Hey everyone! I haven't posted much because there hasn't been much to say. My kidneys are doing better, so I stopped my IVs after two weeks. I'm still not able to eat very well. Most foods are very disgusting and my dry mouth doesn't help much. I live on bananas, pastina, applesauce and chicken soup. I recently added V-8 juice. Doesn't it all sound yummy? I have lost weight (yah!), but this shit sucks. I make dinner and everything smells so good and then I taste it...gross!!! I made tacos the other night, which I love, so I tasted it and I almost barfed. My doctor doesn't seem too concerned yet. He was telling us that there are people who try to eat and then throw up, so he's pretty happy that I keep everything down.
The best news is that I'm getting the lines out of my chest next week, as long as everything stays stable. I will finally be able to wear a bra again!! I also only have to see a doctor every 2 weeks now. Boston the beginning of the month and Yale the middle of the month. Hopefully they will work well together and share all the information. I'm a little skeptical at this point. Time will tell.
I don't think I told you all that one of the side effects of one of my chemos is that your skin can turn black where you sweat. Needless to say, under my arms, boobs, elbows and my nether region have all turned a lovely shade of black and then it all peels. It almost looks like a bad sunburn and then some! I also have some brown skin discoloration marks on my face and bald head. Everything is drooping more than usual, because of the weight lose and I think my muscles have crapped out a little. I am one MFing ravishing beauty these days.
I am feeling better and my energy is slowly coming back. My 100 days is up on August 3rd, and I'll have another bone marrow biopsy around then. That will tell us if this transplant got rid of the MDS. Word of warning, I'm going to be a bitch while I wait for those results. I guess that's it for now. If anything else pops up, I'll share.
Peace out Peeps!
Thursday, June 28, 2018
Saturday, June 2, 2018
update...finally
Hi everyone, I apologize for not posting sooner, but I was going through some emotional shit and I was busy being angry for getting sick again. I'm feeling better now. I still have angry and afraid moments, but it's not all the time.
Anyway, I was released from the hospital the day before Mother's Day, which I was happy about even though we couldn't do anything. Just nice to be home. I've relearned how to flush the three lines coming out of my chest and my dining room table is covered with medical stuff. I take many pills throughout the day and I'm having a very difficult time eating. Everything tastes disgusting and I force myself until I feel like barfing. That usually happens after 4 or 5 bites. This shit isn't over by any stretch of the imagination. Last Friday when I went to Boston, I was almost admitted, because my kidneys were not good. My doctor decided to lower my anti-rejection drug and have me give myself an IV every day for 2 weeks (hydration). So I had to learn to do that too! I'm getting tired of this whole thing! I'm also on a hundred day semi-quarantine. The 100 days began the day after transplant. I'm not allowed to be around crowds and I have to wear a mask if I go places. I'm on a special diet, but that doesn't matter, because I never want to eat. I also need help from Lee to cover my lines when I want to shower, which is a pain in the ass. I spend my whole day doing medical stuff and watching TV. Once a week I have a visiting nurse to change my dressing. It's going to be a really long 2 more months. I don't sleep well at night so I'm always kind of tired.
On a brighter side, I am getting stronger. I can make myself food and take care of the dogs during the day. I'm not quite ready to make dinner yet, maybe that will happen next week. We go to Boston at least once a week and that usually takes a day to recover. I will try to be better at blogging! I know people were wondering how I'm doing. It's going to be a long recovery with bumps in the road, I just need to keep my spirits up.
Peace out Peeps
Anyway, I was released from the hospital the day before Mother's Day, which I was happy about even though we couldn't do anything. Just nice to be home. I've relearned how to flush the three lines coming out of my chest and my dining room table is covered with medical stuff. I take many pills throughout the day and I'm having a very difficult time eating. Everything tastes disgusting and I force myself until I feel like barfing. That usually happens after 4 or 5 bites. This shit isn't over by any stretch of the imagination. Last Friday when I went to Boston, I was almost admitted, because my kidneys were not good. My doctor decided to lower my anti-rejection drug and have me give myself an IV every day for 2 weeks (hydration). So I had to learn to do that too! I'm getting tired of this whole thing! I'm also on a hundred day semi-quarantine. The 100 days began the day after transplant. I'm not allowed to be around crowds and I have to wear a mask if I go places. I'm on a special diet, but that doesn't matter, because I never want to eat. I also need help from Lee to cover my lines when I want to shower, which is a pain in the ass. I spend my whole day doing medical stuff and watching TV. Once a week I have a visiting nurse to change my dressing. It's going to be a really long 2 more months. I don't sleep well at night so I'm always kind of tired.
On a brighter side, I am getting stronger. I can make myself food and take care of the dogs during the day. I'm not quite ready to make dinner yet, maybe that will happen next week. We go to Boston at least once a week and that usually takes a day to recover. I will try to be better at blogging! I know people were wondering how I'm doing. It's going to be a long recovery with bumps in the road, I just need to keep my spirits up.
Peace out Peeps
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