Yep, that’s right,
it is time for chemo. First off, I’m fine. Physically and emotionally…I’m fine.
Here’s some
background info about why now is the time:
In March 2012, I
was officially diagnosed with CLL. At
that time, I already knew something was wrong.
My lymph nodes were swollen on the back of my neck and in my groin
area. So, in my opinion, I’ve probably
been “noticing…struggling?” with symptoms for about 5 years.
When I first found
out, I said “hook me up and get rid of it” and they said “wait”. Why?
Because if you can live with the symptoms and not have them
significantly affect your quality of life then you should wait so that treatments
can be improved, you can avoid the side effects of chemo, you don’t have to change
your life schedule, etc. etc.
But, what if your
life schedule is being compromised due to cancer? Well then, let’s take care of it.
I am at the point
where my lymph nodes are getting bigger.
The ones in my neck, groin, and armpits are visible. My left armpit has a node the size of a golf
ball. Try putting your arm down over a
golf ball all the time…it gets annoying. Try sitting down and squishing marbles
in your groin area non-stop and it gets annoying. Plus, they say I’m a bit odd, but they cause
an ache that I can constantly feel. My
nodes are always achy. They also say I’m
odd, because if I were overweight, like really big, then I wouldn’t be able to
feel anything and my compromised lymph system, aches, sweating, lack of energy are
just like what an obese person feels.
So, I’m a fit girl in an obese body I guess. It takes a lot longer for them to catch CLL
and take care of it in an obese person.
Fit people tend to feel and get annoyed by the effects a lot
sooner. Go figure…
To this point, my
lymph system has been doing a good job of collecting the cancerous B cells and
holding them in the nodes all through my body, but they don’t die. They just live and colonize in my nodes. It’s a B cell party that I’m ready to crash.
On top of all of
that…I sweat ALL THE TIME. When I’m
cold, I have sweaty arm pits. When I’m
not being active, I’m sweating. It’s the
weirdest thing, because I never used to sweat.
Even running my fastest marathon, I never dripped sweat. But now, I’m a sweaty fool. So, it is obviously my lymph system. It is like when you are sick and your body is
fighting and you break a fever and sweat.
I am constantly trying to kill the cancer and it causes sweat and
exhaustion. It annoys me soooooooo bad!
I’ve tried to mask
the exhaustion pretty well. Once I get
up and going, I can function. I’m still
aerobically active. I run, bike, or do yoga 6 times a week. The other day I ran
6 miles. But, it was a 12-minute pace
and I was working harder at that pace than I used to work to run a 7-minute
mile. I can get up and go to work and be
productive and high-energy. But, then I
come home, sit on the couch, and hardly move the rest of the evening.
My family has had
to put up with the brunt of it all. And if
any of you ever question…Troy is AMAZING!
He is a husband, dad, seminary teacher, maid, chauffer, gardener, cook,
etc. etc. He has kept me healthy and
functioning for a very long time. But,
in a weird “cancer messes with your head” sort of a way, that ticks me
off. I want to be functioning. I don’t want to be lazy. And, if anything, the cancer breaks my heart
not for me but for my family who has to deal with the side effects. In the past 7 years, Troy has lost both
parents, had a wife diagnosed with cancer, and has had to stand by and watch me
slowly losing energy. If anyone has it
rough, in my humble opinion, it isn’t me…it is him and of course my kids as
well.
So, am I ready to
be back???? HELL YA! In fact, I’m pretty sure I’m going to be a
world-class athlete after chemo. Watch
out racing world! (You all know I’m kidding right!?!) But, I am hoping I can get back to running under a
10-minute mile. That would be awesome.
So, last appointment,
Troy, my doctors, and me decided it is time.
The hope is to go through chemo and get to a “remissive” state meaning
they can’t find any cancer in my labs.
Because my B cells form incorrectly, it will likely continue to happen,
and at some point hopefully in the far far far distant future, they may (likely
will) see signs again, but we hope that is at least a decade…maybe even longer…and
that will give more time for research and hopefully a freaking cure!
