How Things Are Going

I finished my course of 10 radiation treatments on July 20 and returned home on the 21st, completely exhausted and troubled with pain in my right shoulder. I spent much of my time the remainder of the week asleep, as the exhaustion was completely debilitating. I did have a birthday, I think, but I mostly slept through it. My friend Swanknitter had made arrangements to visit from the 25th, so I was happy to be awake when she arrived. I was still absolutely flattened by the pain, which seemed not to be responding to anything. I had been switched from Dilaudid to an Oxycontin/Oxycodone combination and I was feeling quite ill from the diminishing effects of the radiation, the new painkillers, and other accumulated problems. I was finally feeling better from the radiation by the 28th, to the extent of having an appetite and getting some energy back.

Dr. G had asked that I come back for new scans on the 30th so we'd have a new baseline set. Swanknitter and I finished up our visit on the 29th and she returned to DC to head home to Australia from there, and we headed up to Cleveland that afternoon. The scan results weren't great but they weren't hopeless either: I'd been off all forms of treatment since end of April, so no surprise to see progression in the lungs. Test results also showed that I had high blood calcium levels, and that was probably to blame for the complete exhaustion and slight confusion I'd felt after getting home. I was given a two-hour, two-liter infusion of saline, and an infusion of my old friend Zometa.

Dr. G also made arrangements for me to meet with Dr. R of the Pain Management Clinic. Her recommendation was to continue on a reduced dose of the Oxycodone, the dose of Oxycontin that I was already on, and to add to this a prescription for Neurontin. Dr. R's nurse Brenda said, "As it is, nobody knows how it works or what it does, but it works and that's all that most people ask."

I was able to fill my first month's prescription for Afinitor before we headed home, and Saint H handed in my Neurontin prescription to fill at my local pharmacy after we got home.

I sat down last night and wrote out my pill schedule since so many things have changed: we start at 7:00 a.m. and can run continuously through 24 hours every 2 hours, if I'm awake, though the blessed Brenda says "we don't set alarm clocks to take pills, for heaven's sake!" I like that thinking. Also, last night having been the first complete cycle including the Neurontin, I'm thrilled to report that I have very little pain in my shoulder for the first time since November of last year. It's great to be witness to one of those little mysteries of medicine; I don't have to know why Neurontin works, either; just the fact that it does makes me happy. I look forward to improved conditions in the coming days. Wah-hoo!

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 ...

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:


This 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!

These 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.

Fifty-Seven

Yesterday was yet another birthday; another year has rolled past, adding another digit to my sum of years. (I won't speculate about whether or not I've grown in wisdom; probably not!) I have to say it's a lot better to keep adding the years! For all the lip service we pay to "accepting" that one's lifespan is unknown, I'd rather keep on than not. Anyway, here's to another year of discoveries.

Monday's visit to Cleveland Clinic involved meeting a new specialist intern who's spending time with the kidney cancer team. He went to great pains to reassure me that Dr. G is still my principal caregiver, and that he hoped I would trust him to treat me as well as any other Clinic staff member. I congratulated him on being chosen to work with the best available (in my no doubt biased opinion) and assured him that I would hold him equal to my expectations of care from Cleveland Clinic.

When Dr. G popped in a few minutes later, I asked him specifically how much growth we measured in last week's scan. Two of the liver tumors shrank slightly; the lung tumor expanded from 3.9 cm to 5.4 cm, and the total represented a 9% growth overall. So, I don't know if I'll be able to stay on the trial beyond this cycle (once I go beyond 20% they'd have to remove me). We can but wait to see. In the meantime, my vacation from side effects continues!

We've been enjoying a surprising month - no expectation of reaching a 90-degree day at all for the month, so very unusual in Ohio. This is shaping up to be perhaps the coolest July on record - right now we're about 4.5 degrees below the normal average high. We may be getting more rain (2" since Wednesday) through the end of the month; good and bad, since we'll soon have to cut hay again. Let's hope that we get a little slot of dry weather in the next couple of weeks.

Bite-Swear-Repeat

I'm enduring, with little grace, a nagging toothache. It started Wednesday evening and my dentist, bless him, was able to squeeze me in late Thursday morning. In general it's the whole of my right upper jaw, and we weren't able to isolate the source, but x-ray and camera shots clearly identify the cause. I have a 33-year-old crown from which the gum has gradually receded (about 1/8", ouch), and a small spot of decay has formed on the exposed root. I can hang on until next Thursday, when Dr K could fit me into the schedule for a 2-hour session, with Ora-jel and by staying away from ice-cold drinks and food. Does that mean no ice cream? Perish the thought - I'll let it melt before I eat it!

