Happy Friday to all!
Before I forget, I created a new page titled “My Schedule at SCCA”, so you can refer to it whenever you like. Details are subject to change, but I’m thinking good thoughts and hoping that all goes exactly as planned, I get the transplant October 7th, breeze through the recovery and engraft those beautiful cells Laura is giving me. OK, it might not be quite that easy, but there’s certainly nothing wrong with visualizing the ideal, right? I have so many conflicting ideas about the transplant and the outcome. I mean, I’m thinking positive thoughts, but I have a bit of a hard time dealing with the overflow of medical teachings and information coming my way right now. I am a right-brained person. I deal well with emotions and ways to distract myself from worries and fears. Signing consent after consent form for research studies, reading/talking about the possibility of a positive outcome (i.e. cure) following tansplant and the possibility of a relapse…it is all overwhelming. I am managing my fears by educating myself more, but I still feel most comfortable in the relatively ignorant-talk-about-your-emotions zone. Some people prefer science-based information, but I typically say, “give me all you got about alternate ways of dealing with a health crisis…give me the medicine, but don’t tell me too much about it….I’m about the walking-yoga-talking about your feelings-and laughter-type medicine.
Spending time in any oncology office presents you with a different take on illness, pain and life in general, but to understand what you see at the Hutch, multiply the visual of illness and pain in a typical oncology office by 100. I sat in the cafeteria waiting for my mom the other day, and when I looked around, I saw some employees of the Hutch, but I also saw lots of families dealing with probably the most difficult crisis they’ve ever faced. There were lots of bald lunchers, several who were “moon-faced”, one young teenage girl in a wheelchair being fed by her mom (or I assume it was her mom). I watched all this while I sat there relatively unaffected physically (on the outside, anyway) by cancer. It made me sad for what so many people must deal with, and it made me scared for what I might have to face soon. Other than my head and neck-ache, I feel pretty darn good right now, so it’s hard to imagine myself feeling as tired or sick as lots of these patients I see each day. I am still hopeful that I won’t feel too tired or too sick…I’m working on my visualization! There are photo boards with pictures transplant patients have sent in over the years, so I try and focus my thoughts on them, and of course on you, Andrew, my ultimate transplant inspiration!
Here’s a funny story you’ll enjoy…but only if you share the sick Matthews’ humor: our first day here, we met a lady in my apartment building. I told her I was here for a transplant, and she said “Oh, I had one…and then I went crazy!” Because she went crazy, she had to have brain surgery….and THEN she said she’s been here since January!!!! She finished off with telling us that she was basically receiving maintenance care, that there was no hope for a cure for her. Well, needless to say, she wasn’t an upper to talk to, so I don’t think I’ll be searching her out for any advice!!! It’s funny ’cause we’ve seen her a couple times at the clinic and each time, my mom whispers “Oh, look who it is!!! She’s coming our way”. Nice, Mom…way to make fun of a cancer patient!
By the way, another thing before I forget…I’m a terrible e-mailer again (but I still have the cancer card to pull out…at least it’s good for some things!). I love reading them all, and I will get back to you soon, but I just wanted to thank you for all the well wishes and thoughts. They mean so much to me.
I forgot to mention yesterday that the doctor told Laura she’s an “exceptional donor”. Her hematocrit is higher than the average female, and she’s in excellent shape. He said that I am very lucky to have her (as if I didn’t already know that! ), and he has a good feeling about the transplant. Of course, he can’t give any guarantees, but I keep reminding myself that a highly educated cancer specialist has a good feeling about my transplant…that’s good enough for me!! Laura is working hard out here, not only by going to all the meetings and appointments, but also by taking care of my mom and me. She straightened the apartment out, made lists of things we needed, shopped for those things (along with my mom), is creating a packet for visitors so they know how to get around Seattle and what they can do in the area, she brings us coffee, makes my lunch and she’s keeping us laughing (among many other things). She also brought lots of DVDs to keep us entertained. Laura, thank you for everything you’ve done for both Mom and myself. You’ve certainly helped make this a smooth transition.
Mom, I kind of made it sound like you’re not doing anything which is definitely not true!! Thank you for taking care of me, for comforting me, for sleeping in my room at night (yes, I’m 30 and I asked my mommy to sleep with me when we first got here…I think the feeling of wanting your mom when you’re not well stays with you forever). Thanks for accompanying us everywhere, for the lunches and dinners and, well, just everything. Most importantly, thanks for putting everything on hold to come out here and be with me the next couple months. And sorry if I embarrassed you yesterday by wearing my “Willie’s Wee-nee Wagon” t-shirt to the clinic.
Let me explain. The shirt reads “Willie’s Wee-nee Wagon, We relish your bun”, and it’s from a delicious hot dog/sweet tea restaurant down in Georgia, near where my Aunt Ellie et al. live. Anyway, the shirt makes me laugh, so I wore it to the clinic. After the nurse (yup, nurses do the bone marrow aspirates and biopsies here!) did my bone marrow, he said “I just have to ask you one thing: where’d you get that shirt?”, so I explained, and he said that he liked it. Well, we just called right down to GA and Laurel said she’ll pick one up for us! He did such a wonderful job, and I think he’ll get a kick out of it.
Today they did a pulmonary function test on me to make sure my lungs are doing what they should be, and everything turned out well. On one of the tests, normal is 75%, and I got 62%, but she did a calculation to account for my anemia, and it came out to 80% or so. Go me! I was surprised by how tiring the tests could be because you really have to push your breath as best you can…I’d love to see how Michael Phelps performs on that machine!
Speaking of tests, I won’t get my bone marrow results until next week (Wednesday, I think). That’s pretty annoying because at home, I get the preliminary results the same night, and then the main results a day or two later. There are certainly some frustrations when dealing with such a large treatment center. I also don’t get my CBC (complete blood count) unless I ask for it, and I definitely can’t get it right away.
One great benefit of such a large medical center is the vast amount of resources they offer. My social worker asked if I would be interested in being matched with a volunteer in the area to help show us around and teach us about Seattle. Of course, I said yes! I found out today that I actually have two women who have been assigned to me. They are both in their thirties, they love doing outdoor activities, and…………..they have dogs!!! One of them has two pugs and the other has a lab/greyhound mix, if I remember correctly. I am so excited about meeting them, and I know they will help make our experience here special.
This has been another long one!!! I hope everyone is doing well. We have the weekend off, so hopefully I’ll be able to be out and about having fun new experiences and taking pics for you! I gotta enjoy every moment before treatment, right? Hope you enjoy the new pictures I put up!