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”!