Friday, July 31, 2015

Betty said I have to post something. So, I am currently chelating iron with deferoxamine via a pump using a small needle.  I wear it for 12 hrs and I usually wear it overnight.  The good part with this method over exjade (pills that are dissolved in water then swallowed) is no more gut problems.  My Iron is down below 2000.  Deferoxamine has two side effects that affect me, one being itching, 2 being blurred vision (slight).  The doctor said the itching will stop when I'm off the med, but the vision thing could be permanent or clear up when I stop.

Now they tell me I have loss lung capacity either from graft vs host, or from the damage that chemo caused.  What do they say, "this is coming among transplant patients.  Well I am REALLY getting tired of all the issues and the fact more issues are still showing up.  My life is very different from before the disease.  I often question why I fought it and just didn't do any treatment and I would be at peace by now.  The other times I have a good day or two and I think differently.

I have to say, the nurses, doctors, and other staff are very good to me.  I have no complaints on the people treating me.  Betty has been wonderful, I hate the fact I screwed up her life.  These are some of the things anyone going through this type of treatment will have to deal with.  I just have to remind myself that there are a lot of people worse off than me.  Thats it for now.
God Bless,


  1. Thank you Betty for prodding Scott to post. I've been keeping up since 2013.

    Glad you're still around Scott. You are an inspiration.

  2. it's good to hear from you Scott. we are also following you from the Netherlands. My husband has problems very similar to yours, the latest being lung issues (probably BOS). For us too it is a never ending story. he gets very tired and is worried that he is just a burden. but we have two young girls and I am so happy we still get to be a family and they can know him even though he might not be as active as he'd like to be with them. I think you are very brave in honestly expressing your feelings in this blog. It is not easy. Keep strong.Best wishes to you and Betty

  3. Scott & Betty,

    I read this post just a day or so after you posted it. I waited to respond because I really wanted to think about this. I'm very glad Betty encouraged you to post, because I think for all the people who follow your posts, it is important for them to understand that sometimes the "journey" is just so difficult, it's tempting to give up. You have been fighting the good fight for so long, and yet you continue to have significant issues that impact on your quality of life. I have 3 things I'd like to say:

    1. Allow yourself to feel sorry for yourself. It's great to be a fighter and to square up against your "opponent" with courage, but it's also okay to cry and be depressed. People mean well when they tell you to keep your chin up, but sometimes you just need to let yourself wallow in a little self-pity. What the hell, you deserve to whine!

    2. In terms of winning the battle, I will recall an unrelated experience of mine. When I was living in Germany, I decided to learn how to cross-country ski. I took lessons from a wonderful Swiss man. He was an expert skier. I was in awe of his ability to ski uphill on a hard-packed slope. He taught me the technique for scaling the slope, but every time I tried to make the climb, I would fall short of the summit and slide back downhill, often on my belly. He only watched and made no effort to assist me. After repeated tries, and now fully exhausted, I fought back my tears and yelled, "I JUST CAN'T DO THIS!" I thought surely he'd ski right over and assist me to the top on the slope. What he did do, I have never forgotten. He skied over to me and looked down at me and said in a very calm voice, "Sherry, you can do this. You just haven't found the way." After several more attempts, I made the summit. I had found the way. He taught me that no one can do it for you. No matter how frustrated you become, only YOU can accomplish your goals. You have so much courage that I know you can do whatever you have to, to maximize your chances of long term survival.

    3. You mentioned the impact this whole mess has had on Betty. Yes, Betty has had to take this horrible journey with you. No doubt, it has impacted on the quality of her life as well. Naturally, because she loves you, she would never complain, but you do owe her one thing: whatever time you have left on this planet, you need to make the most of it with her. Find the joy in every day together. Do everything you can on your bucket list. Live like you were dying, because we are ALL dying...someday. Go out on a high note if you have to go. Betty doesn't need you giving up!!!! You owe her that.

    I know we are strangers, but I am with you in spirit. I want you to survive to email me one day and say, "Hey, thanks for writing." Hope today is a good day there.

    Sherry Baby