Renal Cell Live!

Saturday, June 26, 2010

Next Step (Date Unknown)

Today Saint H and I met with Dr. V of the radiation oncology team at Cleveland Clinic. He reviewed my scans and my medical history and has agreed to take me on as a patient, whoopee! He felt that I'm in good physical condition and "blooming" health, except for that little cancer problem, and that I'm a very good candidate for this treatment.

We're waiting into early next week to find out what kind of schedule we're looking at, but he wants to begin sometime next week. As he described the procedure, it's something like what was done for gamma knife, but we're looking for "gentle destruction" (his term) because lung tissue is so much more delicate than brain tissue. There are the usual times set up for mapping the lesion, and plotting the radiation plan, then I'll be scheduled for 10 sessions of radiation, 15 minutes each. In fact, I'll be getting radiation for as long as the gamma knife procedure took, just cautiously administered over 10 business days! There will be somewhat less concern over the precision aiming, though we'll be locking onto the target with what are known as "tattoos" resembling small dark moles on my chest. I suggested to him the concept of registration marks for printers, and he agreed with that. Potential side effects? I may develop some "sunburn" or darkening of the skin surface, and I may develop pneumonitis, irritation of the lung tissue resulting in coughing and shortness of breath. I don't cough now, and have only had shortness of breath when I exert myself on very, very warm, humid days, so perhaps it will take longer to see that develop. And, because the esophagus is so close to the radiation site for me, I may have some inflammation of the esophagus before this is over. Fortunately these are all controllable. This goes beyond palliative treatment; he expects to see the lesion completely destroyed, which will leave it to me and Dr. G to focus on treating the remaining lung lesions.

For the moment we don't know the schedule, because Dr. V has to coordinate several schedules - his own and the oncology team's, Dr. G's, and that of the American Cancer Society's Hope Lodge, Cleveland. Hope Lodge provides housing at no charge for cancer patients and their families when on extended stays in a distant city for treatment; with a 2-1/2 hour drive one way from home to Cleveland Clinic, I certainly qualify for the service. As you can see in this virtual tour, the facility is lovely.

The "no charge" option is becoming vital, though I can for the moment afford the Cleveland Clinic rate at the Doubletree Downtown, Lakeside ($89.00/night for rooms that normally rent for as much as $299.00/night). However, doing restaurant meals on top of about $1000 in hotel costs is getting outside my comfort zone financially. If I can take advantage of the Hope Lodge program and test out the lovely kitchens, I'll be pretty happy. We picked up a flyer on the surrounding area; lots to do to keep myself busy outside of my "15-minute day". Friend M can pursue some grant research that she needs to do, friend B has offered to be my keeper too, so Saint H won't have to be there the whole time.

The sooner I know the schedule and how it affects when I can start on Afinitor (and from that, what my schedule will be with Dr. G), the better I'll feel. Guess I'll start packing books and knitting now so I can be ready to go at a moment's notice. Some things are much more important than clothes ...

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Thursday, June 24, 2010

Last Bit for the Fair

Field of Flowers
Field of Flowers detailYears ago I swore I would never knit lace. Lace was "always" something oversize, like a bedspread, and it was always done in crochet thread on tiny steel needles, etc. Imagine my surprise when I saw a knitted linen facecloth, small and simple and lovely. I finally decided that there was nothing really keeping me from doing lace except misunderstandings on my part. I tried a couple of facecloths and scarves, and then itched to move on to something bigger. I was hooked, and have been ever since!

I chose this pattern, the "Field of Flowers" shawl by Evelyn Clark, and made it in Jaggerspun Zephyr. I worked on it very slowly (seems to be the story of my life) and came out with something I felt good about. Since then I've gotten slightly obsessive about buying laceweight yarn, but I work steadily toward finishing several small projects every year and at least one big one.

I had one other project that I wanted to put in; it's a sweater jacket worked in 2 strands of yarn, densely knitted in Manos del Uruguay and Classic Elite Applause, and colorful in shades of turquoise, blues and greens. All I have left to do is to sew the seams and block it. But last night I tried to work on finishing a seam, and discovered it's just too heavy for me to hold steady while I take the stitches, at least while my shoulder hurts. It will have to wait for a while, I'm afraid, until I find out what the radiation oncologist is willing to do.

We go this afternoon to Cleveland for tomorrow's appointment. I'll be glad to have the waiting over with.

