January 3 to February 16, 2005

 

1-3-05

You asked if this cancer is containable. I really have no idea. The drs. do not say much to us along those lines. There are patients that wrote in that have had diagnoses made over 11 years ago. They are still here. MaryLynn Rampmeyer was on her death bed in the Spring of 2003. Her nephew wrote to Alan. Her drs. said she had inoperable tumors. She flew out to Dr. Loehrer at our recommendation and he said she COULD have an operation. She is back to work now, she came to the big luncheon we had in April, and we met for high tea at the 4 seasons.

The dr. we fired said it was not curable. I didn't like her attitude. Many of my friends with cancer get a "whatever you have, we have a treatment for." I have never heard those words. But 3 years ago, there was nothing. And now at least we go from one drug to another. If Gleevec doesn't do it for me, Dr. Stevenson said next maybe he'd try Tarceva. So I am pleased there is a 'next.'

As for 'what more can we do' ---that is what we are trying to do with the Foundation. No one else has taken on this task anywhere else around the world. At least we raised enough money to sponsor one research grant at Ohio State to find the gene that causes this. But more research is needed. I do not have the energy this year to put on such a massive fundraiser. It disturbs me not to be able to keep up with raising the money we need to find out more. We are open to suggestions.

The medical world continues to ignore us. We are not enough of a patient base to start studies unfortunately. We need to make drs. aware. One man from Tennessee wrote in that they couldn't read his biopsy; they had no idea of what he had. The hospital sent it to the Mayo clinic and they identified it as Thymic cancer. His hospital could not do the necessary treatment so he flew to Texas. This is happening all the time. I wonder how many thymic cancer patients have been mis-diagnosed and subsequently mistreated.

1-4-05
These scans are wearing - it takes a month of stress [worrying ahead of time, the day of, getting the results, adapting to the results].

But something nice did happen. First we found out the pharmacy won't release the Gleevec to me because it has to be pre-certified by our insurance company. The oncologist's office is working on it but they are sure it will be denied since Gleevec is for one type of chronic leukemia and it has not been proven to work on thymic cancer. Nothing has been proven to work on thymic cancer. Catch 22.

We will definitely appeal it but it could take over a week, at least. I need more pills and they are $118.00 a pill!!!!!! Cancer is the disease that keeps on taking. The social worker at the oncologist's office is a walking encyclopedia and she found a non-profit cancer society in Atlantic County that gives you a one-time 2 week supply of your drug in cases like this. So I have taken the Gleevec for 4 days and can pick up my free supply tomorrow. Is that an amazing story of wonderful people.

Truly, if it weren't for Alan's support, I couldn't go on. He is a gem, a prince, my lifesaver. His constant search for therapies and new theories is what has kept me here, that is a given. We just spent our 42nd New Year's together and he wants 42 m ore. He is a love that brings tears to my eyes.

Well now I am wondering if the cough syrup did in my vocal cords or the fact that we have three ionic breeze air cleaners [they work by making ozone].

All I know is tonight we tried to go back to my favorite class at the gym and after 15 minutes I got a trigeminal shock that knocked me off my feet - I felt so much pain, I thought I'd faint. And it would not go away. It felt like someone shot 100's of needles, in my gum, roof of my mouth, lip, tongue and cheek. And it brought tears to my eyes, so I walked out to the hall. Then my teeth started to hurt and it felt as if my tongue was being cut with a scissors. It was painful to swallow... couldn't open my mouth.

After we got home, Alan called the pharmacy to see if Gleevec and neurotin could react to cause this. It was frightening because it lasted for 2 hours and at first I couldn't even swallow more neurotin. There are warnings on the Gleevec literature about using seizure medicine - the pharmacist thought it was ok. We have an email into a few drs. There are warnings on the Gleevec literature also about using aspirin, acetaminophen, and ibuprophen. Of course I use Excedrin all the time for my cough and it has 2 of those. The pharm. thought it would be ok to take it. At first I was going to go for something stronger like Percocet. I was a mess.

But as painful as it was I sucked some ice [anything in the mouth is a killer] and after 2 hours, I got some relief. What a night.

Tomorrow we come up to Hahneman and then Penn to the new pulmonologist. Isn't this the life!

1-5-05
At Dr. Brady's I had another trigeminal emergency and I couldn't talk or of course concentrate. They witnessed the pain. MY teeth and roof of my mouth felt as if someone stuck 1000's of needles in them. They shot me with ativan. My vital signs were off the roof [blood pressure at 200/110]. It didn't do much so they gave me a shot of demoral. Had me lay down in a dark room. May have to stop the gleevec...to see if it is causing it. It again lasted 2 hours and was excruciating.

Dr. Brady dropped another bombshell while I was in misery & would like me to come there and start radiation on the areas on the CT. Every day - you remember the bit. I am on overload and can't think. Tomorrow we get dr. Cassir's opinion here. To go to Philly every day for 4 weeks...it is 4 hours round trip.

We left and waited 2 hours for the pulminologist [ HE DID NOT SHOW - he was in the I.C.U.].It was really annoying. Couldn't someone have told us; I was sleeping most of the time from the shots. We have to get a pulmonologist and do something about this damn cough. It is literally killing me little by little. Being on the computer starts it up. As do so many other things. Poor Alan.

