Medical

I finished my first forty-two days of chemotherapy at the end of last month. It made a big difference in my walking, speech, and overall ability to cope. My follow-up MRI scan showed no change from March. So, I’m doing another forty-two days of chemo, but I will not get a MRI scan before seeing the doctor again because my last 4 MRI’s have been stable. Dr. Peereboom also confirmed it is important that I do not eat two hours before taking the chemo, so I tried taking it in the morning. I was sick and nauseas the rest of the day. I’ll never do that again.

I do alternate taking one pill and then two pills the next night and I can tell the difference the next day. I find I can tolerate the medicine if I take it at night; I just need to be more aware of when I eat.

Speaking of eating, my now diet is going very well.  When I was in Cleveland, I weighed in at 198 lbs.  I had been gaining 3 lbs. per month before…so even after two months, I had lost 2 lbs.!  I’ve also tapered my steroids from 8 mg/day to 3 mg/day.  I am looking forward to not taking it anymore!

Physical

Because I was unable to exercise as much as I wanted for the first three months of this year, my left leg got weaker. When I went to see Dr. Beegan, the physical therapy specialist, he suggested that I go back to my molded plastic brace for my ankle. This brace helps me lift my toes as I walk and gives me a more normal gate. But it also feels like a “step backwards” because I had “graduated” to a lace-up ankle brace. Then I remembered that it was through wearing the plastic brace that I built up the stamina to wear the other brace, and I didn’t feel quite so bad about it; I am a lot safer when I’m walking now.

I’m very disappointed that I’m not working on my left arm at all. I know many exercises that I could be doing. I’d love to be able to type with two hands. Some exercises call for simple things like wearing a sling on my right arm to force me to do things with my left arm for several hours a day. But that just sounds like torture. Others just are to play with putty and move things around in it. Or just eat and do things with my left hand.  All these sound like good ideas, but I’m just not motivated to do any of them at the moment. As Abi has said, I’ve been much more focused on survival issues and sometimes I need to give myself some slack. Still, these things cause me angst.

Money, Again

It took YSI a month longer than we had planned to get my retirement money to us. The time we had been waiting for the check was marked by, “any day now, we know it’s coming, and when it comes everything will work out.” But, while we waited, it was very anxiety provoking because we didn’t have the cash flow we had planned for.  This week it FINALLY came!

Friend with Brain Tumor

Jerry, my friend that I wrote about last time was taken to hospice and no one was sure if he was coming home. But after they increased his steroids, he was much more comfortable and stable, and he came home. He’s bed-ridden. I visit as often as possible.  We share an interest in the ‘latest technology,’ and I make sure his computer and satellite connection is working.

Each time I visit him, he seems to have declined a little bit more, but still understands what’s going on around him. His wife is looking for resources and wondering how much drugs will help him at this point and how much he should be taking.

This is a question that I ask myself about my current chemo regimen because if I take the chemo for 42 days, is the effectiveness the length of time I take it, or the strength, or the quantity or all three? What I mean is, would it be as effective to take one pill per night for 42 nights instead of alternating 1 to 2 pills every other night? Is it the dosage or the length of time I take it that is important, or both?

Unlike seizure medicines, however, I do not get immediate feedback. So, I go down that path of least resistance, which is, as Dr. Peereboom said, “ you take as much chemo as your body can tolerate.”

Things to look Forward to

Within my turmoil, I have a lot of things to look forward to. Abi graduates from medical school next month, and then will take the summer off. Hana is now 10 and will be in a play this summer called The Parrot. Zachary is always a joy and will do his first away week-long soccer camp in July.  I’m going to NYC to visit my grandfather in June. Justin, my nephew, will visit in August from Wales. He and Zachary have always been very best friends. 

Media

I continue to enjoy taking pictures and making videos. Unfortunately, I can’t do both at the same time. And, sometimes, I ask other people to “man the cameras” so I can just enjoy the event. Still, I’m collecting the resources to be able to do non-linear editing much more seriously.  I love to create. I find video a perfect fit. I’ve also found that I’m not as interested in producing videos from historical tapes as I thought I might be.  I’ve been more interested things that are current.

Pictures from May

I’ve dreamed about editing with computers since college.  But technology was not ready.  It’s still in its infancy, but at least now it is possibly.

Thanks for everything – with Blessings, Love, Kindness, and Hope!