All is well!

All is good! We are
staying busy, busy. I think that is a
good thing because when I first found out about my cancer, I felt like I had
OCD. All I could think about was my
cancer. Non-stop! I couldn’t even sleep. In fact, night time was the absolute
worst! However, there have been times in
the past week where I have actually gotten busy and “forgotten” for a few
minutes. When I think of it again, I
realize how nice it was to have a quick break!
I am hoping with time, this will happen more and more!
I did speak with Huntsman.
I had a little scare last week because the lymph node above my incision
and behind my right ear got swollen and really tender. I was freaked out because I thought it was
possibly the cancer growing freakishly fast.
However, after a trip to Huntsman and a few e-mails they calmed me down
and said that because the original node had been removed, its closest buddy was
working harder and reacting. Since then,
the node has gone down and is no longer hurting, so things are good. They also told me that my blood work showed
exactly what they were looking for and nothing unexpected. It gives them a baseline to watch my numbers
and hopefully see that they are NOT increasing.
J
The doctors have told me not to change my lifestyle at
all. However, I think the hardest thing
for me has been not doing anything. I feel
like I should be doing something to fight this.
Sorry, but I feel anxiety about it, like I should be fighting like
Hell!!
So, I have been eating even healthier than I was
before. I used to justify sweets all the
time because I exercise so much.
However, I have now cut out a lot of natural sugar from my diet. I am also avoiding artificial sugars completely. For the most part, I try to eat only whole
grains, lots of fruit and vegetables, small amounts of meat, and very few
sweets at all. It is taking some getting
used to, but I haven’t had soda since being diagnosed and have only eaten a
handful of sweets.
I couldn’t resist some cheesecake from Cheesecake Factory
and some cookies at a family gathering.
Also, some of Troy’s students made me some sugar cookies (my weakness)
so I ate one of those! I bought some
dark chocolate covered blueberries and pomegranates, so when I’m really weak, I
eat some of those.
Anyway, compared to the old sweet tooth Alayna, that is a
major accomplishment! I have also been
exercising a lot. I am registered for
the Boise Ironman 70.3 (half the full Ironman distance; 70.3 miles) this June,
so I need to get ready for that.
So, for my F’s I promised, the first is “fitness”. Just to prove that I am healthy, I run 6.5
miles every Tuesday and Thursday morning at 5:30 with some great neighbor
ladies! After I run, I do 25 minutes of
Yoga and then a lot of those days I also ride my bike. (It is set up on a trainer inside my
house). On Mondays and Wednesdays I ride
the bike for 1.5 to 2 hours. On
Saturdays I go for a long run which is usually 12 to 15 miles if I’m not
training for a marathon. It can be up to
20 miles if I am in marathon mode.
I don’t tell you this to brag, just to prove that if
exercise is important, you can find the time and the way. It has never been more important to me, so I
am going to keep it up. I have found for
me if I am always signed up for a race, then it keeps me motivated to
train. That may be a great tip for
you. I have seen every body type and
personality at races. Everyone is
welcome! Don’t feel intimidated or think
you can’t sign up until you are “in shape”, just sign up and then train!!
I also felt like I
would share this little “fabulous” idea that I had. If I do say so myself, it is quite
ingenious! I didn’t feel like I could justify
riding my bike for hours and not do anything else. I need to be productive, so I figured out a
way to multi-task. I bought a hospital
table that wheels under my bike so I can type on my laptop and ride at the same
time. (See cheesy pictures abouve). I work on class prep, grading,
e-mails, etc. while I ride. (Yes, I am
typing this post and riding!) I know it is a bit geeky, and that the biking purists
out there will tell me that my form is being compromised, but I am getting
things done!

