It’s The LIttle Things
Some of you may remember that our good friend Amanda got me a T-shirt that says “I pooped today.” When you are a cancer patient they ask you daily about your bowel movements and constipation can be a real issue. Thankfully so far it’s been smooth sailing and I am wearing my shirt today to proclaim my accomplishments.
How to “Read Rob”
When I worked at IU Health and was going through my first battle with cancer, the Orders Team gals called my Caring Bridge site “Reading Rob”. As in “did you read Rob last night?” Oh you need to “Read Rob” there was an update today. I realize that some may be out of practice at “Reading Rob” and for others, this is your first time. So let me give you a few pointers…1) I’m sarcastic by nature and it will come through in my writing 2) Humor is what gets me through this journey. I’m not making light of my situation or others, just dealing with it the best way I know how 3) I find myself funny, even when LIndsey tells me I’m not funny, if I get a laugh out of something, chances are I’ll say it/write it.
Catching You Up
I’m spending my 2nd day of many in the hospital today. I am currently receiving my 3rd dose of Cytoxan. I receive six 3 hour infusions of Cytoxan over the course of 4 days. On day 4 I also receive Vincristine and Adriamycin, aka “The Red Devil” (Apparently the really bad chemos get nicknames). I’m also receiving the steroid Dexamethasone, which is all sorts of fun too.
After my first four days of chemo I will get some time off before I get another dose of Vincristine on day 11. Over the next few days my blood counts will start to plummet. I will for sure experience headaches and nausea (my most common side effects last time) and may have vomiting and mouth sores among other things. Not pleasant, but still a lot better than what is to come (more on that later)
Essentially the treatment I’m receiving now is the exact same cycle I received last time. If you remember, I had 8 cycles of chemo that alternated between 2 different cocktails (1a, 1b, 2a, etc). So right now, I’m receiving 1A again. I may need to receive 1B as well, depending on how long it takes to get to transplant.
Dr. Cripe listed out the side effects of chemo this time around, and this is exactly what he wrote:
1) Infections and other complications
On the plus side, it’s a really short list of what can go wrong, but that 2nd side effect will be really hard to recover from.
A Little Ray of Sunshine
Kathy is my Stem Cell Transplant coordinator and she stopped by today to explain the process. She is a very nice lady but her content leaves a little to be desired. The stem cell transplant is going to be a real bitch. Harder than anything I’ve done before. Granted, there isn’t another option with traditional medicine. So away we go.
One I achieve my 2nd remission (and I will achieve my 2nd remission) I will be transferred to the care of the Stem Cell team. For shear laziness, I’m going to type SCT for stem cell transplant. Once with the SCT team (oh hell, how about SCTT) I will meet with my transplant doc, Dr. Nelson. They need to make sure I am healthy enough for a transplant so I get to do all sorts of fun test over the course of a few days. Echocardiogram, Pulmonary function, xrays, and blood work to name a few. They are letting me skip the mammogram and GYN workup.
Before the SCT, I need to find a donor. My sister has the best chance of matching me. All siblings have a 25% chance. Kathy said they’ve found matches with a single sibling, but also oddly enough sometimes don’t find matches even with multiple siblings. If Michelle is not a match, then they will look to people who are registered at bethematch.org, which is run by the National Marrow Donor program. Through this program, I have a 75% chance of being matched. My chance of being matched is better because I am a white male.
So, now the obvious question, “Rob, am I a match to donate stem cells?”. Chances are no. Generally speaking, I match with 1 in 100,000 people. HOWEVER, you might be someone’s match. Just like a complete stranger may be my match and help save my life, there could be someone out there that is waiting on your marrow to save their life. So even if it’s very unlikely that the two of us would match, I still strongly encourage you to sign up at bethematch.org. For one, we may just get lucky and beat the matchings odds (and then buy a lotto ticket) but more importantly you have a likelihood of saving another Rob somewhere out there. Now, you must be willing to donate to a complete stranger, but if giving some blood to save a life is something you are willing to do, please consider going to bethematch.org and signing up.