I’m choosing to
believe that this has happened in me since birth and it took 34-35 years to see
signs, so I’m shooting for remission and another 34-35 years of no signs of
cancer.
So now, let me
answer the questions I’m sure you all have:
What the regimen?
I’ll be doing FCR,
three drugs (fludarabine, cyclophosphamide, and rituximab). Again, and I know it is weird for some of
you, but I am choosing to just trust my doctors and hope for the best. I am choosing to NOT read up about my cancer,
all the chemo side effects, what my life expectancy is, etc. etc. because if
you get on the internet, it is never what you want to hear and that does me NO
GOOD emotionally and I believe physically too.
I’m am choosing mind over matter.
So, if you read up and find something bad or stressful, please keep it
to yourself. Cancer, IS NOT GOING TO
KILL ME and I am not going to die until I hit 100 so there you go, end of
discussion. The chemo is going to melt
the cancer, maybe make me a bit nauseous, hopefully give me energy instead of
zap it, and get me back to good ole’ Alayna.
How often?
3 consecutive days
being infused, then 28 days off for 6 months.
18 total infusions.
Where?
Huntsman Cancer
Hospital Infusion Center
When?
I go in next
Friday for CT scans and port placement.
Again, the thing I am the least excited about is the stupid port. But they assure me it is better, once placed
will be hardly noticeable, and is the better option than having IVs each
time. The port will be under my skin
most the time (the skin will heal over during the 28 days off) so I can still
shower, exercise, etc. I start three
days of chemo the following Tuesday, Sept. 30 – Oct. 2nd.
What are your
restrictions?
At the moment, only
Vitamin C. I KNOW…what the? Well in petri dishes, cell walls become stronger
when exposed to Vitamin C, so they want my cells nice and weak. So, they are taking away my Zipp Fizz, sniff
sniff. First I give up Diet Coke and now
Zipp Fizz. I’m actually kind of beside
myself about this. The other thing is…if
you are sick AT ALL, stay away please. I
love you but I don’t want to see you and your germs. As we progress, they will let me know if I
have any further restrictions.
I intend to
continue working and doing my thing. They
told me if I feel up to it, I can exercise, etc.
The weird thing
is, for most people, say breast cancer…they feel great, find out, start treatment
and then feel awful. I have
progressively been feeling worse, and the treatments are supposed to start
working right from the first time, so in some patients, aside from some nausea
and upset tummies they actually start feeling more energetic right away and
they see the lymph nodes quickly start to shrink. I have the weirdest dang cancer! But, if you gotta have it, mine’s an OK one
to have!
How sick will you
get?
We don’t
know. A lot of patients do great because
these are very targeted therapies. I’m
hoping I feel pretty good through the whole process. They will give me some anti-nausea meds that
they think will become my best friends.
Will you lose your
hair?
We don’t know again. Some do, some don’t. Honestly, I could care less about my
hair. We Williamson’s know how to rock a
bald head, so if I lose it, I lose it.
Will I feel like a new woman in a few months….HELL YA! Woo hoo!
How are you emotionally?
I’m good. I swear!
I’m ready to feel better. I’ve
prepped myself for a long time for this day, I’m kindof glad (in a weird way)
that now I finally get to fight and teach cancer a lesson.
How’s the family?
They seem to be
great too. They’ve been prepped. They know this is all to get me better and
that I’m not going anywhere. They may
get upset if they see me sick, so be on the lookout and give them a hug, but
other than that, we honestly are doing well.
Do I need anything?
At the moment, nothing
but a few prayers directed our way. That’s
really it, but, I know I have a ton of people who love me and I’m not afraid to
let you know if I need something.
I think that
covers it. I promise I will update the
blog frequently over the next six months to keep y’all posted. Next update will be after next Friday’s CT
and port appt.
ROCK ON!
Alayna
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