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Navigating the Middle

through adolescents, menopause, aging parents & other flying debris

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struggle

Day +78: Because You’ve Asked

White Blood Count – Normal Range
Platelet Count – Climbing
Bone Marrow – Normal
Stem Cell Engraftment – 100% Donor
PET Scan – No Evidence of Disease (NED)/no uptake

Allow me to translate. My post-transplant progress is going well. “Well” as in – in good health; free or recovered from illness. On Day 78 of 100 (aka the early recovery phase), I am still required to visit the transplant center regularly, but not with the frequency of 2, 3, or 4 times weekly. For the second time since being released from the hospital over two months ago, I will not have to see my doctor or nurse for an entire week. THANK GOD! And as my immune system matures and improves, the amount of time between visits should continue to lengthen. I look forward to the day when I only visit my doctor annually for a routine follow-up.

I’ve also been able to drop some of the drugs from my a.m. and p.m. lineup. Instead of an “all time high of 16 pills/day,” I’m down to 11. Fewer drugs mean, fewer side-effects. Watch any drug-marketing spot on TV, and you’ll hear the disclaimer of all the side effects the drug can cause. It makes you second guess whether you’re better off with the illness.

And then there’s also the weird science behind assigning which drugs can be taken and which drugs should be avoided. For example, I recall having a conversation with my nurse about the toxins in nail polish v. the toxicity of the many hospital drugs I was already receiving intravenously. Then I was told that if I got a headache, I could not take ibuprofen or Tylenol, but could take Oxicodone. But what shocked me most was my nurse explained that while my husband and I are not allowed to kiss, we are allowed to engage in adult activities, as long as we use condoms. WHAAAAAAT???

Yes, each day is an adventure! I might not have called it that BT (before transplant), but I realize it now. And that 100-day early recovery bubble that I’m in, is merely a guideline-  one that my doctor recommends I follow until after flu season. (…in MARCH!) When I questioned Dr. H. about her strictness, she was clear. “My patients who listen to me, don’t get sick.”

So for now, it looks like I will be continuing my hand washing-, crowd avoiding-, mask wearing-, shotgun-riding vigil. I’m wearing nail polish. I’m not taking Oxicodone which makes me sick. That’s all I’m saying, except this…

Enjoy your weekend. I’ll try to post more frequently now that I have more free time.

Today is a Day Forward

My sister Stephanie got it right when she mused, “When you’ve undergone a major surgery or something like you’ve just experienced, it’s good to remember that recovery is like taking two steps forward and one step back.”

Before hearing her words, I hadn’t stopped to consider that I’d feel okay one day, and kinda lousy, tired or both the next. The passage to recovery is a suffocating struggle against waters so deep, at times my feet don’t touch the bottom; at other times, I’m buoyed by the current. I can imagine where I’d like to surface, but the way up is unclear.

At times like this, it’s important that I talk to myself,
to remind myself of all the progress I’ve made in just over two weeks of being at home. So here goes:

  1. I’m eating so much better now that I can choose what I eat and it isn’t being prepared in a prison galley.
  2. It no longer hurts to swallow pills, which is a good thing. I usually have to swallow at least 12 pills/day.
  3. I can walk around without shoes, a real joy for me since I love being barefoot. (There was no way I’d allow my skin to come in contact with a hospital room floor.)
  4. I have better cable at home. Even HGTV gets old when you don’t want to Love It or List It, Flip It, or Fixit Up.
  5. My world has expanded from a mere hospital room with a bathroom. I have an entire house to move about. Although out of safety precautions, I choose to stay out of the boys’ bedrooms.
  6. No one wakes me in the middle of the night…unless it’s my bladder.
  7. My hair has finally stopped falling out. It hasn’t started to grow back yet, but I don’t have to worry about going to sleep with a regular pillow and waking up to a pillow case disguised as Chewbacca.

chewiepillowBut the very best part of being home is spending my days and nights with family. Because even the worse day at home is better than an afternoon on the BMT Unit.

 

 

 

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