Sewing for Displeasure

Sewing used to be a relaxing and rewarding pursuit for me. I bought my own Singer machine when I was 16. I've sewn clothing, pillows, curtains and whatnot. I still have the machine, but it sits upstairs in a small gray room, abandoned and lonely.

Since my cgvh has kicked in, I've been unable to sew at a level that pleases me. Curtains, measured, cut and pinned, are buried in a bag somewhere. I put off small sewing jobs until the pile grows so large I want to weep. It's my fingers. They are no longer nimble, and I have trouble feeling the tips, not a good situation for hand-sewing. It's also my eyes. I can only sew without my PROSE lenses because I'm so nearsighted. This means my eyes are desert-dry and somewhat painful. They feel fine with my eyes closed, but I'm not that good at sewing.

Today I decided to mend a bra and sew hook-eye closures on a skirt whose zipper broke a while ago. It felt like I was under the influence of powerful drugs. Holding a needle, threading it, working with tiny bits of metal. It was frustrating but I did it, without sewing anything to myself.

I hope it holds.

Secondary Cancers

As I and my fellow leukemia vets know, having had a variety of poisons pumped into our bodies ( think "Love Canal") puts us at a 30% higher risk of developing secondary cancers. We have to be checked, re-checked and checked again all the time. It costs a lot, but we live. And we add to the economy through job creation.  

On my list is a Pet Scan, scheduled for early August plus a mammogram, a colonoscopy and a skin evaluation. In the Pet Scan, which I have yearly, they check for tumors throughout my trunk. I've yet to have had my head checked. I'm pretty sure it's empty.

Block Island Hairless and Hairy

Block Island is one of the most beautiful places on earth. It's an island off the coast of Rhode Island, and it's a place I've visited many times. Four years ago, my husband and I went for and overnight a week before my second transplant. Earlier this week, we returned for two nights. This time, I had hair, at least on my head. The rest of my body hair has never grown back, which is a plus.

We arrived at the ferry early and walked around Pt. Judith. What I appreciate about this town is that the boats coming in and going out include real fishing boats. You can watch them haul in their catch while you eat at a seaside restaurant, outside on the deck.

Ferrying to Block Island takes 55 minutes on the car ferry. The High Speed ferry takes half the time but is more expensive. The view of downtown as the ferry pulls in has remained the same since we first went there in 1986. It's probably looked the same for 100 years. We stayed at the Harborside Hotel. Considering the heat, we were fortunate to have a room with air conditioning.

My daughter is working on BI for the summer, making lots of dough. She treated me to a yoga class. I did a lot of walking. Three times I leaned back in my chair and said, "I feel so good, so happy."

Four years has made a huge difference in my life. From fear and anxiety to a feeling of well-being. It was worth waiting for.

I Ran, I Sweated, I Conquered

Some of you may know that I ran the NYC Marathon In November, 2011 in memory of Dori Brown. I trained with the Leukemia & Lymphoma Society's Team in Training, and all went well until sometime in late October when I felt I was running in lead boots. The Marathon didn't go well for me. I tripped and fell at mile 2, and I only ran 17.5 of the 26.2 miles. I retired from running shortly thereafter.

Today, for the first time in 20 months, and with the support and advice of my running sons Mark and Harry, I went for a jog. I couldn't even find my running shoes, and I wasn't sure if I had a pair of running shorts I could pull up over my hips since I have a 5-lb. mass of fibrous tissue strapped across my waist. In case you're curious, it's somehow gvh-related but I forget what caused it. Anyway, the gear issue worked out, and I sort-of-ran about half a mile on flat terrain. I had no problems with breathing, but I still had the lead-boot thing going. My muscles are so weak, probably due to long-term prednisone use.

I'm determined to increase the length of my run. It's challenging to do something you used to love, and now seems nearly impossible.

I want to give a shout-out to my friend Ann who's facing new challenges with her gvh, nearly 5 years after her transplant.

Doc Says No to Lowering Prednisone

After waiting 10 days for my doctor to get back to me about a prednisone taper, one of his nurses called today and said he said no; he'd rather not rock the boat.

I'm disappointed but I feel he has wide experience with this and I only have mine. Glad I didn't buy that pill cutter today.