six weeks after the last chemo, most likely followed by another round of chemo. It helps immensely to know that it is working. I will suffer through anything. I could have been told the cancer was not responding. The lady getting chemo next to me got her pet scan results this morning and it showed her tumor is growing.

I asked for my pathology report. I have stage IV appendiceal adenocarcinoma (moderately differentiated mucin-producing). The surgeon said all appendiceal cancer presents itself as stage IV but it is not the same thing as stage IV in other cancers. He cautiously used the word "cure" again. This cancer is not fed by blood, but through osmosis, which differentiates it from other cancers. There is no sign that it has spread beyond the abdominal cavity. My type of appendiceal cancer falls in the middle range; it is not the worst kind (signet ring cell) it nor is it the best kind.

We are feeling very relieved and joyful. Ernie is very emotional. He has been on the opposite end of the news when his fiance died of bone cancer. What a roller coast the past three months have been. I am so grateful for your prayers, healing energy and support. As the chemo person said, the biggest factor in prognosis is attitude.

Here we go - Drip,Drip,Drip. My friend now, Mr. Chemo. My thanks to all the people working today researching drugs.

Lousy night. The big D struck quickly and viciously. I took an Ambien (half strength) for the first time. The D trumped that. Wake up Nancy. wake up FAST! It is a good thing that Mr Chemo and I are now friends or Mr. Pump would be tossed out the window. Where is Nurse Hazmat? If you want to choose a profession where you are beloved by your patients, never have to be the bearer of bad news and you get to meet all the colon cancer patients in the area, become a Nurse Hazmat.

One can survive on water alone for a long time so I should make it to the Steeler game on Sunday. I need this Intellectual Stimulation since the Pirates tanked. Lousy bastards. This has happened every year for the past twenty years (right Mt. John Leroy Wolff?). That's OK, I am a tennis widow now. Do you know how long a tennis match lasts? Hours, days, weeks even. At least when I look at the TV the same guys are still playing.

With our great news yesterday, we strolled to the statue of Mother Mary and thanked her for listening to us. And thank you for all your wonderful entries yesterday.

The D was under control yesterday. The neuropathy is annoying. Very tired. Spent some time booking Ernie. I have a diminishing window of opportunity, due to grant cycles, to get him booked for next year. I have to concentrate on it this week. Cousin Jeff Wolff is picking us up for the Steeler game tomorrow, dropping us off at the gate and providing the tickets! I wonder if he will throw in a foot long hot dog into the deal. Just don't tell the nutritionist. Now I am sipping a smoothie made with broccoli sprouts, wheat grass juice and spirulina. A little tough to get down. Nurse Hazmat comes at 1:00 today. Yahoo! My favorite person. Bye bye Mr. Pump.

The one thing my mother wanted was for DAD to go to church with

her. He refused. Now he insists on having someone take him every week. The closer he gets to meeting his Maker, the more he wants to make sure he gets his foot through the pearly gates.

Allow me to climb on my soapbox for a minute. If you have turned 50 and not had a colonoscopy you are making a huge mistake. Do you want to suffer what I am going through, flirt with death because of being inconvenienced? My 50th birthday to myself was a colonoscopy and I had another in May when I was having problems. It did not show this cancer. But colon cancer is much much more common than appendiceal although the treatment is the same.

I had that massage yesterday and was pleasantly surprised. For $29 it was pretty good. He was surprised too with the gas and was spraying air freshener which is worse. I am beyond being embarrassed by my gas - it follows me everywhere like Pig Pen in Charlie Brown.

Bad tummy and D day. I didn't go out to lunch with Ernie and his friends but they came here afterwards for apple crisp right out of the oven. Ernie prepared the apples for me before he left. I cook the crisp in cider so it hardly needs any sugar. My apple guy at the market suggested Jonathan. They worked out well and taste really good as an eating apple also. My favorite is Honeycrisp but they are about done for the season. As kids this time of year, my mother would be sitting at the kitchen table when we came home from school, peeling and slicing apples into a big aluminum kettle of salted water. We would grab them by the handfuls and she never cared how many we took. We wonder if spraying the apple trees contributed to her getting multiple myeloma.

It was a gorgeous afternoon so we went for a walk through Nine Mile Run. NMR runs through Frick Park and was a sewage trap. In 2006 the Army Corp of Engineers restored it to the tune of 7.7million dollars-the largest restoration project in the US at the time. I thought that was a ridiculous amout of money to spend but I have to say it is magnificent and a treasure to the East End of Pittsburgh. The problem of storm runoff continues.

I slept straight through for ten hours last night and what a different feeling it is to awake refreshed. Very bad, relentless gas yesterday. There was no escape. I went to Tai Chi and it was so uplifting to be there, exactly where I needed to be. It affects my life and healing in so many ways. DAD called and wants to now when I am coming out. He is working on a project that is driving everyone crazy and his caretaker sent me a plea to come up with a distraction for him. I have the perfect idea: have him build his own coffin. I have talked with him in the past about this and when I brought it up again he thought it was a great idea. Hopefully this will keep him out of trouble for awhile. Ernie says just so he doesn't build me one.

CHANGE of PLAN. My tooth was excruciating yesterday and I won't tell you how many pain killers and advil I had to take to sleep. I called Dr. Chemo and said I just had to have this root canal done so he postponed my chemo until next week and put me on Cipro. I am having the root canal this morning. My dentist said he was being overly cautious but one does ot argue with the doctor. This is going to be my last chemo treatment for this round and I just want it over with. At least I get a bonus "feel good" week.

I took Dad out for dinner and somehow he managed to put his hooded jacket on upside down with the hood flapping over his butt. He didn't want me to change it so he just waltzed through the restaurant like that. After 65 years of dining there, they know him. He asked me why I am getting chemo? Does he forget? Doesn't understand?

Kind of strange this morning. I should be going in for my last chemo, instead I have a day(s) of feeling good. What did I do to deserve this? I did my best to sabotage this. My root canal went just fine yesterday. But a couple of hours later I made the mistake of eating while my mouth was still numb and chewed my lip and the inside of my mouth. Was that stupid or what! Good thing I am on Cipro after all. It is still swollen and sore. Dumb,dumb, dumber. At least I didn't eat my lip.

A Bed, Bath & Beyond is next to the Endodontist. Having never been in one, I decided to look and was amazed at all they had. I bought Ernie a corer (for his birthday ha ha). He used it making apple crisp and was thrilled. (or maybe it was because I didn't make him peel the apples this time). Ernie is very easy to please. Some of you have asked for my apple crisp recipe so I will put it in an extra post this morning. With Ernie helping in the kitchen I can begin to cook simple things. Yesterday we made cauliflower soup with the recipe on the Cream of Buckwheat box. It was delicious. Today is pesto day. Gail is bringing over ribs. I'll see what is in my CSA box. It is amazing the amount of our time and resources we put into eating. From grocery shopping to putting away the washed dishes or going out to eat and spending time and money. Sometime in my life, I want to try a Big Mac.

My day is not structured like it used to be and it seems to evaporate without my getting much accomplished. My mouth Is still sore but healing. I am concerned about some hard red spots on my incision and may call Dr.Z. He called last week but I was on another line. Damn!

I am wondering if it is from the sit ups I did with the personal trainer but that was at least ten days ago.

Ernie wand I were to be in France this month. We joke about it on our morning walk: who would want to be in Brittany when they could be in beautiful Frick park? So we are going on a trip today! All the way to Moraine state park an hour north of here and staying at a B&B for one night and visiting the friends who introduced us 16 years ago near Meadville. I have not been away since this started. Taking advantage of a few days without D.

I talk with other people who have this cancer through the support group I joined - PMPPals.org. Pals is anal about privacy so I cannot repeat any stories (Pals frowns upon Caringbridge). I would rather have hundreds of shoulders to cry on and a hundred arms wrapped around me in a hug than worry about privacy. But then I haven't been robbed yet. But anyway, the people with this, range from those who just have surgery, nothing else, to those who go through years of palliative treatments. (Those who die are not around to talk to.). I have not heard of anyone suffering with the side effects of chemo like I am. My theory is that my doctors think a cure is possible and are being

aggressive with the treatment. There are ads on TV now that say if you have abdominal bloating you may have gyn cancer and to see a doctor. I wish I had seen this ad.

You don't know how wonderful it is to have a stretch of days without the big D. I feel like a different person. We heard on the radio yesterday that the biggest cause of death for soldiers in the Civil War was diarrhea.

The JCC was closed yesterday for the upteenth time this month. Sukkot - fruit harvest- is the holiday this time. I took a couple walks with Ernie and did desk work. Today I have my oncology massage. My

masseuse is finally back. She called to say that she has had a sore throat for 10 days but has been working. I am going to take a mask in for her to wear - not taking any chances- but I don't want to give up the massage. I need to get a flu shot.

Every once in awhile I pull a pair of socks out that are darned in the toe and heel. My mother could make a pair of socks last forever. I had her teach me how to darn as I felt it is becoming a dying art. I do not have the patience to do it as well as she could. It came in handy when I had a severe moth infestation and lost my fine Irish woolens. I was able to darn a few sweaters that weren't so bad. I have a stack of sweaters that have been sitting there for two years needing darned. When I had hot flashes I stopped wearing wool and refuse to buy anything wool but Ernie's brother died and left some beautiful soft wool and cashmere sweaters. I put out hormonal moth traps yesterday.

Finally able to swim at the JCC today. Ernie and I are going out to diinner - one last fling before chemo tomorrow. I can get through it, the last one. Then I can start worrying about the surgery. I have an appointment with Dr. Knife next week and will have a long list of questions such as will I live through this. I miss the naivety of my last surgery. My surgeon Is Matthew Holtzman. After this chemo I figure I will be about halfway through the treatment. At least it is working so far.

I did a lot yesterday knowing I would be whacked with the chemo again. Met with the personal trainer, did light weights on the machines with the Cluck-clucks (have to catch up on all the news as the JCC has been closed), swam 26 lengths, did Tai Chi, took two walks with Ernie, prepared dinner as Ernie's back was too bad to go out and did some yard and desk work. OK, I'll admit it. I mowed the lawn. Don't yell at me.

I'm headed to my 6th, and last, chemo treatment. Not looking forward to this. At least I will have a good excuse to be a couch potato. BTW, my scans showed arthritis in my spine. I do not have back pain.

Had a long wait to see Dr. Chemo. He didn't ask how I was doing, just asked why I skipped chemo last week. I told him: root canal. Oh. Well come back in two weeks for blood work and I'll give Dr. Knife the go ahead from my end. That cost me $25, the insurance?

My chemo mate was a guy my age with tonsil cancer. He had a lingering sore throat and his doctor didn't do anything to help so he switched to another doctor who found a tumor on it, too big too remove. He drives an hour each way, every day for radiation. He only has three chemo treatments from which he feels no side effects.

I came home and ate, slept, ate again. My weight is 126. My low (at HCC) was 119. So that is good. I would prefer to be more methodical but there is not time.

Bye bye Mr. Pump! Done with this round of chemo, not the side effects, but no more poison for several months. I feel very fortunate to have come this far without any serious complications and to be NED (no evidence of disease). I still have those moments when I just can't believe this is happening but they are becoming fewer and fewer. Cancer is the new normal.

A very chilly morning. Might be the end of the tomatoes. Quiet day so I took the time to check into my insurance website. I realized the reason I have not received any statements is because they went paperless. It took me a half hour to log in of course and then trying to figure out the bills looks hopeless. I am not worried because they have been paying everything, I would just like to understand. It took me seven months and many phone calls to get reimbursed $213 for blood work in April. They said: You certainly are conscienctious!. The only thing more frustrating than having to have a password to get into everything is trying to navigate a phone menu for a person. Verizon is the worst. It took me a year and many hours of being on hold and threats to get back a $400 security deposit. And the countless times they slip charges onto my bill. Thieves.