The last “F” of the day has to do with “Finance”. In my classes I have always talked about how important
it is to have life insurance when you have people (spouse, children) depending
on you! That goes for the stay-at-home,
non-income earning spouse as equally as it goes for the wage earner! So, now with my own diagnosis, I have
pondered and re-evaluated everything in my life. I DO NOT intend to die until the age of at
least 100, but I have thought about my own life insurance. I am pretty well insured and honestly bought
as much as I could afford. Now, of
course, I wish I had triple the coverage, but I do know that if anything
happened to Troy or I, financially we would be OK. The crazy thing is (and I have taught this)
at this point if I tried to buy insurance, I’m pretty sure I would be
uninsurable! You have to worry about the
insurance before you have reason to! So,
if any of you are out there reading this, and are not insured, now is the time
to look into it. Get as much as you can
afford, then if the worst happens, your family won’t have to suffer financially
as well.
Alright, so now what? Well, I just keep exercising, eating
healthy, living my crazy life, and I go back to Huntsman on April 10th
for a checkup. We felt like the family
needed some fun, so we are heading off to Disneyland and American Idol for
spring break! We are also going to stop
in St. George for a visit and a road bike ride.
I’m EXCITED!!!
I’m pretty sure that only family and friends read this blog,
but if any bad people are reading, I do have an alarm, a dog, and a dog
sitter. So, don’t even think about
trying to break into my house! I’ll blog
when we get back! Thanks for the
prayers! Keep ‘em coming and pray me healthy!

Hard Days - Tender Mercies

I love good quotes and I’ll probably post quite a few on my
blog. But, there are two that I keep
thinking of this week. The first is by
Mother Teresa. She said:
“I know God won’t give me anything I can’t handle. I just wish he didn’t trust me so much.”
I have to agree with her! I know I can do this. I know I can handle it, I just wish I didn’t
have to! I am trying to approach this
with a positive attitude. Having said
that, I have also thought about another quote by one of my very favorite people
ever: Gordon B. Hinckley. He said:
“In my ninety plus years, I have learned a secret. I have learned that when good men and women
face challenges with optimism, things will work out! Truly, things always work out! Despite how difficult circumstances may look
at the moment, those who have faith and move forward with a happy spirit will
find that things always work out.”
I think that a lot of my staying healthy and beating cancer
will have to do with my attitude. I feel
like I’ve done OK so far. I’m hoping to
continue to do even better! I had a
really hard time the first day I found out.
I told you I would tell you about that.
First, I was referred to go to an ENT for the enlarged lymph
node. I just went to the first available
ENT near me. I am not going to name him,
because I’m sure he is a nice guy, but I was not happy with him at all. On my first visit, I waited in the waiting
room for 45 minutes before being called back and then waited in the exam room
for another 20 minutes for the doctor. (I
HATE WAITING! Can you imagine if I made clients, students, etc. wait like that?) I guess part of my challenge is learning to
be more patient, because I’m going to have to be patient with this cancer for a
long time!
When I finally saw the doctor, he felt my swollen nodes and
told me that he didn’t think there was anything to worry about. In fact, he said that he didn’t feel the need
to biopsy it. He said there was a 90%
chance it was nothing, a 9% chance there was an infection or a disorder where
nodes are just bigger which is still nothing to worry about, and a 1% chance it
was cancer. I asked him if I was his
wife or daughter what he would do and he said he would check it regularly for
any signs of change. Since I don’t live
with a doctor, I am the one who actually decided to have it removed. I told him to schedule the surgery. He said it was no rush, so it was about two
weeks later. Also, he told me I had to
come back before the surgery for a pre-op appointment. They said it would only take 20 minutes to
sign some papers and check my heart, temp, etc.
So I scheduled that and when I went to that appointment, I waited again
for an hour before being called back! I
said something to the nurse and she immediately got bugged. In retrospect, you probably shouldn’t complain
before someone is going to cut you open, but I wasn’t that smart at the
time! So, he finally came in, listened
to my heart and again told me there was nothing to worry about. I had the node removed and then never heard
anything back. In fact, I called about 5
days later and talked to the ornery nurse.
