Expert Opinions, or My New Treatment Plan.

Slacker-town, USA: population, me. Sorry for the long wait between postings. Things have been... just, crazy. First with the Mayo number, then trying to figure out the best way to deal with it.... its just been wild lately. So, I know I can't make up for making you wait so long, but maybe giving you all the dirty deets will help.

After we found out the Mayo number was 10, a lot of things happened. I went for chemo last Thursday, and I was even more neutropenic than I had been the past round, when I posted about it. In case you don't remember, or aren't into re-reading every blog I've ever written, (I mean, I know, I'm brilliant, but that might be kinda boring...) that ANC (remember, that stands for allover neutrophil count, or the amount of white blood cells I have to fight off disease,) was 560. This time, it was 240. Pretty scary stuff. My hemoglobin was low too, around 9. They couldn't give me chemo again, and delayed it until this past Monday. They scheduled another 3 days of neupogen and told me when and if I get more chemo, I will get neupogen every time, since my body has just not been able to recover. The best part? I'm going back to work for at least two weeks, so I get to self administer the neupogen. I'm not actually going to do that, though. My mother in law and Jim are going to give the shots. They also scheduled me for a blood transfusion the following day, because of the low hemoglobin.

It.
Was.
Crazy!!!
I've never had a transfusion before, and I'm not sure if many of my readers have, but it is quite the experience. First thing they do is give you this bracelet for "type and cross." Like three nurses have to sign off on it, and its all very serious. When they gave me the blood, both Jim and Jack were there. At the infusion center, most patients sit in recliners in groups of four in an open air suite, but they have two private rooms with beds, so they put me in the princess suite. Kim was my nurse, and she is really comforting and amazing and knows me pretty well. Since the whole thing grossed me out so bad, she covered the blood with paper so I couldn't even see the bag. They gave me a shit ton of Benadryl in my IV, which, along with the Ativan I took, made me like "wheeeeeeeee," then, "zzzzzzzz." I actually went home and slept like 6 more hours, too. It was the first time since before I had my son that I just went to bed. I just came home and was like, byeeeee Jim, see ya, I'm out. It was lovely. I didn't feel better right away, but I have noticed in the days following that I am less short of breath and have a bit more energy. I'm experiencing some pretty intense physical exhaustion, though. Every round kicks my ass a little bit more.

Speaking of rounds.....

We met with Dr. Sehbai yesterday to discuss the therapy I will need in light of this Mayo number. When we spoke on Thursday, Dr. Sehbai suggested he reach out via email to some of the world's experts in treating GTD (gestational trophoblastic disease, or the class of disease that my cancer belongs to.) So, we got the information from them and the consensus is 3 more rounds.

Arrrrrrrgggggghhhhh.

I thought I was done, so it is frustrating. On top of that, it seems that this setback has caused me to finally start to feel some of the things I was eventually going to have to- sadness, anger, and the "why me," type thinking. Its healthy, and normal, but hard. I have been feeling totally discouraged. It doesn't hurt that when I "was cured," that a lot of my readers/supporters kind of disappeared. My readership has slowed down, and even my Facebook support seems to have taken a nosedive. I feel like I was getting a lot of support from blogging, and feedback from it, and now that this is gone, I am feeling a bit lost. I gotta say, it wasn't my idea to blog about this. I've been feeling discouraged because of it, and when I mentioned it to Clare, the therapist I am seeing, she said that it may be beneficial for me to write about it and let people know. I know my readers are the best people ever, and they wouldn't make me feel bad if they knew. And honesty is the best policy. And stuff. Still, I feel a bit vulnerable, and hesitant to post like this and ask for help. You see, I'm not the best at that. So be gentle on me. I promise not to wait between posting next time.