After a marathon sopping spree at the food co-op (once a quarter you can take 10%off your bill), I assiduously prepared for my appointments tomorrow with Dr. Z and Dr. Knife. I combed through my pathology report (Greek to me) and all I could find out about the surgery. I have lots of questions. All of this managed to make me very anxious. It's a very serious, long surgery. Today I am going to the beauty parlor. It's been five months - I waited to see how much of my hair fell out. I think I should get half off for half my hair. Then I will check in at work and take DAD out to dinner.

On the bright side, Ernie's brother-in-law is in remission after a stem cell transplant for multiple myeloma. He has the same doctor as Robin on ABC news. My neuropathy is worse with this cold weather. When outside, my hands feel like they have an electric current going through them, even with warm gloves on.

Very long morning. I saw Dr. Z first - just a follow up appointment. He said he was in close touch with my doctors and getting all the reports. In his experience, he would not do the surgery but then he is a gyn oncologist. He said he would like to be present ay my surgery. It was great to see him.

Then a long wait at HCC to see Dr. Holtzman the surgeon. He said the cancer was there and it was my choice to wait for it to come back or agressively treat it with surgery and more chemo and hope to get it all. It is like snowflakes that drift everywhere and do not show up on a scan. Because it is contained within the abdominal cavity, they can treat it very aggressively. They will remove all the cancer cells they can find

and remove part of the colon and lymph nodes that were attached to the appendix. He does not know if he will have to take anything else out (like gall bladder, spleen, rectal area) until he is in there. He will not know my prognosis until he sees what's there. The best case scenario would be that he does not find any cancer. The worst case scenario would be a girl that he had this week that he opened up and could not operate on.

My surgery is scheduled for Monday Nov. 12th at Shadyside Hospital. The average stay is two weeks. He will be there the first week and then he is leaving for Thanksgiving. He is young, 39, but has a lot of experience and we really like him a lot. This is all very scary and sobering but I just want to get it over with. I have all of one month to get in shape and fatten up. I am allowed caffeine and alcohol. He said the hospital even serves beer if someone is an alcoholic. Well how about martinis? I may need something a little stronger. The big D hit this morning, at least it is predictable. Let me know if you have any questions.

Very long morning. I saw Dr. Z first - just a follow up appointment. He said he was in close touch with my doctors and getting all the reports. In his experience, he would not do the surgery but then he is a gyn oncologist. He said he would like to be present at my surgery. It was great to see him.

Then a long wait at HCC to see Dr. Holtzman the surgeon. He said the cancer was there and it was my choice to wait for it to come back or agressively treat it with surgery and more chemo and hope to get it all. It is like snowflakes that drift everywhere and do not show up on a scan. Because it is contained within the abdominal cavity, they can treat it very aggressively. They will remove all the cancer cells they can find

and remove part of the colon and lymph nodes that were attached to the appendix. He does not know if he will have to take anything else out (like gall bladder, spleen, rectal area) until he is in there. He will not know my prognosis until he sees what's there. The best case scenario would be that he does not find any cancer. The worst case scenario would be a girl that he had this week that he opened up and could not operate on.

My surgery is scheduled for Monday Nov. 12th at Shadyside Hospital. The average stay is two weeks. He will be there the first week and then he is leaving for Thanksgiving. He is young, 39, but has a lot of experience and we really like him a lot. This is all very scary and sobering but I just want to get it over with. I have all of one month to get in shape and fatten up. I am allowed caffeine and alcohol. He said the hospital even serves beer if someone is an alcoholic. Well how about martinis? I may need something a little stronger. The big D hit this morning, at least it is predictable. Let me know if you have any questions.

It was a beautiful afternoon and as we took a walk in the cemetery and were sitting on a bench overlooking a pond we got a phone call that Bea (Lamprinakos), RoseAnn's mother passed. A beautiful soul. I will miss her weekly cards and inspiration.

found I miss making my daily entry. I have my own reality show here and it's fun and therapeutic too I think. But for now I'll stick with Mondays.

Rough weekend. Sick stomach, gas, toothache and no big D until last night. Still taking penicillin for the tooth. I see my dentist tomorrow.

I watched videos this weekend on my surgery, including the HIPEC procedure (hot chemo bath of the abdomen). Depressing and scary. A third of patients have a serious complication and a third have to get an ostomy (reversible at least). Ignorance is bliss. I am not going to read anymore about it. It will be what it is.

Right after I made my post on Friday I got a phone call that DAD was taken to the hospital by ambulance Thursday night with back pain. After a lot of tests they found no cause for the pain but that he has a pulmonary embolism and blood clots in his leg. They will do a minor procedure installing a filter so the blood clots cannot head north and release him to a skilled nursing facility for rehab. Hopefully he will be home in a week or two. They will have to get the back pain under control somehow.

I went to my dentist on Tuesday and he said to have my tooth pulled immediately. One root canal down the drain. I found an oral surgeon to do the nasty deed the following morning in Greensburg. My tooth hurt like heck all that day and is still bothering me. Guess I will have to go back. The amazing thing is that the endodontist is giving me a full refund for the root canal. It wasn't really his fault. I think people feel sorry for me because I have cancer. Well I may as well milk it for what it's worth. I highly recommend this Endodontist, Dr. Klepsky in Aspinwall.

DAD was transferred from the hospital to a nursing home on

Saturday. Naturally he is not happy there (too many old people) and wants to come home. I don't expect him to be there long, especially if we can arrange adequate PT care for him at home. I have not been able to visit him due to my depleted immune system. I am having bloodwork done tomorrow morning so that Dr. Chemo can release me to Dr. Knife for surgery. Hopefully I can be given the OK to visit DAD. It is taking me a longer time to recover from chemo than I expected, maybe it is because of the tooth. I am fatigued (couldn't be the late night Steeler game) with the big D now and then. Having trouble putting on weight.

Countdown: 21 days until surgery

Dr. Chemo said not to go to the nursing home to visit DAD so my

brother got stuck with getting him his dinner. DAD refuses to eat with

the other OLD people and has to have his dinner served in the

employee cafeteria which means someone has to be there for every meal. It is only for a few more days so we'll let him have his way.

I am calling today to arrange for home PT and OT care.

Dr. Chemo said I did really well with the chemo. When I expressed

my fears of surgery he said to be happy I was a candidate, that many people were not operable. He said Dr. Knife was a Patriots fan so I am looking for another surgeon.

We visited a relative in the hospital. She just happened to be next to the room I was in for nine days. That was eerie. A nurse said: "I brought you up from ICU!". I thought Ernie was going to pass out. Then out in the street, a doctor I saw once recognized me even though I had all my winter garb on. I don't really want to be a known figure in the medical community.

I am going for a mammogram, even though Dr. Chemo said not to bother. Dr. Z insists so he wins. One week until my rendez-vous with Dr. Knife.

One of my pet peeves is when friends ask me to donate to their pet charity. I already make donations to my favorite charities. I am not asking you to to donate to this but am letting you know that Dr. Knife and his team have developed an internationally renowned program to treat patients with appendiceal tumors which also provides insight into treatment strategies for thousands of patients with other peritoneal tumors such as ovarian, colon and gastric tumors. If you are interested in specifics I will send you the information although I am probably the only person who finds this fascinating reading. Amazing what you find interesting when your life is at stake. If you want, and I will not know if you make a donation or not, send it to the following address and make a note that it is for Dr.Holtzman. It might increase my chances of surviving surgery! Ha ha. No pressure there!

The waiting is becoming unbearable. Please let's just get this over with. I cannot eat today, other than clear liquids, and must do a bowel cleanse. I feel strong, optimistic and am ready to go.

Dr. Z called Tuesday night and said he was also feeling optimistic and he would not say that unless he meant it. When I last saw him he gave me his cell phone number and asked me to give it to Dr. Knife and have him call him. I saw Dr. Knife immediately after and gave him the info but he never called Dr. Z. I decided to stay out of it. Dr. Z had said he wanted to be at the surgery. It was very sweet of him to call and tell me that I would be in his prayers.

I have had a painful shoulder and saw a masseuse and the chiropractor twice last week. It is still bad. Also I went to the dentist, had a mammogram, bone density test (.06% bone loss in two years) and pre-op bloodwork. I have been swimming 50 lengths. yea! I hope El Hunko gets here soon to do the leaves. Usually I rake them myself.

Ernie and I have been taking long walks in various parks with Buster. We went to the fall flower show at Phipps - it is the best one yet. I'd like to go to the museum today since there is no Steeler game. I have everything ready to go: my bag packed for the hospital, the guest room made up, the winter tires on, bills paid, etc.. I'll call DAD this morning and see how he is doing in Florida.

This surgery is it. When I first saw Dr. Chemo he said that people do not come to the Hillman Center from all over the world for the chemo, they come for the surgery. There was a column in the Post Gazetteon Wendsday by a guy in Kentucky who recently found out he had appendiceal cancer and is getting treated at HCC. He is a huge Steeler fan. At first glance, people thought I wrote the column. It was an uncanny resemblance.

I truly feel the love, support and prayers I receive from Camperland make all the difference in the world. I feel like I am wrapped in a warm, fuzzy blanket of love that will get me through tomorrow and the long recovery. My heart is full of love and gratitude. Have I mentioned the word "love"? That is what it all comes down to. It is all that matters.

This hospital isn't nearly as nice as West Penn. I am sharing a very cramped room that hasn't been cleaned. At least I have the window side. I feel sorry for my roommate. She is very unhappy about being stuck in her corner. I walk the hallways three times/day and notice the same stains on the floor. Their gowns, diapers and pants are not wearable so I,ve brought my own supplies from home. The pathology report is not here yet. Dr. Knife was to leave on vacation next week but he says he has scheduled four cases and that his wife is not happy about it.

A doctor came through at 6:30 am and said I was going home today even though my blood levels are low. Dr. Knife does not believe in transfusions and I guess they figure I can make blood marrow at home.

I am very happy to be home. I spent the evening in my recliner with Buster on my lap, on a soft blanket, with the fire going and pretending to read the newspaper but dozing. I made it through the night taking pain pills every four hours. Some differences from last time: I do not have a catheter (or any tubes), I have a little more mobility but shortness of breath and a rapid heartbeat, I have a dressing on the incision which a visiting nurse will check this morning. Both times I show a twenty pound weight gain which is probably due to my body retaining fluids.

What is upsetting me this morning is that Dr. Knife's office will not release my reports to Dr. Z's office. I realize that we have two warring health systems in Pittsburgh. I did not realize the extent these tentacles reached. If necessary, I will go over and get them myself and take them to Dr. Z.


Normally I would be preparing Thanksgiving dinner for my family. Not this year. I am house bound but it is a lot better than being hospital bound. They are collecting at Carbone's tonight but I doubt I can make it. Ernie will pick something up at Whole Foods tomorrow.

I've made a conscious decision to be optimistic and cheerful today. It is an experiment. Now a Steeler win this afternoon would help support this.

My sister Chris and her daughter Chelsea stopped by. Chris said she called DAD last night and he was upset that Donna, his caretaker, won't take him to the Aleutian Islands. He has been stuck on this for about a year - I even picked him up a map at AAA. As he is legally blind, I thought maybe we could trick him into something closer but I think he is to wiley for that.

I have about four phases I go through each day/night. In order: Sleep, napping, dozing and zombie. Xtreme Fatigue. I don't know about you but I am finding this cold weather very hard to adjust to. Fortunately Ernie has the patience to bundle me up in layers so that I can take a short walk twice/day. I order him around constantly so I just asked him if I should start saying "Please". He laughed.

I have about four phases I go through each day/night. In order: Sleep, napping, dozing and zombie. Xtreme Fatigue. I don't know about you but I am finding this cold weather very hard to adjust to. Fortunately Ernie has the patience to bundle me up in layers so that I can take a short walk twice/day. I order him around constantly so I just asked him if I should start saying "Please". He laughed.

