Tuesday, August 26, 2008

Jim's Knee Replacement

Jim has just had a total knee replacement. He will be in the hospital from today (Tuesday) through Friday. He is in a dedicated joint replacement unit, and the care so far has been fabulous.

This is him just 4 hours out of the operating room. He has zero pain right now because he had zero feeling. He was given a spinal block and it is still blocking.

I doubt we will see such a smile tomorrow!!

Friday, August 22, 2008

It's a Long Road

Am I well? I think not. Ann says we have more work to do. I need to more fully understand that the person on my resume is no longer here. She's never coming back.

This came up because I have an unfinished book contract, and I can't afford to repay the advance. And I can't find someone to finish it. And I don't know that I can finish it myself.

Jim goes for surgery next week, and I've dedicated next week 24/7 to him. The week he gets home though, we have agreed that I will open up that book project to see what sort of shape it's in and whether I could finish it. Or what I can do to get out of the project.

It feels like that book is a brick wall in the road of my journey. I have to move on. I have to put the past behind me.

I saw Dr. Gillis, the physiatrist, today. She doesn't seem to have much additional to offer. She is putting me back on Cymbalta, a low 20mg dosage, for its off-label use for neuropathy. She wants me to take it at night, to minimize the fog I experienced from it. She wants me off the Klonopin, which I take off-label for restless leg.

She gave me some foot and leg exercises, and encouraged me to keep up with my movement therapies. But that's it. She wants to see me after my breast reconstruction surgery in October to make sure I get appropriate therapy for the surgical scars.

So the road has speed bumps as well as brick walls.

Sunday, August 17, 2008

What's Up Now

Diagnosed in 2/2006. Two and a half years ago.

I hate being part of the cancer journey. I have met many dear people traveling the same road, and have lost some to the scourge. I found out about another one just this week. Gil Crain, an academic who used to do research work for the Governmental Accounting Standards Board. I didn't even know Gil had multiple myeloma, a cancer of the blood plasma. Multiple Myeloma, along with leukemia, took Maryanne McGonagal, one of my support group members, this spring.

Lymphoma, ovarian, pancreatic, melanoma....types of cancer that are far too common in my slowing shrinking world.

Enough of this yaking. Just wanted to let you know I am trying to take care of myself.

And "Mets." It doesn't matter what from. It's a word that lets you know you have, at most, no more than two more years with your friend.

Mets to the bone, liver, brain, lungs. Mets to the bone is painful. You can see the pain, along with the fear, on the face of those with bone mets. Brain mets---the slow loss of cognitive functions. Liver and lung mets---the maintenance chemo and frequent scans---have the tumors shrunk?

I am nearly certain that mets is in my future. Maybe it's the company I keep. I keep hanging out with the cancer support groups, and most of the long-timers there have eventually developed mets.

I'm living somewhere between estrogen and death. Estrogen suppression is a lousy place to be. Tamoxifen for 3 more years, then a 5-year course of an aromatase inhibitor. I'm not sure I'm all that shot in the ass with living the next 8 years, maybe the most if not all of the rest of my life, on toxins.

Cognitive dysfunction. Lethargy, chronic bone pain and muscle aches. Peripheral neuropathy. Locked joints.

And my western doctors have thrown their hands up at my "vague" symptoms. Thank God Social Security saw enough to put me on disability.

I also am giving up on my Western doctors. I now only go to my oncologist's office every 6 months, with only one of the two annual visits with the doctor himself. Otherwise, the oncology nurse. No more regular visits with my general practitioner. I will be seeing the psychiatrist only two more times--hopefully--before I am completely off the antidepressants.

I am in the "survivor" phase, so I had a meeting with the Cancer Center's Survivorship Multidisciplinary Group--a psychologist, a social worker, and an onc nurse. They set up three goals for me.

1. Restart psychotherapy with Anne. Sadly, Anne is going into semi-retirement, but is willing to continue to see me if I need her, but not more than once a month. I don't plan to break in a new counselor.

2. See Dr. Gillis, a psyiatrist at the Cancer Center. Physiatry is a branch of medicine dealing with functional restoration of a person affected by physical disability. I knew Dr. Gillis was at the Cancer Center, but I didn't think I would qualify for her time, given my "vague" symptoms. But the Multidisciplinary Team and my onc think I do, so I see her next week.

3. Contact Guy, the director of exercise services at the Health System's Preventive Medicine and Rehab Institute (PMRI), about a functional study that will be starting soon. This is a grant-funded program where women recovering from breast cancer treatment will be measured, put through a three-month program of exercise services, and measured again. The study is designed to determine how exercise improves quality of life for women recovering from breast cancer treatment. Sadly, the grant writer has left the Health System, and they are having trouble finding someone to take over his responsibilities on the grant. Also, because I would have to make a three-month commitment, I could not join the study until after I recover from my breast reconstruction surgery in late October.

It's designed to be an ongoing study, so maybe come January 2009 there will be a place for me. The benefit of getting into the study is free access to the PMRI facility and sports physiologists for three months.

Meanwhile, I am spending my "mad money" on alternative/complementary modalities to try to relieve the stress/pain areas in my body, and to try to rebuild my core strength (although I am not sure that is going to be possible while I am on the Tamoxifen). I am focusing on musculoskletal modalities. A chiropractor was very good about helping me break the pain cycle, and now I see her every 3-4 weeks. I try to go to yoga weekly. I tried reflexology, but that caused too much pain in my feet. I tried reiki and ionic foot bathing, but didn't see any improvement after a single session (and I can't afford the 3-4 sessions the practitioner said it might take to see possible improvement). An acupuncturist is doing a great job of bringing some feeling back to my feet and toes; I am seeing her 2x/week.

I bought myself a bicycle for my birthday, and am trying to get out on it every other day. Many times, I have to get off and push, but still it's exercise. When I got home from my ride this morning, I did have elevated cardiovascular function.

I am looking into the Alexander Technique classes at the local YMCA, and am on the hunt for a local Feldenkrais practitioner for Awareness Through Movement classes.