Well, here is journal six of an odyssey that started almost a year ago when my
symptoms really kicked in, and more than six months since my diagnosis.. The
sixth, but not the last.
As I mentioned in my last journal, I had a PET (Positron Emission
Tomography) scan last week. This test was to make some decisions about
further efforts against the cancer.. Two CAT scans had shown sites still existing
which had not decreased in size. The best case scenario expected was to continue my
chemo for another two months, and then to evaluate whether radiation and/or a bone
marrow transplant would be needed afterward.
Many of you have commented about how these journals help you understand what this
experience is like. So, for those of you who would like to have empathy with going through
a PET scan, I propose the following audience participation exercise... First, find a spot to
lay down that a medical equipment manufacturer would consider "comfortable." The two
that come to mind would be lying down on your concrete driveway, or using a New Delhi
nail board. Anything more comfortable would be considered extravagant by the medical
equipment designers... Now, put your arms straight up so that your biceps are against your
ears, then fold your arms down on top of your head. Hold this pose. For 50 minutes... And
don't move a muscle in your body, or you will mess up the picture and that 50 minutes won't
count. Now, you can stand up. For five minutes. Then you get to do it again for 50
minutes. Then a five minute break, than another 50 minutes. Feel the burn???? By now
most peoples arms are stuck up there permanently... This has a benefit, though. When you
are shopping, and you have to get something off the shelves, your head is now close enough
to the lowest shelf that you can read the labels....
As I said earlier, going into this last test, the best case scenario was that we would try
another two months of chemo, and then evaluate if radiation was needed after that. After
the previous CAT scans had shown no shrinkage, not much more was expected, and worse
was possible. But I was hoping for the best of the worst. Thanks to prayers gone out all
over the world for me, and to the amazement of my oncologists, suddenly all of my cancer
disappeared. From many sites that wouldn't go away to nothing - with no other explanation
than God deciding that I had more to do here... I never thought other than He would keep
me here. He took me through two other times I should have been killed. Yet, the
suddenness of it astounded me. I am still in shock over it. There were many tears among
my family as the news spread. The only one who doesn't know now is my son, who arrived
in Afghanistan a week ago with his Marine Reserve unit.
I have a LOT of visits to the hospital over the next six weeks. Then scans every three
months for a couple of years because Hodgkins has a high rate of recurrence, however, it is
easier to handle when caught early. Still don't know if the diabetes will go away now or will
be something that I have to deal with for the rest of my life.
But there is no doubt about the miracle.
Only one oncologist, the most senior, believed. She told the others not to worry, that it was
going to come back clean. She told them that she didn't believe the CAT scans, she
believed what she saw and felt. And my color was good. My attitude was good. There was
spring in my step again. Everything she could feel before was now gone. She believed.
How neat.
I think my journals will continue - ("Cancer Plus x Days"), because the experience doesn't
stop once the cancer is gone. Actually, the next weeks are stepped up activity as I go
through more "baseline" PET and CAT scans, diabetes classes, classes on how to check
for lumps, eye screenings, on and on.
For all of you out there praying for me, you are part of the miracle, and I thank you from
the bottom of my heart. Now to move on to the rest of my life, and an identity that doesn't
include cancer. What a wonderful concept. Keep on praying for those in need, and me.
Prayer works. Welcome to the fifth journal in the series of the Mighty Cancer
Fighter!!
As I have learned, the fight against cancer is a series of hills and valleys, and I
have managed to cross through several valleys since the last journal. This is
inevitable due to the impact of putting poisons in your system at regular
intervals, but what really matters is handling and getting through them. It is
these valleys that have caused this latest entry to be so late. I know there has
been a greater time lapse between this journal and the others, and I extend my
thanks to all of you who have noticed and asked about it. It tells me that you car and enjoy
receiving them. I am heartened by hearing that they have been being received in the spirit
that I have sent them.
So, here are the main things that have happened since we last "spoke."