Rough night. I felt like someone had a strait jacket around me and kept pulling it tighter and tighter. I could't get enough air.

I have a knifing pain in my side/back. If I am breathing heavily, it strikes on the inhale. A hiccup puts me into next week. I don't know if it is muscular or not.

Well my tests came out ok but now Dr. Knife wants a cat scan. I was on my way out the door to my massage. Now I have to cancel that (and pay for it). Pisses me off. Cat scans cause cancer. Plus the last time I had to drink the fluid for a cat scan after surgery I got really really sick. Guess I don't have much of a choice here so better chill out.

A troubling day. I painstakingly forced down breakfast only to throw it up. Anything after that came right back up. Sue went home. Then in the afternoon I got chills. Ernie had me piled under woolen throws and heating pads but I could not get warm. Ernie was freaked out at this point and I didn't want to go to the hospital (and miss the Steeler game?). Keith and RoseAnn came in and my temp was 102. We called the doctor and he said to take Tylenol. My temperature peaked at 103.4. Then broke. Hallelujah! I took tylenol last night and my temp is 97.9 this morning.

I will call Dr. Knife's office and let them know what transpired once I left the hospital on Saturday. Maybe I should call Dr. Chemo too. Hopefully these two doctors are communicating with each other.

called Patty, the P.A.. She said I just went through the operation from hell (burning my insides with poison) and that people say it takes about three months to feel normal and that I should just be easy on myself. That made me feel better. She said neither the ascites nor urine show any sign of infection.

I am anxious about the post-op appointment with Dr. Knife this afternoon.

It is a good thing I had Michele come over and wash my hair and get me nicely dressed for my doctor's appointment. The first time I was able to wear real shoes due to endema. Instead of Patty, the PA, Adonis himself arrived. Adonis is like El Hunko, only from the Netherlands. He was at my hospital room everyday after surgery and this weekend when I was in ER. I gave him a hard time for sending me for a cat scan and missing my massage. His badge says both phD and MD. And he is très très chic! He removed my staples while Knife looked on .... I thought I would have heart palpitations.

We did not discuss statistics, prognosis, etc. They both said I was doing extremely well after the surgery. In two weeks I have another appt with him and they will do blood work to see if my cancer markers have gone down. RoseAnn asked if repeating the HIPEC procedure would be an option in the future and he said probably not. The cancer has not invaded any organs but there is white plaque covering them which could have live cancer cells. He said to cancel my appt with Dr. Chemo in two weeks and reschedule it after the holidays. So I really didn't learn anything different but am feeling a little more optimistic. Each day I wake up feeling a little better than the day before.

Two nights in a row I had the same dream. I am sitting up in bed waiting for my body to disappear. Last night I actually said to Ernie: "well I guess all we have to do now is wait for our bodies to disappear". He says: WHAT?! I was dreaming but talking to Ernie. Really strange. In the middle of the night my coccyx hurts from being in the same position and that triggers the dream. Ernie says my body is wasting away from not eating.

As I was falling asleep last night, Erniie says: are you getting any better? My baby steps are trying the patience of the most patient. I was able to truthfully answer yes, because I did do better yesterday. I was able to eat at dinnertime which is a first and am walking farther and faster.

If you get tired of reading about my baby steps, my friend Carol has a thoughtful, inspirational blog, applehillcottage.org. Last night I read about her issue of accepting a nice item she purchased for herself for a remodeling project. This hit home because I do not even buy the item to begin with. How many times have I been to Target and Bed,Bath and Beyond? (once each and they are close by). Over the past six months I have been on the receiving end of your generosity big time.

This is difficult. I have convinced myself that the best way I can give is to allow others to give to me. How many of us know someone that is unable to receive? Makes you feel somewhat helpless.

My surgery was four weeks ago and I treated myself to a massage. Well when I laid down face up, I had a panic attack. There was no pillow under my head and it stretched my incision and I couldn't breathe. I tried calming myself until she came back into the room and got a firm pillow under my head. Then I wondered if I would be able to lay on my stomach. This took some maneuvering but didn't bother me too much. Ok so maybe I pushed it a bit but the massage did wonders for me. I was constipated and I asked her what she was working on on my feet and she replied that the points for my bowels on the bottoms of my feet were tight. Well it worked! Fortunately I made it home in time. My friend Cnris was here when I got back and we took Buster for a walk before dark which seems so early these days. Then as usual I could not eat dinner, drank what I could and went to bed early leaving Chris to fend for herself. Hopefully I can make it to the winter flower show at Phipps today. That is guaranteed to lift your spirits.

I felt sick all day, not just my usual late afternoon and evening feeling sick. Maybe I will call the doctor. I see Knife on Weds. when they will test the cancer markers in my blood. I have to admit this has us quite anxious.

I had to have Ernie drive me to the bank. While we were out we ducked into the Mediterranean Grill for lunch and I actually was able to enjoy eating a little. A big baby step towards normalcy and it made Ernie happy. I encourage him to go out but he doesn't. He says I look like I was in a concentration camp.

God I hope today is a better day than yesterday. Not to leave you in suspense but I don't know what my cancer markers are yet. A crisis came up that prevented me from getting them before the office closed.

I felt fine when I woke up but started feeling sick after breakfast. It continued to get worse. I had trouble dressing myself to get to the HCC. Then it was the usual wait, wait and wait. Knife did not know what was wrong with my stomach. Said 5-6 weeks after surgery was still a very rough period. When I asked him for a prescription for stomach medicine that someone recommended he said OK. Said my bloodwork was good and that he would call me with the cancer marker results later. I was in a lot of pain. Ernie dropped me off at home and went to get the prescription and I started vomiting and got the chills and was in so much pain I thought I would have to go to the ER. I made a heroic effort to call the doctor's office. Ernie came home and was petrified. I had him put a heating pad on my tummy and cover me with blankets and took the medication. Knife called. I don't know if it was with the cancer markers or he just returned my call. While Erne talked to him about taking me to ER, I had a big movement on the other end of things. I've had some problem lately with the Little c. but haven't thought it serious enough to mention. I began to feel better and dozed off. I am wondering if this could have been the problem. I escaped a trip to the ER. Scary.

Hallelujah!

My cancer markers are normal. This is great news. My CA-19 is 9.3. Less than 33 is normal.

My CEA is 2.3. Less than 5 is normal.

These were last tested on November 8 prior to surgery. At that time my CA-19 was 16.7 and the CEA was 6.3. so it looks like the surgery did some good.

Now this does not mean a cure by any means but it is the best we can hope for at this point.

I was in a lot of pain by dinnertime but things have been moving throughout the night so hopefully today will be good. I received an email from a PAL and she said it took three months to get her appetite back and a couple of months for her cancer markers to come down after surgery. I don't know how they can start chemo until I gain some weight back. I have an appointment with Dr. Chemo Jan. 7th. His staff called and said I could go on a scheduled trip to St. John, USVI on Jan. 23rd. I assume they won't start chemo until I am back. Assumptions can be dangerous. I wouldn't think of going otherwise. I follow Mark Fassio on Caringbridge He is the guy from KY who has appendiceal cancer and is a Steeler fan. He is undergoing chemo now and surgery soon. He had a column in the Pittsburgh Post Gazette and we have been in touch. I offered his wife lodging while he is in the hospital but then I remembered I would be getting chemo so I don,t know how that would work. Thank God for the Internet that I can be in touch with other people with this disease. It brings me immense comfort. When I was in the hospital, I got a package of cards from all over the world from patients who had the surgery and sending their support. Otherwise I would feel so isolated and have no idea what was going on. Even with the Internet it is hard to figure out the disease.

got up, ate a few bites of Cream of Wheat, vomited, went back to bed sick. I couldn't believe I would miss Chrismas. Then I rallied. I took a nausea pill which I had stopped taking the day befor per doctor's orders. (Knife's PA called me Monday to see how I was doing. At that point I was still OK. She said: "Nancy we have been assaulting you for five months. You have had two major surgeries and three months of chemo. This is an all out assault on your body. You must be easy on yourself.") By noon I felt well enough to make it to my brother's. Thank you Michele for the galvanizing phone call. I was even able to sit at the table and eat dinner. Miraculous. I thank Keith and RoseAnn and my family for the most beautiful and heartfelt Christmas I have ever had. To sit by the fire in a cozy chair with a warm throw and listen and smell and feel Christmas was very healing. I feel so very blessed. DAD was on his best behavior and it was good to see him doing well.

Person of the Year - Ernie Hawkins Caretaker and to all caretakers. Such a stressful situation stretching the boundaries of Patience.

Worse case scenario - almost. I woke up feeling bad, not a good sign. Rich and Sue arrived 11 am and I talked with them for an hour and a half, ate some beans and greens and went to bed sick. The pain continued to get worse. Sue Barnes and her sidekick mutt Callie rumbled to the rescue down Hwy. 79, in the snow, arriving 5pm. I am moaning in pain. The vomiting starts at 6:00. At 6:30 we call Knife's office and Pingpong is on call. (Knife's partner, Dr. Pingpank). Sue was calling him Pingpong on the phone and as sick as I was I had to laugh. He said he just finished surgery, to come to the ER, and he would meet me at the door. He said since my surgery was so recent I should come in. They are afraid of adhesions and bowel obstructions, more likely since I have had two surgeries. I said to give me thirty minutes. After about 25 minutes the pain subsided and I started dozing off so I decided not to go in but I was just about to go. Another call to Pingpong. He says OK as long as I can sleep but if it continues to come in. Meanwhile Ernie called and said he was driving home after his gig. I was not crazy about that idea but I sure was happy to see him at 2 am. I did not want him to come home and find me in the hospital. I thought that would finish the guy.

I have an appointment with Dr. Chemo on Monday. This is the last person I want to see, other than the undertaker. There is just no way I am going to start chemo yet. I put in a call to Knife's office (about my attacks) but didn't hear back from them.

Guess everyone knows about my cold feet. A friend has similar symptoms and her doctor told her it could be a B12 dificiency and to take a B12 sublingual supplement which I am doing. That would be great if that were the problem but I am afraid it is neuropathy from the chemo which could be permanent. I am thinking of changing Dr. Chemo's name to Poison.

Poison & Knife. The beginnings of a novel.

I wrote a letter to Dr. Z yesterday. It bothers me that he never returned my calls. I hope he is okay. His hospital (West Penn) is on the verge of bankruptcy. He just gave up his practice to move here from Baltimore and my surgery in June was his first here.

Gail, who reads this everyday says she has not heard me use the expression "buying time". In the interest of clarity, Knife is no longer using the word "cure" but " buying time" because he was unable to remove all the cancer during surgery. That is the way it is, unfortunately.

I saw Dr. Chemo yesterday. He wants to get started on the chemo of course but said it was not a problem to wait until we get back. It is scheduled for Feb. 8th. I will have scans done prior to that to see if the cancer has grown. I asked him if I would be on chemo for the rest of my life and he said that would be his guess. Another surgery would not be an option as it was not possible to get all the cancer in this last surgery. Major bummer. I thought I would live in a "watch and wait" mode. I assume it would be maintenance chemo otherwise I would die from diarrhea. My weight was down five lbs. from the last time I was in, the lowest yet. I was depressed yesterday but it is what it is. Can't give up. Anything can happen.

One day at a time. My goal is to survive the next round of chemo and take it from there. I read in the paper that Pitt has developed an effective vaccine for colon cancer. Amazing. They are looking for funding to test it on a large scale.

I was in bed at 9:00 when the phone rang. I never answer it this late but I said: "Zucker!" and raced to the other room for the phone. Sure enough it was Dr. Z! We talked for forty five minutes about his life, both professional and personal and about me. He apologized again and again for not calling me but said he is working 16 hour days. Well there was just no falling asleep after that, not with my heart going Thumpety Thump Thump. thump ...