She told me that they didn’t call with results and that the doctor would
just give me the results at my post-op appointment. (#1, that’s lame, #2 when results are bad, no
one should wait 10 days to get them! #3 they should have a loved one with them)
When I went to the post-op 10 days later, I assumed nothing was wrong because
surely if there was bad news, he would have called. So, I proceeded to wait again for OVER an
hour before being called back. When he
came in, he asked how the incision was, looked at it for a second, and then
handed me a pink paper and said here are your results. HE DIDN’T EVEN TELL ME…he had me read a paper
that said that I had cancer! I looked at
him and asked if it was for real. He
said “yes” and then I remember saying so I’m the 1%? He said yes and that he was very surprised by
the results. At that point, it seemed
like the room started spinning. Then, I
got mad! I can’t believe I did it still,
but I told him that I was mad it took so long to get the results, that it was
highly unprofessional and I complained that I had wasted more than 3 hours of
my life in his waiting room! Then I
asked what next and he told me that they had already scheduled an appointment
for me with Dr. Stinnett for March 19th!!! NEARLY TWO WEEKS LATER! I freaked out again and said that was unacceptable
and that I should have been notified a week ago and met with an oncologist
already. He then sent his nurse to try
to re-schedule and kept talking to me, but I honestly don’t really remember
what he said except make sure I like my doctor and have a good attitude. Ha Ha.
I did not have a good attitude right then! I was mad that I didn’t have Troy with me and
that Sloane was in the room with me while I was finding all of this out! The nurse came back and had rescheduled for
two days later. I told them that two
days later was a little better, that I was going to beat cancer, but that time
was of the essence and they should NEVER do that to another patient, and then I
left the office. (Once I got home I
called Huntsman and tried to get in with them even sooner, like I discussed in
my previous entries.)
I got to the car and called Troy. I was frantic. It was 1 in the afternoon, Sloane was hungry
and crying, I was crying. It was
horrible. Troy told me to go get some
lunch. It is funny because while my life
had just completely changed, the world kept spinning and everyone else kept
living. I had my list of things to do
and a carpool to pick up that day. Right
then and there I decided that I had to just keep on living!
On my list of things to do that day, I needed to go to the
office supply store and Target. So, I
drove there, wandered around both stores aimlessly without really getting
anything and then went to Noodles and Co.
I ordered the food, then went into the bathroom and had an absolute
meltdown. I then fed Sloane lunch with
my sunglasses on.
Troy had texted my friend Maria and told her to call
me. I think he did that because he felt
so helpless! I still can’t believe he
wasn’t with me. He would have driven
straight home except he had carpooled and couldn’t ditch the other
teacher. So, I sobbed to Maria. I still didn’t know what to do. Should I tell people? What about my kids? Then, I realized that I didn’t want my kids
or family to find out from anyone besides me, so I started calling my
family. Troy and I sat down with the
kids, which was really hard to do. Then,
I laid down on the couch. I had cried so
much I had a horrible headache.
Troy then called our neighbor, Chad, to come over and help
him give me a blessing. I am so grateful
for a great husband and awesome neighbors who are worthy and able to give me a
Priesthood blessing. That was very
helpful to me and helped me to calm down and finally feel that everything was
going to be OK.
I actually did really good with the attitude up until a
couple of days ago. Then, I think it all
hit. I had been trying to be so strong
and all of the sudden I just couldn’t. I
got really mad at my lot in life! I got annoyed
at people who talked about what I thought were insignificant struggles. I was jealous of people who I viewed as not
having struggles, etc. etc. It was a
really bad day and I felt like a bad person.
But as bad as I was, God was still watching out for me and loving
me. First, I got a text from a dear
friend who watched her fiancé die of cancer.
She had no idea I was struggling that day, but she sent me a text that
said it was OK to have a bad day. You have no idea how much that helped
me! Then, I received a lovely letter from my
grandparents that talked about being a fighter and how my grandpa had done that
back in WWII. It was an amazing letter
that I will always cherish. Third, I
went for a walk and was praying to feel better.
Right then, my earthly father who was driving in his car found me and
got out and just let me vent and cry and talked to me and that also
helped. I think that was a special
tender mercy of Heavenly Father. He let
me know, via others, three times that I was not forgotten and that what I was
feeling was natural and OK, but also it was time to snap out of it.
Since then, I’ve done better. I’m sure I will have hard days ahead, but
those things that happened were a testament to me that Heavenly Father does
know me and love me, he understands, and is with me right now. I am grateful for that!
