It's been over a year since my last update!
What a difference a day makes! Ok, maybe it’s more like what a difference a year makes…

I had another bloodwork checkup today and the results were very encouraging. For those of you, like my brothers’, who prefer brevity, that’s all J Good news, YaY J

For those of you who like the nitty gritty…its complex but I’ll try to keep what's been happening over the last year streamlined J Basically, for the first time in over a year, my body is showing signs of healing on a cellular level without the use of drugs. I love geek-ing out on cellular health and alternative therapies but I’ll try to keep this as just a basic explanation of what’s going on like so many of you have asked for. It’s a lot of info and can be boring but if you’re interested in a deeper answer besides “I’m doing good”, keep reading J

For the last year I have been struggling with graph vs. host disease (GVHD). It’s basically a transplant rejection from my brother’s bone marrow. After my transplant, my cancer came back so I had 6 additional “mini” transplants and from that my immune system kicked into high gear. My new stem cells suddenly woke up so to speak and realized they were in the wrong body and started attacking my organs like they were foreign invaders. It took a while to figure out what was happening but with the help of a sweet friend and some “accidental” medicine mishaps we pieced it together. There are 3 basic categories of GVHD; mild, moderate, and severe. Those with severe don’t have a great prognosis of living past 2 years. Those with mild can live with it for 40 years or more with just lifestyle irritants. Those with moderate constantly fight the battle of getting it under control. I was at moderate and quickly moving towards severe each month.

Long term planning for me has become the next 4 weeks before my next bloodwork is drawn. One of my doctors told me several months ago if we couldn't get this under control soon it would be time for me to quit my job and live my bucket list. If my numbers got a lot worse, then it signaled not only the distress my body was going through but also meant that my symptoms were worsening and becoming more unmanageable and eventually organ failure would follow. The major areas affected for me have been my eyes, skin, liver, and lungs.

Eyes – they are basically drying out and will eventually “crumble” as my doctor put it; the danger of course being that I lose my vision. Thankfully I have been able to get scleral shells that trap fluid on my eye all day long. I have to use drops constantly but this is just a minor annoyance. I’m grateful for the progress here. I have been noticing over the last few weeks that they seem less dry. I used to wake up with both eyes swollen shut from dryness but now only 1 is and that’s progress! This is not due to the scleral shells but from healing at the cellular level.

Skin – I have what I call leopard spots that I've sort of grown fond of J These are also just a minor annoyances and not serious at all. They can dry out and become major sores but mine seem to be doing just fine. I have to protect them from the sun but gobs of baby sunblock works just fine on beach days (how lucky am I?!) J 

Liver – my poor little liver J it’s been working OT for over a year now. My immune system is launching attack after attack on this organ! This is one of the major markers in my bloodwork that I watch very carefully. My liver enzyme levels were dangerously high for a long time after transplant. The danger being that it will shut down eventually and I’ll need a liver transplant. Each month we adjust my meds with the hope that it will put my immune system to sleep a little more and give my liver (and these other areas) a break. I tapered off my drugs for a little while and my immune system had a field day and launched an all-out war, causing my liver to freak out again (enzymes were triple and quadruple what they should be). I do have the option to take a stronger medicine than I am taking but the long term side effects are death basically so we’re doing everything we can do to not take that J We upped my current meds (less potent than the one I just mentioned) and my body responded well. The problem is that I’m taking too high of a dose to stay at this level long term without bad side effects. So, we started the process of slowly trying to lower the dose. My liver enzyme numbers went up again last month as soon as I started tapering the drug. The frustrating part of this is that in addition to the drug I am learning a lot about my body on a cellular level and have been doing many things to give it a healthier environment over the last year but healing takes time….much longer than drugs do, to change your body at a cellular level. For a year now I have been making adjustments to my health and it was frustrating to find out that my body still only seemed to respond to the drugs. After last month’s appointment my doctor’s and I agreed that we would leave all medications as they were and see what happened. It’s a gamble either way. If my liver enzymes got worse then I’d have to up my meds again or try the harsher med. I am so excited to report however that today’s numbers showed a huge improvement….the biggest one I’ve had so far without adjustments to my meds! For the first time since my transplant in 2013, 2 out of the 3 liver markers were in the normal range (I so cherish being normal!) and the third one was the lowest it’s ever been (only 31 points too high). That 3^rd marker, my alkaline phosphate level, dropped over 60 points in the last 30 days! And the most exciting part of that is that it was not induced by drugs. My body figured out on a cellular level that it shouldn't be attacking itself. Major victory! Without putting my immune system to sleep it started to realize that my liver was not a foreign invader and was not worthy of the attack being launched on it. That’s true healing at the cellular level! For the first time, my cells made the correction needed in my body without the help of drugs! Going forward, yes, the enzymes still need to come down into the normal range and then we still need to address lowering my medicine dose again as it is still a few milligrams too high for a daily dose. But for this “tiny” improvement I am so, so grateful. I cannot put into words how encouraged I am by this. Finally my body seems to be responding to something (a healthy environment perhaps?!) other than drugs! I’m learning so much about our bodies on a cellular level, what to do to provide the healthiest environment for those tirelessly working cells, and making adjustments all the time to do so. It is very encouraging to see my cells improve without drugs J I am my best science experiment J From here, I keep my month to month monitoring and hopefully continued healing until my cells are fully accepting my brother’s bone marrow without suppressing my immune system or attacking my organs. For this month’s victory however, I celebrate J

Lung – This is currently my biggest problem area at the moment. I have 2 issues going on with my lungs. The first is wheezing (similar to that of COPD or asthma) induced by GVHD. Hopefully as with my liver, getting the GVHD under control on a cellular level will help this to start improving. The other issue is that due to some of the radiation I had, my diaphragm has moved up in my chest cavity and is collapsing my left lung. My right lung is strong and healthy but my left lung doesn't work at all basically although I can get air in the upper portion of it still. This issue seems to be more of a problem than the other GVHD issues as I have trouble breathing well or exerting myself. It’s ironic because I am able to work and even just walked a half marathon a few weeks ago and I exercise regularly. My doctor said if I ever stop though I may never be able to again. It doesn't take a whole lot to get me winded these days....sometimes just a short walk in this humidity will do the trick. They usually test your severity level by seeing how many blocks you can walk without getting winded. They don’t think I’ll ever regain full lung function but the goal has been to stop its decline. I've been having tests done for a year now and my lung capacity has been in a steady (but slow) decline since last August. Extrapolated out, it would mean that I could be on oxygen by the end of the year if my lung decline continues as it has been. You’d never know to look at me but things aren't always as they seem J There’s a war going on within (like with so many of us) J The meds the doctors gave me to “potentially help” these issues made me pretty sick so I had to stop taking them. Right now there isn't any medicine that can address these issues. I am continuing to work on other alternatives to lung health however. I get another lung test on 6/2 and we’ll just have to see how things are progressing at that time.

I also get a PET scan by the end of June to check for any new cancer cells. It’s unlikely but not impossible for them to be growing right now. One of the benefits of GVHD is that it keeps the cancer cells at bay. I have no reason to think they are growing at this time so we’re just waiting for the test to verify this.

Thanks for your support and love! Grateful for the many gifts I’m given each day…..

Mary