1-6-05
Dr. Brady called this morning to see how I was.

I was so out of it from the Demerol that I slept on Alan's shoulder most of the time but today I am mad. He never called or emailed so we are politely telling the drs. that recommended him what happened, for starters. Meanwhile I am still coughing.

And the trigeminal today was terrible - I had TWO 2-hour bouts with intolerable pain. The 2nd one made me take a Demerol, it was so bad. It was as if someone was in my mouth and sticking a screwdriver in the roof of my mouth over and over. This morning's attack was as the one's I described previously. Tears just roll down my face from the pain. But maybe you can relate if I say it feels like a dentist drill hitting the nerve and each one throws me for a loop.

The neurologist said to up my neurotin to 12 three hundred capsules a day. 3600 mg. SO I be incoherent. A lot. I stopped the Gleevec. If the trigeminal calms down, I will start it again next week. If the shocks start up again, then we know for sure.

One school says less radiation - Dr. Brady. The dr. here says the say high dose as before. I don't know how we are going to get to Phila. every day for 4 weeks.

1-7-05
I am not sure what God had in mind for me - my vocal cords are burnt and not always working, the cough keeps me from talking, and now I will explain a 3rd reason I can't talk. I do try meditating and breathing but when you are in acute pain, it is tough.

Oh do I remember those fluorescent foot machines in the shoe store - - - it was a game to see how many times we could run in and out of them.

The report for the endometrial biopsy came back inconclusive because the dr. never got the proper specimen of endometrial tissue. I don't know if I have to go back for another sample. He is on vacation.

It is so sweet of you to offer your home if we come to do the radiation. We will definitely keep it in mind. What we were hoping is if we do it to drive up and back each time since part of my well being in stressful times is to be near my own things.

Today we saw the local radiation oncologist so he could read my films. He'd like to radiate the spots too. SO where do we go - to Hahneman or here. We have to figure out who will do the best job with the best equipment. Here, they just opened a new cancer center with a new linear accelerator. I love both drs. But I do remember how painful the ride was to the hospital here each morning - and that is 5 minutes. And the ride home was tough too.

1-8-05
You have taken the words out of my mouth; I have always said how they treat animals more humanely than people. I have read Derek Humphrey's books and information from the Hemlock Society but am clueless...and need to do more research. I heard Howard Stern say once that those religious folks trying to run the show and deprive people of stem cells, etc. need a good 'dose of cancer.' I wouldn't have wished this on anyone but somehow, that type seems to have avoided all contact and emotion with the disease. SO Howard is right in this case.

1-9-05
Alan read that it is possible that the gleevec and neurotin could be competing for the same enzyme in my body and obviously the gleevec beat the neurotin to the site so then the neurotin couldn't get to my trigeminal nerve.

1-10-05
We are 99% sure the gleevec caused this horrid bout of trigeminal. I know my body really well. They put me on the drug starting 12-31-04. By Saturday I had this violent reaction to the Gleevec and had to stop it. Maybe it is speculation, but I am afraid to try the drug again once I get this under control. Until this, I'd get a shock or two of a lightening - like feeling every so often. I learned to live with that.

But by Tuesday, these episodes got worse and worse as I took more Gleevec and are each day thereafter I get one that is 2 hours long and the pain is so intensified that tears just roll out of my eyes. I sit still until it passes, keeping my eyes closed, almost fainting.

1-11-05
The good news is the insurance company came through without the hassle. The bad news is I can't tolerate the drug.

Thank you for asking. Today I finally am seeing the pain release itself to a tolerable level.

You know I didn't need Demerol when they performed my neck dissection or when Dr. Kaiser went through my side to get to my lung. But for this I need a pain killer.

Since the 3600 mgs. wasn't enough to eliminate a 2 hour bout each day, I saw the neurologist yesterday and he put me on Trileptal as well as the Neurontin. It is another strong anti-epileptic, like Tegretol. I am almost afraid to write the words for fear of jinxing myself, but so far, the long 2 hour sessions of pain are decreasing. So we may be on the right path. We were even considering Gamma Knife treatments, radiofrequency ablation or the microdecompression surgery if we couldn't get this under control but the neurologist wants to try to avoid surgery, as well as us.

I just feel so bad about the Gleevec; I really wanted it to work. But picture being in the dentist chair and his tool misses & hits a nerve briefly. That is part of what these episodes of pain entail for 2 hours.

Since I stopped taking the Gleevec I have had some improvement. I am terrified of starting those attacks again; I don't think my body could take it. If Alan wasn't there holding my hand through each 2 hour episode, I might have had to kill myself some way [sorry to write that but I kept thinking how dogs and horses are treated better].

Since all the pharmacy had at that point was 100's, I decided to titrate up so I took one 100. By Saturday I had this reaction that I knew was like sitting on a volcano. Maybe it is speculation, but I am afraid to try the drug again until I get this under control. Until this, I'd get a shock or two of a lightening - like feeling every so often. I learned to live with that. But by Saturday when I took 2 100's, the duration of the pains were getting longer. Sunday I took 4 100's and really upped my neurotin dosage. Monday I took 1 400 since the pharmacy had gotten them in and I needed even more neurotin by the evening. I called my neurologist and he suggested I go up to 3600 mgs. This is the highest dose I ever took. My friend Lucille can't even take 1 300 mg tablet each day. By Tuesday I had a pretty violent reaction to the Gleevec and had to stop it. It made my trigeminal neuralgia [right facial pain] so horrible. And I don't see how my body withstood it.

