It has been a while since I last wrote. I guess that even I, the eternal optimist, can feel discouraged sometimes. It has been a difficult two weeks; for many reasons. As I mentioned, I was hoping to go back to work part time in February. Because of the impending stem-cell transplant, this probably won't happen. In fact, it might be quite a while before I get back. People have somewhat incredulously asked me, "Why are you in such a hurry to get back to the 'stress' of work". Who I am has always been defined by my responsibilities to others, my partners, my patients, my friends and my family. Part of feeling 'whole' again has it's foundation in how I might serve others. I was really looking forward to that, as it will be both emotionally and psychologically healing. Even now, when I do a little administrative work in my role as Chief of the department, I feel immensely normal. I hope for this as much as I hope to be successfully treated of my disease.
Second, I have finally admitted to myself that a stem-cell transplant will not be a 'piece of cake' unless that cake has liver pate for frosting and sardines for candles. I know this will make me sick beyond what I have previously experienced. I know I will get through it; I don't worry about it, but it will be hard.
Third is the fact that I feel weaker than I did after my heart transplant. The drugs have taken their toll, (or the amyloidosis has). I feel fatigued all of the time and fight past it to function. I am dizzy all of the time, especially when I get up from sitting for more that 15 minutes. I feel bad for Barbie, because I am not always fun to be around, even though I try as hard as I can. I remember before my Dad died of multiple myeloma, he was on the same drugs that I take and he was often 'grouchy', which annoyed us. But now I understand; it wasn't his fault.
Every patient who is chronically ill just wants to feel normal again. Often we must accept a new normal and come to terms with who we are, not who we were. Then again, I would rather feel a little bit ill half of the time than be a little bit dead all of the time. Ah yes, perspective.
How I feel does not diminish my gratitude by one iota. Nor has my hope waned. It is just that, on some days, the effort to self-motivation is the heaviest weight that I lift. I see six months from now a retrospective view that does not daily remember these difficult days, because they remain in the past. The more I can focus on others, the sooner that will come to pass. Until then, I have my fork ready to dig into liverwurst cake.
Hi Kevin, its nice to see you writing again. i always love reading your messages. Don't beat yourself down. We have enormous decisions to make that not only affect our life but the lives of our family. I have mixed feelings about the stem cell, as you know. I'm so scared to do it, which is so funny, what could be the difference stem cell or heart transplant. Dr. Shrier wants me to do the stem cell Feb or Mar. I told him "no". I said I want to give Velcade and Decadron a try. My number went up from 206 to 277 without any chemo drug. So I want to see where my numbers are after this first course of Velcade before I make my decision and also I will call tomorrow to set up an appointment to meet with the stem cell team. Kevin keep thinking positive and know that maybe it doesn't fit into the proper time frame now, but in the end its the right thing to do. We will beat this! We have to be positive! There are so many things left to do. Like seeing our kids become parents, traveling, working and just enjoying those moments that take your breath away. I want more of those moments. Be well and I'll see you on Sat. Hi to Barbie. love, Debbie Douglas
Dearest Dr. Anderson,
I had no idea all this had happened, and I am terribly sorry I was unable to support you in any way I could, when it mattered; I hope it will now. I just wanted to let you know that I believe you to be a wonderful, rare, intelligent, excellent human being, and that I am praying you will be feeling a whole lot better, in the briefest time possible. In a way, your wellbeing directly connects to mine, so in a selfish way, one could say that if you don't live your life fully, neither can I. Therefore, I hope you will recover soon, that this fatigue, pain and confusion will finally leave you alone, and that a few months from now, you'll be able to look back on this with wisdom and relief, instead of sadness and dread. I cannot imagine how scared your family must have been for you, and again I wish there could have been something I could have done to help, but now that you've stepped on the 'patient' side of the board, you may be able to realize how difficult it is to really thank a doctor! How can you express your gratitude for what they chose to do in life? For helping you live yours? Are there adequate words to describe such gratitude? Words fail me, for I have never been a poet... But should you ever have a dragon to slay, just point me in the right direction, and I'll take care of it for you.
May 2009 be your year, Dr. Anderson; may it bring you joy, happiness, well being, relief, for you already have the gratitude of all your patients.
Be well, stay strong
My "heart" aches for you and Barbie in your circumstances. In the trials of life I too find myself wishing for the opportunity to "touch the hem of the cloak of Jesus and all will be well." I think sometimes that all we need is sufficient faith and though that plays a role, we also need the experience. The Bible story of the woman who got healed with just a touch to the cloak also had some history before her miracle. Experience wasn't meant to be easy but I know you well enough that you will pass through this and your faith truly will make you whole. I won't lie, it would be nice if our miracles came just slightly before the pain and discomfort of the trial. Just know that on your darkest days that you have a continuing collective faith of all your friends praying for you. The service you render right now isn't as noticeable as in a doctor's office but your experiences are effecting many. (It is similar to the quite services that a mother renders continually without the slightest hint to the world.) We all love you and our fasting and prayers will be with you yet again this next fast sunday.
Lots of love, faith and prayers,
love to you.
I miss your writing also. Dont make us wait so long hehehe
I may not have what you and Deb have but I have my own different issues so I can relate a bit.
I know it sucks to be me hehe but I guess it could be worse also.
We got the hearts!!!!!!!!!! and I know you me and Debbie are all fighters and will fight till the end (whenever God chooses that to be)
your so not alone :)God is on our side! Look how far we have all gotten so far! He is not gonna let us down now.
Thank you for keeping a blog. It was great to see you the other night. We miss you and your family tons.
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