Day +930: I hope you never fear those mountains in the distance…

“Never settle for the path of least resistance
Livin’ might mean takin’ chances but they’re worth takin’,
Lovin’ might be a mistake but it’s worth makin’,
Don’t let some hell bent heart leave you bitter,
When you come close to sellin’ out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.
I hope you dance….I hope you dance.”

6/17/2013: We’ve gotten to know many fellow travelers on our journey these past few years. Each of their setbacks and victories feels oddly personal, and it’s disquieting when someone drops off the map for a time. Thus, I felt so deeply touched and uplifted when I received the following email last week that I asked the sender for permission to reprint it here anonymously. She kindly acquiesced.

Words from a Fellow Traveler

It’s been a while since I’ve updated, and that’s really a good thing. I have been feeling great the past six months. It is now 402 days since the transplant — over a year! This time last year (2012) I wasn’t even out of the hospital yet and feeling physically pretty bad. I feel so grateful and truly blessed. The love, support and prayers from all of you have gotten me (us) through this. And every day I thank God for my daughter/donor. I still have some issues with GVHD which causes dry eyes, severe dry mouth and occasional breakout rashes. All of that is expected and treatable. Eating is really a challenge, because my taste buds don’t work well, and I seem to have lost the ability to feel hungry. I literally have to remind myself to eat, because I need the nutrition. I feel plenty thirsty all the time, but not hungry. I am constantly popping sour lemon drops in my mouth, because they taste good and keep the saliva flowing. I think I have become an addict. All and all, life is GOOD.

A couple weeks ago I had my one-year checkup. A lot of blood was drawn (15 vials), bone marrow biopsy (ouch), and the first five childhood immunization shots were given. The nurse said I would feel “punky” for a couple days after the shots. I don’t know what punky means, but I definitely felt out of sorts and sore for a couple days. I feel sorry for little babies who get all those shots at once. Next month I will get more immunizations. Even though I had a lot of those childhood diseases, I have to be immunized again. And these days there are more shots than ever before.

The day of the checkup, my husband and I went up to the fifth floor to the transplant unit that had been my home for two months. That was our first time back. As we slowly walked the hallway and discreetly looked into the patients’ rooms, we marveled at how far I have come. Everything looked oddly smaller than I remember. When I used to do my laps in that circular hallway, lugging my giant IV pole, it seemed wider and longer. We walked quietly and said a prayer for all the patients lying in their beds, just starting on their journey. We saw familiar faces and hugs were given out. The staff recognized my husband before they recognized me. I looked very different last year, as you can imagine. They were grateful we came for a visit. They see patients at their sickest and don’t always see them later on. It was in a way therapeutic for us, and everyone said I looked great. As we left the unit I kept thinking, did I really do this?? We saw my doctor also that day, and he basically gave us a pep talk and told me to keep up the good work. He smiled a lot and gave us hugs. Everyone at Hopkins has been super.

It was a long tense ten days waiting for the results of all those tests. Yesterday my doctor e-mailed the results. After all that waiting I was suddenly afraid to look myself, so my husband read the e-mail to me. The first sentence – in capital letters was – NO LEUKEMIA. It took us a few minutes to gather our composure enough to read the rest. We were so relieved. Everything looks very stable. I am still a little anemic, meaning the red blood cells are on the low side. The doctor feels that this will eventually work itself out. And I have iron overload, which is pretty much a common occurrence in transplant patients because of having to receive so many blood transfusions over a period of several weeks at the beginning. They will start to correct this at the two-year mark by either medication or literally having me “give blood” on a regular basis for a while. That blood will have to be thrown away and not given to anyone else.

Fatigue is still a problem at times for me because of the anemia, but my energy level has increased a lot. I am doing just about anything I want, but I pace myself. I have no restrictions now, except common sense ones like: STAY OUT OF THE SUN; don’t be around sick people; wash your hands and use hand sanitizer a lot; no salad bars or buffets, etc. I only take two pills a day now, a wide spectrum antibiotic and a pill to keep me from getting shingles. The doctor said I’ll be on them at least a couple more years. A couple more years? It’s nice to be talking about a couple more years — and beyond.

My hair has completely grown back — gray of course, and thick — but it’s not MY hair. It’s chemo fried, coarse feeling and sticks straight up. I can’t do anything with it. I’ve used all kinds of products to try and tame it, but to no avail. I expected the gray hair, but not THIS. My daughter says I should just go with the flow, use a lot of gel and create a “spiked” look. I’m sorry, but that’s just not me or at least the me I’ve come to know all these years. So, while I try to come to terms with this, I still wear a wig and try to figure out where to go from here. I think a trip to my hair stylist is in order soon. It’s been a long time.

I’ve always said that this whole process has been difficult physically. But I think mentally it’s just as hard, maybe harder. To keep your mind focused constantly like a laser beam on getting past all the real hard stuff, and to concentrate on getting well every minute of every day is daunting. And when things get too tough mentally, my family is there to help chase those dark thoughts and fears away. Meanwhile, summer art classes are underway again, and I’ve got two paintings going at the same time.

Remember, enjoy life and don’t sweat the small stuff. Most things in life are small stuff. Take personal time for yourselves doing what you love. Everyone has heard those old sayings over and over, but they are all so true. And the truest one of all — when you’ve got your health, you’ve got everything.

6 Comments:

  1. Thanks for the wonderful update of your “Fellow Traveler”. It is always good to hear the happy endings!love you both.

  2. DANCEEEEEEEEEEEEEEEE

  3. Wow I actually know this song!!!! I never know names of songs and who sings them!!!

  4. I hope you dance, by Leann Wommack. I love this song!

  5. So well written!

  6. Tomorrow, I will have my one-year bone marrow biopsy. I underwent an allo transplant (10/10 match with sister) on July 3 last year. I can certainly identify with this writer’s point of view. Waiting for the results, imagining the outcomes and “what-ifs?” certainly occupy my thoughts daily. In the meantime, I am lucky to have minimal GVHD and have had my full energy back for many months. We all have our stories, and as survivors, we all have a new appreciation for the joys and blessings in our lives. Our disease looms ever present, and it takes all our efforts to keep our fears contained so that we can truly appreciate every day we have been given to “dance.” I always say, “So far…so far.” After my transplant, I made a conscious decison to live in the NOW. Every day I choose to do only what I WANT to do. I never want to be like the lady on the Titanic who said, “I should have had the cheesecake!” True story…

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