I do also have to say that the ENT slightly redeemed himself
the other day because he did call to check on me. I appreciated that!
I also appreciated my Uncle Bill sending me an e-mail with a
link to an article in the New York Times that talks about the experimental
treatment in Pennsylvania that I discussed in my previous post. The article to me is absolutely amazing. I am so grateful for wonderful doctors and
scientists that are working to find a cure for all kinds of cancer including
mine! If you are interested in reading
it, here is the link:
http://www.nytimes.com/2011/09/13/health/13gene.html?_r=1&src=ISMR_AP_LO_MST_FB&P
Once again, this is a long post. I actually have some “F’s” related to my
diagnosis to talk about. So, my next
post will talk about some of those.
Please continue to pray for my family and me! I so very much appreciate it! XOXO

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

Yep, I have cancer

March 10, 2012

Alayna’s Cancer Update

Yes, you read that right.
I have cancer. I have many things
to say about that, so this post is going to be long. Thanks for reading it! I have talked so much the past few days that
I decided posting information on a blog to keep everybody updated would be
better for my sanity AND productivity! I
want you to know that I SO APPRECIATE everyone’s love and concern. I don’t want you to think that I don’t want
to talk. I want you to hear and know
everything first hand and to always feel comfortable talking to me about this.
However, I have realized how huge my support system is and how loved I am! I am so grateful to you all!! There are so many of you that I figure this
is a better way to keep you all in the loop.
FIRST, I am happy, very positive, and calm. So is Troy.
This is not a death sentence and I will be just fine. I don’t know all that is ahead, but I know
that Heavenly Father knows me, loves me, and wants me to be on earth for a lot
longer! And I intend to be. In fact, aside from a mutant gene that you
will soon read about, I have great genes and am fully intending to take after
my grandparents who are alive and kicking at age 90. My goal is to be on the “Today Show” when I
hit 100 years old with the “Smuckers Jam Label” around my mug shot! (If you don’t know what I’m talking about, you’ve
got to watch the “Today Show”! The
centenarians are my favorite segment!)
OK, my blog name may seem weird. Actually, I’ve been keeping notes of a blog
that I wanted to start that was to be titled “5 letter F’s”. I never started it though because I didn’t
want to sound indulgent OR be made fun of.
Basically my fear kept me from starting it. However, learning you have cancer changes
everything in a nanosecond. One thing I’ve
realized is I’m going to do whatever is going to make me and my family happy
and (hopefully) help and inspire others along the way. So, I hope my blog does this.
I first started toying with a blog because I have had
students ask if I had a Finance blog (F #1).
I didn’t want to just blog on Finance so I started thinking about what
else I was going to write about and they are basically the things that define
me. They are:
Finance
(having) Fun
Fitness
Food
(anything else that is) Fabulous
And now I have added the 6th F which is…..FIGHT
because I am going to FIGHT cancer with every fiber of my being and I will
obviously be posting about that.
So, the rest of this blog entry and probably the next few
will be about that primarily. I hope I
answer everything. I’ll tell you
everything I know to this point.
First off, how did I find out? Well about 1.5 to 2 years ago I noticed some
lumps in the back of my neck. Because I’m
a high strung, Type A person, I thought it was because I was uptight and
stressed. So, I started going to a massage
therapist. She would rub my back,
shoulders, and neck and I would feel great.
She kept telling me I needed to go more often but for financial reasons
I didn’t so I figured the knots never fully went away because I wasn’t going
often enough.
Then, last summer I felt bumps in my pelvis. I went to my family doc and he wasn’t too
worried because they were swollen lymph nodes and I probably had an
infection. So, I went on an antibiotic
(which did not do the trick, but I didn’t go back because I’m busy)!
Also, last summer, I got in a car crash and got
whiplash. So, I started going to
physical therapy and massage more often.