I asked the radiation oncologists a lot of questions to see which one is better. I think we will need an expert to see if both instruments are the same. Like last time - it will hurt. They will burn my esophagus again since it is in the path of the growths. So I won't be able to eat without pain. And the vocal cords are also in the way so they will burn and I will lose my voice. And the lung is in the way and I could get pneumonia. And on it goes. So I prefer to be close to home and do a short ride. Plus, yes - more scar tissue. And it is not a permanent fix. Just palliative. Crap!

The only other time I had such a reaction with the trigeminal nerve was when the cardiologists would put me on various statins. But even then it was not as debilitating as now.

1-14-05
Most of the week, I have been sleeping day and night. I know I am over medicated but it has been necessary to quiet the trigeminal.

We feel like we are being pulled in so many directions. Two radiation drs. want me to get radiation. The medical oncologists want me to try the Gleevec one more time. I do not want to go through that pain syndrome ever again. Dr. Stevenson said that this time he would titrate me up with the Gleevec, starting at 100 mg. I left a message with the neurologist to see if he may have any suggestions for what I should take to prevent a major episode again.

ANd now Dr. Check wants me to stay on the mifepristone. Now I have to choose a treatment soon - last week we saw the local radiation oncologist so he could read my films. He'd like to radiate the spots too. I love both drs. But I do remember how painful the ride was to the hospital here each morning - and that is 5 minutes. And the ride home was tough too. SO where do we go - to Hahneman in Phila. which is 2 hours EACH way or here. Maybe bad weather. We have to figure out who will do the best job with the best equipment. Here, they just opened a new cancer center with a new linear accelerator. I love both drs. But I do remember how painful the ride was to the hospital here each morning - and that is 5 minutes. And the ride home was tough too.

I need an angel to land on my shoulder and tell me what to do.

1-16-05
I am thinking of asking dr. Brady [who is world renown] to come visit the cancer center to see the new equipment and maybe consult with Dr. Cassir while there. I will tell him we will pay for his transportation and time. But how to approach him and then Dr. Cassir -like stepping on eggs.

1-17-05
All last week I was so tired from the double drugs to calm down the trigeminal nerve. The new combination of the meds from the neurologist have given me a week of peace, thank God. Now he is trying to get me to taper down from the 3600 mgs per day of the Neurontin [and get to 2100 mgs per day]. At the same time the dosing schedule he made up is to get me to take 2 Trileptal in the morning and 2 in the evening to replace them so I don't get break through pain. I do not need the Demerol any more.

Since I am feeling pretty well again, I suppose I should be proactive and try the Gleevec again. It is the scientist in me... it makes it a controlled experiment. The neurologist, Dr. Kevin Hunter, said if the pain starts to quickly add in another Trileptal. Probably by the end of the week, I can muster some bravery and swallow a Gleevec.

A friend of ours [a g.i. doc] suggested maybe to look into serotonin antagonists to see if that would help the pain any, if it returned.

The other thought he had was if someone could look into the pharmacology of the Gleevec and Neurontin pathways. Maybe there is a way to over-ride the pain that way.

1-18-05
Thanks for asking. Alan is nervous but putting up a good front. When I cough a lot or have pain, he is lost. It is hard to deal with cancer all day every day - not only me but all the inquiries from people contacting the Foundation. It'd be nice to win the lottery and hire an executive assistant [isn't that what they call them these days]. For stress release did I tell you he is building a chopper [it will be gorgeous - wait till you see it]. Even I am excited. It is out for painting now -a seashore beach theme. He is amazing that he can do this. He needed a project terribly. And only a couple years ago, he had just learned to ride a motorcycle - he took the state's 3 day safety course. He bought his first motorcycle and he loves riding since it clears his mind [but while he is out I am having a nervous breakdown worrying].

Thankfully, I saw the neurologist last Monday and he put me on Trilepal as well as the Neurontin. It is a good combination. I am almost afraid to write the words for fear of jinxing myself, but so far, the long sessions of pain are decreasing. So we may be on the right path. Most of the week, I have been sleeping day and night. I know I am over medicated but it has been necessary to quiet the trigeminal nerve.

1-19-05
Dr. Brady called today and Alan answered, thankfully. Suddenly I got so nervous and felt as if I couldn't talk to him. I feel terrible not planning going there for the radiation, when I decide. And I don't want to upset him. I am pretty sure if I have to have it, I don't want to travel. But how to tell him. I am thinking of an email...but I have to choose the words so carefully.

1-20-05
Last week I went to an ENT to have the vocal cord test. It has been imminent for about 6 months now but I keep putting it off since who likes a tube snaked down your nose and to the back of your throat. So I go [I've had 3 of these so far] and to a new dr. locally recommended by my radiation oncologist. He starts to do the test without any numbing spray. All of the other 3 the drs. [in Phila.] sprayed first so the tube went easier around the gag reflex. He says I don't need it. And does the test. Luckily I was fine but no one ever heard of it being done this way.

