Notes From Supergirl

My Diary from the Trenches

Day 578


All good news from the doctor this morning. My platelets are up into the 90′s, red count normal and white count was down to 3.1, but he said that is perfectly normal. It will fluctuate for a while as my body adjusts. In other good news, he said that if my bloodwork remains stable, as of next Wednesday I will only have to go back once a week for a checkup. Additionally, the central line that I came home with, which is in my shoulder area, will also be taken out in two weeks. That means I can get back to yoga!!!

The doctor was encouraging me to do as much exercise as I am comfortable with and was thrilled that I have the ability to do it inside my home. He said that the risk with going outside is things like leaf mold, construction areas, etc. Well, most of you know that I live in what I would say is a leaf mold infested area, so I will keep my running to the treadmill until the spring. I have my eye on a 5K at the end of April. That is the goal I will be working towards. However, as the doctor stated very eloquently today, this time may be long and boring and make you go stir-crazy, but when you feel good you take risks and those risks are what can damage the progress. This is a long-term investment in my future and I just need to stay healthy and safe. I’m in complete agreement, so I’m not pushing myself to do anything he doesn’t think is a good idea for me.

I also asked lots of questions about how we are tracking the status of all of this; i.e. when/how do we know if this worked? The answer is that one month after the transplant (around the 2nd week of January) I will have a blood test that will identify the percentage of donor cells versus my cells. It takes about 2 weeks for those test results to come back – talk about anxiety!!! They would expect there to be about 70-80% donor cells at that point. We will continue to do these tests each month. On day 100 post-transplant (sometime in March), I will have my first bone marrow biopsy in which they will analyze the cytogenetics again. This will be the critical test in determining if my bad chromosome has been wiped away. Hopefully, I’m well on my way with my running by that point because I don’t know how I will pass the days waiting for that test result to come back! All I know is that if – no, make that WHEN – I find out it’s gone, we are celebrating big time!

So all is good for now. We got a Kinect for Christmas so I’m off to try Dance, Dance Revolution to build up my cardio :)

Day 577


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 …


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.

posted under Part 3 - The Allo-Transplant, The Daily Record | Comments Off

Day 572



When the doctor came into my room this morning, he informed me that my white count was 10,000!!!! He asked me if I wanted to go home today instead of tomorrow and I said “yes!” It’s a little hard to believe I’m actually here. I feel fine but am dealing with some adjustment anxiety. Just nervous about dust and dirt and all of the things that “could” be harmful to my new immune system. I need to settle in and relax. I need to learn to trust my body a little.

But most importantly, I am home sweet home and my kids were completely surprised to see me. Ty couldn’t believe I made it home before Christmas. He was pretty excited. I am definitely feeling the love :)

Unless something comes up I probably won’t post for a couple of days. I want to enjoy this time with my family and rest. I thank all of you for your incredible encouragement and support over the last few weeks. I believe your prayers and positive thoughts played a huge part in getting me home so quickly. I wish everyone the happiest of holidays!!!

Day 571


So let’s start with the good news … there was progress in the bathroom today ;)

Okay, now for the GREAT news … they are planning to send me home on Friday! Ah!!!! I’m honestly afraid to even to talk about it because I don’t want to jinx anything. My doctors walked into my room this morning and said, “well there’s our superstar patient” and I was quite curious what I had done. My white count jumped overnight from 0.2 to 1.9, which is huge. They took me off of all of my IV medications today and started planning for me to leave on Friday. I’m completely elated, but nervous as well. I guess it’s hard to believe it could really happen and I just don’t want to get myself too excited about anything until I’m actually at home with all of my boys and I know it’s real. So please just keep sending those positive vibes – because they’ve obviously been working! – and let’s all keep good thoughts that everything stays on course.

For as emotionally uplifting as today was, it was ironically a hard day physically. When your white count comes up, your red counts tend to slump a little so I needed a red blood transfusion today. It’s nothing traumatic. I just take Tylenol and Benedryl and have a plain old transfusion. But I was having pretty bad throat pain today so it was really hard to eat. I’m also having some bone pain from the neupogen, which is very common. My bone marrow is very active right now and you’re likely to feel that. They say that as the white count comes up higher, the throat pain should diminish rather quickly and since yesterday was my last day of neupogen, that should also feel better soon too. Basically, by Friday I should be in decent shape. I avoided taking pain medication for most of the day, feeling like it would somehow mean that I wasn’t ready to go home on Friday. And then I just realized that was silly. Around six when I couldn’t bear to swallow anything, I finally took the Dilaudid and felt better within 10 minutes. I’m looking at it now like I have one solid day of rest left and I should take advantage of that. My body is doing what it needs to do and if I feel like sleeping all day, that’s okay. I probably won’t get to do that once I get home.

I had a great visit with Kelli today as well as with Katrina from Ulman Fund and Roseann. Lots of exciting stuff to talk about and lots of good things ahead.

I’m off to rest for the evening. Just think, two more days and I might have regular internet access. Bonus.

Day 570


So since it was clearly a point of interest yesterday, I will just get it out of the way today and say that no, I still haven’t gone to the bathroom.  Bloated mess is all I can say.

Moving on, my counts started coming up this morning, wahoo!!! White count came up to 0.2 but platelets jumped from 20,000 to 30,000 all on their own. We are hoping for a nice jump again tomorrow.

Most of the rest of my hair came out today and my dad brought up my new wig which doesn’t look half bad. It certainly blends with me and Brian kind of liked it. That’s all I can ask for. Most importantly, with a little makeup and my own eyebrows and lashes, it doesn’t look like a wig.

I’m not going to stay on for long. I get the pleasure of a little date with my husband tonight. We’re watching the SNL Christmas special and laughing together. Nothing beats that.

Happy Hannukah!

posted under Part 3 - The Allo-Transplant, The Daily Record | Comments Off
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