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December 7, 2006.......http://www.marciesalaskaweb.com/
Hi Everyone Ė Merry Christmas and Happy Holidays, from Marcie and Jim Foley
Iím sending out this update because I just finished my first round of chemo treatment yesterday (a 21-day treatment time) and returned to the doctor today to find out what, if anything, this treatment had done to the rapidly growing tumor, and begin on a second regimen of treatment.
My doctor confided to me today that when he first recommended this treatment (called Alimta) in January, it was a bottom-of-the-barrel recommendation, and itís strange, because at the time I told Jim that I got the impression that it was, which was very scary. It was new, and much was unknown about it. It is one of the new ďtargetedĒ chemos that doesnít attack your entire body, just parts of it because it is targeted to do one specific thing Ė to kill three enzymes that the cancer needs to feed upon, thus starving it to death.
He told me today that they are using it instead of Taxiterre, which was the last one of the old-style chemo treatments I had; this was in October and November of 2003. This was the harshest chemo treatment for my type of cancer by far, and it left me very ill, but it reduced the tumor to a mere wisp of a shadow, which they thought to be scar tissue; so it succeeded in doing what was needed. I had been through four or five other regimens, most consisting of two separate chemos, given in conjunction with one another. I then had 37 radiation treatments in conjunction with a chemo since none of the other treatments had any serious effects against the very stubborn tumor. This began finally to significantly reduce the tumor size, but they needed something as serious as possible to finish it off after the radiation, so Taxiterre was chosen. I had to stop it before the final three or four rounds, because it was killing me, but it still did the trick. By this time I had taken all the conventional treatments there were, and my body was not in any shape to take more, so it was a good thing it worked!
The reason they are trying this new Alimta as a substitute is because of the harshness of Taxiterre, and the terrific side effects which grow with very single round of treatment you have. I withstood most of the other types of chemo quite well when compared with others I knew, but this one really floored me.
SoÖ that was how I went into the first round of treatments with Alimta at the beginning of this year, and I stopped taking it in late June, I believe. It was about 4 Ĺ months later before I began again on November 16th of last month. None of us had any idea if it would work at all again.
I did have one (hopefully) very good sign during this 21-day period. I had been coughing up a great deal of blood in the last two months from the tumor, as I had done late in 2005 when it first grew so rapidly. By the time it gets this large it has displaced room your lungs need to breathe, and they are both fighting for space in there, and evidently thatís what causes the bleeding. During the first regimen of treatment it took the chemo two months to stop the bleeding.
However, with this single round of treatment last month I went for my first chemo treatment on a Thursday, and the next Thursday, Thanksgiving Day, the bleeding stopped cold! It stopped it in one week exactly. We thought that was an exceptionally good sign. My strength and muscle tone have been going downhill all of this last two months, and the terrible fatigue of cancer, along with the bad coughing from increased allergies (another bad sign that the cancer was growing), kept me pretty inactive, mostly to keep the coughing down to a minimum. In the last two weeks, I have been feeling healthier inside and resting better, another good sign.
I had a lot of trouble with all the side effects common to this chemo, this time. For this one, the side effects seem worst at first, and improve as your body gets used to it and you learn how to mitigate the side effects as much as possible, in a number of ways.
My mouth was very sore, with large painful bumps all over, sore gums, and my throat became very dry and sore, too. For most of the first week I had to be extremely careful what I ate, and Iíve lost three more pounds from that first week even though Iíve been eating well since my mouth improved.
Additionally I had severe nausea again, requiring me to take Compazine, only eating very small amounts of food at a time, etc.
My eyes were seriously affected, including swelling, dryness and burning, constantly leaking tear ducts, and loss of some eyesight. There is evidently nothing that theyíve found to help with this, according to the doctor.
One of the side effects of the steroid I have to take three days per round of treatment is that it causes severe nervousness and jittery feelings, and if I get even slightly cold will go right into shivers and chills.
It causes severe sleeplessness (only 2-3 hours a night while I take it), and then I crash for days afterward, while my body is trying to catch up on it. It is impossible to stay awake, let alone do anything.
It also gives me quite severe ďpalsy,Ē or shaking of my hands. This increases with each treatment and has already begun, making it difficult to manage writing anything by hand. At times in the past Iíve been unable to even sign my name to anything. This is evidently not a very common reaction with it, because when I first developed it with other steroids given with all chemo to reduce allergic reactions (and I really have to have that with my allergy background), the doctor said he didnít think it was related, it was just ďmy age, and was to be expectedÖĒ well, this was because they thought I was dying I guess. Anyway, once I finished chemo, and the steroids, it took several months, but it gradually went away. I am already having difficulty in getting food from my plate to my mouth, and wonít even try corn or peas without using a spoon. That is very frustrating for me.