CAT SCAN - A CAT scan was taken to measure the progress of the chemo against the
cancer. We expected to find few, if any, cancers large enough to be detected, but instead
there were quite a number of "dime sized" cancers present. Another CAT scan taken a
month later, after two more chemo sessions, showed no further progress in shrinking those
cancers that were left. We are doing some additional tests now to show exactly where we
are in the battle, and will put together a new plan of attack to finish the little buggers off.
Actually, the only thing that bothered me is that stupid Money Scale - you know, dime
sized, nickel sized, quarter sized. I think that is just too darn descriptive. We need a scale
that allows the patient to walk away feeling good, so I am going to make a formal proposal
for a new scale - "The Politicians Brain" scale. With this new scale, every cancer would be
described as "Billions and Billions of Politicians Brains." That way, the oncologist can
think she is saying it is slightly larger than a small boar, but the patient can walk away
happy, thinking it is the size of the head of a pin. Helps the psyches all around, don't you
think?
Actually, it seems that the problem may be that parts of me are TOO healthy, in that my
liver may be cleaning out the chemicals so fast that they aren't having enough time to work
on the cancer. Hmmm, "Do you want the good news first, or the bad news?"
BLOOD SUGAR - One of the side effects that come with the extensive steroid intake turns
out to be steroid-induced diabetes. No one had mentioned THAT one before! I wouldn't say
that my glucose count of 326 was high, but if you put a string in me and cooled me down you
would be able to make rock candy. We are working on this problem now, especially since
the high blood glucose count prevents a test that provides critical information about how we
are to continue. I am sticking holes in my fingers every morning to test levels, avoiding
sugars and carbohydrates, doing almost everything I have to do short of eating tofu
(otherwise known as "I Can't Believe It's Not Food!"). It is still a battle, especially when I
am on the steroids, but the hospital and nutritionist are working with me on it. With LUCK,
it will go away once chemo and the steroid treatment are done. Here I was complaining
about how I was being stuck with needles every time I turned around, and now I have to
stick myself every day to measure my blood sugar. (Just need a few more holes to become
a sprinkler...) In terms of controlling the diabetes, I have my glucose meter, a dietician
working with me, will be going to diabetic classes, and as of now I have the number down to
the 140-160 range, aiming for the normal range of 90-120. Since cancers feed on blood
sugar, my high levels probably were working against us, I needed a positive result in order
to better fight the cancer...
INFECTIONS - ANOTHER side effect of chemotherapy is the appearance of infections in
my mouth - primarily in my teeth and jaw. The chemo suppresses your immune system so
much that it is ripe for infections to develop unchecked. For a period of about three weeks,
if I wasn't taking a Percoset, I was counting the minutes until I could take another one. The
abscesses were bad enough but the visit to an oral surgeon, The Honorable Dr. Markey
Desade, was worse. I knew I was in trouble when I went into the treatment room and saw
the whip and chain decorations on the walls. He had a good time cutting up my gums in six
places and cutting and filing on my jaw bone for an hour or so. Though I DO think that using
nautical rope for stitches was a bit much... There were about three weeks of unrelenting
pain, visits to the emergency room, dentists, and surgeons. Finally, though, all that seems to
be over, and I enjoy being pain free in a way I never have before.
After all the setbacks, we are now focused on moving ahead. A Positron Emission
Tomography (PET) test scheduled for the first of October will tell us where exactly we are
in the fight, and give us a better idea of where to go next. This test had been planned earlier
and had to be cancelled because of my high blood sugar.
In terms of where we go from here, another two months of chemo is probable, as is
radiation afterward. A change in the chemicals is also a remote possibility. At this stage,
there are multiple options remaining, and that is heartening.
On the positive side, we have made major inroads in the battle, with far less cancer
remaining than I started with. While I have had some downtime these last two months,
overall the process has been easier to handle than I expected. There has been no nausea
and few of the other potential side effects. I have been in good spirits. And I remain
confident that success is just a function of time, the expertise of the people fighting this with
me, and the prayers of all of you.
More to come!!!
Journal Six – “Thanks for being part of the miracle”
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