Tuesday, September 23, 2014

One step at a time (day +31)

Minute by minute...
That's how I've survived these past 6 weeks in patient. Minute by minute, day by day. You kind of have to...because for me at least, when I look at the long term of things or possibilities, it becomes so overwhelming. Transplant has NOT been easy in any way. I haven't blogged for a while, because most days I've felt weak and there's so much to catch up on...that I loose total motivation and it's really overwhelming to try and explain everything that has happened. (thank goodness for moms caringbridge updates-link on side). There's been fantastic days, not so fantastic days and quite a few bumps a long the way.

It's day +31, can you believe it?? 31 days (1 month) since I received my life saving marrow and my new shot at life. So amazing...just the thought of it. The few weeks after were very hard; vomiting, nausea, fatigue, pain everywhere, mouth sores, fevers, no energy...the list goes on. But I got through it, and the docs were so pleased. Thank goodness for my pain button...holy cow that thing was a life saver. Although those "transplant normals" were not easy, I had prepared myself for worse...so I was grateful it wasn't how I had expected.

I was on Neupogen shots for a few weeks after I got my cells to stimulate cell growth and help with engraftment. MOST PAINFUL SHOT OF MY LIFE!! But boy did it kick in those cells. When your cells start to engraft, body aches are very common. The shots (along with steroids) put my body into overdrive to help get the cells going, and my body hurt so bad. I could barely walk, and I got fevers which sucked. But after having three consecutive days of an ANC over 500 they consider you "engrafted". On September 7, I ENGRAFED!! This is a huge milestone in transplant, because my body is finally trying to start to make my own cells.
I've received countless platelet transfusions and a few blood transfusions.

So, I hit a few amazing milestones and I was proud, even though I still felt crappy. My doctors were starting to talk about going home.
 I worked so hard to try to start to eat again, get up and walk, and switch my meds from iv to oral. But, then another bump came along. To say I hadn't gotten my hopes up for getting out in the two weeks they gave me, I would be lying. I should have known it wasn't gonna be that easy.
About a week ago I started getting stabbing pains in my stomach, right then I knew I wasn't getting out on the date they had planned. I was disappointed and discouraged, I had worked so hard to do everything I could to get out. I guess it's heavenly fathers way of saying, "don't give up...push a little harder". I'm now not eating again because of the severe stomach pain and the iv pole is filling back up with meds. I have a few infections going on in my stomach...so right now they're doing antibiotics and just trying to keep my pain under control.
Honestly, I'm exhausted, worn out, and just want to get the heck outta here. But I know this is just a bump, and I'll get through it. Day by day, minute by minute.
Hair Update: Well I'm bald. It's the weirdest thing. I just find my self playing with my head. It's actually quite funny, my family has made some jokes about it and we've shared some good laughs over it. (although they think I look like a baby haha) When it started coming out I was a little more emotional that I though I would be. It just came out all over the place and literally lifted off my head. SO weird, right? We finally just ended up shaving it. My best friend, Madi held my hand, along with my sweet nurse Aida as my daddy shaved. It's different, but one thing I know for sure is that Showers ROCK..LOL, and it's been fun to wear beanies. 
Bald Is Beautiful
I have had the most incredible support from everyone. My parents, family, friends, community, everyone. I've received countless texts, emails, gifts, Pink days, words of encouragement, friend visits...and I've read it and enjoyed it all even though I may not reply or act like it. To say I'm beyond grateful would be a complete understatement. Thank you everyone. I wanted to send a shout out to an amazing organization called PeppedUp (click on link to check them out). They found out I loved to blog, so they surprised me with my own laptop, which I'm using right now! Can you say AMAZING?? Thank you so much PeppedUp!! And I want my mom and dad to know how much I love and appreciate both of them. My mom has been here everyday comforting me, rubbing my back, holding my hand and doing everything she can to help me. She's super women, people. My dad has also been here everyday, to give me a kiss and help me get motivated. I feel closer to both of them everyday, and I'm the luckiest girl to have such loving and caring parents.
Although I've had a few bumps, I'll get there. However long it takes, there's no way I'm giving up. There's so much to be grateful for and I WILL kick this!