I know its been a quite a few days sense I've updated but it has been quite the week. A hell of a lot of emotions. Its been exactly 20 days sense I was admitted into Seattle Childrens and it had been far from boring. I was given chemo on day 1,3, and 5 and sense then I have just been recovering. There is a kid next door to me that is constantly screaming but he is like 2 years old and I dont blame him one bit. I hear him yell "I told you no" which I can totally relate to. When the nurse comes in at 4 am and do my vitals I am feeling the same as that kid but I just have to live and go with it because that is just how it is. One of the only things that is keeping my spirits up is the visitors. It gives me a distraction from everything that goes on in a hospital. But I'm not going to lie, somdays it is hard to get up and just go along with everything. Those days I'm usually thinking to myself why the fuck did this happen to me why was I the 1% and contemplate just why. I have noticed that my hair is falling out a little, its weird to think I'll be bald soon... I guess I'll have to wear beanies to maybe look less like a cancer patient.
When I first started treatment I was ready to be sick constantly and pretty much bed bound but it has been the opposite. The chemo just hasn't really affected my outside appearance and I am not constantly sick. The only reason I really know that the chemo is working is I do get tired after walking around the floor a few times and I'm getting blood transfusions every few days or so. So far I have had 9 red blood and platelet transfusion and the counts keep trending down.
I did get some unfortunate news that my youngest sister is not a bone marrow match so my medical team is now looking on the registry. I have a meeting with the bone marrow doctor on Tuesday June 18th and I should know a rough estimate of how many living donors and cord blood is a match. Even though my sister would have been easier she might not have been the best choice just because how special my cancer is and honestly if she was a match we would have probably gone to the registry anyways. I finally have a good estimate of my treatment for the next few months... I have to recover from this chemo so that means I'll be in the hospital for another 3 weeks. I should have about a one week break but I have to stay in one of the houses provided by the hospital in Seattle. My doctor has told me that I am for sure getting second round of chemo which means an additional 5 weeks in the hospital and the I will go strait into conditioning for the transplant which consists of one week of chemo and radiation to clear out my bone marrow. Then the official bone marrow transplant which is called day 0. After my immune system recovers, which will take about 4 weeks (yes that means at least 10 weeks into the hospital), I will be released into another home provided by the hospital and follow up with the Seattle Cancer Care Alliance about 3 times a week until day 100. That will be when I get to go home! I will be getting follow up care at Mary Bridge for blood work a few times a week after that but I will be home which will make it so much better!
I appreciate everyone who has been contacting and visiting me. It makes the hospital stay easier and makes it feel like the days fly by, I mean I've already been here for 20 days... crazy. When I saw how many people went to Pattison's West last Monday I almost didn't believe it, I mean look at everyone in that photo!! Amazing! I was getting snapchats and facetimed by people that were there all night! Honestly it was the highlight of my week (probably the highlight of this entire stay in the hospital) A huge hank you everyone who went, all of my coworkers who volunteered and especially the Pattison's who hosted! I loved working at Pattison's West and can't wait to come back at the end of this!
I will try to be better at updating just some days are so similar its hard to come up with something to say. Until next time..
Hanna
