My Trip To Huntsman

First let me tell you that I am using this blog as a journal
of my experience. I always like to ask
questions and know details, so I am trying to be very detailed. Sorry for the length and the “wordiness”.
Also, I want to say THANK YOU to everyone. I am aware of many of you who have fasted and
prayed for me. I have been overwhelmed
with kind words, notes, e-mails, and other thoughtful gestures. Friends drove all the way from Riverton just to
drop off a gift and beautiful flowers and I have also had dinner brought to
me. And, I was given an amazingly generous gift by my aunt and uncle Romer. While
this diagnosis has felt very unlucky; I do have to say that I feel like one of
the luckiest and most loved gals in the whole world, so THANK YOU!
Wow! Today I visited
the nicest hospital I’ve ever seen. For
a second, you almost get tricked into thinking it is not such a bad thing that
you are there! I really have to give kudos
to the Huntsman family! The Huntsman
Cancer Institute is truly a gift. What
an amazing work of philanthropy the Huntsman family has done for literally
thousands of people. I wish I had a lot
of spare cash to donate, but I think a lot of people with a little donation can
do the same good! I’m in that
category. However, I would like to think
that if I was a billionaire I would do the same thing. I did find out that Huntsman as well as the
Leukemia and Lymphoma Society are the best places to donate to help find me a
cure.
So, what did I find out?
Well, not a whole lot more or much of anything different than I knew
before. I liked Dr. Martha Glenn and her
team too. I have found that initial
oncology appointments take a VERY LONG time.
They have you fill out about 10-15 pages of medical information. Then, they ask you all of the same questions you
just answered on the forms. Then, you
proceed to give them a detailed account of EVERY medical thing that has ever
happened to you. Yes, I had chicken pox
as a child, yes I’ve been immunized, no I’ve never smoked, etc. etc. They do a full exam (I did get to avoid the
rectal exam, so that was a plus!)
They felt all over for enlarged lymph nodes and found many in
my body that are about the size of a pea.
They get very concerned when they get the size of baseballs and start
intruding on other nerves, organs, etc. in the body, so mine (while enlarged)
are in the whole scheme of things quite small.
You also tell all about your family history and their health. On that note, I have found out from both
doctors that my cancer is not because of anything I ever did or didn’t do. It didn’t happen because of something I ate
or didn’t eat, or because of anything my parents did or didn’t do, and they
also don’t believe it is genetic. It
just is. No reasons; no explanation. Period.
After all of that, Dr. Glenn did order a bunch of blood work
to be done. She actually explained even
more that the stemcells that eventually create B lymphocytes start in the bone
marrow and then travel through my blood.
So, they can actually tell a lot just by doing blood work. She said my actual cancer is CLL or SLL and
the B cell small cell lymphoma is an antiquated description. She ripped on the pathologists that
originally diagnosed it and said they needed to use modern terminology and get
into the 21st century. J SLL is Small Lymphocytic Lymphoma and CLL is
Chronic Lymphocytic Leukemia and they tend to go hand in hand. CLL is
found in lymph nodes and SLL in blood and bone marrow.
All of this sounds very scary, but she did assure me that
this is slow growing and a lot of people live a very long time with it. She has been tracking a lady for 15 years
with it and she is still doing fine with a spleenectomy the only thing she has
had done so far. We think and hope mine
is early like this and I can have the same expectations of longevity.
Because mine is so early she didn’t see the need to put me
through the bone marrow biopsy (they already know it is in there; that’s where it
starts) or do a scan which would subject me to radiation. They try to put all of this off as long as
possible and they can tell a lot just from my blood; which was drawn
today. Hopefully it shows all the “good
news” we are looking for which is that I have cancer, but not a lot yet and
that the cancer cells really are the slow growing ones. If they find something concerning, they will
call me to come in sooner otherwise my next check-up is in 4 weeks.
She also sees no need at this point to do any chemo
therapy. Besides all the other items I
listed on my last post of why to avoid it, patients can also sometimes develop
immunity to chemo after going through it.
So, the longer I can go without it, the better so that it will really work
if I ever need it to.
Dr. Glenn specializes in Lymphoma and also tracks a number
of CLL patients. Also, it is quite
convenient to schedule appointments on days I work, so heading to SLC is no
biggie. I really liked Dr. Stinnett but,
I think I will work primarily with Huntsman and Dr. Glenn. (Too bad they don’t work together!)
Some other things I asked Dr. Glenn:
Are all of my B cells leukemia cells? No, only some. Which is good, I do have healthy B cells as
well. These are the cells that primarily
fight infection. So, I still have a very
good immune system. I obviously want to
stay healthy but I don’t have to be paranoid any time my kiddos get sick or
someone sneezes around me, etc.
Why can some cancers be “cured” and mine can’t? A lot of cancers are tumors that can be cut
out. Then, the radiation and chemo is used
to kill any rogue cells. My cancer is everywhere
and some cells will continually produce the bad way in my stem cells. So, they need to figure out a way to stop
those cells from forming. The things
that they are researching and working on are: Immunotherapy and Small Molecule
Inhibitors. Basically these are either
a) trying to get your own body to recognize and kill the bad cells (this is
what happened in Pennsylvania in my previous post) and b) trying to identify a
way to stop the cells from growing or reproducing, etc. The research is promising but not complete
yet. We have to be patient and pray for
a cure.
How slow does this spread?
Hopefully very slowly. Blood work
should help to determine that. I have
every reason to believe mine is slow and was caught early. My best attack is to eat healthy, stay active
and in great shape and keep a positive attitude. Then if (and I hope I don’t) but if I have to
fight the cancer with surgery or chemo I will be in good shape to do so. It can affect the spleen and liver or lymphnodes
can get too large. This is where surgery
could come into play.
Is she treating anyone else my age with this. Yes, a couple, but mostly people are
older. In fact the median age is
68. I’m one of the lucky
youngsters! Ha ha! This is just my theory, but I’m choosing to
believe it….I think many of the older people who get diagnosed with this had it
at my age and just didn’t know for 30 more years!
A few other things to tell you:
I feel great. I did
not find out I had cancer because it is causing me any pain, discomfort, or any
other side effects for that matter. I
ran 10 miles in a race on Saturday and ran 6 miles this morning. I am healthy.
(I know a lot of you may think I’m not, but I am healthy and in pretty
good shape and am in a great position to fight this for a very long time.)
If you are looking for a great motivator to get into or stay
in shape and eat healthy, get my diagnosis!
I intend to be in the best fighting shape of my life to beat cancer AND
keep doing races too!
Yes, I intend to keep working. There is no need to change anything about my
life at the moment. It is business as
usual. And on that topic, I wish it was “fun
money”, but we do depend on my income, so I am very grateful that I am able to
continue on at this point. That is
another blessing in the “count your blessings” column.
Last, I want to write about the day I found out, but this
post is long and I’m tired so I’m going to put that off for a day or two. I will post about that soon.
Thanks again for all of your love and concern! Keep praying for me…XOXO