Dr. Pingpong appealed the Insurance decision for Mark and lost and they have canceled his surgery on Tuesday. He has hired an insurance advocate but who knows how long that will take. I really feel for this guy. I am so fortunate that I have had zero problems with my insurance company.

Ernie is feeling better and is back on duty. I even had to make my own oatmeal yesterday morning. Geez. Despite an upset stomach I rallied and went to my cousin's (Katie Wolff) baby shower. It was great to see everyone. I did make it to warm water aerobics on Friday after waiting most of the morning at the HCC for a pneumonia vaccine. It was freezing. They had every window open in the pool area. I don't understand why they did not put in a better circulation system than having to keep the windows open year round. Also the warm water pool was not warm and the shower room was cold as it always is. I just can't deal with this now. It was great to seek the ladies in the class though.

The HCC is dead quiet now. I asked what is going on and they said all the blood cancer doctors had moved to the top floor to the brand new and posh Mario Lemieux Center for Blood Cancers. I appreciate the quiet. Maybe I'll even get a window seat for my chemo treatments. The small pleasures in life.

My search continued to find a place on St. John and I have narrowed it down to two. Will make a decision this morning. I have been wallowing in the winter doldrums and think it will be very healing to get away from Poison&Knife, to feel the sun and warm ocean breezes, to soak my neuro-pathetic feet in turquoise waters and maybe forget I have cancer for a few minutes or stuff it in a closet in my brain.

I am not one to jump on the cancer supplement band wagon however I bought some raw, unheated aloe vera juice from a demo at the co-op even though the demo lady rolled her eye balls one too many times over the fact I ate sugar and was getting chemo. She said her husband just died from prostate cancer. The aloe vera has helped me more than anything. It's called "herbal aloe force" by Herbal Answers Inc. I am off all medication except over otc prilosec and Colace.

I received a medical bill yesterday for $1,300. I called on it and it was a mistake. My insurance billed my deductible twice this year so it pays to take the time to question these things. BTW, the gas company promptly issued me credit for the $1,000 gas bill as the meter had been read in error.

Ernie and I are off for a walk down to the ocean before it gets too hot. So happy to be in one of the most beautiful spots in the world! The birds are chirping, the sun is shining and all is right at this moment.

The real reason I did not make an entry yesterday is I was feeling very emotional. Cancer in Paradise. Will I be able to sit on this porch and look at this stunning view next year? Yeah, I know: Be Here Now. My buddy Mark drove up from KY to Pittsburgh yesterday for his HIPEC surgery tomorrow. I read his daily blogs on Caringbridge and am reliving all his emotion again.

Audrey Hepburn died of appendiceal cancer in 1993 and I made the mistake of looking her up on Wikipedia and reading about her death. They used 5-FU on her. That is what is in my pump I wear home that gives me the big D. TWENTY years later they are using the same drug. The drug has been used against cancer for FORTY years. All the money that has been thrown at cancer and THIS IS THE BEST

THEY CAN COME UP WITH? Wouldn't that make YOU mad? UPMC charges my insurance company $37,000 each time they hook up the chemo. (The insurance company pays them around $12,500). For a forty year old drug. Is this a racket or what? Yes it works but for how long and at what cost? I want more than to hear "buying time". I want more than to be another statistic. I deserve more.

It was emotional for me to walk on the same floor I had my surgery and knock on Mark's door. I collected myself and had a nice visit with Margie, Mark dozed in an out. He had been up all night and was quite anxious to get home so they've started him on anti-anxiety medication. He is not having am easy time of it. I think I broke a record for getting out after that surgery after 8 nights. Another name for the surgery is MOAS (mother of all surgeries).

Then the fun of the scans began. I sat there choking over the liquid while the woman sitting next to me drank hers down with no problem. I said: how did you do that? And she responded: Practice. She is 43 with two kids. Has some rare form of sarcoma. They operated thinking it was uterine fibroids and she thinks the fact they cut into the uterus instead of removing it spread the cancer to her lungs. They told her to pack her bags but she is alive a year later and grateful for every day. Very cheerful. Made me feel like a big crybaby but I wonder if doctors know how difficult it is to drink that fluid and get the contrasting dye injected after abdominal surgery and bowel resection.

The technician said: "Be prepared. You are full of gas." Me: "How do you know?" Her: "I can see it." Me: "Don't I have any privacy?" Her: "I see every fart". I was miserable for the rest of the day with writhing, groaning intestines and gas. I spent the afternoon in bed, the rest of the family happily piled in next to me snoring away. This morning I'm fine. Happy for another day.

Things are a bit sober here as we speculate about the outcome of the scans and contemplate beginning another three months of chemo.

Well, bad news. The cancer is coming back, not real bad but noticeably. Fluid is building up. I am looking at the chemo as my friend, the only thing keeping me alive. Hopefully long enough that they can come up with something. Just sitting here waiting for them to call me to chemo.

Long night. Trying to get used to being tethered to the Pump again. Yes, it was a punch in the gut. Ernie is taking it hard enough for the both of us. The Grim Reaper has been knocking at my door since day one, lurking in the shadows. You don't get used to it. But you learn how to live with it. It is not like I have a corner on the market - it is a universal experience as far as I know. Just don't tell DAD that. I was hoping my watch and wait windows would be longer than three months. I will have to revise my bucket list to a trip to Meadville. And I have put Alzheimer's at the bottom of my worry list.

I asked Dr. Chemo to look at the scans and within a minute he had them up on a computer beside me. Amazing. I asked what the black holes were and he said gas. Enough to blow up Ft. Knox. Someone should research how to frack this infinite source. No side effects so far from the chemo, although reading the list of them, including death,"rare", is enough to scare the beejeezus out of you. They gave

me a consent form to sign for each drug. Ever feel caught between a rock. And a hard place?

A 77 year old man, Rudy, kept following me as I shuffled from room to room asking me if I wanted lunch. I do not want lunch because I can't look at tuna fish ever since I ate tuna fish sandwiches there last summer. Rudy was persistent. Three times he asked me what I wanted to drink. I said orange juice. He brought me apple juice. Rudy was very sweet and said his daughter had cancer. It turns out the lunch I brought I plopped onto the floor so I'm glad I ate his turkey sandwich. (I asked for egg salad.)

The chemo ward closed before I was done around 6:15. It was very eerie, just me and the nurse. She sent me off with the Pump and two large bags for Nurse Hazmat. Now I think Nurse Hazmat should bring her own luggage on Sunday. I had to schlep those bags, the Pump and all my stuff out in the freezing weather to go visit Mark. Mark had company so I did not stay long. He looked good. His wife looked like hell. The caregiver succumbs in the end.

On my way out of the hospital, I sat waiting for Ernie to pick me up. I paid little attention to an old woman across from me searching through her purse. This went on for about fifteen minutes then she asked me for $4 for a bus ticket that she lost. I am pretty sure it was a scam but I gave her $5. It is getting too close to Judgement Day to take any chances. I am going to start giving $1 to all the beggars. Ernie always gives them money and I felt half of his good karma points would pass over to his beloved wife. Now I am not so sure. It's not like it's a divorce court.

It was good to see Nurse Hazmat again. She was full of frontline stories, some of them rather gruesome, and useful tidbits of advice. And of course it is a huge improvement not to be tethered to Pump. Ernie has been incredibly patient, gentle and loving. I hope today is better.

"Nancy H. Orr succumbs after a courageous one week battle with diarrhea". You read it here first. You notice how obituaries don't say what the person died from anymore? Who cares how many grandchildren you have.....this privacy stuff has gone too far.

Dr. Z called last night and we chatted for about a half hour. He expressed his disappointment that the cancer returned so quickly. It was great to talk with him but I was too wound up to fall asleep.

Chemo #2. The only thing worse than chemo is being told they can't do it, for whatever reason. So onward. The avastin part of the drip will be 60 minutes this time and 30 minutes the next. It was 90 minutes last time. Maybe that will help. I read in the paper that the FDA is finding counterfeit avastin that lacks the cancer killing agent. These murderers should be strung up by the balls and given chemo.

Dr. Chemo was In a hurry and did not have much to say. He lowered my dose by 20% due to weight loss (126-117). He rescheduled my next chemo for three weeks. Unfortunately I figured that was a mistake and corrected it to two weeks. The pharmacy sent up the full dose of chemo that they used last time so I had to wait while they redid it. Michele brought a nice lunch and passed the time with me. I sent her on a mission to the library there to pick out books on living with cancer. I need some help coping with this. My nurse, a little younger than me, said they used to mix the drugs and if they could not find a vein, they had the patient drink the chemo. At the look of horror on my face, she said: "with grape juice". Ugh. The side effects aren't too bad. I hit up the Imodium real hard when I got home per instructions.

Will my voice come back? Is this the calm before the storm? If the 5FU is similar to last summer, the big D will hit Thursday. Did they lower my dosage too much to be effective?

A bone chilling rainy day. A good day to stay in and work on taxes. I have these rental properties in Meadville that I cannot sell or giveaway. They are a huge pain in the butt. It's like Detroit up there. I just got an email from a tenant who owes three months rent saying their furnace isn't working. I am guaranteed a similar phone call almost every day. Frustrating. Also, for the first time I have to add up medical expenses and as I have never had to do that before, it is not organized except for a huge pile of receipts on the table.

I still have no voice which is very disconcerting to say the least. You do not know how much you miss it until it's gone. I have an appointment with Needles this morning. Maybe he can help. It's difficult to say if acupuncture helps with the chemo but I figure I'll try it again for awhile.

Ernie was yelling and moaning last night from a nightmare. That will give him something to talk to his therapist about. He is seeing a Jungian therapist from France. Hopefully, between the two of them, they can figure out how to live with moi. I would like to see a therapist about moi also. For starters, moi would like a new body with the same brain and heart. I don't think that is asking too much.

I am sick and tired of writing about being sick and tired.

y nutrition classes start tonight so while I could still eat without feeling guilty I ordered a full rack of ribs and french fries followed by Rosemary's delicious poppy seed cake. I don't feel I need nutrition classes as I have always been teaching myself about nutrition but Miss Perky claims she can cure cancer and has the credentials to back it up. If staying alive means I have to go vegan, I'll go vegan but at this point I am not convinced but would not mind incorporating some recipes into my diet. Right now staying alive means not losing anymore weight. To quote from Mark's blog: "I hate cancer, I really do."

Today I am booking flights to Paris in September. I have some airfare that has to be used by tomorrow. I was going to ask Poison first but what the hell does he know. Nobody does. Even if I have to go in an urn, I'm going. We have invitations to Sicily, Tuscany and Dordogne and I am going to book a month. I would like to make it longer but don't want to push it. For one thing my port needs flushed every month if I am not using it. I am sure I could have it done there but don't want the hassle. Of course I could be cured by then and have the port removed. Miracles, miracles.

I am a Cancer Survivor. I go by the five day rule, not the five year rule.

I am a happy, heroic, cancer survivor. Ok. So they spiked my chemo with something. I did ask them to hang a bag of gin up there on the pole. With so many bags no one would know the difference. (I actually heard the girl go out to the end of the hall and tell my nurse that. Ha ha). You have two choices in the Chemo Ward: laugh or jump out the window with your pole. It's a toss-up.

Long day. 10:00 to 5:00. Dr. Chemo talked and talked. Not about me but about the state of the health care system in the country (he tangled with Ernie on the Single Payer issue), the war between UPMC and Highmark, the policy behind establishing a chemo regimen, chemo drugs, etc. I found it all really interesting and each of these is a blog in itself so I won't go into details. He said my 5FU costs pennies because it has been around so long. Think they are making some money on a $13,000 reimbursement each time from Highmark? Or have any incentive to switch to another drug? They lose money on each Medicare patient so depend on private insurers to make it up.

Voice loss is a rare side effect of avastin. Avastin has a long half life and symptoms can persist for months. Thanks Michele for bringing the healthy lunch including a bag of baked Kettle sheeps and for finding me more books in the HCC library.

