The big day, Day 100!

1:04 PM Dressy_Daisy 0 Comments

Hello everyone!
yes, can you believe it is day 100 already? I am so excited that everything has been so good so far and I pray it will stay that way. Many have been asking how I have been doing, I know I haven't wrote a blog in a while because my labs were up and down and I wanted to wait until I hit today. So much has happened also, we moved from Portland to Vancouver into a house right after transplant. So that kept me busy for some time while I was unpacking and decorating. We also got a chihuahua puppy and names him louie, he's the sweetest. The commute is much easier for my mom since she lives in Vancouver and she has been my caregiver while Yan is at work. Yans work office also moved to Vancouver so it all worked out for the best, thank God. I won't be required to have a caregiver 24-7 starting today so I can finally be on my own! I can drive now, eat whatever I want, and start taking vitamins I wasn't allowed to before. They say severe GVHD (Graf vs Host disease) usually occurs in the first 30-60 days. Thank God I passed that, but I am not in the clear yet. I can still develop acute GVHD from now to the rest of my life I believe? They said I can't ever get sunburnt and have to wear spf 30 for the rest of my life. I love the sun and I love to tan so that sucks, but the bright side is that I will help prevent skin cancer since many people don't realize the damage a little sun can do. We really need a vacation and doctors said we can go as soon as 6 months after transplant, but the further away the more safe it is for me.
Since I've been home from transplant I have been going back to OHSU 2 times a week. I would be there for about 2.5-6 hours at a time depending what I needed done. Every time I would need magnesium because the cyclosporin made it drop. I would also still need a unit of blood every week. Every time I met the doctors my responses were the same: I feel great, no nausea, vomiting, diarrhea, constipation, fatigue or weakness. These are the side affects people have after transplant. Thank God I did not have any. The power of prayer. So thank you to those who prayed for me. Doctors always said I was doing great.
I had a third bone marrow biopsy done at the end of October. It was the most painful one so far. Of course Yanik was there with me holding my hand while I almost broke his lol. I was sore for a few days but I am back to normal now. The results showed that my body is slowly producing cells and 90% of them are donor cells (my brothers) and 10% mine and that is great but they want more than 90 so they might change up some of my meds or taper me off some faster. I have been on a lot of antibiotics and that slowed the process a little. Also my white blood kept going up and down and so I would get the neupogen shot. Last time I got it the same time as I got the pneumonia vaccine and I seriously thought I was gonna have a heart attack and die in my sleep lol. Well its not really funny, but when I think about it I know thats probably very unlikely. Just with every heart beat I felt pain as if it was beating so hard and I couldn't move my left arm and shoulder for 2 days, and the other shot made all my bones hurt especially my hips. Lets just say I needed to take strong pain meds to sleep.
Aside from that I didn't have too much pain until this week. I had my line in my chest removed! So excited I wont have those weird eyes looking at it in public haha. Well also I can take a bath now. For the last year I have been taking showers anyways. And I take them sitting down since it saves energy which I don't always have. The removal of the port didn't take 20 min like usual, no it took a whole hour. Since Im young and my body heals fast, it built a lot of tissue around the port so the doctor couldn't pull it out. Lots of pulling and tugging left some bruising and a very tender chest. Thank God they got it out and now it is just healing. The hole is smaller than dime size so I'm hoping for very minimal scarring.
I am still taking most of the same meds but will be tapering down eventually. Some of the size effects are annoying and make me feel self-conscious at times, but I have so much more to be thankful for, like my life. I transition to Kaiser this week so I will be going there now instead and only once a week. Any treatments I will need will have to be done through a needle in the arm again. Can't say I've missed it.. I actually have not been back to church yet, I almost did but it didn't work out. I think I will be going back this week or next as soon as I get an okay from my doctor. I really miss it!
As for now, we are just waiting for full restoration and healing. I am healed like God said, and I do get to testify, now its just a matter of time while he is still doing his work.
Love you all, be blessed!