Update on Janet

Hi all,

TeamJanet transcriber is back for this entry. Although Janet’s been going online frequently (usually on her iPhone) she gets tired pretty easily and she hasn’t had the energy to sit down and type up a long entry. So, here’s the latest:

She said that this round of treatment has been a real “kicker” and she still has a couple to go. She has to keep up the treatments until she’s 100% cleared. She can’t be at 99.9% — it has to be completely gone. The good news for this round is that her neutrophil count is going back up and so the mucositis is gone! To those of you who have asked her what she’s been doing, she said that she’s been doing a lot of singing now that she has her throat back. She described the mucositis as feeling as though she lost something and she’s so excited to have her throat back that she ends up singing a lot. (One of my first memories of Janet is actually about her voice and about her singing, so hearing that she’s gotten it back and is singing makes me smile a lot.) She’s also excited to be able to eat real food again, like carrots with ranch dressing, and not feel like the food is getting stuck in her throat.

Speaking of food, she said one of the highlights is that she got her doctors and nurses to switch her over to the pediatrics menu from the “bland” adult menu — she now gets to eat chicken nuggets and pizza and “all the finer things in life.” She said the food is much more manageable and her only regret in regards to food is that she discovered the pediatrics menu so late in the game.

Some of the things she doesn’t like, she said, are that she has to be very strict about keeping germs away — so she washes her hands a lot with really harsh anti-bacterial agents. Because of the need to keep things so clean, she said her environmentalism has had to take a bit of a backseat. Although most of her food (if she doesn’t eat it) is compostable, the hospital goes through a lot of masks and paper products which can’t be reused because of the obvious concerns about germs.

Other good news that she mentioned earlier in this blog is that the results on her liver came back with the best possible outcome. What happened, she explained, was that while, upon her diagnosis about half a year ago, they did manage to catch her cancer quickly, it was not before micro-tumor cells had started to develop in her liver. With the chemo treatments they went away, but between dealing with the cancer cells, and then the chemo, her liver was going a little out of control trying to keep up. When they did the fine needle aspiration on the nodules (which she said they did twice with ultrasound guidance) they found traces of white blood cells. The white blood cells were simply trying to protect her and her liver, and trying to patch up the damage that all of the “warfare” going on with the chemo treatments had caused. She’s doing well now, and the pain is mostly gone.

She also spoke for a bit about her reasons for wanting to keep this blog. She said that it isn’t necessarily so that other people can understand, but so that in the future, if someone else goes through a similar battle with cancer or other diseases, she has something to read back on and remember what it was like. She said that when she was first diagnosed the first two images she had in her mind of leukemia were of the Mandy Moore movie (“A Walk to Remember”) and of Hiroshima and Nagasaki — and those were the only ways she had of thinking about and relating to leukemia.

To further expand upon what she said in her last entry, she said that while everyone has the capacity to appreciate and really love life, with cancer she has developed an unquenchable thirst for living. Phrases such as “live in the moment” and the thought of how many minutes there are in a day resonate very, very strongly now. She said sentiments such as “beauty is only skin deep” and “what’s on the inside is what counts” also ring that much truer to her now — it’s hard to feel like to same person you were but then to look completely different. While she understands the sentiment of “bald is beautiful” and that the baldness can be liberating in a way, she said she likes her wig and enjoys putting on a little bit of make-up to be able to blend in and feel feminine. At the same time, she also feels comfortable without it and sometimes just throws on a hat to wear around the house. Self-image issues are hard, though, because it’s difficult to recognize and connect what is going on inside with what is in the mirror.

She said she’s been thinking about everyone a lot and that she doesn’t feel very active in terms of putting herself forth on the issue of leukemia, but she has been very active behind the scenes. She said she feels sometimes as though she’s not inhabiting the same world as everyone else — that she’s in a kind of transition space and is waiting to go back to the “real world.” She said she knows she’s a part of it, but at a kind of remove, in a special group — and special doesn’t feel that nice. She looks forward to going back and blending in and continuing her work with helpingjanet.com in order to get the organization up to 15,000 newly registered bone marrow donors.

That’s it for the moment — thank you all for your support and for reading!

My best,
Shelby