Two Years Out! From Patient to Survivor

The journey these past two years has been long and challenging at times, but it has been a lot easier with all of you coming along with me. On May 10th, we had a party at our house in celebration of my second re-birthday since the bone marrow transplant. We thank you all who came to share that day with us. I can’t believe it’s been two years. Each milestone that is reached after transplant is a cause for celebration – surviving the transplant itself; the first 100 days; the first six months; the first year; and now two. A time when so much could go wrong, but thankfully in my case everything went right.

The re-birthday party was a wonderful day. It was great seeing people (family & friends) who have prayed and supported me (us) through this whole ordeal, and to be able to thank them personally for all that they did. I am convinced that I could feel the support of all of you throughout, and that it definitely got me (us) through the hard times. I hesitated about having the party on May 10th. Yes, it was the second year milestone, but I had not had my two-year checkup at Hopkins yet. I had not had all the tests and biopsy results that would tell me officially how I was doing. I felt like I might jinx the outcome if I had a celebration too soon before I knew. But in the end I decided to go ahead with it. And I’m glad that I did. No matter what the test results might show, I experienced the gift of two more years. Thank God for that.

On May 20th I had a battery of tests, many vials of blood taken and the dreaded bone marrow biopsy. I also was given six more immunizations. Five booster shots for the usual childhood diseases and one new one, the MMR vaccine (measles, mumps, rubella), the live virus. Before two years, I could not be given any vaccine with a live virus, because my immune system couldn’t have handled it. My immune system is only two years old. Three shots in each arm, a biopsy taken with a gigantic needle in my pelvis (ugh), and of course, the many vials of blood. It is a week later and my arms are still sore. The other part of my anatomy is feeling much better. If this is too much information, I apologize. It’s amazing, but all this poking, prodding and sticking has become routine for me. Not pleasant, but very necessary. The blood test results are two pages long. They test EVERYTHING.

I got the biopsy result today via e-mail from my doctor at Hopkins. His e-mail was very short, but oh so sweet. He said, NO LEUKEMIA – GREAT! BLOOD COUNTS PERFECT – GREAT! All my best……

I said recently that 2013 had been the best year I have had in a long, long time. I finally felt healthy. And 2014 is turning out to be even better. I am enjoying so much my art classes and my art friends. I am painting with a new sense of excitement. I feel like I have all my energy back again. Before the transplant I had been so fatigued all the time. I can’t wait to wake up each morning to a new day. I take zero medication now. That all ended July of 2013. I still have GVHD (graft vs. host disease) in my eyes. My eyes get irritated, dry, blurry at times. Bright sunlight and wind bother my eyes. I had silicon plugs inserted into my tear ducts and that has helped tremendously with the dry eyes. I bet you all became squeamish reading that. But really it’s nothing. I didn’t feel it when the doctor put them in, and I don’t know they are there. Who knew? Anybody who suffers from severe dry eyes should give them a try. I use Restasis eye drops twice a day every day, and that has helped a lot also. This condition will never go away, but it can be managed. Sometimes when I’m having a flareup of eye GVHD, it makes it hard to read or paint or watch TV. I have to avoid the sun like the plague, and I have a few other restrictions, but mostly everything is back to normal. And as for my hair? Well, it’s never recovered, and probably won’t. All in all, a small price to pay for a second chance at life. I see my doctor again in September, and then it will probably be six months between visits.

It’s nice to be “ordinary” again. Planting flowers. Having our house painted inside. Watching a ball game. Having a party. ACTUALLY MAKING PLANS! Each time I walk into that giant waiting room at Hopkins for a checkup, I notice all the people who are just starting this transplant journey. The ones who look so frightened, the ones who look so frail and feel so sick. I just want to give them all hugs. You recognize them right away – bald heads, masks on, a blank stare, toting around their large bags of medications and needed supplies. Just trying to get through it. Their caregiver by their side. Trying like hell to get to THEIR milestones. Larry and I look at each other and think, that was us in 2012. And look at us now. So blessed.

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1 Response to Two Years Out! From Patient to Survivor

  1. James Hoffman says:

    Kathy, what a journey you had. I am so happy for you and your family.

    Sent from my iPad


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