The PT noticed the bumps in my neck and thought they were weird. Then, in October I had two cycts (not
cancerous or related to this – just weird) taken out of my face. When I went to physical therapy all stitched and
bruised, the PT thought my neck bumps must also be cysts. So I went back to the facial plastic
surgeon. He told me they weren’t cysts,
but swollen lymph nodes and I went back to my family doc. He then did a CAT scan, bloodwork, and sent
me to an ENT for a node biopsy. This biopsy
was done on Feb. 27th. I got
the results on Wednesday, March 7th.
The blood work came back in a normal range except for
slightly high white blood count. The CT
showed enlarged (but not crazy big) lymph nodes. The biopsy, however, came back with a
diagnosis of B cell small cell lymphoma.
This, I have since learned, is also known as Chronic Lymphocytic
Leukemia or CLL. A great place to read
about this is http://www.lls.org/#/diseaseinformation/leukemia/chroniclymphocyticleukemia/
Immediately upon learning this on Wednesday (yes, I was
freaking out and an emotional wreck), I got an appointment with an oncologist,
Dr. Jason Stinnett in Layton. I met with
him yesterday. I also called Huntsman
Cancer Institute and got an appointment with them for next Tuesday. While on the phone with Huntsman I asked the
secretary if she could get me in any sooner.
She said no, but she would get me scheduled for a PET scan and EKG so
that I would be ready to start Chemo immediately after meeting with Dr. Martha
Glenn. She told me she would call me
back on Thursday. On Thursday, the Huntsman secretary called back and said no
scan or EKG were needed because my cancer was slow growing and didn’t need to
be treated and that it was known as CLL and that Dr. Glenn would explain more
on Tuesday. At that point I started
freaking out all over again. WHO DOESN’T
TREAT CANCER – right????? Well,
apparently and hopefully, me. Keep
reading…
I went to Dr. Stinnett yesterday and at first said nothing
about Huntsman because I wanted to see what he had to say and he basically said
the same thing, but with a lot more details.
I really liked him and he helped put my heart at ease.
Ok, so here is what I know (or am figuring out) copied from
the website above:
CLL
starts in a stem cell in the bone marrow. It can spread to other areas such as
the central nervous system, the lymph nodes and, more rarely, the testes. Stem
cells form blood cells (white cells, red cells and platelets.)
The
stem cells that become white cells start out as blast cells called
lymphoblasts, which produce lymphocytes, a type of white cell. There are three
major types of lymphocytes:
·
B lymphocytes, which
produce antibodies to help combat infections
·
T lymphocytes, which
have several functions including assisting B lymphocytes to make antibodies
·
natural killer (NK)
cells, which can attack virus-infected cells or tumor cells
Ninety-five
percent of CLL cases start in the B lymphocytes.
Mine is the B kind.
Basically I have a mutant cell that grows wrong. The good news is that this usually happens
very slowly. In fact, this is a leukemia
that is most often found in older people.
They usually find it in their 60’s or 70’s and then they do NOTHING
except monitor it because old age will kill them first. They try not to use chemo because it is not
real friendly stuff. When your life is
threatened, of course you take chemo drugs.
But it can cause damage to internal organs, put patients at risk for other
diseases, severely depress the immune system, and can lead to deadly
infections. So if you don’t HAVE to do
chemo, you don’t.
The bad news is I’m not in my 60’s or 70’s! At 36 I am one of the youngest patients the
oncologist yesterday had ever heard of being diagnosed. (He knows of a 32 year-old in Boise). We
believe that my cancer was caught VERY EARLY and that some of these older
patients have had it for possibly decades before being diagnosed.
If in the older patients the cancer progresses to being
troublesome, they treat it with chemo.
Because this is a cell that grows wrong, it will continue to do so. So, what I am saying is that chemo tries to
get the cancer back to the point at which mine is at right now. At the present time there is no known
cure. I know, that is scary! But, Dr. Stinnett also told me that in the
past ten years there have been remarkable strides (geometric growth, not
arithmetic) in the gene study of this disease.
He hopes and believes that a gene replacement therapy will be found at
some point in the future that will CURE this.
