Katie McLain's Journal
Written Jul 29, 2011 6:34pm
Well, no news has been GOOD news! Here is the last 6 months in a nutshell.
Working has helped me realize how well I’m doing:
On January 31st, I returned to work part-time (still taking classes full-time with Linfield). I was a bit nervous for a few reasons. First, in January I was still spending much of my time sleeping. If I was up before 10 am it was amazing. I remember being frustrated thinking I was sleeping my life away. However, my doctor kept telling me that my body needed rest to recover. So, if I was tired, I just slept and slept and slept (some days until late afternoon). Going back to work meant that I would have to get up at 6 am in order to get ready and drive the 50 minutes or so to Springfield. To my surprise, I was easily able to get up at 6 am and in fact, I felt really good. So, I continued getting up earlier on my days off and couldn’t believe how good I felt. Had I not returned to work, I wouldn’t have discovered this.
Next, I worried about the stairs. The office is on the second floor and although there is an elevator, I told myself I would do the stairs. At first it was embarrassing, especially if someone was coming up the stairs behind me, because I was so slow. However, I could tell my strength was improving. By May, I could go up and downs the stairs at a normal pace. Now, I don’t even think about them.
OHSU appointment on June 18th:
I went to see Dr. G on June 18th which was my 2-year bone marrow transplant anniversary. Wow, I can’t believe it’s been 2 years!!! Anyway, the appointment went well. I had a bone marrow biopsy while I was there which since has come back clear. Yippee, cancer free for now!
I was shocked when Dr. G said I didn’t need to come back for ONE YEAR! That’s amazing! Until June, I had been on a six-week schedule. I would rotate seeing Holly in Corvallis and then Dr. G at OHSU every six weeks. Now, I see Holly at 3, 6, & 9 months and then go to OHSU at 12 months! I thought that was an enormous step for me!
I just found out my donor’s name today! His name is Kenneth Flob and he lives in Germany. I have his address and his email and will be contacting him. That’s all I know at this point, but am happy to have some contact information for him.
Well, that’s my last 6 months. I feel really good and am to the point where I don’t think anyone would have any idea what my body has been through if they didn’t know. I don’t plan to update unless I have a setback or get additional information about my donor.
Thanks so much for following me on this journey. I appreciate all the prayers and support!
Written Jan 18, 2011 12:35pmA short update:
I went off my immune suppression meds last week. I was pretty nervous so the day before I was suppose to stop, I went to see my BMT PA Holly in Corvallis. She told me my skin looks great and I didn't have anything to worry about. So, the next day (last Weds) I went off my tac. So far, so good! Holly also told me that if I was going to have GVHD issues, I would have had them weeks ago when my meds dropped drastically. That also made me feel much better! I am still amazed at how long this is taking to recover from, but I can tell I'm getting stronger each day.
I applied to find out my donor information so I could contact him. His donor clinic does not allow information to be given out for two years (OHSU is 18 months) so I will have to wait until June. So, I still don't know who this great guy is who saved my life.
Written Dec 22, 2010 1:21pm
I hope you all have a Merry Christmas!
I went to OHSU last week to see Dr. G. He walks in and says to me (no joke), “Does it feel good not having chipmunk cheeks?” I snickered and said it did. Good thing I don’t get offended easily! Of course, he is referring to the water retention due to the steroids I was on earlier this year. Well, I fear I will have chipmunk cheeks again soon. Dr. G cut back my immune suppression (tacrolimus or tac) medication. If I don’t see any transplant rejection (GVHD) issues, I will stop the meds in the middle of January. The hope is if I have some GVHD, we can control it with a tac ointment without suppression my immune system with the pills. If the ointment doesn’t control the GVHD, then I will go back on steroids until my tac pill levels come back up which will result in the water retention or chipmunk cheeks again. I actually don’t care that much about the swelling; the issue is the pain from my skin being stretched so much to accommodate all the extra water. So, my hope is the ointment will do the trick. Other than that, I am feeling pretty good. I still require quite a bit of sleep and don’t have all of my energy back. However, I can tell we are moving in the right direction as I require less sleep and have more energy all the time.