Wednesday, December 15, 2010

Making time

I checked the date of when I last blogged and realized how remiss I've been. It seems that the older I get, the less inclined I am to put words down on paper. Fifteen years ago, I would have filled a hundred notebooks with scribbles and thoughts, compelled to share. Now I feel like a hoarder, keeping things to myself.

I am well. Chris is well. The cats are well.

After I took my last final, I gave myself license to give into the steroids and vegetate and let my body slow down. I don't think I left the house for three days and pajamas were my uniform. I did manage to sew a Christmas tree skirt and four stockings for the mantle. I'm not a particularly crafty person, but I couldn't find anything commercially that I liked, and so I elected to make it myself.

Every summer, between the ages of four and six, my mother would try to teach me to sew. She's an expert seamstress and can draw patterns in her sleep. She can also cut without a pattern and turn out something professionally done. Unfortunately, her teaching style was more in the vein of learn through osmosis rather than instruction. What sane person thought a child under six would patiently sit and watch fabric run through a machine while taking notes is beyond me. There were never really any directions and the one time I tried sewing a seam on my own, my tiny finger went under the presser foot and the needle went through my nail and finger. That was the end of it as far as I was concerned. Still, something must have penetrated my resistance to learning.

Final grades posted this morning and with everything going on, I managed to get an A and B. I'm relieved to have it behind me and have started thinking about next semester. I've scheduled three classes, but think that I may cut back to two physical classes and one correspondence class. The last two months of this semester were particularly difficult for me mentally and physically. I know there won't be much of a change in the month I have off before the spring semester starts. I'm still thinking on it.

I had a few follow-up appointments in Houston yesterday and got a few more good reports. The radiologist who reviewed my chest X-ray reported that I had a near complete resolution of obliterates. I saw the X-rays and there were just a few hazy spots where there's still inflammation. They looked great, though. I also had another pulmonary function test. Back in September when the GvHD of the lungs made itself known, I'd failed a PFT. My lungs were functioning at 59%. The PFT I did following that showed an improvement and I was at 62%. Yesterday showed further improvement and I was at 66%. Baby steps. This could take months to resolve and I have to be patient. The baseline PFT that the pulmonologist is using is from June of this year where my lungs were functioning at 86%. I'll get there. Since I'm tapering oral steroids, I've been started on a steroid inhaler for my lungs.

I also saw my dermatologist who specializes in GvHD of the skin. She found a spot of GvHD in my mouth and told me that she could see where I was starting to develop GvHD on the sides of my abdomen. It's still very faint. There's also a spot starting on the side of the bridge of my nose. She also told me that my skin was perfect as far as she was concerned and coming from a doctor of that caliber, I couldn't be more pleased.

The resident who was training with my dermatologist took some extra time with me to go over my medications and my lifestyle. She took the time to talk to me about the link between taking tacrolimus for an extended period of time and skin cancer. I already knew about this. I wear sunscreen and stay out of the sun as much as I can. Tacro can also lead to lymphoma. Trust me, I've done my homework. I'm not going to worry about secondary cancers. I'll worry about doing what I can to stay healthy.

As a further bonus, my dermatologist has released me and I only have to see her on an as needed basis. We're moving in the right direction. I'll see the pulmonary specialist in three months and have all of the tests repeated. There may also be a CT scan for good measure.

There you have it. No words of wisdom, but an update none the less.

Added bonus: Me at 11 weeks on steroids


lisa adams said...

thanks for the report. and congratulations on your grades! That is such a display of perseverence and commitment. You should be so proud of yourself. xo

Kcecelia said...

Hi Ann. It's late in California, and I woke up way too early. I'm going back to sleep, but remembered I wanted to read your blog, so I came in to my study to see how you are doing. Congratulations on your grades, and on finishing another semester with an A and a B. I admire your perseverance despite all of the ridiculously tough challenges you are facing. I also admire that you are posting pictures of how your appearance is being altered by your steroids. I read how profoundly the steroids affect you in your previous post. Once, I was given steroid injections after an allergic reaction to a medication. I was so affected by the drug, just as you describe—with the jitters, racing heart, and a kind of an OCD obsession with cleaning things (my house sparkled!)—as well as affected by the withdrawal from the medication that had given me the rash, that I didn't realize until after it was over how altered I'd been physically. I remember going back to my dermatologist and having her check my body for the original rash, and having her say that it was nice to finally see what I really looked like. I hope you can get back to what you really look like—and how you really want to feel— very soon. xox.

PJ said...

All very good news! You made me realize I've been remiss with my blog. And you've cheered me up. I've been singing the blues a lot lately and am beginning to get sick of myself. Reading your post made me smile.

I was taught how to sew in Home Economics way back in the late 60's when they still sent girls there and boys to Shop. I so wanted to make a lamp, not learn how to prepare a half grapefruit. The sewing part was good though. Like you, if I can't find what I want, I make it myself..

Ronni Gordon said...

Congratulations on your good grades and your good report!

Jim said...

Great grades, Ann, and nice progress on the PFT! You are doing very well ...Merry Christmas to you and Chris!

Stephanie Burbank said...

Interesting on the GVHD... it can just show up whenever, wherever? It's such a peculiar thing after all these months. Frustrating I am sure. I hope that you progress with the steroid use. I know how crappy they are :o(

I hope you and Chris (and the cats of course) have a great Christmas! We'll try our best...