I also began to get the bad constipation that comes with this chemo, but I was ready for that with my homemade lemonade, and as I suspected it worked like a charm! I just have to ďupĒ my amount to keep things running fairly smoothly.
I had periods of strong metallic taste in my mouth, which also changes the taste of everything, and makes much of your food taste like cardboard, so I quickly shifted to eating anything that pleased my fancy, and if it tasted reasonably well, and wasnít bad for me, I ate it; anything to keep my weight up.
I also discovered, just this last week that I have something else that I wasnít aware of. It is called ďMuscle Wasting.Ē I have been very concerned because with every bout of inactivity I lose all muscle mass in my arms and legs, and am left with sagging, limp skin as wrinkled as the skin of an 80 year old. It is extremely difficult to build it back up again, and I never fully succeeded with that until this year. It has grown progressively worse over the three year period since I finished that first year (2003) of chemotherapy and radiation, with every bout of bed rest or little activity Iíve had to have. Early this year with the advance of the cancer growth, and my inactivity in the latter months of 2005 due to my broken ankle, I was dismayed at my condition. It took an incredible amount of determination to work through the pain and force myself to increase activity, since the less you do, the more painful it is to walk at all, or move your body to do anything. I also was hampered with fluid on my lung and the large tumor increasing the difficulty in breathing Iíve had since the radiation damaged my bronchial tubes. With any cancer growth it sends my allergies into wild fits, because it destroys my immune system, which creates increased congestion, which makes me cough and makes it even more difficult to breathe clearly. This further hampers movement and I had to spend several months on full time oxygen as I worked through all this, tied to an airline connected to an oxygen making machine in another part of the house. All of this is very frustrating, as well as painful and makes it difficult to do even normal things. I can no longer get down on the floor because my ankle still protests too much at trying to rise from it, because my arthritis is much worse in that ankle now. That means I cannot get to the back of any lower cabinets and can reach hardly anything on the bottom shelf. I have compensated somewhat by using a small office chair on wheels that allows me to reach more than without it, but is not quite perfect. I also got one of those far-reach things, which has a trigger handle to clamp onto anything light but is useless with anything that can break or is heavy.
Iím unable to clean floors, I donít have the breath to do it, and Jim wonít allow me to even try any longer, and he insists on doing all the sweeping and vacuuming because it aggravates my allergies so terribly. As someone who has always done all her own housework, and enjoyed most of it, I have found this all very difficult to accept, but accept it I must, and have found that allowing frustration to take over only invites depression in, and then Iím in trouble, so I have made some attitude adjustments to help with that.
So, after going through all of this early this year, fighting every single day, all day, to set priorities, regulate my limited energy to get the most out of it by interspersing activity with quiet times, I managed to get myself into the best shape Iíve been in for years. I gained back my muscles, the wrinkles disappeared for the most part, and my body felt much better. I could climb four to six steps just as any normal person again, I could walk up a slight rise, and my balance was much better. I felt human again. My normal walk came back. I felt fluid and limber. Now, in a two-month time, all that work of six months or so is gone Ė completely gone! I have it all to do again. Make that climb way up out of the valley again to the top of the mountain.
But, on the plus side, I do know that it can be done with the help of the right diet, nutrition and exercise. The information I read on this muscle wasting was pretty grim. Although it was identified more than 100 years ago, little was known about it until recently when some studies at a university showed that it was not simply from inactivity, and was seen in more than 50% of all cancer patients. They even identified that about 37% of all cancer patients died of this, instead of the cancer! They are beginning to find out more about it now. Today I asked my doctor what he knew in addition to what Iíd found, since the Internet is not always fast in getting information online. He said they now know that steroids are main culprits in causing it, and he showed me the muscles that are affected. I showed him my arms, and he agreed thatís what it was. I told him I had rid myself of the signs of it this spring, but it came back very quickly with inactivity and the cancer growth and inactivity of the last two months. We were interrupted at that point, and didnít get back to it again. I donít think he had any further information on it, however.
It is something Iíll have to stay on top of, and this should give me added motivation to fight my way through the pain to where I can move about easier.
Well, those were the worst of the of the side effects I had, and they were quite enough because all in all they lasted until just a few days ago, just before time to start all over again! I hope to have a better handle on it this time, and will resist the strong urge to sleep more forcefully. Itís a difficult thing to do. Every bit of you is telling you to lie down and rest, since itís the only relief you have for the constant pain, but the doctor says thatís the cancer telling you that, and you just have to resist it.
We have been praying a whole lot about this, and I want to thank each and every one of you who has added your prayers to lift me up also.
I was pretty tense waiting for this appointment day, afraid that despite the good signs, the results of todayís tests would show either continued growth, or no decrease. I have been taken aback several times when I expected to have a good report, and was very surprised to find a bad one awaited me, so I never try to second-guess them now.