Long night: clicking Pump that I have to remember to grab when going to the bathroom, sweats (probably my liver freaking out), the hot peppers I added to my sandwich ( what goes in must come out - ouch), all the water I'm drinking and chemo fluids necessitating constant peeing, etc..

 

I don't know why it is that good people get cancer and not the assholes but I am not the one who designed this world. I see some improvements that could be made.

Dr. Chemo is on vacation so we got Nicole, his PA, who is very sweet and kind. She said she needed a break from him. i thought, no shit, me too. She even asked if I wanted to stop treatments because she felt I was suffering. Ernie and I just looked at each other like, This is an option? Poison would have NEVER said that. Of course, I said: "Onward!" My last round wasn't that bad and I "only" have two more treatments and then a scan. Nicole is optimistic that the chemo is working and I will be able to take a break. We'll see but she made me feel optimistic too

Chemo #4. Ugh. I hate chemo day. My stomach starts feeling sick even before I get to the HCC. They always ask how are you feeling: poor, fair or good. Once I said poor and they asked me if I wanted them to call mental health. I said does anyone ever say Great? They said: Oh yeah, all the time. Hmmm... What is your life like if Chemo Day is Great? Maybe I am a whining wimp.

Alert: TMI (too much information). Squeamish Campers stop reading now.

Mark's wife said she has never been so obsessed with bowel movements since her children were potty trained. Exactly! The toilet becomes the center of the universe and you had better not go too far for too long. And when the big D hits you set up camp and have meals served. When the dogs come in to the house they head straight there to find me without looking in the bed or my office. It did not take Bozo long to figure that out.

You see, death with this disease is caused by bowel obstruction (as far as I know) and you become obsessed with every gurgle, groan and sensation coming from your system.

Ms. Perky's daily tip: the #1 cancer fighting foods are garlic and onion-in that order.

I haven't been sleeping well and feel perpetually exhausted. There is a difference between illness induced fatigue and normal fatigue. This settles into your bones and psyche.

As I get better, Ernie gets worse. Maybe it's mind over matter. He was able to shelve his back pain in order to take care of me. Now it is hitting him full force. I am trying to take over the kitchen duties again. With all the food people have been bringing and the great takeout choices, I have not done any cooking

I read the latest issue of TIME: "how to Cure Cancer". A Hollywood funded group, Stand up to Cancer (SU2C), has the goal of attacking cancer the way you make a movie: bring the best and most talented people together, fund them generously, oversee their progress rigorously and shoot for big payoffs - on a tight schedule. You get refunded on mortality rates, not on how many papers you published. It has brought together researchers who used to be competitors. They are getting results in two years instead of ten. Two years is still a helluva long time if you are sitting here with cancer. It is working so well that the NIH is adopting their model. In an unrelated article, I read that they are making small intestine tissue from stem cells. This is huge for this disease. I'll keep hoping, what else can I do?

Poison said I would need to continue chemo even if the Scan was NED (no evidence of disease). He is very cold and detached. Where is Dr. Z? I said I was hoping to take a break. He said I could if I wanted to. I said I didn't have to take chemo if I didn't want to but I had to do what was best for my health. We don't know if it will be a maintenance dose or what yet. I was depressed and angry

Poison's office called in the morning and said my hemoglobin was low do I want a transfusion? This explains some of the symptoms I have been having lately including shortness of breath. I thought about it most of the day and decided to go ahead with it. If the chemo were to end I would wait it out. As that does not appear to be the case, I think I should fuel up the tank. I go in tomorrow. Believe it or not, I do consider cost when making decisions, even though I haven't had any problems with my insurance.

I was checking my blood test results online when I saw that a cancer marker was elevated. I flipped out! It is not routine to check cancer markers and I did not think they would do it without telling me and certainly not tell me the results. When I phoned in they said it was probably an accident ( although they tested it two weeks ago also) and it wasn't elevated enough to worry about. Hmmm....

They wanted to give me a bunch (650 mg) of Tylenol and I said no. If I am going to destroy my liver it will be with a martini, not acetaminophen. I did agree to take 325 mg. I have the big D which is why I am fatigued. Susan Gubar describes the bathroom as a torture chamber; so does Mark in his blog. Those two are much more graphic than I when it comes to a description of bodily functions. I'll spare you the scatological details…At last spring is gloriously bursting at the seams with magnolias, daffodils and forsythia. A tonic for tired, winter worn eyes.

I can see why cancer patients get addicted to pain pills. One's phobia of pills seems to pass rather quickly under the onslaught of cancer treatment. It is ironic that the cancer itself does not have side effects, other than death.

I called a local guy with appendiceal cancer and undergoing Hipec surgery today. He has the "good" kind. No chemo before or after and the surgery will " cure him for life". Wow. I guess I drew the short straw. About 1,000 a 1,500 are diagnosed every year in the USA. Of those 10% have my aggressive type. That's 100-150/year. I am not a statistician but I'd say my odds are better to win the powerball (one in175 million).

Even more depressing I found an article that said treating appendiceal cancer like colon cancer is ineffective because this cancer has its own unique biology. I copied the article and mailed it to Poison & Knife. Just in case they don't know. I also sent it to PALS who sent it to the doctor quoted in the article and asking him to comment on it. I wondered about this last summer when Knife told me that appendiceal cancer was too rare to have its own treatment so they treated it like colon cancer because it was attached to the colon. This sounded like a shot in the dark to me. Based on that logic, it looks exactly like ovarian cancer so why not treat it like ovarian? Geez. I should have been a cancer researcher.

While I had Nikol,the PA, on the phone I asked her about my fingernails. She said it was the chemo and after my LAST treatment they would grow back. LAST? Has she talked to Poison who says there will be no last treatment?

I called Nikol to tell her I could not get the opium and she said I could come for another drip. (Her husband, Stanley Marks, is CEO of the HCC - I wonder if she is raising the profit). I said maybe they could drip saline solution before they chemo. She said, oh you won't be getting chemo. I said Poison never stops the chemo. She said he is sitting right here shaking his head. I said I had turned the corner and was feeling better. She said my bloodwork was good and did not look like I was dehydrated. So I don't know. Of course I don't want the chemo but even more so, I don't want cancer cells growing.

….

I have an early appointment with Poison. Nikol said I would not be getting chemo #6 today as they can't risk introducing the big D again so soon. And for icing on the cake, I don't have to have my port accessed for bloodwork as they did it on Tuesday and it was fine. I forgot to mention that I also gained a pound so that was a miracle after nine days of big D. That is because I am a piglet devouring everything in sight. You would not believe our grocery bill! I am happy happy happy not to be getting chemo today. I am allowed a day of being happy. Cancer cells be damned. Nikol is working on getting me the opium. Good girl!

He is going to have lab work done to determine the genetic make up of the cancer. They used to send in to Texas where it would be analyzed and drugs would be recommended. He said UPMC won't allow that anymore and the lab work has to be done in house and he has to figure out what drugs to use. He said there would be no major break throughs in the near future. He did read the article I mailed to him ( about treating appendiceal cancer like colon cancer is ineffective because it is different). He said he agrees but they don't know what else to do. There are not enough people with appendiceal cancer to do clinical trials and the insurance company will not cover drugs unless there is data. He says breast cancer gets most of the money and funding fizzles out by the time it gets to colon cancer even though 150,000 people get colon cancer every year. He said it is amazing what they can do with breast cancer now in terms of genetic analysis. My take on all of this is that money works in getting results and the breast cancer advocates are numerous and vocal.

Today is the big scan. I go in at 5:30 pm to drink the gunk and have my port accessed (for the radioactive dye) so the scan will probably be around 6:30. All prayers, healing energy and visualization for a NED (no evidence of disease) scan are welcome.

We watched "Zero Dark Thirty". They could have captured Bid Laden years earlier if they had turned Poison loose on these guys. A few chemo drips without the anti nausea and anti diarrhea drugs and they'd be talking. Forget about water boarding. Throw in some radiation for good measure..

I am sitting at the HCC waiting to be checked in for these scans. They were able to change my appt from 5:30 pm to 7 am which is good because I don't have to fast for six hours or think about it all day. Maybe because I was so upset; they said they had a cancellation. I admit I lost it yesterday. Somebody give me a rule book. Tell me how to act. Poor Ernie. He bears the brunt of all this. Bozo was cowering upstairs in bed.

The office manager called and also the scan guy with apologies. I think the dingbat at Window 4 with the dyed red hair just wrote down the wrong date. Anyone can make a clerical error. She just needs to know what happens when she does.

Ernie's brother-in- law said not to exercise the day of the scan. He had the glucose, created by exercise, show up as cancer. I called in to Poison's office yesterday morning and the nurse said she never heard that so I went to the gym and swam, feeling great. Talking with the scan guy, later in the day, he said NOT to exercise before the scan. I said maybe he should inform the staff of that.

I just had radioactive dye injected and drank a quart of scan scuz. At the time of the scan they inject something warm that makes you feel like you are peeing your pants. I am having a PET scan and cat scan. Ever wonder why scans cause cancer? Then I am going upstairs to see if they will do my blood work I have scheduled for Thursday now while I have my port accessed. You think they would coordinate this.

Think NED!!

Good news. The scans are good. Not NED which would have been the best case scenario but the same as the last scans. The cancer has not progressed. Probably due to the chemo but who knows. Poison said to come back in a month and we'll probably start up again with the chemo.

Ernie and I were exhausted last night. I have a lease renewal on life for three months when the next scans are. I would love to see that stretched to every six months or a year but for now ..... For those who asked my birthday is June 2nd. Anyone with medical knowledge who would like a copy of my scan reports, just let me know. It is like reading a foreign language. With the help of google, I get the gist of it. The insurance company approved opium. Lovely.

Poison said they do not have a tissue sample to do for genetic analysis. All they have is cells on slides. i find this hard to believe. I told them to call Dr. Z.. Surely they kept some from my first surgery

Poison obtained a tissue sample. They went through pathology. That is why Dr. Zdid not know about it.

Having cancer gives me a certain sense of freedom; like I can say or do whatever I feel like, short of hurting anyone. This is Ernie's take on it:

Jean Paul Sartre said that Parisians were never freer than they were during the occupation. Likewise, life seems at times never more wonderful than when under siege by this disease. Or perhaps I should say never more deeply, intensely, lived and appreciated. Ironic.

To quote Susan Gubar: "The gift of time starts to feel like a present spoiled by uncertainty about the future. With cancer, you can’t win for losing."

It is no wonder I hate the Hillman

Cancer Center. I walk in and they want to admit me to the hospital. I'll start at the beginning. I go in for routine bloodwork prior to my appointment. They access my port but cannot draw blood. The nurse decides, as I am not getting chemo, to deaccess the port and draw the blood from my vein. She has trouble getting blood from my vein also. Throughout this she is telling me about her gruesome treatment for rectal cancer ten years ago when she was 49. She wore Pump for forty-one days while getting radiation treatments! Now she is dealing with complications in her bowels from the radiation and scar tissue.

Then we see Poison. He almost looked at us like what are you doing here, very distracted. Said to get a scan in six to eight weeks before he leaves on vacation. And we're there like what about the chemo? He says your scans were good we'll wait until the next scans. This is a total turnaround from four months ago when he said he was continuing with chemo no matter what the scans were like. Ernie and I were speechless and didn't ask him why he changed his mind. I told him I was short of breath and he said it was probably OK, just a matter of building up my stamina. We were walking out when a nurse approached and said they only did half the blood work they were supposed to. Did I want to stick around and get stuck again? I said which half? Liver enzymes. We decided no. Then as I was paying my co-pay Poison'snurse comes up and says I need to be admitted to the hospital because my hemoglobin is low. It was too late in the day to do the blood transfusion there (they had changed my appointment for 11 am to 2 pm). After much discussion I said I wasn't going to the hospital; I would come in Tuesday morning (Monday is a holiday). They compromised and said I would get one unit of blood now and two units of blood Tuesday morning but I would have to rest until then. I said OK and once again they had to access my port. This was very painful and I yelled F___ and the poor nurse backed off and had to do it again. I said just be a bitch and jab it in there. That worked. Of course they could not get it to draw blood. I had just been through this an hour ago. I am never again getting my port taken out before the blood results are in. I am never scheduling a doctor's appointment again for a Friday afternoon before a holiday. Next they tried various drugs to declot the port. That worked and five hours all told I was out of there. Poor Ernie about passed out when they said I needed to be admitted. He canceled a gig in Morgantown last night that was a reunion of old friends and musicians. Well at least he got to watch the Penguins cinch the series. So here I am resting with a gorgeous weekend stretched ahead of me. What's with Poison? Why is my hemoglobin so low? It's been almost two months since my last treatment.

