Notes From Supergirl

My Diary from the Trenches

Day 577

December27

I just wanted to give a little update since I’ve been home. Some of you may have heard about my Christmas night explosion, so I wanted to fill in the details and let you know I’m okay. Christmas Day was very nice. I was definitely fatigued and low on energy but so happy I could be here with the kids and many of my extended family for the day. Everyone pitched in and helped out so there was very little for to do other than relax. Everything was okay until around dinner time. I’ve been having a really hard time eating, partially from some residual nausea and probably more so from the fact that my stomach has shrunk so much and my diet was so limited. As usual, I ended up losing a decent amount of weight and muscle, which I am very eager to put back on, so I’m trying not to skimp on food. I ate lightly during the day and then tried to eat better at dinner. Being that I’m following this mostly vegetarian/pescetarian (eating fish but no meat) diet, I opted to have shrimp for dinner for my protein. Apparently that was not a good idea because a few short hours later I began vomiting and continued to do so all the way through the morning. I was scheduled for a routine check at the hospital anyways, as well as a visit with doctor. He felt strongly that the shellfish was the culprit. Shellfish can carry large amounts of bacteria, no matter how clean or well-cooked they are. I was a little weary of eating them but more concerned about getting the nutrients in my body. Ironically we had been discussing the idea of shellfish allergies at dinner, particularly if that could happen after a transplant! The doctor did not think this was going to be a long-term issue, but suggested I wait a while longer until trying them again. After the night I experienced, I may wait well over a year (if ever!) before I try shrimp again. Fortunately, regular fish is still fine, so long as it is well-cooked.

The good news is that my counts were all great yesterday morning, despite the vomiting. My white count has come down to a NORMAL 6.2 and platelets are working their way up to 87,000. Red count is normal and even my electrolytes (magnesium, phosphate, etc) were normal which is pretty phenomenal considering how sick I got. I’m feeling better today and will be working on ginger ale and bland foods to keep hydrated and try to restore some energy. I go back again for a check tomorrow morning.

A couple of people have asked about when we know that the transplant worked and there isn’t any easy answer to that. I believe that I have a blood test in a couple of weeks that will compare the percentage of donor cells to my own cells in my immune system. The goal will be to have the donor cells take over 100% (I think) but most importantly that it erases my bad chromosome. I will have a bone marrow biopsy in February that will look at that. For now, everything looks good and I will continue to do the best I can to meditate, visualize, rest, exercise, eat right and stay healthy – but most importantly – just stay optimistic that this magical bone marrow does the trick.

I hope everyone had a wonderful holiday!

Oh, and before I go, I’ll do my gratitude list for Christmas …

1. BEING HOME!!!!

2. Seeing my family – Kids, Brian, Dad, Aunt Martha, Uncle Bob, Sarah, Joel, Steph

3. Playing Muppet Monopoly with Ty

4. All of my new vegetarian cookbooks, particularly Thrive which I will be talking more about later!

5. More new hats, cause a bald-headed girl can never have too many cute hats :)

6. Godiva truffles, which I haven’t stopped consuming despite the vomiting

7. Laying in bed, cuddling and watching TV with the kids

8. Lots of clothes from Athleta to keep me warm when I start running again

9. Some very heartfelt gifts from some amazing friends (you know who you are)

10. All of my great gifts from jewelry to tea cups to pots & pans – I felt particularly spoiled this year.

11. But most importantly, being here – and alive – and having hope – that I will many more Christmases to come!

12. And I’m also incredible grateful to be home with regular internet access! I finally feel connected to the world again.

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