1-21-05
Yesterday, I mustered some bravery and swallowed a half of a 100 mg. Gleevec. The standard dose is 400 mg. per day.

Dr. Brady told Alan that he thinks he can do the radiation without a good deal of side reactions and using the I.M.R.T. technology. That type tries to spare healthy cells. This is the complete opposite of what he told me a month ago. This is a bit different than the radiologist here. He said he couldn't use the I.M.R.T. technology and that the side reactions would be similar to last time. Talk about being confused. Now it is not apples and apples anymore.

1-22-05
I had decided 95% sure, not to go to Phila. for the radiation. But we don't want to step on any toes. We don't want the dr. here to think we don't trust him and called in the forces. But if there is some way to get the 2 to work together, it would put my mind at ease with my choice.

It is just rain here so far and 43 degrees. We stayed in and I made chicken soup and got some ingredients pre- mixed to make a pie tomorrow [I like to get the dough in a ball, the flour and other dry ingredients in a bowl, etc.]. But we hear we are not allowed to go out-the governor declared an emergency and it is forbidden.

1-23-05
The first decision I made is to try the Gleevec one more time as a
controlled experiment...to be sure that is what caused my pain episodes.
Being very careful this time, Thursday, I swallowed a half of a 100 mg.
Gleevec. Then I took the same dose on Friday. While I slept Friday
evening, I felt a feeling in my right cheek, as if I had hit the gum with
my toothbrush. It didn't go away. With trepidation I took Saturday's dose -
still cautious - another 50 mg. I had the same feeling all night into
today. Each night while I slept, I had a headache also. Today I took another
50 mg. If it doesn't get any worse, it is a sensation I can live with,
compared to the other episodes. If it gets rid of my cancer cells. So for
now, I will plod on slowly.

The only pain I have is the coughing. I still try to figure out what will
make it stop -sometimes a lifesaver will help or a hot compress. It is all
temporary and then I start up again. It is worse and I am sensitive to more
things---like even the coffee pot brewing.

1-24-05
Well I am not on the computer as much now since it makes me cough violen tly even with air cleaners.

So sorry that my ramblings get you upset; I long for the day again when I can email our fun adventures...like having lunch in N.Y.C. with an actor. I am really getting tired myself of always complaining. It has been so kind of you to listen and be supportive and you have become quite dear to me. Just take away something from all this - find the strength to be yourself and only do what you want to do. Life is too short. Have no regrets. Don't squander time. And make your dreams happen - there is a prince charming out there for you.

Funny you should mention that dextromethorphan. One of the things I tried for my cough had that in it and the next day, my throat was so dry that I coughed harder. And since I am on thyroid hormone too, I wonder now about some of the other affects I had.

1-26-05
I didn't cough outside the house at the eye doctors but once I come in...hack hacking away. We can't figure it out. The house is spotless so it must be something unique in one of the building materials I am wondering. It is like detective work. There is no visible sign of mold or anything so we don't know where to begin.

Thank you so much for the compliments. Your emails are so uplifting for me. It is the little things that help a lot. I don't see myself that way - just doing what most cancer patients do, trying to grab a few more days or weeks or years...whatever we can.

I spoke to the Rabbi [Slarz] I know that has leukemia and he takes 600 mg. He said most patients with leukemia take 800 mg. They found that the lower doses didn't put them in remission. I can't worry about that. I am taking at least some and I will up it at the right time.

I need to go decompress. We just got home from what I thought would be a routine visit to the ophthalmologist and he tells us he sees glaucoma in both my eyes. I feel like Job.

So glad you concur with us. I am stalling as long as possible with the radiation.

1-27-05
Meanwhile I am upset at this email I received from a friend who is in FL. now. She had lymphoma 2 years ago herself and got very upset when her 30 year old daughter told her to get on with her life, after she was lucky enough to go in remission. I need help for an answer for this. I have never gotten an email like this from anyone and am so in need of what to say. Your emails are the total opposite and fill me with hope and a sense of peace and equilibrium. Can you believe this.

Is it possible for you to concentrate on something else instead of health issues. Learn to knit or crochet. anything to try and think of something else beside Cancer.Seriously you are consumed with this fahcockte illness!!!!


Today happened to be my follow-up visit with the local oncologist. Her nurse was looking up some information on my Gleevec and saw that it can produce facial swelling. We extrapolated that perhaps my swelling was internal and pressed on the trigeminal nerve, causing my episodes. Further, she read that ocular changes can occur which may explain the new glaucoma diagnosis which is swelling on the optic nerve. Why didn't the other oncologists figure this out ---or the neurologist.

No we won't give up hope; I just read there are over 300 NEW cancer drugs being made soon. Three years ago when I had my first surgery, they had NOTHING for me but the radiation. ANd look now. They keep coming up with new tortures. I am so glad my insurance covers this and allows me to have it. Yes, we heard about the plaque culprit.

Whatever - I have to put in drops each day so I don't go blind. AIn't this the life. Getting old stinks...and I took care of myself. What happens to those who abuse their bodies?

1-29-05

I think my maternal grandfather may have gotten glaucoma in his late 80's. Yes, for the next 2 weeks he is trying the drops on one eye [we just wondered why he hasn't done both - unless it is for comparative purposes].

You are so funny and make me laugh out loud - you know, when he said I had this, I thought exactly what you wrote. Like this will be so far in the future and the thymic will get me sooner.