Then I went upstairs and looked at the computer and there is a " final diagnosis", a pathology report. What the hell is this? I read it and it sounded quite ominous. It must be the tissue sample they got from West Penn Hospital from my first surgery. I have to compare it to West Penn's report but I think it is worse. I asked Poison about the tissue sample and the genetic analysis and it just shrugged and said it takes a long time. He said nothing about a pathology report, let alone go over it with me. I am going to kill that guy. Nothing like having it pop up, out of the blue, on the Internet, on a holiday weekend when I can't call anyone. I don't have the medical expertise to understand it but I will do my best today to figure it out. Geez.

….

Michele and I met with Nicole after my transfusion. She said they stopped chemotherapy because I was not tolerating it well and the cancer was small and stable. Why keep bombarding it, but rather give my body a chance to grow stronger. Makes sense. She does not know why my hemoglobin plummeted - probably the chemo. As for the pathology report she said it is subjective. That in the beginning it guides what treatment to follow but now it makes no difference in treatment or prognosis. Hmmmm. I think she is right about the course of treatment but I do know that poorly differentiated Grade 3 is more aggressive than Grade 2 moderately differentiated. They have been telling me all along that I am at the aggressive end of the spectrum. As for the genetic analysis, Poison is looking into it, emailing pathology and talking with the insurance to see what they will cover. She said it is complicated, not just a straight line you follow.

The Supreme Court made a momentous decision yesterday but it was not on the news last night. It was a unanimous vote deciding that DNA cannot be patented. A Utah company wanted to patent two genes. This is huge for research. Now if we could only keep the funds for the NIH from being slashed.

I am at the HCC getting hydrated and anti nausea medication. Much better than going to the hospital. My iron is low so sometime I have to get an iron drip. They didn't want to do it at the same time. My cancer marker (CEA) dropped from 9.8 on April 5th to 6.5. I don't know how much stock you can put in this but better down than up! Normal is 0-5. As I was waiting in the waiting room I pooped my pants. I just take this in stride but Ernie was very upset. Good ol' Judy, the colorectal cancer nurse, fixed me up with diapers and pajamas and said it happens to her all the time. She's so great. Better than on an airplane. Can you imagine? I am sure this will make me feel better. I am exhausted and lost several pounds.

I just spent my second night in the hospital with no water or food. This tube in my throat hurts very much. They just told me they would up my pain medication. A nurse came in and said the hose was hooked up wrong so she is just going to gravity feed it. And then she disappeared. This is typical. It seems everyone sees how fast they can get in and out of the room. The help is mostly from third world countries or the "other side of the tracks". I think I told you about the botched job putting the the hose in to begin with. I want out of here real bad. This place sucks big time. I haven't been able to sleep. A nurse just told me the amount of deladin they were giving me for pain was worthless.

At least I passed gas. Hopefully that will be a ticket out of this joint.

I am still in the hospital. Three days without food or water. I had the bowel movement they've been waiting for last evening. I've been passing gas all along . I am very frustrated and depressed. Things move like molasses in a hospital. Did you see the episode on 60 minutes last week how they are required to admit a certain percentage of people whether they need it or not? One of the bright spots in my day yesterday was when my colonoscopy doctor came to visit and to look into things. She is an older woman named Helen and very compassionate, an angel. She gave us a copy of the scan reports and gave me the name of a doctor to be my PCP. I have no doctor overlooking or coordinating things. I have no medical advocate. I deal with Poison and that's it. She thinks what is complicating things now, and why they are being so careful is due to the chemo drug I was on - Avastin. Avastin has a very long half life and is a very nasty drug. It seems they use the chemo to attack the cancer and the rest of the time trying to patch my body back together. I read the scans and they seem to show some progression of the cancer. "Infiltrating tumor within the hepatic fissures has progressed. The tumor is causing mass effect on the caudate lobe." What this means and how bad it is I don't know. I really really want to go home. I just lay here day after day with nothing happening. I beg but they won't give me anything.

My problems are being caused by the progression of the cancer. I will start up chemo again on Monday. There are a shortage of chemo chairs and that is the soonest he can get me in. At least I am not being sent to the hospital or to hospice. They think I will feel better once the treatments start. Meanwhile I have to figure out how to keep food, or at least liquids, down. At the hospital, they said they did not know what was causing the partial obstruction. Poison said they leave it up to the PCP to tell his own patient that the cancer is the problem. Interesting. Now I am at the HCC getting the drip which will include nausea medication and pain meds. I am not in pain, just nauseated. Also I am getting another abdominal X-ray. All this is very troubling to say the least.

I am feeling much better - a miracle!! I have never had a drip make such a difference. Nikol called to see how I was doing and when I told her, she seemed quite proud of the concoction she had whipped up for the drip and told me to come in for it anytime; that even if she weren't there, I could get the same mix. Plus I had a shot of deladid. I wasn't in pain, just nauseated, but I thought what the heck, go for a buzz… I have been passing gas and had a normal BM in the middle of the night. To date, that was the most important BM of my life so you get to hear about it right here. I felt I was on death's doorstep folks. It is so inch easier for me to have hope and fortitude when I am feeling good. Even thought the news is not good. There is no doubting that I am at the aggressive end of the spectrum of this disease. Like Poison says - there are no rules with cancer. It has a mind of its own and they are always playing catch up. I feel Poison lays it on the line - he just wasn't in the hospital to telll me and generally the staff at the hospital leaves the cancer discussion up to the oncologist. Ernie has been very nervous that I have not been on chemo. It is not a rocket science and I feel that Nikol wanted to hold off as long as possible and Poison would have started earlier. Now I feel there is a rush to get back on it although my symptoms have been relieved for now. We are going back to what I was on last summer. Swapping out the irinotecan, which was causing the worst of the diarrhea and putting back in the oxaliplatin at a lower dose (causes neuropthy). I can stay alive with neuropathy. So I can't reach for a cold one from the frig. Oh, he wants to keep in the Avastin. This is not going to be fun.

After we returned home my gas turned to wrenching pain and I had a helluva night. I decided to take a pain pill every hour until I fell asleep or died. I fell asleep about 3am and am feeling really groggy now.

I never thought I would be happy to see Pump again but I am. Pump or Death. It's a no brainer. Let's hope this starts shrinking the cancer!

Sometimes I miss the caffeine jolt - a strong mug of coffee first thing in the morning. I used to think my stomach was made of cast iron the way I could abuse it without repercussion. Now it is made of fragile Venetian glass. Tea is so much more civilized anyway.

I pooped my pants yesterday in the park. I debated whether to mention that. I don't want to pull any punches when describing what living with this disease is like. Is this an isolated incident? Will I have to start wearing diapers? Be afraid to go out in public? The big D is bad and Nurse Hazmat said to start taking the opium tonight. I may go in for a drip tomorrow as I am quite fatigued. Gail's brother has been a paraplegic for 30 years and he said if he could have anything back, it would be normal function of his bowels - not walking or anything else.

The day from hell. I dragged myself on a walk in the morning but after that I never made it out of bed. Severe nausea. I could not eat, threw up twice. Zofran, my anti-nausea medication did nothing. No way I could even think about the ball game. More tickets down the drain. Ernie was an angel. He held my hand, massaged my feet, made me fresh ginger tea, read to me, talked to me, poured lots of love into me, stood on his head to get me to eat something ..... I would be dead without him. How does one go through this single? I took Vicodin and ambien to get some sleep. Still nauseous this morning. I will call in first thing and see if I can get in for a drip. Hopefully they will hook me up to some anti-nausea medication. My last round of chemo I was not nauseous at all. Did you ever watch a hot dog eating contest while sick? The winner ate 69 hot dogs. I just don't get it. What an idiot.

Nothing every came of the genetic analysis they did. Poison just said it did not turn up anything and I don't know enough about it to ask questions.

Finally around 6 pm, I induced vomiting. There wasn't much in there. I was up all night with heart burn and regurgitation. This morning the big D hit. When I took opium, I threw it up. You tell me what to do. Is this quality if life? I've about had it. Mentally and physically. I don't want to go to the hospital because it is the weekend and I am supposed to have chemo Monday morning. I think the bowel obstruction, if that is what it was, has passed or I wouldn't be having diarrhea. So I will try to get some food down today. Many of you have asked if I have tried Weed. Lets just say it has not helped. Some people in my support group swear by brownies.

Nurse Rectal, when she was accessing my port, said: Yeah, that opium tastes like tobacco juice and doesn't work. Exactly. I love swapping stories with people who are in the trenches. It's like landlords seeing who can come up with the best tenant horror story. I thought Poison was on vacation but it is this week he leaves for Hilton Head for two weeks. We were surprised that he chatted to us for a long time - mostly about the War between UPMC and Highmark. I don't want to be quoted on this but he said UPMC would sign a deal at the last minute, that they would go bankrupt if they lost Highmark customers. But first they want to see how many Highmark customers they can get to sign up for UPMC insurance. He is convinced (like everyone who works at HCC) that he will get cancer.

I wish I had better news to report.  I have been nauseous since my treatment.  Last night I woke up regurgitating something foul, opium maybe, and had an upset stomach the rest of the night.  I woke up vomiting.  The big D has been nonstop.  I honestly don't know what my body is running on.  They said my bloodwork looks good.  To me, it looks like I have one foot in the grave.  Nurse Hazmat disconnected Pump yesterday.  I am always glad to be rid of the cumbersome appendage but know I'll start feeling worse afterwards.

On Friday I went in for a drip and was quite sick and throwing up.  They gave me all sorts of drugs, including lorazepam (Atavin) for nausea.  I always thought that was for anxiety.  I have quite the smorgasbord of drugs on my nightstand, none of which seem to do much good.  I'm not in pain.  Nothing works on the big D.  I think the nausea pills may help.

     We are having second thoughts about going to France. It is not something I can let go until the last day and decide if we are going or not.  Certainly the way I have been feeling I would not go but I was hoping the next round of treatment would knock back the cancer and the pain and vomiting.  Traveling is difficult under the best of circumstances and there is a certain amount of comfort in being close to my doctors.  We also do not want them to stop the chemo if it is in my best interest to stay on it.  So maybe we just should hope and pray for a remission.  Then we can go.

Today I am going to see what I can salvage from our tickets to France.  RoseAnn's sister has a house on a river in Franklin PA and said we could use it this weekend and bring the dogs.  That will be relaxing.  Ha ha. So when one door closes - France;  another door opens- Franklin.  Now what more could you ask for?

The cover story on Sunday's New York Times Magazine is:  "A Right to Die".  It is about a bioethicist who fought for the right of people to end their own lives.  Her husband had a bicycle accident and is now a quadriplegic.  Now she is faced with pulling the plug on her beloved.  It is a very disturbing article that hit home for us.  It shows how our standards for quality of life shift as you become more and more incapacitated.

Wow!  I officially had a god day!  I had forgotten what it was like.   Wow, wow, wow.

