It has been so very long since I’ve written and so much has
happened. I’m going to divide this up into multiple sections that have very
little to do with each other except for they are all part of my cancer journey.
To get you up to speed, I originally I wrote about many issues for this blog
post. But, after realizing that it was just too darn much, I decided to break
it apart and provide this info to you throughout the week. Hopefully, in the
future, I will be more on top of things and will keep you all better informed
about what is going on with me. But for today, I’ll start with the most
exciting news…
My Numbers Are
Dropping!
Although I really really really hate this new chemo regimen,
I’ve gotta give it to the docs – they know what they’re doing. My CEA number
(which is found in my blood work) has been a very strong indicator of cancer
growth in my body. The normal person’s number is generally below 5. For years I
would go up and down, but never went over 13 (I remember panicking when it hit
13). Unfortunately for a few years now, my number has been steadily rising. In
fact, it was due to the fact that the number continued to increase (even though
there was no indication of additional cancer growth on my CT scans) that Dr.
Fisher ended up taking me off of my amazing Genentech PDL1 immunotherapy and
back on chemo.
Last November, right before I began my current chemo
protocol, my CEA had reached a high mark of 227. Then, in December, we saw the
number drop to 149 and in January my number dropped again down to 59! Today, I
received .the next piece of incredible news. My CEA that was measured just
yesterday dropped to 28!! This is a dramatic drop and far greater results than
we were expecting.
I feel mixed about what we’re doing. Of course, the number
dropping is great news. However, it means that no one is interested in taking
me off of this regimen and trying something new. I keep trying to convince Dr.
Fisher to let me try another immunotherapy, but so far he seems unwilling to
walk away from what we’re currently doing as long as I can continue to do well
on the protocol. It’s really rough though. 3 different types of chemo over 3
days every two weeks with cold caps and all of the side effects that accompany
the regimen are brutal. It would be easier to handle if I knew that there was
an end in sight. Unfortunately, no one is willing to tell me that I will be
changing anything in near or distant future.
Chemo’s Collateral
Damage – Bladder and Hair
As the chemo continues to shrink the tumors in my bladder
wall, holes continue to be created or have gotten larger. Furthermore, the
bladder fistula has not gotten any better. Because of this, I have to plan
constantly to be able to avoid having an accident. I put my mom in charge of
trying to find out if there are any places in the world that are experimenting
with putting in a man-created bladder (or even some sort of sheep bladder
etc.). Unfortunately, she had trouble finding anything for me. And – even if
there was something, according to my uro-oncologist said that it still would be
very very difficult and fraught with all kinds of risks. The only thing that
they can do to make my situation better would be to remove all of my internal
organs and reroute things so that my urine would flow from a urostomy into yet
another bag. I would be a two bag lady. Ugh. He told me that as long as I can
function with my body parts as they currently are, that he would strongly
recommend that I leave things as is. There are just too many potential dangers
that crop up if I decide to move forward with this extensive surgery.
As for my hair, as you know from many earlier posts, I am a
HUGE fan of trying to save your hair during chemo utilizing the Penguin Cold
Caps. Frank Fronda, the amazing inventor of the cold caps and founder of
Penguin Cold Caps has been generously working with me this time to save my
hair. Unfortunately, as you may recall, I was overdosed with chemo during my
first round back in November. I was extremely ill and haven’t felt that bad for
years and years. I believe that one of the casualties from that first round was
my hair. Both times that I was about to begin taking irinotecan (several years
ago and last November) I was warned that most patients have an issue with hair
thinning. Fortunately, when I did this rough drug several years ago, I saw
almost no hair thinning and, in fact, thought that my hair actually seemed
fuller coming out of the whole thing.
This time I wasn’t so lucky. As I just mentioned, my hair
did not weather the extra chemo dose well. I believe that the heavy dose killed
all of the follicles that were in my scalp at the time and that the hair that
was on my head at that point has been slowly falling out over the past 4
months. Fortunately, because I continue to use Penguin Cold Caps, I have seen
hair growth for new hair coming in. But it’s going to be slow.
How much have I lost? Well – it’s far beyond just some
thinning. I’ve lost at least ¾ of the hair on my head. I can’t believe it. I’ve
never had super super thin hair before. It got to the point where you could see
right through my hair around my neck to whatever was behind me. I looked like a
drug addict. Not a pretty sight.
This past week, I finally came to the point that I couldn’t
look at myself in the mirror anymore. I felt so ugly and looked so ill. My hair
has always been such an important part of who I am. I’ve always had thick, long
hair. Who was this person staring back at me in the mirror?
Many people said that they barely noticed anything at all.
Pat finally looked at me and said “Eve, whoever is telling you that it’s barely
noticeable and that you look pretty much just the same, is lying to you. It is
now time for you to cut off your hair.”
After hearing my despair, my wonderful hairdresser moved
around her entire calendar so that she could see me yesterday to see what she
could do. I told her that we could try to cut it, but my plan was also to go
wig shopping in case we just couldn’t come up with a style that would work for
me.
I am thrilled to say that she figured out a way for me to
delay the inevitable wig for a little while longer. I am now sporting a short
straight bob. I’ve never had short hair before. It’s so strange. But, I’m
relieved. I no longer look like a drug addict – I just look like a woman with short,
thin hair. The girls actually like the cut, but said that it makes me look
short. I can handle this. I just hope that my hair is close to the point where
it stops coming out.
Following my haircut, I did go to the wig salon to see what
my options would be if my hair continues to fall out. And they weren’t too bad.
I could actually see myself in several of the wigs there. They were quite
lovely. My goal will be to try to maneuver quickly to a wig that looks like my
real hair if I continue to see significant hair loss.
Pat and I are continuing to use the Penguin Cold Caps with
the hope that it will help the hair that I have now both stay in and grow! (I actually wore them for 6 hours today – it’s
so very cold.) I am also using a new shampoo/conditioner called FAST which is
supposed to stimulate quick hair growth.
Fingers crossed that the hair loss is only a short lived
experience and that I will soon begin to look like me once again.
Surgery 20 something
Last Wednesday, I had surgery number 26 or 27 (I’ve lost
count). Fortunately, the surgery wasn’t a difficult one. We just had to change
the stent in my left ureter. Apparently, there was some calcification on the
stent that made it difficult to remove. Other than that, the surgery went very
smoothly. In fact, I was out skiing last Friday, just 2 days following surgery!
My surgeon, Dr. Chung, just asked if I would plan to come in
every 3 month rather than wait 5 months to change it out. That’s easy enough.
Of course, I am a little concerned about how often I’ve used anesthesia. Isn’t
it bad to do it too often????
Back to Chemo
We’re back to chemo week. Last night, Pat picked up the dry
ice and then first thing this morning we were off to UC Davis to begin my week
of chemo fun. Today I was given Irinotecan and we used Penguin Cold Caps for 6
hours. As I left UC Davis, they hooked me up to my pump full of 5FU and then
after 2 days I’ll return on Thursday for some Vectibix fun.
Stay tuned and check back in! More fun information coming this week!
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