I am still on the Gleevec...a tiny dose. And when I say tiny, I mean 1/8th of what they'd like me to be on. Imagine if I took the full dose when I have these reactions on 'dust' as one Dr. would say [just inhale it, he jokes]. Speaking of which, doesn't marijuana help glaucoma? It is hard to weigh what to do - take the cancer medication and have serious side affects or---

This disease seems endless at times - doesn't it. Some people get cancer and go through treatment and then have a break ---a year, 5, maybe 10 or more. For us, it has been 3 years non-stop and now I am wondering, why don't terrorists get this or murderers. I would be glad to 'send' it to one of them.

Gleevec was our hope for 2005.

This is so "typical Barbara" as the doctors are saying. We were very disappointed because I am allergic to the new miracle drug, Gleevec. It caused trigeminal neuralgia episodes in me. The only way to explain how painful it is, is excruciating pain in my right face [and this time I had it for 2 long hours long per day]. Each day it was unbearable lightening like shocks/pain. It felt like someone was in my mouth twisting my cheek, pushing a screwdriver into the roof of my mouth, my teeth started to hurt and it felt as if my tongue was being cut with a scissors. It was painful to even swallow a pill. The only feeling I can give you to relate to is when you go to the dentist and the tool he uses hits a nerve and you get that jolting shock.

Luckily after a week of this, the neurologist gave me two anti-seizure medications so it is much improved. I mustered some bravery, so I will try it again - it is the scientist in me to make it a controlled experiment to be sure the chemo caused the problem. BUT, I am starting at a much much lower dose.


1-31-05

Today we went over to the Asian supermarket [about a half hour from here]. It is like a Shop-rite or Acme in size and they have aisles and aisles of every thing. I was looking for Cerassie tea [momordica charantia]. It has been so long that I have been searching for it that I forget what it is supposed to do. Anyway, when you enter they have rows of fresh [?] fish - some on ice and some in tanks. The odor really got to me in about 10 minutes. Just when I found my tea, I knew I had to leave. We found tea for voice / tonsils, too. They have bull testicles too. But I couldn't think what to do with them so I passed.

Sitting and hugging Alan is all I need. Maybe I should write her that too [but that would be boasting - she has been looking for a man for 20 years]. Anyway, for some laughs, we ordered some DVD's of the Larry David show "Curb your enthusiasm." Everyone says Alan looks like Larry David though I don't see it. Even at the doctors' offices; they make a big deal when he walks in. At one office, they told me they swear he is Larry David and he is just not telling anyone. It is pretty funny since it happens in the supermarket, malls, everywhere.

2-1-05
I got an email from the Dean at Temple [when I was getting my master's]. His specialty is science education. He does some volunteer work with Stockton College. He has a student that he's working with in chemistry at the Pleasantville High School after the middle of Feb. He is originally from Liberia and did not do well in his first attempt. If he actually does follow through on this commitment he would like me to visit with him to offer another assessment of his teaching? He said he could use a second opinion.

Today I was exceedingly tired and not feeling great - I think I am on too many medications and maybe shouldn't have increased the Gleevec a hair.

2-2-05
Got to give you credit. Traveling is surely exhausting. You explained the aftermath so well. You have so much mail to attend to also. Wash, unpacking, paying bills...yikes. We did it [for pleasure] when we were younger and now we wouldn't attempt any of those trips - climbing pyramids in the central American jungles, skiing [it is just too cold], traipsing around Europe for a few weeks, and on and on. We enjoyed it when we did it but home was a welcome pleasure and after awhile, we'd plan trips and not want to go since our house was so fixed up the way we like it.

We did the bulk of it when we taught and had summers off; compared to now, it makes our snafus sound like a walk in the park. We especially liked staying in castles instead of hotels.

You are so right; if I were alone, there'd be no way I could get through an illness like this. It wears you into the ground. And sometimes you just need help. We are 99% sure the gleevec caused this horrid bout of trigeminal. I know my body really well. They put me on the drug starting 12-31-04. By Saturday I had this violent reaction to the Gleevec and had to stop it. Maybe it is speculation, but I am afraid to try the drug again once I get this under control. Until this, I'd get a shock or two of a lightening - like feeling every so often. I learned to live with that.

But by Tuesday, these episodes got worse and worse as I took more Gleevec and are each day thereafter I get one that is 2 hours long and the pain is so intensified that tears just roll out of my eyes. I sit still until it passes, keeping my eyes closed, almost fainting.

This goes beyond alleviating symptoms; the real problem here is to stop the cancer cells from growing and invading more healthy tissue. We will see the medical oncologist tomorrow. I suppose he knows enough about the drug to see if I should stay on it or not. I really think patients have to learn as much as they can and make their own decision. So we'll listen to him and Monday see if the ophthalmologist feels the drops are controlling the glaucoma. Then decide. If I go off the drug, I suppose I'll need radiation to get the tumors or else they will keep growing and hit something vital. It is very frightening. We have seen what has happened to a few other patients that have this and sent their story into the Foundation.

2-3-05
My life is so similar to other cancer patients; the ones we know from the Foundation have much worse problems than me [sometimes I see my future in them though I try not to]. Magnify the 40 ones we know by all the cancer patients in the world and there is too much suffering out there. Yet terrorists and rapists and murderers get nothing. This better be explained to me someday.

