Marshall's music, t-cells, t-shirts and more

Thursday, September 27, 2012

Grateful Every Day 100%

As you may have heard my 100 day post transplant checkup went well! My cancer is still in 100% remission and my bone marrow is 100% donor. Wow that's a lot of hundreds! What does it mean?

It means that the chemotherapy and radiation that I underwent in preparation for my transplant did a good job of completely eradicating my bone marrow (and hopefully the cancer along with it). My donor's marrow has now engrafted and taken over the job of making blood cells, and it's doing pretty good too! My doctor advised that I am not expected to reach normal blood levels ever again, although they will improve over the next few months.

My MRI looked good - no traces of cancer or tumors in my brain. This is important because when chemotherapy was first being developed for leukemia patients they would reach remission but then die of brain tumors within about a year. 

You see there is a barrier between your cardiovascular system (your heart and blood vessels) and your central nervous system (your brain and spine). Although the cancer in the blood stream was being destroyed by injections of chemotherapy drugs it was still able to hide out in the brain. This is why I had to undergo so many lumbar punctures where they inserted chemo directly into my spinal fluid. I also had radiation shot directly at my brain as you may have read in previous posts. 

One interesting thing they discovered was that I have an "Arteriovenous Malformation" - meaning that the blood vessels in my brain are not formed in the usual pattern. This is not likely to cause any problems but is quite rare - not nearly as rare as my cancer - but yet another way that I am unique. I heard Einstein had it too... okay I made that up, but that would be cool right?

What else, what else... My lungs were just a tad weaker than they were prior to the transplant. This is expected, and is likely due to being confined to a bed and or a side effect from the radiation. My vision checked out just fine, and my chest x-ray and most my other tests appeared normal. My testosterone level was slightly low however, so for the next 6 weeks I get to juice up like a Major League Baseball player!

If you don't know that's Melky Cabrera. He got busted for using testosterone last month. Unfortunately I don't anticipate I'll be hitting any home runs soon - we're just going to try to get me back to normal - there go my dreams of getting Mark Mcgwire biceps... (sigh)

Honestly, I am just grateful to be alive everyday. Things look good right now, but that doesn't mean that I'm "out of the woods". In fact, I'll be in the woods for the rest of my life. The good news is I like nature :) Check out these gorgeous pictures from our family night "hike" this week.

I've had people tell me I'm brave or that they admire what I'm doing. I have to admit however that I don't feel like a "fighter" or anything like that. I didn't ask for this to happen, it just sort of happened. All I can do is take it one day at a time. I like what Jeffrey R. Holland said in conference a few years ago, "No misfortune is so bad that whining about it won't make it worse." I'll have to file that one away for Kezman when he's older ;) It's so true though, why worry or complain about things you can't change?

I heard somewhere (probably on facebook actually) that even when the "glass is half empty" it's really 100% full - just 1/2 air and 1/2 water - that's the way I like to see it!

Wednesday, September 19, 2012

Dear Caregiver

I just took a second trip to Idaho with my lovely little boy. Idaho is an escape from city and care giving for me, but the last few times it just has not been the same.  I love the laid back atmosphere and talking with friends and family, but too many aspects of the careful country girl's life and the city girl mom have become mixed.  I came home to pamphlets from Be The Match, the national bone marrow registry where we found Marshall's donor. If you would like to sign up to potentially save someone's life go here.  I actually took the time to sit down and read about caregivers for a while.  "Your experience as a caregiver can be just as intense as the person who received the transplant.  Your lifestyle, values, priorities and relationships may change too.  You need your own support and plans for how to cope.  It is natural to sometimes feel overwhelmed by responsibility, caring for your loved one and other family members, the house, finances, etc. It is not unusual for caregivers to ignore their own needs. If you become exhausted and overwhelmed, it can affect your ability to provide good care." (Living Now: Special issue for Caregivers)

Many things this year have worn down on me, mostly related to Marshall's sudden diagnosis, roller coaster of treatments, and chance of survival. After eight months of intensity it is past time to step back, smell some roses, and prioritize. I know it is normal for me to feel sadness, anger, grief, guilt, and loneliness. I know I have to find my own path to recovery as well. After being so focused on Marshall for so long and with him doing so much better for now, I feel like I have to find myself all over again. I know I am a much different person now. Some things I have attained more of include: humility, gratitude, an even bigger perspective on life, cancer biology knowledge, and strength.

I've put a lot of things I was pursuing on hold for the last eight months. I've got to keep progressing too, but looking back I realize if nothing else that my insides have progressed :)

Sunday, September 2, 2012

I'm a Chimera!

In mythology a Chimera is a fire breathing lion with a goat head coming out of its back and a serpent for a tail. Unfortunately, in genetics a chimera is just a living organism with two different sets of DNA. Still kind of cool but I won't be able to breath fire, grow a tail or anything like that - shucks!

For those of you who don't know, it was a gamble to go through with the bone marrow transplant. The trouble was that my chemotherapy was not working as fast or effectively as the doctors had planned. That combined with the inconclusive data on whether I had "Mixed Lineage Leukemia" - a far worse chance of survival - was enough for me to take the risk.

What are the risks of a bone marrow transplant? 

They are often referred to as GVHD (Graft Versus Host Disease). In a nut shell, this means that the donor marrow doesn't recognize me and decides to attack. With a peripheral blood stem cell transplant (that's what I received) counts may recover faster but there is increased incidence of GVHD.

Graft versus host disease has two phases; acute, which occurs within 100 days of the transplant, and chronic, which is recognized after 100 days following the transplant. Acute GVHD can affect the GI tract, liver, and skin (we believe my stomach issues have been the result of this). Chronic GVHD can affect nearly every organ in the body! There is about a 50% chance I will be affected by chronic GVHD; to what extreme is indeterminable. It can also be manifest in endocrine abnormalities, infertility, memory loss, concentration issues, and secondary malignancies (tumors).

That is the reality of what I am facing. So what's the good news? For one thing, I'm alive! I thank God every day for this. It is truly a blessing and a miracle. It really makes you think about what's important, and cherish every moment. I wrote this song while I was in the hospital in June. I was in one of those "meaning of life" moods. Just click on "The Story" if you want to listen.

Since we reviewed all the scary GVHD stuff I think it's only fair to mention some of the positive benefits from the transplant. For example, I won't have to pump anymore toxic chemotherapy drugs through my body; whereas my initial treatment protocol required years of chemo. Another plus is that the donor cells are prone to fight off any residual cancer that may be hiding out (or if it ever tries to come back).

Speaking of that, my 100 day check up is coming up on Sept 14th.
Technically it will have been 105 days since my transplant but who's counting right? This is when they will test the ratio of my chimerism (how much of my bone marrow is me and how much is the donor) as well as if the cancer is still in remission. Keep your fingers crossed (where did that phrase come from anyway) and we will plan for a good graft and continued remission!