February 7, 2006

Psalm 57:1.  Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.

 I have to begin this with a heart full of love, thanks, and praise.  All of these to our Mighty Lord, He who is Lord of all, and to all of you, for all your wonderful messages, and for your prayers.  They are already working, and while my cancer is still there, this last week has been crammed with telephone calls, doctor visits, tests, procedures and the beginning of treatment. 

Sandwiched between this was a visit from some of my kids and grandkids over the weekend, which was a wonderful boost to my spirits, and theirs also. 

Yesterday (Monday), however, was a day in which we accomplished a great deal, and it came in three parts.   

We had a very busy day ahead of us in Medford, and had to leave here at 8 am to get started with it.  My first appointment was to have a thoracentisis, to drain fluid off my lung.  Boy, was that an eye-opener.  It was done in much the same way my needle biopsy several years ago was done.  They did a sonogram to locate the fluid, which is not IN the lung, but outside it, in the diaphragm, surrounding the lung, and it was compressing my lung, limiting my ability to breathe fully.  I really was not aware of all it was doing, as it came on gradually, but has clearly been increasing uncomfortably for the past month or so. 

It has been difficult to do anything but sit and try to breathe for the past week, and I was exhausted by the time I could get into the truck and head for Medford.  I went into the hospital in a wheelchair, unable to walk even a short distance, and using oxygen.   

For this procedure they numbed the right side of my back, inserted a large needle about halfway down the right shoulder blade, and just to the left of the blade edge into the diaphragm surrounding the lung, then pulled it out and inserted a catheter, about ¼ inch in diameter, and drained the fluid through that into a bottle.  It is now at the lab, to determine whether the fluid is being caused by the tumor growing rapidly.  Evidently, somehow, stray cancer cells get outside the lung and can cause this.  We need to research that today on the Internet.  They took out a liter of fluid! 

Well!  I didn’t know what to expect, but people had said I’d feel a lot better.  After the procedure, the doctor explained that it would take several days for my lung to expand back to full size, and I would have some uncomfortable feelings as it did so, but would feel the full benefits within a few days.  What I was unprepared for was what a wonderful feeling it gave me immediately!  I could breathe so much more fully, and easily, that I have not really used the oxygen since I had the treatment.  Within an hour I was no longer hobbling along holding onto things, but was able to stride fully, in my normal walk.  Something I realized I had not been able to do in a while. 

I could talk!!!  In fact, I not only chattered all day long (after having only 4 hours sleep the night before), I chattered for two hours straight all the way home last night, trying (and succeeding) in keeping Jim wide awake.  He had a very difficult day yesterday.  He pinched a nerve in his back several days ago, and it was on the mend until day before yesterday in the afternoon, when it grew worse again, and he forgot to take medication with him yesterday, so was without it all day.  It was not a fun day for him at all, but it is improving again today. 

So – first appointment was a big success, but we had two hours until we met with the doctor, so we went out for a great lunch/dinner at the Olive Garden.  We’d not eaten at one before, but noticed they were always crowded in Medford, so figured it must be good.  And the restaurant looked very clean, which is big with me right now, and I’ll be avoiding it completely (eating out) for awhile. 

I had a list of questions to ask the doctor, all prepared, to find out more about this new chemo he wanted me to begin yesterday, about the results of the CT Scan, tumors, and my health in general. 

Dr. Ahmann was very pleased with the result of the Thoracentisis, and said he thinks it is from the tumor, but we’ll have results that will tell.  If it is from the tumor, I may have to have this done again, as it can come back, so I need to watch for the signs. 

One of my questions was: If this tumor is related to what I had before, why did it grow so fast, when that tumor grew so slowly?  His answer was that cancer cells mutate.  If my former treatment killed all but one cancer cell, and that active cell had mutated to a fast-growing one that could cause this tumor to be fast growing. 

The second question was: How many other tumors were visible now on the CT Scan?  There are some lymph nodes in the mediastienum (between the two lungs, near the heart), and another in one of the lungs (didn’t ask for any more detail, we had a lot to cover). 

He had had me start on a new medication on Sunday, and I needed to take it three days in a row, beginning the day before treatments, and I asked him about that.  He said it is a steroid – I asked if it was like Prednisone, because they gave me that with all my other chemo treatments.  He was kind of vague in his answer, saying only “not really – it does not have all the side effects of Prednisone.”  However, he did say it kept you from sleeping, and gives you energy, which Prednisone also does.  He said it was to help prevent a rash some people get with this chemo.  That rang a bell, but another pressing question was to ask for more info about this chemo. 

Here again he was vague, saying that most people don’t have much trouble with side effects, and that was really about all he said about it. 

He gave me a schedule of treatments, and the next was not scheduled for three weeks.  I asked about that, since usually if treatments are far apart it is because it is strong, creating havoc somewhere in your body, but he just repeated that there were not usually many problems with this. 

This seemed confusing to me, based on chemo I had before.  He is not as forthcoming with information as Dr. Boone was, but time was fleeting.  We sat in the outer office a full hour past appt. time, then another 45 minutes in the examining room before he got there.  I had a chemo treatment scheduled after this, so we were limited as to time. 

I asked him about exercise – I can start my treadmill again, taking it very slow and holding on so I don’t fall, I can use the oxygen while I use it, if necessary. 