Today we were in Phila. all day seeing drs. Don't know what to write - we are still processing all they said. Basically they leave it all up to me. Swell. Either get radiation or stay on the Gleevec. I think until we sort out the eye problems [I have 2 more appointments in the next few weeks for further tests], I'll try to keep slugging down the drug. You are right - got to get those al quaeda. It has caused other side affects [like a rash and headaches] but I can put up with that. I just don't want to go blind from it. If I can take it another month, I can get scans and they will see if it is working at this small dose.

If it is not doing anything to the tumors, on to the dreaded nightmare of radiation. I am stalling one torture for another. The medical oncologist did say that there are some cancers where a smaller dose is enough so that was good enough for my ears. You have been saying a lot lately about smaller doses. Let's hope that a small dose of this kills them. After all look how potent that small dose is in me.

We also saw a pulmonologist who wants to try me on reflux meds - he thinks because of all the trauma in that area of my body from the surgeries and radiation, the cough may be caused by that. For one reason ---he thinks the cough may be the result of a few things. And the reflux meds, he said, may improve my voice. I am leery of this theory but will try it. I do know that meds for one diagnosis may help other conditions so here goes. Another pill to my insane number of pills I take already. I was one never to take an aspirin.

Welcome to my world...though I pray you get good news. But this has been our life for 3 long years now. It gets to me that there has been no respite from it. Most people get cancer, then a cutting or burning or poison, and then that is it for 1, 2, 5 or even 10 years or more. Ours is exactly what you are going through. A suspicious test first, the waiting, planning more tests, and for us, getting bad results, and then decisions which treatment to use. Since there are NO treatments for thymic cancer, there is no right path.

We have been so impressed with the medical community. From around the world, they answered or called and have tried to help in any way they could. With the internet, the whole world became our support system. Since this is so rare, they sat up and took notice and tried to guide us, as best they could.

Alan says we are learning what is in the heart and souls of those we know, at a time like this. As to why it happened to me......I really don't question it but know God has his / her reasons and we just don't know them all yet. That seems to be the consensus from most people. He has something big planned for me and maybe it is the Foundation that we started. It is so important to give back for all we have received - the care I have gotten has kept me here till now.

We are trying, as my energy permits, to enjoy each day. I really want to keep the days normal for Alan and do what we always did [barring the p.t., drs. appointments, and that type of activity]. I do my best to ignore the pains and syndromes of spasms in the areas from both surgeries and the radiation and chemo drugs. Comfort now is as basic as clothes that don't hurt on my neck where I was fried. The skin is so sore still. I try to work with my voice so when it goes I don't panic. Email is my saving grace to keep in communication and feel a link.

We both have been learning meditation techniques in that regard, doing yoga, tai chi, etc. to help. A while ago I read "Don't Sweat the Small Stuff" and the writer says that when things are going bad, they don't stay bad forever [on the other hand, when life is good, that doesn't last as well]. Guess we have to learn to bounce from one crisis to another and enjoy the moment.

We are dealing now with several friends getting a recurrence. That is the nightmare of this dread disease. It is like a living hell. That news is what put me over the edge in March 2003 and I had to take Valium. Didn't need it the 1st year. The first time you just follow the path the drs. set before you. But once you are wise to what the treatments mean, you are terrified of doing it again. The battle to lick this thing is not going fast enough for my tastes - if they can send a man to the moon, then they should not have people suffering with barbaric treatments.

The valium keeps me calmer and centered and I make better decisions and hopefully my immune system will stay sharp and fight back. They say they are related. This has been the darkest period of our married life, as you can begin to understand now.

2-4-05
Your analogy of the Dutch boy with his finger in the dike is so applicable to us all. I feel the same issues as you even though our cancers are so different. You are smart to be content with stable and baby steps. Our minds have been re-programmed to accept this. It is all we can do to mentally survive.

I want us to get good news. I want us to stop getting tumors and stop needing new types of treatment. I want us to stop having pain right now and be able to enjoy ourselves as again. I get mad as hell sometimes.

You and Rich have been unbelievable these last 3 years. Knowing we have your thoughts and prayers makes a very stressful time less traumatic. But you go so much further. It is just so sweet and caring of you to offer your home...again. You two are so dear to us. A million thanks for thinking of us and opening your heart and your home. There aren't words for you two. For now, I am not planning on the radiation [will explain below] and if I do go for it, I tend to want to have it here. It gets complicated. If I'd have any problems and we were home during the weekend, the dr. would be too far away. I know last time, there were times I had to see a dr. every day so it is best to have it here. Part of the immune response depends on our bodies being happy and in balance. If I am not home with all my 'things', I don't feel in equilibrium. You made me laugh; saying you are very quiet, like that would be a consideration.

2-5-05
You'll like this one - Alan had put the daily show of All My Children in the
vcr and we were watching; Cameron came on. Then the phone rang and it was
Cameron. They talked for a long time. He'll be here March 12th with
Vincent.

For some reason my voice is actually worse. I think the more Gleevec I
take, the more swelling it causes and now it is pressing on the vocal cords.

2-6-05
I treasure your prayers; it is the most wonderful thing someone can do for
me. And of course you are in ours. We beam you good vibes often.