Seems Like We Need to Break This Up a Bit
The last section was getting a little long, so I threw in another header to break things up. Anywho, once I have my testing done and I have my match it will be another 4-8 weeks before I get my SCT (depending on the location and availability of the donor). During that time is when I might get cycle 1B to make sure I stay in remission.
Now, here is where Kathy’s content begins to fall a bit short. I will be admitted 7 days before my SCT. I will receive 3 days of full body radiation and multiple days of chemo that is stronger than what I’ve received to date (and I get some pretty strong chemo). I will then get 3 days for my bone marrow to completely die off before I receive the SCT. After the SCT, things don’t get much better right away. Kathy said that it is almost 100% sure that I will develop mouth sores so bad that I won’t be able to eat and will be fed via IV. I will also have some level of Graft vs Host Disease (GVHD) which probably deserves a section of its own.
Since I am receiving someone else’s stem cells and because those stem cells produce my blood and immune system, I will have GVHD. GVHD occurs because someone else’s immune system is inside my body and their immune system will recognize my cells as enemy cells. This isn’t all bad, because they should (hopefully) also recognize any leftover leukemia cells as the enemy and destroy those as well. However it is somewhat bad because my new immune system will be most impactful to my skin, stomach and liver. I will potentially develop a rash over most or all of my body that was described to me like a sunburn that will blister and peel (are you beginning to pick up on why Kath’s content needs some work?). I will also experience stomach pains, nausea and vomiting. Diarrhea is likely and there is an outside chance my poop will regularly be a bloody and watery stool (ooh, pretty colors in the toilet). My liver will also be impacted, but the side effects of that are yellow skin and eyes. If I have really good timing, that may happen around Halloween.
GVHD can be acute or chronic. I’m hoping for the acute kind. Through the help of medications, it will last up to 3 months. If it goes longer than 3 months, then that is considered Chronic GVHD. Essentially the new immune system isn’t learning to not attack my cells or isn’t being suppressed enough. Chronic GVHD requires additional medication, that I’m guessing have their own side effects.
After I receive the SCT, I won’t have an immune system for about 2 weeks. This will be one of the most dangerous times as I won’t be able to fight off infection. Eventually my new immune system will start to grow and my blood counts will rise (and GVHD will begin). Overall, I will be in the hospital for around a month. This is a little bittersweet because I will be on the BMT unit in an older part of the hospital, rather than in the newer Simon Cancer Center. On the plus side, I’ll probably be too sick to notice.
After my immune system is strong enough to send me home, I still won’t have much energy. Kathy said I will need to have someone around 24/7 to help. I’ll be able to feed myself and walk to the bathroom, but not much else. I’ll need someone to wake me up to ensure I take my meds and eat. I imagine it would be good if they woke me up to use the bathroom as well, but I can always roll over to the other side of the bed if they forget.
After about a month I should have enough energy to be a bit more self sufficient, but it will be 3-6 months before I start feeling close to normal. Throughout this time I also have to have labs drawn, have the potential for additional hospital stays and will visit the clinic 3 times a week.
That seems like enough information for one post. It’s a little daunting to think about, but this is the path forward. It’s not like I can just sit around and see if something changes. We need to treat this, and we need to treat this now. I’ll borrow a phrase from someone else battling cancer and say “God is bigger than Leukemia.” That is most certainly true and I am relying on him through all of this. Which brings me too…
A Duck Dynasty Prayer
Those of you new to reading Rob will have to look back to the origins of this. Although I haven’t watched Duck Dynasty in quite some time, I watched it a lot during my first battle with Leukemia. Since they ended every episode with a prayer, I figured I could end my nighttime posts with a prayer too.
God, this was possible, but not expected. I thought getting past 2 years disease free would put me on the path to a lifetime of survival. At first I thought I was dreaming when I was told the leukemia was back, but I haven’t woken up yet. I’m separated from my family, my work, and my church. But you are bigger God. You are bigger than this disease. The path forward is not easy, but it is a path. I will praise you in the storm, dance in the rain, and come out on the other side cured again if it is your will. Thank you for everyone you have put in my path and all the support that I have. I give this all to you. Use me as you need and let’s kick cancer’s ass together. And most importantly, thank you for another day.