Notes From Supergirl

My Diary from the Trenches

Miscellaneous Day in the Middle


So I realized as I was counting the day for this post that June 1 will be the two-year mark for me writing this blog, which means that I somehow have miscounted 10 or 11 days in the middle of all of this. Not that it matters at all, but for now, no more counting the days. I was never good at math.

I just wanted to do a quick update while I have a moment. There is not much to report, which is a good thing. I was taken off of the antibiotic that all of the doctors suspected was causing the rash, but I can’t say I have noticed a huge improvement. It’s been about 2 weeks now and the dermatologist said it takes about 30 days for your skin to heal and regenerate, so we’ll see how things look in another two weeks. In coming off of that med, I had to basically triple my immune suppression doses because the antibiotic had inflated them and going off of them means I need more of those meds to maintain the same level of immune suppression I had before. It’s not a big deal, it just means an extra 9 pills per day! I’ve gotten really good at swallowing pills and learned the right way to double them up and not choke when swallowing so that it doesn’t take me 5 minutes to get everything down. In the morning I am now taking 14 pills. So much for tapering down :( But we will get back to tapering down once everything levels out. Today is my 5-month post-transplant point and my doctor was hopeful I would be coming off of some of these things around 6 months. I’m not sure it will happen, but a few less pills would be nice.

Another fun thing that happened is that I got pink eye. I’ve never had it in my life and I got in one eye, then a few days passed and it showed up in the other one. It is most likely allergy related. It looked (one eye still looks) atrocious. But I seriously am just laughing about it now. Brian thinks I should start a list of all of the things I’ve gotten since starting this whole process. Fortunately most of them have been minor.

To follow up on my last blog post which I received quite a few wonderful emails about, first off, thank you. I really appreciate the things that a lot of you shared with me and I really appreciate your support. In a bit of irony, another friend forwarded a story to me about a college student in Boston who was diagnosed with end-stage melanoma. Her treatment had not worked and she was left with little to no options. Her mother found a hospital in Mexico City that used a treatment that included something called the Gersten Diet. The long story short is that the girl is completely cured and she continues on this diet today. Of course I went and researched the diet and it is primarily a raw, vegan, organic diet based on a lot of juicing. What was interesting is they described the cancers that have had great, well-documented success with it and those that it has not worked for. At the very top of the list of the people who should not try this diet are those with AML! I am completely intrigued now as to what their research shows regarding why this diet didn’t work for AML. Is it simply that the leukemic cells do not respond to nutritional changes or is it something about the diet that negatively impacts the cells? My guess is that it is the first concept as most of the research I have done shows that things like green tea, which has been fairly well-tested, showed no changes for patients with AML but did work for other types of leukemia. This brings up another point – when people talk about miracle cures for cancer, they often don’t understand the complexities of a disease. There are multiple forms of leukemia and what works for patients with CML is not at all what works for patients with AML. So to say that a leukemia patient was cured through a certain type of diet, one must understand what kind of leukemia they were dealing with. AML, unfortunately for me, does not seem to respond to a lot of things. It is a very stubborn cancer, thus the reason that so many patients must go through transplant to survive. The immune system must literally be erased because it does not seem to be so fixable. It is also the reason that AML is likely a result of a genetic flaw or some toxic environmental exposure. There doesn’t seem to be any rhyme or reason as to who gets it – yet. One day they will figure it out and I hope I’m around to see it because as much as I hate it, I find it fascinating.

The last thing I want to ask before I go is that everyone keep my good friend JP in their thoughts. She is another young adult patient who has been in remission from liver cancer for just over a year after receiving a transplant. She has been doing beautifully until about a week ago when she came down with pneumonia and is now back in the hospital dealing with possible rejection issues. Regardless of how difficult her situation is right now, she remains incredibly optimistic and cheerful and thus, one of my heroes. She is awesome and I am just keeping all fingers and toes crossed for her and hoping this is just a small blip in the road. Please include her in your prayers.

One Comment to

“Miscellaneous Day in the Middle”

  1. Avatar May 15th, 2012 at 9:16 pm Chip Says:

    Jess -

    You may have already seen this. Everybody that reads this blog might want to consider doing this…