Caucasian mid-adult man standing alone on beach looking at ocean at sunrise.Intro
Today I am standing at the waterline on the shore looking out at the waves. I am at ground zero. I never expected to be here again, and yet here I am, battered and bruised, my board broken in pieces. The wave was just too damn big, I lost control and was sucked under to bounce against the reef and rock. Eventually I surfaced and someone grabbed my hand and the next thing I recall was riding into shore. Terri and the kids, the medical crew and many of you were there with your support and prayers. When I look in the mirror, I wonder who the hell is looking back at me. But I’m alive and still have the internal drive that will heal me in the end.

Update
I thought February and March of 2013 were tough, after all that was when I had my transplant, but then I was in the hospital 24/7 with nurses and doctors and Terri. This time it was mostly Terri and the kids. February and March 2014 were the hardest days I have experienced in my life. Partly because of pain killers and mostly because of the pain both physical and emotional. I do not think I will remember those two months. They are a blur to me, ironically, that is literally true.

I have been fighting GVHD of the gut since late October, with the med team trying to get it under control. We did so with new medications and a complete diet change that I am still trying to figure out, still experimenting what will make me nauseous and what I can do to gain the weight and muscle I had lost. I now weigh 170lbs (a year ago 220). The GVHD has now moved outward to my skin and eyes. I had read or heard that is relatively a good thing, but until I see my Doc in StL on the 21st I really don’t know.

We do know that the HSV infection (the cold sore virus) was never stomped back into hibernation by the high dose Acyclovir treatment. It continued to spread. So we went to a dermatology oncologist in February (not sure if I mentioned that) and we did the same treatment at a higher level. I was off the high dose for two day when my right eye began to become painful. That damn virus moved there and set up camp, right on top of the GVHD. Lesions on my cornea. Yes, it is as painful as it sounds. And that damn virus kept spreading across my lower lip. The treatment did not work. So they upped the dose some more (to 3 grams/day) and we started putting Zirgan (an acyclovir topical for the eyes). Again I could not drive, hell I could not even see out of my right eye.

pain_ladderSometimes pain killers are just pain reducers, unless you take one more than you should. I take oxycodone and after the second episode of being whacked out, I decided I would just have to live with the reduced pain. I could go on, but let’s just say I was still underwater bouncing against the reef. And the pain just continued to escalate. Then Mom passed away from Leukemia. I don’t know, but between all of that, March was both a literal and figurative blur I do not care to remember much of.

The beginning of April things began to change. Mom’s Memorial, her Celebration of Life, gave me some closure and several memories you do not want to know. My eye and lower lip are improving… knock on wood, throw some pixie dust and positive vibes my way. I am hoping this ordeal is finally resolving. The pain is now tolerable and I can see once again. The pain killers stay in the bottle until the end of the day. I still have good days and bad days, but it is wonderful to have good days once again.

I may not be standing in front of the ocean at the waterline, but I am at ground zero. On April 21st I see my Doc and the  dermatology onc. to see if the virus is dormant and what to do next, because I have a lot of work to do to get my body back in shape and healthier. Yes… healthier, because becoming well is way across the ocean.

Mark

9 Comments

  1. Dear Mark and Terri,
    I wanted you to know that I have not forgotten you and your family. You are all in my thoughts and prayers. My family and I are well for which I thank God and the universe at large. I truly appreciate what a gift health is. I do so hope the very best for you, Mark.

    Please let me know if there is anything I can do. I mean it!

    Monica

  2. Linda Senenfelder

    So sorry to hear about your trouble. You are still in our prayers Nd thoughts. We hope things turn around for you soon. It has. Even a long hard your for all if you. Hoping thing turn around real soon.

  3. Wow what an incredible journey you have had… my healthy eyes fill with tears so often as your and Teri’s words. At the same time my heart swells with admiration and awe of all you have endured! I continue to send my love and barrels of pixie dust to you both in the time of Spring: time of new beginnings and time of glorious growth and time of wondrous miracles. April has always been my favorite month, i married in April, both my children were born in April and Earth Day is in April too… may this April shower you with health and joy! ♥

    • Sunbeam you are a constant inspiration and fill me with hope and joy. April is the time for healthy growth. Thank you!

  4. You have had a couple of really tough months. Hopefully, you are on an upgrade now and things will start to even out. You are in our prayers every day. Keep thinking positive because I have faith that you will get better. There is a ray of sunshine over you, let it warm you and get you well.

    • Thank you Loretta! Winter is over let the sun shine through. Your prayers and thoughts are much appreciated.