 Chris, Ro's sister, has offered us her truly gorgeous secluded riverside home for the weekend. It is totally awesome.  It is very healing watching the Allegheny river drift by underneath us with a bank of trees on the other side.  All we need is a cuckoo bird and I'd feel we were in France.  The refrigerator is well stocked with chicken and veggies marinating for the grill.   Boat ride and kayak float are on the agenda.   We're in heaven EXCEPT can't escape the big C.  I felt good yesterday morning but was fatigued from D so I went in for a drip to ensure I would feel good this weekend.  I was very very sick in the afternoon, severe stomach pain and later on vomiting.  There was no reason for this.

I didn't see Poison yesterday, just Nikol (my preference).  She said the diarrhea is caused by the chemo, by the cancer and by the surgeries and that it will be a chronic condition.  Mark still has the big D after a successful surgery and has been off chemo for months now.  They included a bag of saline solution for hydration yesterday so that added an hour to the drip.  Long day. 10 - 4.  I had pizza delivered to the Treatment Center.  Just two large pizzas but man did I get a lot of mileage out that - a private suite and every nurse thanking me.  Wow!  if thats all it takes to get the royal treatment, I'll do it more often.  Since this has become my second home, the staff all knows me and I know all their names and am getting to know their stories. The comraderie is great.  Too bad the circumstances suck. When I am on the saline drip, I am "allowed" to work at the puzzle table.  I was joined by an entire hillbilly family that was there from Ohio with grandpa getting his first treatment.  Poor guy.

 I was nauseous and it kept getting worse until by 4 pm I was throwing up continuously while having the big D at the same time all while juggling Pump.  Nurse Hazmat called in the midst of this and asked how I was.  I wailed:  I'm SO sick.  She said to go to ER for hydration ( the HCC was closed by this time).  She called the oncologist on call for me and they confirmed that, so off to the ER I went.   Because Pump is hooked to my port, they had to stick my vein for the drip.  I have tiny veins.  The first nurse couldn't do it.  They called in a forty year veteran and she managed after two tries.  I am not used to getting stuck and it hurts. Nurse Hazmat said:  why didn't they use the other entry to your port? I was thinking the same thing as it has dual lines going in to it.  But these nurses in ER are afraid of going near anything related to chemo so we wasted a lot of time and discomfort on my part.  With a shot of dilaudid I started feeling better and was fine to go home around 11 pm.   I do not know what caused all this, probably chemo.

My scan showed the cancer is stable which is good.  We continue with chemo which is not good but not unexpected.  So tomorrow at 7:30 am I have chemo.  He is going to add another anti nausea medicine to try and help with the nausea and vomiting.

     We are relieved.  The news could definitely have been worse.  I bought some more time here.

My weight was at an all time low of 108.5.  I am down from a size 12 to a size 2.  I am slowly becoming invisible…     From Susan Gubar's (ovarian cancer) column in the NY Times:

May we dwell in the heart,

May we be free from suffering,

May we be healed wherever healing is called for,

May we be at peace.

    I just got an email from Delta to check in for our flight to Paris today.  Ha.  Here I am in my chair at the HCC for the day.  I haven't felt well the past week due to an upset stomach and big D but ironically woke up feeling good for chemo day.  And my weight was up three pounds.  Relief.  Saturday I was feeling sicker and sicker and thought I was headed for one of my Saturday evening vomiting sessions.  I smoked some of the substance that shall not be named and it snapped me out of it.  Now who wants to look me in the eye and say it should stay illegal?

     I'll admit I shamelessly played the cancer card and it backfired. I realized that the Lion King was the same time as the Steeler game.  I called, played the cancer card and was able to exchange the tickets for another date. ( A less desirable time and seats).  Well wouldn't you know the Steelers were totally pathetic and lost at least two injured starters for the season. The Lion King is pretty much sold out so I am sure they could sell my seats for the day.

I questioned something in my scan and asked if I should see a GI specialist and Poison said yes:  "interval development of wall thickening of the descending colon, sigmoid colon and rectum, suspicious for a proctocolitis."  Due to a cancelation, I was able to see the GI yesterday morning.  He was not that concerned about colitis and we spend most of the time talking about my chronic diarrhea.  He is testing my stool for C.diff and gave me a cholesterol lowering medication to take with every meal for the diarrhea.  I had read on my FB support group of people taking this drug and that it worked. When I mentioned it to Nikol and Poison a month or so ago, nothing came of it.  Just shows you have to stay on top of things yourself.  I often mention things to the doctor and let it drop when I don't get a response.  

 We cancer patients sit around a lot waiting and get to talking.  One of the pet peeves is when someone says:  "Let me know what I can do."  No one is going to call someone up, unless it is close family or a best friend, and ask them to do something.  If someone wants to help, just show up with gloves and a hoe or sponge and chlorox, food, walk the dog, mow the lawn, take the grocery list to the store, etc..  Now I am not judging this as that is probably exactly what I would say and I have been blessed with an over abundance of support, generosity and a stay at home husband.  But now I know what to do when a friend is sick.  Just show up at the door and say:  May I wash your sheets and make up your bed?  Walk the dog?  Clean your kitchen or bath? Or I brought you dinner.

I have had wicked Water Butt since starting the Flagyl on Weds. I don't know if I will survive the duration of the prescription (not to mention the trip home).  I am going in on Monday to see Poison and get hydration and iron. Chemo on Tuesday.  I may have to get hydrated every other day or so at this rate.  In regards to the comments on the Guestbook - I don't know why I wasn't tested for c diff.  When I called in they said they were surprised I had it. I had to ask for my scan report, read it and interpret it to decide I should go to a GI doctor.  They would not have suggested it.  Kind of scary.  No one knows  less about medicine than I do - having never been sick nor having kids who got sick. Now I know that I have to be on top of EVERYTHING.

I was sick yesterday and ended up having a terribly long day at the Hillman.  I went in early for the iron, infusion,hydration and a shot of dilaudid.   I felt amazingly better.  Then we had an appt with Poison and the problems started.  He was alarmed (which for him means a raised eyebrow) when I stated that on Friday I had pressure in my sternum (only lasted that day) and since then some shortness of breath.  He said avastin could cause heart problems and blood clots.  Rare.  Nice.  He immediately ordered an EKG which was fine and then a cat scan.  The scanners were broken at HCC so they transported me by wheelchair to the hospital.  After going through all that, I waited for my transport back.  Waited and waited.  I kept saying I'd walk and they kept saying he was on his way.  Finally I just walked out of there back to Poison's office.  Then I waited and waited there.  Finally I just walked out.  The nurse came running after me and said the scans were fine.  I knew I didn't have any pulmonary embolisms or they would have admitted me to the hospital.  By this time I was really sick again - the dye they injected?  The stress?  I was exhausted and spent the evening in bed.  Couldn't eat anything.  That's not all.  The GI doctor called and changed my antibiotic for the C diff., that flagyl causes nausea.  They insist it doesn't cause diarrhea. And they  said that  I shouldn't take any pills within two hours of the big D pills they gave me. Well hello?  They tell me this after a week?  The pharmacist never told me anything either.  Of course I was taking the flagyl at the same time.  So two good things I guess:  they stopped the cholesterol lowering drug I was taking for the big D and Poison stopped the chemo until I get rid of the c diff.  I am grateful I don't have to go into chemo this morning but ... 

I am at HCC for my Monday morning iron infusion, hydration and anti nausea meds.  The nurse puts on a gown every time she walks into the room because of my c diff ( then throws it in the garbage when she exits) and I get a private room out of the deal.  Guess what?  The Dept. of Health came in and took away our heated blankets!   They said someone could get burned.  Those bastards!  I would love for that inspector to sit in this cold chair in a cold room getting chemo all day and see what he says then.  I am going to light a fire under somebody's ass.

Nothing like cancer, to make any night out seem like a rare precious event. Thank you Tim Fedele.  Oh, the Pens won.

      They canceled chemo this week - again.  I did not see Poison as he was called out on a family emergency with his in-laws.  Nicole was stuck with the load of patients but she managed to visit me in bed in the Treatment Center.  She said I was too sick for chemo.  Did I want a feeding tube?  An X-ray ?  I said no but when I got home still sick, I was wishing I got the X-ray.  I was going to go in yesterday but I felt better and was eating again.  Now I have the Big D.  I took in a stool sample yesterday to be tested for c diff but haven't heard back.  It is making me nervous not getting the chemo.  Doesn't take long for those cancer cells to start multiplying.

Knife's assistant walked in to discuss the scan.  He said it showed lots of obstruction and he was putting in an NG tube.  But after talking to me, he wondered if I needed it (no vomiting or nausea).  After some discussion, we decided to go ahead with it to be on the safe side and to do anything possible to avoid surgery.  This one went in more smoothly than the last time and doesn't seem to awful.   In the middle of the night I woke up to smelly, wet sheets - here the tube had leaked.  Yuck.   My c diff test came back negative.  No more antibiotics. Now the game plan is to wait for the obstruction  to go away.

I am being discharged today but you know how that goes.  It's like being in the express line at the grocery story with a long line of people ahead of you, all with one or two items more than the limit.

did the whole works yesterday at the HCC so that I would not have to go in today.  What a long miserable day!  Ernie and Michele each did a shift and I fell asleep in the afternoon listening to a DeepokChopra  meditation.  These come up periodically on the Internet for free and are great for putting me to sleep.  Poison thinks it is a good idea to get a second opinion and made an appt with Dr. Bartlett Thursday morning.  I am sure Knife consults with Bartlett as he is head of the department but I want to meet him.  I'll ask him about connecting with Dr. Levine as I know they work together.  Once a quarter, all the specialists, world wide, have a video conference to discuss a problematic case.  In December I would like him to choose mine.  Knife said he had never seen anything like mine so I figure that makes a case.  I feel better being proactive although I don't really expect Levine or Bartlett to say go ahead with a second surgery and HIPEC.  I don't know if my body could take it anyway.  BTW, there were five us appendiceal cancer patients on my floor.

      Poison changed my chemo back to what I was doing last spring.  He felt the oxalliplatin ( the one that causes neuropathy) was losing its efficacy ( my cancer makers are creeping up) and put back in irinotecan which causes the Big D.  He disagreed with the doctor in the hospital who was opposed to opium and other anti diarrhea drugs saying they slowed the rhythm of my intestine.  Poison said, yeah, but you can die from the diarrhea.

     I was miserable last evening and night from screaming, turbulent intestines.  Ernie and I desperately need to get away from hospitals and we rented a cabin in Cook's Forest for two nights next week with the dogs.  We'll see what kind of trouble the Terrorist causes up there.  Someone built a teepee in the park and he ran right up to the top!

Better news.  Yesterday I got all dolled up to meet Dr. Bartlett - first impressions matter.  After a two hour wait we met and found him to be a deep, soulful, compassionate, calm person.  He did not paint nearly a dire picture as Knife.  He said not much cancer is showing in the scans.They assume the restricted bowel areas are due to cancer.  He said future surgery and HIPEC could be a possibility IF I do not have bowel obstructions.  He said they could try a different drug for the HIPEC, that clinical trials are being run.  He said to wait and see how this latest round of chemo goes and do a scan after 4-6 treatments.  The Tumor Board met that morning and discussed my case.  Poison & Knife were there. I would love to have been a fly on the wall.  He said he will present my case at the next international video conference on December 18th.  This is great!  I am putting on hold getting a second opinion from Dr. Levine as he will be attending the video conference and will see my case presented.  Barlett said he works with Levine and doubts he would say anything different at this point.  So there is still HOPE Campers!  Ernie was so relieved he started crying when Bartlett left the room.   If I have another surgery, I'll choose Barlett over Knife.  Not that Knife isn't competent, but Barlett has a worldwide reputation and obviously we prefer his style of communication over Knife…

What Cancer Cannot Do

 

Cancer is so limited ...

It cannot cripple Love

It cannot shatter Hope

It cannot corrode Faith

It cannot destroy Peace

It cannot kill Friendship

It cannot suppress Memories

It cannot silence Courage

It cannot invade the Soul

It  cannot steal eternal Life.