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Sunday, June 20, 2010

Get Your Hat and Goat

Trellis HatI love to make hats. I've made hats for myself and actually kept them - most of my projects end up in other people's hands as gifts. This hat came from the fabulous book Sweaters, detailing modern takes on traditional Scandinavian colorwork. It's made in Dale of Norway Heilo; these colors represent rural Sweden to me.

My first attempt at 2-color knitting was a Dale of Norway hat from the Lillehammer collection, 1994; I did start it, at least, during the Olympics, though I didn't manage to finish it before the closing ceremonies. Saint H is the only person I know with a face long enough to wear the hat; and he's still stopped by strangers on the street who "just lo-o-ve" that hat. I have a hard time getting it off of him long enough to wash it in the wintertime.

Oceans of Knits and PurlsBefore that, I was content to stick to pretty pedestrian knitting, not very dramatic or complicated. I took a workshop with Alice Starmore in 1993 and progressed to gansey-style knitting, and this vest, "Oceans of Knits and Purls", (Knitter's, Fall 1997) was one of the most satisfying results of those forays. It has sterling "buffalo nickel" buttons and is a gift for my lovely nurse Vicki - purple is her favorite color as well as mine, and I can't think of anyone else I'd rather give it to. It will have to wait for after the County Fair, though.

I'm dealing with the usual joint pain, and the added fillip of shoulder pain is making life difficult. I'm more and more anxious for the meeting on Friday so I can find out what we'll be doing.

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Saturday, June 19, 2010

Knitting and the County Fair

Well, I'm taking the plunge and putting some of my knitting in at the county fair. I'll post photos of the projects over the next few days - don't want this to be too graphics-intense. Having spent years on dial-up connections, I always hated it when friends who lived in the "big city" sent me enormous files and videos, as I had no chance of downloading them before the connection got lost somehow. Maybe it's silly to cling to that, but I won't do it to anyone else, even though I have DSL now. Anyway, here are the first two projects:

Whirligig Shrug and Percival, napping
Whirligig ShrugThis is the Whirligig Shrug, for my friend Steph's upcoming baby if a girl. Percival Bear, the Elegant Fella, is an excellent model even if he does nap rather indiscriminately. Steph has cut my hair for who knows how long, probably 13 years at least, and still looks as young as she did when we first started. I'll have another sweater for a boy baby ready before she produces in November!

Islamic SocksThese are the "Islamic Socks" from Nancy Bush's excellent Folk Socks - I had to buy the book because I loved this pattern so much. I've made it numerous times, and this was the first attempt, done in 5-ply gansey wool just as the book called for. Saint H had a pair and walked right through the heels, so I'm making him another pair, this time with reinforcing thread through the entire foot. He's very hard on socks.

We have appointments at Cleveland Clinic next week - Tuesday with an opthalmologist to have my vision checked, and Friday with a radiation oncologist who specializes in lungs. Dr. GV must have agreed to review my scans as the appointment is listed as "new patient consult"; I'm anxious to hear what he suggests. I'll just have to wait, though, like always - not always patiently, but I'm good at it.

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Thursday, June 17, 2010

Song Virus

My friend and sister C2, who sings in a folk trio, uses this term to describe the tune that implants itself into your head and your routine. Generally it's something obnoxious or inappropriate, and you just can't rid yourself of it until it's supplanted by something equally obnoxious or inappropriate ...

For the past several days I've been attacked by Disney's "It's a Small World", thanks to my friend A who sent me a jovial message on Monday. Over the weekend she visited with friends and family in her hometown and was chatting with her niece and nephew's maternal aunt. I don't know how the conversation turned to this, but the aunt is a nurse at Cleveland Clinic. It turns out she knows me and St. H rather well - she's none other than my sweet nurse Vicki whom we met on the last clinical trial. Yes, it is a small world. I just wish that song would go away!

Yesterday was scanning day at Cleveland Clinic, my first since starting Votrient in April. I'm officially off Votrient, as it did nothing to slow down my lung lesion and, indeed, I've developed seven tiny lesions in other areas of the lungs -- both lungs, unfortunately. Dr. G is working on options and schedules - looks like we'll check into radiation therapy on the right lung lesion, primarily palliative as I'm starting to have quite a bit of pain from it pressing against the shoulder blade but possibly as a debulking measure if they think it's possible. And sometime soon I'll be starting on Afinitor, the oral mTor-inhibitor. Nothing like pushing forward regardless ... I'll post more as soon as I know more.

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