So!  On we went back out to wait for the infusing room, where they give chemo treatments.  After taking us into the infusing room we had to wait again, as there was only one nurse on duty, and she apologized, saying they usually have volunteers, but none were there right then to help, and she kept getting called away for something else. Eventually another nurse showed up, but it was an hour and a half more before she got fluid going into my arm, and that took half an hour until she could start the chemo. 

Dr. Ahmann had said this was very quick, and when I asked if you get all the other stuff you get with other chemos, he said you didn’t, but they did give me a shot of Compazine to prevent nausea, and she asked if I had some at home, which I do, as she said I’d probably need it. 

Then things got very interesting, and to explain this correctly, I have to back up to when I got the first call from Dr. Ahmann, and before. 

Actually, when Dr. Boone in Bend explained that there were only two chemo options still open to me, he was vague about them, and I got the impression that they must be “bottom of the bag, not very effective” type things because he was vague.  You see, I have a very active imagination, and I am a huge worry-wart, so my assumption always jumps to the worst scenario, if I am not told the facts.  Periodically I would remind Dr. Boone of this and stress that it was really necessary to tell me the truth, and as much of it as he could, because it was my life, and if I was expected to make the decisions for my health, I needed to know as much as possible.  I can see that this is going to be doubly important with Dr. Ahmann. 

I’ll explain more after I tell you what happened next, yesterday. 

While I was waiting, the nurse brought me a book, saying it was for me, and contained a lot of information about this medication.  So, I began reading it, and read it cover to cover.  And the more I read, the more this chemo sounded exactly like the Iressa I was unable to take more than a year ago, except for a few differences. 

That was the bell that rang when I was talking to Dr. Ahmann – the reason I had to quit taking Iressa was because the rash I had was so severe it could have killed me. 

The answer I got when I told the nurse this sounded very much like Iressa was that “…well, it is the intravenous version, or alternative, or (some similar word) to Iressa.” 

There are some differences. 

1. Since this is intravenous, and it will be paid for by Medicare, which covers intravenous chemo, but not drugs in pill form (which cost about $1800 a month when I took it, and I had to qualify to get the manufacturer to pay for it, before I could get it).
2. The dosage on this can be adjusted up or down, and that was a big problem with the tablet.  It was not supposed to be – either you could tolerate it, or you could not.  It had some serious side effects, and if you were not getting them, it was not working.  The Tarceva I took subsequent to that could be adjusted, but I didn’t get that far.  The goal was to start low, and increase to see if you could tolerate enough of it for it to work.
3. These medications do not help everyone.  BUT – I read some miraculous testimonies from people on various websites (not the manufacturer), who attested to complete cures of their lung cancer, in very quick time, but they had to continue the medication.  I recall one who was very terminal, and whose lung cancer disappeared in two weeks!

I personally think that because Iressa made me so ill previously, the doctors were hesitant to tell me what this really was, previous to giving it a chance, because they thought I would not take it.  And, I can see their point.  At this point in time I have no pain from the tumor, although I do have symptoms (the blood I cough up, the fluid on my lung, etc), and now I have a looming tumor suddenly on my lung. 

I know that taking this is probably going to make me sick.  I have to let it make me as sick as I can take, in order to give it the power to be strong enough to kill the cancer.  But, this is MY LIFE.  I don’t have a lot of options to choose from, and I still want to live.  Perhaps this is the Lord’s way of giving me that chance.  As I have said previously, probably several times, I will choose life as I can see it, over the alternative, if I can. 

Any choice to take chemo is the choice to make yourself sick.  However, I have to say that most of the chemo I took, with all the mitigations they have available now, and that are given to you with it, were not bad – not nearly as bad as I expected.   

And, I am more knowledgeable now about ways in which I can further mitigate the damage they do, and the side effects they have, from my previous experiences. 

The side effects most experienced are: Fatigue (9 out of 10 patients), fever (1 in 4 patients), loss of appetite (more than 50%), nausea/vomiting (1 of 3), Constipation (1 in 5), Diarrhea (1 in 5), mouth, throat or lip sores (1 in 5), and the rash (1 in 5 patients).  When I took the tablet, there was nothing that helped with the rash.  Now, this steroid appears to be helping a lot with it, because the incidence of rash was much greater.  And, according to the doctor, if I increase my albumen a lot, that will help fight it.  You do that with eggs. 

So, those are the most frequent (20% or more patients experiencing them) side effects.  I had all but fever and mouth problems with Iressa, but the rash and diarrhea were the worst. 

This new medication is called Alimta (generic name pemetrexed) and Alimta is manufactured by Lilly.  In this book it just says that it is used “to treat certain kinds of cancer” and doesn’t provide more information.  It works by interfering with a crucial process that allows cancer cells to reproduce and spread.  Specifically, it works by stopping the production of three enzymes required to feed the cancer cell.  

Far from scaring me off, I am looking forward to this medication with great anticipation and the hope that I can tolerate it in enough strength that it will not only get rid of this tumor, but perhaps all of them!  That is a possibility now – and this news has given us a much better outlook than what we had when we did not know what it really was that I would be taking, and had the assumption that it would not be very effective. 

And, there is a chance that I will not be able to take it, but if a positive attitude will help, then that is certainly in place, and that is where our Lord comes in, with what He has planned for me.  So, now more than ever, we hope that you will all keep up your prayers for us.  They are sustaining us, uplifting us, and helping us greatly to get through this trying time. 

Thanks to all of you, and I hope you will also praise the Lord for the blessings he has bestowed upon us.  You are all making a real difference. 

Marcie