It cannot conquer the Spirit.

 

I am at my favorite place, the Hillman, about to get chemo and hydration.  Everything is moving in slow motion this morning.  A new nurse this morning had to access my port THREE times to get it right.  Do you know how much that hurt?  She is never coming near me again.  My favorite, Nurse Rectal, had bowel surgery and is off for 12 weeks.

Ring of Fire:  the only relief I get from this is to soak in a hot tub.  With the big D, that means sitting in the tub 24/7, a bit cumbersome.  Poison's office game me as scrip for a poison ivy medicine, Calaclear.  This doesn't seem to do more than any other OTC product.  My GI doctor said he had something to try.  The Big D is raging.  I have to race to the bathroom before I have an accident.  Last night I had a bit of an accident to clean up, got back in bed and Buster threw up on top of me. At that point I had to laugh.  Since I go to sleep so early, I have been working on a great puzzle for an hour around 1 am.  The hydration helped on Monday and I actually had a feel good day yesterday.  I don't want  say much about the big D or they will stop the chemo.  They can tell from my blood work.  One guy in my support group is pooping a white mass.  The cancer invaded his small intestine.  That's one way to get rid of it - flush it.

It was a bit of a shock to wake up to winter wonderland yesterday morning.  It was pretty but that cold wind knifed me to my bones and I couldn't get warm the rest of the day.  Chemo day I felt fine, unlike the last treatment when I came home really sick.  However, yesterday my bloated, painful stomach came back and I can't stop hiccuping.  I slept for ten hours last night. Don't feel so hot this morning and think I will just keep to liquids today...  I'll be happy to see Nurse Hazmat (Adele).  It is difficult to get dressed in layers of winter warmth while weaving the pump through each layer.  Adele is leaving her position and I will miss her after a year and a half.  She knows more than the doctors about what is going on from being out in the field.  But she is wary of visiting homes in bad areas after dark.  Yesterday was the one year anniversary of my surgery, November 12th.  Time flies even when miserable.

i went to yoga yesterday morning and felt fine.  Came home, ate lunch and that was it.  I was in bed for the next 18 hours taking pain killers.  What the heck is going on?  I am not vomiting and food is moving through so I do not think I have a bowel obstruction.  However I am afraid if I go into the HCC today, they'll find a reason to put me in the hospital with an NG tube for the weekend.  Also, remember they said surgery would not be an option if I had any more bowel obstructions.  I am better at the moment but I've eaten very little.

 Yesterday I was the only one in yoga class so I told her she could do a reiki session.  I've had energy work before but not reiki.  I probably wouldn't do it again but it was interesting to try.  She says this cancer journey was karmically decided a long time ago, that my soul agreed to it before birth and there was nothing I could have done to prevent it. 

 Ernie went to see the doctor yesterday that misdiagnosed me a year and a half ago.  Ernie told him that I reported abdominal pain and he just shrugged it off saying it was probably gas, that I was healthy and to stay away from doctors.  I wasn't diagnosed until five months later.  The doctor did not know any of this and started crying.

I asked for the marijuana pill but they said it was not covered by insurance and expensive. I don't know if it would help anyway.  I'll try to make it until Monday and go in early for a drip.

I have had five rounds of chemo now with a sixth scheduled.  That is longer than I have gone in the past.

    Somehow I found a reprieve on Thanksgiving (mind over matter?) and had a wonderful day.  I watched carefully what I ate and still was sick by the  time I got home.  I asked Keith to get out the old videos and watched from before my baptism to teenager.  Happy Times.

   I think I'll climb on my soap box for a minute. Haven't been up there in awhile.  One thing about cancer, it usually gives you time to get your house in order.  Although I had all legal documents done many years ago, if I had kicked out in a car accident I would have left a heck of a mess for my family to straighten out.  I have spent the past year simplifying, consolidating, down sizing and teaching Ernie how to take over running the house,  finances and a rental property.  Ernie is not bent this way but realizes he has to know where everything is.  I not only took care of everything, I took care of Ernie and managed his career too. Ernie didn't ask questions.  If you do not want your spouse to know all your passwords and where everything is hidden, leave the information with your lawyer.  Take a look around your room today and say: What would happen if I never set foot in here again?  Don't leave your estate/possessions for someone else to deal with.

It took all day yesterday to get admitted to the hospital.   Meanwhile they kept me buzzed up on dilaudid.  About midnight last night I realized sleep was out of the question due to constant regurgitation so I agreed to putting in an NG tube down my nose and a quart of fluid gushed out.  There was a leak somewhere so all my bed linens got soaked with this warm brown liquid.  After we got everything all cleaned up I slept really well.   Tons of doctors came in and out all day yesterday and early this morning. I can't keep them straight.  The 7 am doctor was from pain management and wanted to know if I wanted hospice care or to continue chemo!   Then he said he was expecting to find a very sick lady and that I looked like I was doing well.  That succeeded in waking me up!  At some point the TPN team is coming in to discuss this option.  Basically TPN (total parental nutrition) is a bag of nutrition that you drip into a line every night for about twelve hours.  It doesn't necessarily have to be permanent.

I'm still in the hospital and probably will be for awhile. My bowels are making noises but no BMs yet.  Fortunately I am not in pain from the NG tube, so different from that last two times I had one.  I was begging for dilaudid.  Ernie snuck me in a mug of tea and I am taking tiny sips.  I'm so godawful thirsty.  Sucking on ice just doesn't cut it although the nurse said most people aren't allowed that.  The big decision is still hanging over my head whether to go with TPN.  I just don't want to live a life with tubes and a restricted diet.  Eventually it will come down to this as the disease shuts down the digestive system.  And then there is the question go a g- tube.  You hit the release on this and it alleviates all that pressure down there.  I should make up my mind today as I have all these teams on stand by.  One to install the pik line and one to teach us how to do it.  The TPN is fat, sugar and protein.   So everybody hope for a BM so I can drink liquids!

it seems a lot has happened since I last wrote but I am still here and certainly not being discharched over the weekend.  First this darn NG tube.  This thing is horrible and causing me great discomfort.  They disconnected it yesterday but left it in in case I would need it again. I had a BM which made everyone cheer but they still did not allow liquids. Only ice chips.  The NG tube causes massive amount of mucous in my throat which I spit out constantly.  I can't talk.  Well last night at 10:00 I was spitting mucous onto a cup when I threw up!  All over myself. No warning.  Damn!  You know what that means.  They reconnected the NG tube and I am back to square one sucking ice chips.  1.6 liters of fluid came out which is a lot, I'll admit.  I would kill,I mean kill, for a cold ginger ale.  It's amazing what our desires can be reduced to.

        As for the TPN.  Finally a guy walked in to my room who knew what he was talking about and how to clearly express himself .  Ernie was here fortunately. He said you cannot do TPN and chemo at the same time.  The risk of infection is too great.   So they hooked up TPN until my next chemo treatment. Hopefully this will help me with my weight and nutrition needs in the hospital.  Ice chips don't do much for this.  I think the weekend will be quiet - just waiting for them to disconnect this NG tube and after half a day hopefully they will allow me liquids but the way they move it probably won't be until tomorrow.  I'm starting to go crazy in this hospital, trying to walk as much as possible.  It is very hard on Ernie.  He hates it.  During the week, doctors come in constantly throughout the day.  My TPN tube beeped constantly last night.  Ernie just arrived for a cup of hot tea for me.  I think I'd better be careful with this.

The doctors allowed me a ginger ale which was quite exciting.  The NG tube is still in and increases my misery each day. I think they will surely pull it out today.  It was difficult to swallow the ginger ale. They gave me a nifty wand to suck the mucous out of my mouth.  This really helps.  I think it would make a great Christmas present for DAD as he goes through a box of Kleenex a day for constant draining.

      I have Gravity Diarrhea.   You stand up it runs out.  I am  glad things are moving but don't like a mess every time I take a walk.  I have painful hiccups which maybe I'll start taking medication for.   I hate to add another med if I don't have to.  I'm on the verge of getting a bed sore on my coccyx.  When I was admitted I had some vomit in both lungs and was put on antibiotics but they are concerned that I'll get pneumonia. One good thing is I think the TPN is really helping.  I can't imagine continuing to lie here without any sustinence.  My weight is up to 111 without much on.  Yippee!

     It came to my attention that they have "Full code" on my chart instead of "Do Not Resuscitate".  DNR. It was never explained to me that they did this nor an exact description of what it meant.  It would override my Living Will or my family''s wishes. I am really bothered by this and someday when I can talk again, someone's going to hear about it.  Full code is really gruesome - they go to any measure to keep you alive and throw you into ICU.  With DNR they'll take reasonable measures to get your heart or breathing started again.

So beware when you go to the hospital that it is not your Living Will that matters as much as what is on your chart that day.

things aren't going so good.  They took out the NG tube in the afternoon.  I asked them when they took it  out if they would run the suction first - to get anything out of me that shouldn't be there but they didn't want to do that, wanting my body to take care of it.   Around 7 pm I got the chills and shook for 30 minutes.  No fever.  Then I threw up -lots.  This is not good as they said I would have to put in the NG tube again if I vomited.  I had a shot of dilaudid, watched the Steeler game for awhile, and slept ok, more or less, considering I had a steady parade all night as somewhere in that time frame I had a fever of 101, but no fever this morning.  I had diarrhea several time which is a big pain as I am hooked to all these lines. I keep the pot right beside the bed but getting cleaned and fresh diapers on really takes it out of me.  Also last night they took a chest X-ray as they are worried about pneumonia.  They said if I vomited again I would need the NG tube again. NO WAY. To me that's not quality of life.. I'll go home and take my chances.  Well all this probably delayed my discharge by a day.

From Ernie: Today nancy got yet another infection and we were visited by many physicians.  the port has to come out, infected, and they wanted to replace it.  Finally we got Poison into the room.  He has been a companion and guide through all of this.   Because things were cascading south we have decided, with his help, to not replace the port, to basically end treatment, and go home on Friday to hospice care.

Yesterday a constant stream of people came in for this and that.  I went downstairs to have my port removed but they didn't do it, for

reasons not worth going into.  It was very uncomfortable to me for three hours.  So have to go through it all again today and it's another day without anything but ice chips.  I'm thirsty and hungry.   The hospice team was to talk to us this morning.   I imagine my discharge will be moved back.   I am taking a lot of dilaudid  , every two hours .5mg.

will post later.

From Ernie: Going home in a couple of hours. Hospice. Looking forward to the time of love and kindness that brings us all home to the eternal verities. For us, all our love to all our people.

From Ernie: Nancy made it home last night.  Up the steps to her bed. Very rough night, the hospice people were great.  Now she is in a coma, getting all the meds she needs, resting comfortably, looking peacefull surrounded by friends family love dogs kindness, care. We are so wonderfully blessed.

From Ernie: Our dear Nancy passed really peacefully at around ten o'clock last night.She was surrounded by close friends and family. Buster never left her side. Guarded her body until they came to carry her away. What a blessing she made it home and into her bed.  We managed one sweet short dance together before she slipped into a coma. 

Her funeral will probably be Thursday. 

 

Her disease brought out an amazing caring Nancy. she reached out to all of her fellow travelers and with her blog, where she found her voice, made a difference in many lives.

She was the greatest blessing in my life and made me a whole person.

I can't express my thanks enough to everybody who lent a hand and offered kind words. I especially need to thank her sister-in-law Rose Ann who among all the great helpers and those who loved us guided us through with love and care.

 

So to friends, fellow sufferers, cluck-clucks and to the amazing hospital staffs of Hillman Cancer center and Shadyside Hospital from the doctors all the way to the people who cleaned the floors and beds I give my love and profound thanks.

Nancy was a blessing and the luckiest thing in my life. So good-bye dear till we meet on the other side. 

Ernie

The Shark from Maui

Patient's choice