In fact, there was an experimental study done at the University of
Pennsylvania where only 3 patients were treated with gene replacement, but one
appears to have been cured, or in other words, they are not finding any of the
bad cells anymore. So, I just need to
stay healthy long enough to have super smart geneticists find me a cure! (Side note:
I have been a faithful donor to Susan G. Komen for years, but that will be
changing once I find the best place to donate to help find ME a cure. When I know that….you can be sure it will be
posted on the blog!)
So now what!?! Well, I am
still meeting at Huntsman on Tuesday.
Whatever new info I learn, I will post.
But basically Dr. Stinnett recommends and I agree that we are going to
do some more tests. The first is some more
blood tests. I will also have another
scan (but not a PET because my type of cancer doesn’t respond like most do to
the glucose in a PET scan) and a bone marrow biopsy. They are going to assess exactly how
progressed the cancer is and what specific mutant B cell I have. Most are very slow growing. There is one that is fast. If they find that I have the fast, then I
will start chemo. Dr. Stinnett doubts I
have it, but better safe than sorry. If
I have the slow, I will be closely monitored hopefully never having to do chemo
and just waiting for a cure. If it
progresses to any of the following I will start chemo to get it back to the
non-threatening state that it is in right now. I will start chemo if:
1)
I have the fast growing
mutant cell.
2)
My white blood cell count
starts rapidly increasing.
3)
My red blood cell or
platelet counts start drastically decreasing.
4)
I get crazy large and
swollen lymph nodes (mine are currently enlarged, but not crazy large where
they are affecting anything).
5)
I have recurring infections
that my immune system can’t handle.
6)
I start having
overwhelming weight loss or night sweats.
Right now, my only symptom is slightly elevated white counts and
slightly enlarged lymph nodes so that is actually a really good sign.
Dr. Stinnett told me that he fully expects me to live a LONG life,
to be able to see my kids get married, and to fulfill my dreams. I’m holding him to that statement!
In fact, in my finance class we talk about investing for your
dreams. Troy and I dream of doing a full
Ironman which we are going to do in 2013!
(Dr. Stinnett said go for it!) Also, in class, one of my recommendations
is to invest for retirement so you can be a “Smucker’s Centenarian” on the “Today
Show”. So, I need to live until at least
100 to fulfill ALL of my dreams! I think
I will. Think of all the medical
advances in the past 50 years! My cure
is just around the corner!!
A few last things:
My first and only true love, Troy, is amazing!! This has brought us so much closer in just a
few days. I love him and he has been my
rock!
Dr. Stinnett said that artificial sugars are NOT good for
me. So, I’m going to try to stick to as
many “NATURAL” foods as possible and I have to break up with my second love, Diet
Coke.
I also have to break up with my third boyfriend, Mr. Sun. I am now HIGHLY susceptible to skin cancer so
its big hats, umbrellas, and SPF 50 for me from now on.
There is another study where herbal green tea has helped
decrease white counts so I am going to start drinking some green tea and see
how that works out. He said it certainly
can’t hurt.
Right now, I intend to keep on living my crazy busy life about
the same way I have been, except for the sun worshipping and diet coke! And, of course, I have cancer. It is my new normal. It is weird, but it is what it is. I’m just going to roll with it. That Type A personality thing may get in the
way every once in a while, but so far, I’m holding it together pretty well!
I believe in prayers and miracles! I appreciate you praying for me and my
family! Please continue to pray me
healthy and pray for a cure! I KNOW it
can happen!
What I’ve learned the past few days:
God is good. He knows me
and loves me and I am very blessed.
There are so many people that love and care about me I am absolutely
overwhelmed! I have good health insurance
and Troy has about the best job stability there is, so we are OK for having my
care covered. I feel calm. If I’m not stressed,
you shouldn’t be. Last, I have the best kids and husband ever. If you ever need a reality check for what is
important, be told you have cancer! I
truly don’t care about anything except my family and I’m going to do everything
I can to be with them here on earth for a very long time! God will have to send a bus to hit me if he
wants me soon because cancer is not going to get me. I do trust Him though and am so grateful for
His plan. I was married in the temple of
God and sealed to my family FOREVER. I
take so much comfort in that knowledge!!
In closing for today, I’ll quote the great Bob Marley: “Ev’rything’s gonna be alright”!