Day +100: Give me love…give me life…give me hope…help me cope…

Today is the “magical” day 100. Actually, it’s a rather arbitrary day but in BMT circles day 100 is considered to be a significant milestone. In anticipation, I figured we’d be jumping up and down celebrating like the elementary school kids do on their day 100 but really it was just another day – we grow blasé so quickly! In fact, although I AM celebrating my gift of new life, I’m also disappointed that I’m not feeling very well today – tired and nauseated are the operative words.

Over the past several weeks, I’ve also been itchy at night, especially my back. It has grown gradually worse until I’ve needed Benadryl the past couple of nights to sleep. There’s no sign of any rash, irritation or extra dryness, just another mystery. My hematologist (who I saw today) said he’s seen patients develop allergies to Bactrim after long-term use even with no prior problems and suggested that I skip it for a couple of nights to see if it makes a difference. I also have swelling/puffiness under my eyes that started last week. The great news is that I’ve had no fevers or other signs of infection. I’m still using eye drops many times per day as recommended by the eye doctor, but rarely manage 10 times!

Today’s CBC was pretty good, taking into consideration last week’s Vidaza treatments. The chemo often causes temporary drops in platelets and WBC. The transplant doctor is not worried as long as ANC is above 500 and platelets are above 50. At Mom’s excellent suggestion, I’m including the normal range for each count in parentheses after my counts – anything in that range is great:

WBC: 3700 (norm 4500-10500)
Granulocytes (~ANC): 2700 (norm 1400-6500)
Platelets: 185 (norm 150-450)
RBC: 3.65 (norm 4.00-6.00)
HGB (hemoglobin): 12.2 (norm 11.0-18.0)
HCT (hematocrit): 37.7 (norm 35.0-60.0)

My hair is just starting to come back (unfortunately, mostly on my chin)!

I saw the gastroenterologist again yesterday for a two-week followup. Overall, the Carafate seems to have helped with the stomach acid so he’s having me continue that. My tongue is very coated but does not look like thrush, and I’m having no problem or pain swallowing and no mouth sores. However, he said to use the swish and spit Nystatin just in case.

The nausea also seemed better (no interim queasiness as long as I took two Ativan daily) until this past Monday when it took a turn for the worse again, especially mornings, and for the past two days, I’ve continued to feel queasy throughout the day. My taste buds have grown steadily worse for the past month. In January, food was starting to taste normal again but now EVERYTHING tastes varying degrees of bad, even distilled water! In addition, I have a sour taste in my mouth most of the time. I continue to try all kinds of food from spicy to greasy to bland to sweet in hopes that something will be better. So far, the least bad are sweets, mints, and escargot. I drink chamomile or mint teas a lot. The doctor said no restrictions – just eat anything that I can and take multivitamins as a supplement. He believes the problems will resolve themselves over time. He thinks the antibiotic, antiviral, Vidaza, and general trauma to my system are all contributing to the nausea and taste problems. He sees no value in another endoscopy at this time. I’m glad he’s conservative about invasive procedures. I’ll see him again in a month.

Guess that about sums up everything at the moment. I think I’m doing great medically speaking regarding my transplant even if I sound disappointed that I’m not feeling better today. It’s important to remember the mantra, “BMT is a marathon, not a sprint.” Happy Day 100 and many thanks again to my anonymous life-saving donor, as well as my caregivers, family and friends.

Day +91 tagline:
Happiness is a Warm Gun, The Beatles (IDed by AKA Ruby)

p.s. We got a new chair that makes into a single bed to add to our guest capabilities. Maya has already made it her own – see photo in gallery.

8 Comments:

  1. Maybe it’s time for us to start praying for you to find food that tastes good. 🙂 Keep on keeping on!

  2. I can understand why Maya staked out that new chair. It looks comfy.
    Your counts look great. Now if we can find the right combination of foods for you. Yuck! Hopefully this is almost over. Just think of it as the first trimester (as in a pregnancy). You have now just started the second trimester so you should be about done with the nausea. At least lets hope so. Love you.

  3. I forgot. What ever happened with the car? Did a miss a post somewhere that gave the final cost of getting the car fixed?

  4. Cathy,

    Sorry I forgot to post the car results. All bids were over so no one won the showcase. The final total was $3458.05.

    Better luck next time (but please not with our car).

    Karen

  5. Happy Day 100! Hang in there. Mike will just have to bring home lots of carry out escargot. Yum Yum.
    I think you are doing great. Stay positive.
    I’ll pray. And we will find your tastebuds.
    You two take care. Sherry

  6. Karen,

    So glad to hear that you have reached the 100 day mark, I know how important this milestone is. Sounds like your stomach could do some improving, with all the sickness around right now you might not even be any different if you weren’t recovering from a Transplant. Flu is everywhere here. Stay well and love hearing about your progress.

    Linda

  7. I just checked out your tag-line on google. I am surprised no one got it. So I read David the tag-line and he got it. Artist-George Harrison. Song-Give Me Love. He is so smart! 🙂

  8. Sorry this is belated!! But happy 100 day post transplant!!!

    Glad you are feeling better!

    And hope all those other issues get better soon!

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