Uncomfortable it may be, but at least my great fear of osteonecrosis wasn't proved. I slept very little Wednesday night, not from pain but from worry. I am grateful that it's just aging dental work.

As an aside - Dr K loves gadgets and uses an intraoral dental camera like this to take those lovely closeups. Smile ...!

Sit Down!

Last week Saint H took a day off from work, combined that with the weekend, and spent 3 days in a class with master chairmaker Michael Herrel, who has done work with the This Old House crew in the past. Saint H has some work to do (fine shaping, finish sanding, and dyeing to bring out the grain of the poplar, maple, red oak and black walnut parts) but I'd say this is a pretty good result for 3 days' steady work.

Tomorrow I head to Columbus for a make-up appointment with Dr. SC at OSU. I had to cancel twice last month, once because of weather and once because of flu. When I called to reschedule, Dr. SC's scheduler John told me "I have a note here to call you. I'm to make certain that you are feeling okay, find out how you're faring on your present regimen, and see if we need to take a more active role in your care." He seemed pleased that I'm not at death's door (we always share some good laughs when I call). For myself, I'm very, very pleased to know that Dr. SC is keeping tabs on me. I haven't "needed" his services for well over a year but we still keep in touch, and he has always been interested in my care and well-being. Shouldn't all doctors be like that?

System vs Symptom

Just as patients have their individual reactions to disease, so do doctors have their individual approach to patients. I've had fabulous care, indifferent care, and terrible care from the many doctors I've met since I was diagnosed. I am very lucky to get nothing less than fabulous care from my principal medical team of Dr MC, Dr SC, Dr G and their staffs and associates.

Aside from a doctor's personality, there is a very distinct difference in how one may be treated, between two types of doctors practicing medicine in the U.S. On the one hand, you have MDs, or Doctors of Medicine; on the other hand, you have DOs, or Doctors of Osteopathy. The Bureau of Labor Statistics provides a sketch of the difference between the degrees here. Each branch of training is equally rigorous and demanding; the emphases are just a little different.

You may ask yourself, does it really make a difference? I maintain that it does. Dr MC, my primary care physician (PCP), is a DO. Had he been my doctor when my blood pressure spiked in 1997, I know that he would have moved beyond "your genetic tendency toward high blood pressure has finally manifested itself", to ask "but why has it done so when nothing else in your life has changed?" And, as time went on, I doubt that he would have blown off my other concerns, as my then-PCP did. Things would be very different for me now, as early detection is the key to improved chance of long-term survival.

I am certainly not saying that all MDs treat symptoms only - it depends, of course, on the physician's personality and approach to medicine and patients. I am saying that it is more likely that a DO will see that symptom in terms of the body as a whole. If the patient is willing to ask questions (and not all are; I just happen to be the elephant's child) an MD might follow up; a DO will follow up.

Go ahead and ask your doctor what training path s/he followed. If you've been seeing that doctor for a long time, you probably won't be surprised by the answer.

Off to see the wizard

Tomorrow will be spent in Cleveland at Cleveland Clinic. I'm scheduled for bloodwork, scans, and appointments with Dr G and nurse Shari. I'm grateful that we can get an interpretation of the scans while we're there.

When taking Sutent I had approximately 24% shrinkage of my tumors, and this on only partial doses between September and December; too bad about the almost-dying-of-internal-bleeding part, huh. On Nexavar, the results have been steady if not quite so spectacular; 15% and 10% shrinkage on the two scans so far. At least now I'm up to and tolerating well the half-dose of the medication, and we'll see if that makes any difference. Perhaps this scan will show whether or not the largest tumor is necrotic, as Dr G suspects.

Clinical researchers have an interesting view of shrinkage: it has to measure at 30% for most of them to feel that things are going the way they should. Dr G is happy to see shrinkage in any degree. I love his attitude - he says "I don't treat kidney cancer, I treat patients who happen to have kidney cancer." From all I've heard, that isn't the normal view of things for most of these guys! I've been very fortunate to have doctors with an overtly "patients first" attitude; not sure I could stand anything else. And I don't know that doctors with other views would stand having me for a patient, so I guess we're all even. (Note to self: how much continued progress can be made when measured in percentages of something? Is it to total reduction, or only to the point that nothing can be measured further? And that may be one and the same thing ...)

Ohio is providing its very worst summer weather now - hot, humid, hazy, rainy. I think it's too early for this; but we lucked out with June so I guess I won't complain too much.