My first appt. was for 8:30 and we got in to the X-Ray at the other hospital quickly this time, we didnít get lost, although we did ask for directions when we first got there, to get to the X-Ray department from the lobby. This time we didnít hand carry them, so there was no waiting for film to print. They are all digitized and sent them to the doctor via computer.
We left there and went to the doctorís clinic, where they drew my blood, and we got in to see the doctor right after, waiting about half an hour for him in the room, which is normal. He was very excited when he came in, because the best he expected was to see growth had stopped, and didnít know if weíd see any effect, but there is a noticeable change in the size. He didnít have measurements, but Jim, who saw the film over in X-Ray said it is quite noticeable, and more of whatís there is ďshadowyĒ meaning it is not as dense as it was. The doctor just couldnít sit still (he has a broken ankle now!) he was so excited, and then when I described what had happened with the blood he didnít believe me! He said ďÖNO!Ē Boy, he was really excited now, to have such good results so quickly. He is extremely excited to find that the Alimta can have good success, and I explained what I was doing to help alleviate the side effects which can be quite troublesome. I am now keeping a journal of them which may help him down the road, and I will give him copies of them.
He is going to be gone on the date that ends this treatment period, as it was to be the 28th of this month, and if we wanted to keep strictly on schedule, weíd have to see a substitute. We chose to wait an additional week to see him. Usually a substitute can do nothing to evaluate things because theyíre not familiar with your case, so we thought it best to wait, and will pray that an additional week doesnít damage whatever momentum has been built up by the chemoís regular schedule.
I have had my head in the clouds since leaving there, and have been deep in communication with my Almighty God, praising Him and giving thanks for this wonderful news today. And, we had an absolutely beautiful drive home through scattered snow coming over the mountains, and the drive down the canyon was spectacular, as usual. This drive is so beautiful it is easy to see Godís hand everywhere you look, at all times of the year. We always make a leisurely drive of it, because Jim wants to examine everything until he knows all about everything he sees. He just loves all of it. He is also very excited and pleased with todayís report; it has eased his mind a great deal.
We stopped to gather a bit of ponderosa pine boughs to add to the front door decoration and a few fresh decorations Iíll try inside with just a few things that donít normally bother me, such as the pine, redwood branches and cedar. I dearly love these fresh greens in the house at this holy time, so Iím hoping Iíll be able to use them. We didnít decorate last year (2005) because we were in the middle of moving and in La Pine I didnít get to decorate in 2004 because of my tiny surgery that kept me bedridden the last four months of the yearÖ so itís been awhile, and I may have developed allergies to them, but Iím hoping not. I hope to get started on all that tomorrow, along with wrapping the last of the gifts so we can get them sent off on their way.
Our drive to the post office to mail them is 15 miles one way Ė thatís the furthest weíve ever had to go to do that, but Jim really doesnít mind the drive, itís just sometimes hard to find the time for these long drives to anything and everything.
This last month Thanksgiving Day came just a week after my chemo treatment, so it was quite subdued, but my son David and granddaughter Callie were here with us, and we had a very nice visit, and everyone got to do something special, so we had a good time, Grandma just dropped off to sleep for a bit now and then when needed. Jim cooked much of our traditional Thanksgiving dinner so all I had to do was to help, except for the gravy, which came out very well, as usual (thatís why he wonít attempt it), and put together the dessert, which was an easier one than usual, but was enjoyed by all. I was not, unfortunately, up to making the pies I normally bake for each holiday, which is just about the only time I do them since Iíve been ill. We all look forward to them a lot, and we missed them.
We will be more fortunate with Christmas, which comes right at the end of the 21-day period, so many of the side effects will be wearing off by then if not sooner (Iím hoping for sooner!), and that should make the holiday more pleasant for us both. We will have a quiet dinner for just the two of us, which will be nice, especially since Iím not feeling too well yet.
We hope all of you have a wonderful Christmas, with family around you and much cheer and happiness. Please let us know how you are doing if you can, and keep in touch at this special time for family and friends. I wonít be able to send out cards again this year, now that Iím back on the chemo I wonít be able to write them out by hand, but so far I can still use the computer, although Iím making more mistakes, of course.
Iíve been working on more new pages for my website. As more and more people come to me for information about help for them with their cancer, it has become difficult to write it all out in a special message for each, and the information, some of it, is scattered all over the place on the computer, so Iíve been putting together a special section on the website that will hold it all together in an organized way, and in addition to some information that was already on the website Iíve included other helpful information that was in private files, and have been composing other pages of needed information for those who are trying to deal with cancer and/or other life-threatening diseases. Iím almost done with it, so you can look forward to a notice when it goes up on the website.
Thank you all for your support, encouragement, help and expressed concern; you cannot know how much it means to me to receive it, along with all your prayers and thoughts. I am so blessed to have such a large and wonderful group of support to help me through this ordeal.
Love and Best Holiday Wishes to All of You,
Marcie and Jim
On the Klamath River
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