Thursday, January 21, 2010

Moving Right Along

FROM CASSIE: Hello again! It's been a while and it seems like a good time for an update. Kurt and I are getting settled back into homelife again after the whirlwind of the last 6 months. My aunt Susan left last week after staying with us for the last month and half to help out when I needed 24/7 supervision so that Kurt could work. We appreciate all the good help and care she provided. While she was here we were able to cross something off her "bucket list" by taking her to the Rose Bowl Parade on New Year's Day. It was a fun, new experience for all of us.

So now it's healing time.... time to heal from the last 6 months of craziness. My doctors look at things in 3 month phases. So, in mid-February I should be able to come off a few of the 12 medicines that I take every day and be out of the woods for some (but not all) of the complications that come up after a transplant. I'll still be on some of the anti-rejection/anti-infection medicines and need to go for regular clinic visits for a year or longer. In another 3 months I should have enough of an immune system built up and the stamina to return to work, which I'm looking forward to. RAPP, the company that I work for, has been amazingly understanding and supportive during all of this. I count my boss and all the employees there as just a few of my many angels making my recovery possible.
Right now I'm continuing my weekly trips to the UCLA Oncology clinic in LA for blood tests and doctor visits. Depending on the blood test results I might get some sort of treatment through IV that day. This week my tests were good except my hemoglobin was low so I needed a blood transfusion. My liver and kidney function has stabilized from the problems I had a few weeks ago. Needing blood transfusions in the first 100 days after a bone marrow/stem cell transplant is normal because I'm still not fully producing red blood cells from my sister's stem cells. And any new red blood cells are being broken down a bit while they destroy any of my own residual red blood cells left in my body. Kurt said it's because my sister and I are both stubborn that our cells are duking it out. But I'm going to let her win this one. ;-)
I also still get weekly visits from a home nurse who gives me another IV of antibodies to pump up my immune system. Right now I have the immune system of a 2 1/2 month old. Pretty amazing. But also pretty young. So I still need to stay healthy and avoid crowds, kids, sick people and people who recently got immunizations. Needless to say, I go through a lot of anti-bacterial hand cleaner.
I received some more good news from my doctor. Barring any unforeseen circumstances, she thinks I'll be ok to travel by the end of March so I'll be flying home to Ohio to be a bridesmaid in my best friend, Nikki's wedding. We hadn't been sure whether I would be able to do it so it's very exciting to make plans to be a part of my friend's special day. It's now Operation "Grow Hair" for the wedding since I'm hoping to have a pixie cut by then so that I don't have to fool around with a wig. My hair's growing back pretty fast. Right now I have a bit of a GI Jane length going on, so keep your fingers crossed!
Also, Kurt's nephew Matthew is doing a project for school on Lymphoma. We were touched when he told us because it's just another example of how our friends and family have really rallied around us with support and interest throughout this whole diagnosis and treatment. We look forward to seeing how his project turns out.

I'm keeping busy with taking care of the house and catching up on things that I've missed or missed out on the last 6 months. In between rests, of course. I've been able to see some friends and catch up a bit, which has been nice. I'm even taking a floral design class once a week through the city parks department which has been a good, therapeutic way to do something creative and get out of the house. Some of you know that my mom was a florist so I thought I must have some natural talent in my genes somewhere! We'll see though. The picture here is my take-home from my last class. I'm also toying with learning to make jewelry, crochet and even a little wedding planning! Might as well take advantage of this time that I've been given.

That's it for now. I hope the new year is treating you all well! And I hope to see a lot more of you all this year.

Friday, January 1, 2010

Best Christmas Gift Ever


FROM CASSIE: My doctors gave me a great Christmas gift last week when they told me we didn't need to stay close to the hospital any more and could move back into our house in Long Beach. After the shock wore off, we made plans to head south ASAP. I realized that I hadn't slept in our house for over 2 months. By the Wednesday before Christmas we were back home and hanging up stockings by the chimney with care. Kurt was quite the Christmas elf dragging a last minute Christmas tree off the lot and home to decorate. We had a nice, relaxing Christmas Eve and day.

I have doctor's appointments every Monday and this week's went well. I had been feeling pretty worn out and still have side effects from all the medication I'm on, but my counts are looking good and my liver function has improved. Kidneys still have a little way to come so I get IV fluids every day at home but I'm feeling better and hoping to get another improved report on Monday. I now have the immune system of a 2 month old and will be getting weekly antibody IVs through February. Feeling stronger every day!

And Happy New Year to all! More to come on that soon. For now I'll just say I'm not sad to see 2009 go. It's been a rough one that I couldn't have made it through without the enormous support of amazing friends (old and new) and family. I'm so grateful. But, 2009, don't let the door hit 'ya on the way out..... actually let it. Here's to a happy, healthy 2010 for everyone full of new beginnings!