It is such a shame that Terrell has so many trials each day. He must be a very strong person to deal with this as long as he has. He teaches us all a lesson. He has the prayers of many people - we have enlisted everyone we know to pray for the Foundation patients. He and I have something miraculous in common - spouses that love us dearly and help us face the ordeal.

Thank you for reading my log. I'll keep adding to it till I get to the present. It is hard to do because I have to edit it and I have a hard time reading it over and re-living it. Once is enough. Thank you for the compliment though I don't see myself as amazing - - - at least no more than any other cancer patient. Most of us learn 'on the job' what we have to endure and how to do it.

The similarities between Terrell and I are too much. Second hand smoke and fumes from carcinogens are an evil combination. Eventually this will help 'them' figure out more about how we got this we hope. Three years ago, it was only me. No one else. We are pleased to have found others to help us solve this. I think about 75% of the patients [I have to check our data base] have worked in a medical or scientific job or are firefighters or like Terrell, dealt with acid and concrete dust.

2-7-05
I agree with you, choosing quality over quantity. Some people don't understand but I don't care; they say if there is a chemo out there. get it. Whether it is for thymic carcinoma or not. That is senseless.

Also you are right about knowing as much as we can ---which with our disease there unfortunately isn't much but with the thymic forum, at least there are others that give input on what they have had and what works and doesn't. It is kind of groundbreaking. All my drs. have homework - they MUST read the website and learn as much as we have.

I don't know what is better; your pessimistic drs. or my drs. ......they don't say much at all. Never have.

I think Gleevec is stifling my vocal cords too - the edema it is causing could be paralyzing one of them. I really can't talk above a forced whisper.

I had a bad night last night and couldn't stop coughing, and finally took the codeine cough syrup after I was very sick to my stomach. The syrup is still working and I had a light day of coughing but am oh so so tire. Could fall a sleep at the drop of a hat. There is that quality of life thing again. A friend came over and sat on the patio with me a while and that was nice - we have the glass in and Alan put a heater out there.

2-8-05
the drs. and nurses say I have a restricted airway now and so many variables will be affecting it. Merde.

People have offered their homes. For now, I am not planning on the radiation [will explain below] and if I do go for it, I tend to want to have it here. Friends that are so dear have offered us their homes if we want to stay in Phila. during the treatments, which is generous and loving. It gets complicated. If I'd have any problems and we were home during the weekend, the dr. would be too far away to see. I know last time, there were times I had to see a dr. every day.

Alan is a true blessing. And that is why it is hard to wish for anything else - having someone like this is all you can hope for. And that is why it is hard to wish for anything else.

Yesterday we visited the neurologist and the ophthalmologist. The face meds are doing a good job; I picked up some creams that are specially compounded by the Superfresh pharmacist that have tegretol in them and could help an acute episode. I like to have an arsenal here.

The eye drops are helping the Glaucoma in the one eye; so now I am starting on the other eye. And in 2 weeks I get an optic nerve scan and some more tests.

we will be going up to Phila. next week to see our friend Rich who is a G.I. and have him research this reflux med theory too. ALan needs a check up with him also so that will be another day up in Phila.

Cameron and Vincent and Aiden are coming in to do a signing at the T rop. We plan short term --- special dates we look forward to. There will be hors d'oerves, etc. They both said they want to see us so we hope they have time before or after the event - So this will be right up my alley. We plan short term --- special dates we look forward to. SO instead of a time period
away, we try to do it this way. We had traveled so much that now we have no
desire - I'd just like to feel good and enjoy our home and neighborhood [the
beach and the bay].

What fun - la la la la lahhh. We live for days like today with NO appointments, prodding, poking, etc. Though there were a lot of phone calls to make more appointments and to take care of insurance problems, especially associated with getting one RX filled at the pharmacy.

2-10-05
I am including your thoughts in my letter to Dr. Brady - they were wonderful. Just what I need ---I was having a mental block.

All I had down thus far was that we'd like him to come and see Shore Memorial in Somer's Point because they just built a beautiful new Cancer Center. And we said maybe we can get in a nice lunch or dinner with a water view and we would be happy to send transportation for him. I said I'd especially like him to see the new linear accelerator there. So we will see what he says next.

Thanks for the good thoughts and the compliment - I don't see it as strength so much as more of a reflexation of the smiles and words of those that support me. I am not doing much differently than most cancer patients do. Maybe it is the luck of funny bone genes - remember my Great Grandfather was Sliding Billy Watson and our family tradition is humor to deal with everything. So we try to laugh thru the tears and that is not always easy. Life can be so suddenly cruel so you have to be able to look back and say how you didn't deny yourself anything and you did all you can while able.

I have had absolutely no voice the last 2 weeks and if it weren't for other problems, I'd be worried and track this down but I don't want to see ONE more dr. So I whisper and that is hard because it makes me cough. I hate cancer and the treatments because you never are the same afterwards.

Thanks for the prayers - save one for Alan. It is never peaceful for long. We have to come up Monday to see Rich Moses; Alan has been having some g.i. symptoms that the primary says need checking out. We are hoping it is nerves [he is so sad sometimes with my situation and I feel so bad]. We'll be at his Huntingdon Valley office at 1:00 for a ...ta dah...yisch... sigmoidascope for poor Alan. We prefer Rich to the 'local talent,' it goes without saying. The guy Alan used for his colonoscopy here was o.k. but this summer, his partner killed a man by burning his g.i. track. The nurse changed the settings and didn't tell the dr. Like he should always check but down here, the cream of the crop doesn't always practice.

