DAY +1250 Kathy’s Update
It’s been quite a long while since I’ve updated this blog, but the old adage “no news is good news” applies here. I can hardly believe that it will soon be three and a half years since my haplo-allogenic bone marrow transplant for CMML, a very rare leukemia. My daughter was my donor.
The past eighteen months have been as normal, busy and healthy as I could have ever wanted. It’s very surreal to read this blog and travel back to a very scary time and think – did I really go through that? I am truly one of the lucky ones. I have lingering mild GVHD issues which mostly effect my skin and eyes. The skin issue is managed with a steroid cream along with an antibiotic ointment. There are mild flare ups from time to time. Mostly on my face and scalp.
My eye GVHD is managed with either Lotemax (steroid) drops or an antibiotic eye drop (Vigamox). I have severe dry eye problems at times, but was unable to tolerate Restasis. I tried three times to use it, but it felt like I was putting acid in my eyes. The “temporary burning sensation” lasted all day for me. My eyes are very light sensitive and wind sensitive. Even sitting under a ceiling fan can be irritating. I wear wrap-around sunglasses all the time outside.
I just completed cataract surgery for each eye. What an amazing difference! It had really become a problem this past year. There is always a concern that GVHD will flare up after medical procedures, and I did get a skin flare up for a few days. I even get a skin breakout after receiving a flu shot. My new immune system kicking into overdrive.
I still get regular blood tests at Hopkins every three months. That’s often, I know, but my doctor wants to keep a close eye on my progress. I don’t mind anymore, but I still get very nervous beforehand. My mind always goes to that dark place of fear, where all might not be well. I guess that fear will always be there.
This year, 2015, has been better than the previous two mentally. It was very hard to transition from being a full time patient to a cancer survivor. It was almost a feeling like – I don’t want to jinx this by feeling too relaxed or happy or even say the word “survivor.” Very bizarre and illogical, but the anxiety is real. I can finally say that days can go by when I don’t dwell on the experience or think about it anymore. Sometimes it seems like eons ago, and sometimes just yesterday.
I think I have experienced a bit of PTSD at times, especially in 2013 and 2014. Not serious, but something triggers a memory that is not so pleasant and I have to deal with that in my own way. It has been a long journey that continues, thank God. When other people who find themselves on this journey too reach out for help, I try to oblige. I’ve been very blessed and I try to pay it forward in some small way. Only someone who has been through this unique experience can truly understand.
I won’t wait as long to update in the future. Life is good.
so glad to hear you are doing well …Diane…😊
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I hope all is still going well for you.. I had a BMT last February 2017 at Johns Hopkins. Mine was also a half match with my son as the donor. I had a mild case of GVHD 3 weeks post transplant but no additional symptoms since.