People think if you are on an oral chemo, you have it made; they have no idea it may even be stronger than the toxic I.V. poison. As you found out. I feel as you with the Gleevec - no energy and I am pushing and trying to take it 2 more weeks till my scans to see if it is working. After reading your information, it made me leery. Though I do have thymic carcinoma and did test positive for CD117.

I am not sure what God had in mind for me - it seems like these last years something is always preventing my from talking [which I love to do]. First my vocal cords were burnt by the radiation after my first operation and now not always working; the cough keeps me from talking, and then the trigeminal locks up my mouth

no one deserves to go through this ---we all had a good life and it should end good. This is all too terrible for words. We hope you have people there to give you strength and help.

We know exactly what you mean about feeling detached. It is a surreal feeling going through a catastrophe. How to make it bearable. Who knows. We keep putting one foot in front of the other, pick ourselves up each time we get knocked down, and have hope.It is a terrible battle.

2-14-05
Well don't we have the greatest mutual admiration society - fighting over who's the strongest. Larry Koonce must have set this one in motion. I think a 15 year old can't help but fear - they have only been here a short time compared to us and have limited experience. It is good your granddaughter is so sheltered from horrid disease.

And also like you, My neck lately feels so swollen. I know it is the Gleevec creating the pressure from whatever it does with fluids, as we learned with my trigeminal area and then my optic nerve.

Anyway Rich did a full colonoscopy on Alan, anesthesia and all. And thank God, the best Valentine's present, is Alan checked out fine. A bit of diverticulosis and Rich took a biopsy to see if there is any hidden bacterial infection. Probably "Irritable Barbara Syndrome. SO while Alan was coming to I sat with Rich and he said my neck looked swollen. He'd like me to get an M.R.I. of the area.

But I understand how you can say 'enough.' I have felt awful for a few days - absolutely no appetite to the point of nausea most of the time. Later in the day I can force some food down but I know this is the Gleevec. As I sleep I have a headache. It has been terrible. So yesterday I skipped my pill and almost felt human.

Your emails are filled with wisdom and positive spirit. It is a gift that you give of yourself and I appreciate it so much.

2-15-05
An old friend, we were both in her wedding back in 1968, just emailed she has breast cancer. Her husband was the best man at our wedding so you see how far back we go. He is the one who headed up personnel at the PHila. Board of Ed. and just retired.

And another old friend from the '70's wrote that things are very tragic now - they are in FL. for the winter. Her husband Arthur has Alzheimer's - he was 65 and they had just gotten married after dating 35 years [I think I told you about them] had a serious hospitalization and the dr. asked her feelings about resuscitation, feeding tubes, and making arrangements for hospice care now.This is so upsetting.

Arthur has a living will - the drs. have to 'check it out' they told Dolores. She's had a nightmare there. One day when this started, since Arthur in non-communicative, he wouldn't stop pacing. The dr. told her to call 911. The idiots put him in handcuffs because they said it was domestic violence. She has had one problem after another. He had a heart attack and no one knew.

2-16-05
We were spending 18 hours a day on the Internet trying to find out information [that info, of course, wasn't there then and we were devastated - we could only wish that 1000's had had this before me so some protocol would be set up]. As of today we know 30 people with this type of cancer. Our lives were turned upside down in a moment and never righted. I am so proud of Alan that he created the Foundation and is trying to collect data from those 30 people to help all 30. It is hard for him to deal with me and the Foundation all the time and he definitely needs a stress release from cancer 24 hours a day.

I can see how your mother feels; we lived that with our grandmothers when my parents died and Alan's father died. We had 6 grandparents then and they'd say the same thing.

When I had my radiation the women before and after my appointment were there for breast cancer and they sailed thru it since the beam doesn't pass thru any vital organs. They had no burns. Unfortunately I was getting 3 times the dose as they were and it hit my esophagus, trachea and vocal cords. So take heart in the fact that you won't need chemo and in a few months, this can be put behind you with hopefully only follow up scans. The nightmare is always in the mind but if you can get a clean bill from doing what they say with minimum toxins, it makes it much easier.

When you said food doesn't taste good, believe me, I have lived that road. For 3 years, I try to do things that are not centered around food. Especially when I am on a chemo, like now. I have no appetite and can't even swallow a bite most of the day. The Gleevec makes me nauseous and nothing appeals to me. I try to eat later in the day when the pills affects are lower because it is time for the next one. Oral chemo is as bad as intravenous chemo. It is so toxic. I think I lost 10 pounds in the last 2 weeks. And those 3 times a day injections I had 5 months did the same.

I am trying so hard; everyone wants me to stick with it and I know it could mean my life but to feel sick and in pain all the time from this chemo that there is no quality of life either.

As you too well know, it is hard to deal with cancer all day every day - not only me but Alan answers all the inquiries from people contacting the Foundation. It'd be nice to win the lottery and hire an executive assistant [isn't that what they call them these days].

You are so right - there should be a limit to the torture.