It's all relative

Went to the first meeting of a support group last week. Six widows and three widowers attended, all who had lost spouses to cancer. Hearing others stories, thoughts, and feelings let me realize I'm not a crazy as I thought.

One interesting topic were thr "triggers" for grief. After four months passing, I find most days are neither all good nor bad. I find my mood is moderate and stable much of the time, but can quickly spiral down when something triggers rememberence of her. The sight of watermelon (a favorite food of hers), a song on the radio, a scent, or someting as simple as her handwriting on a post it note can push me into the abyss.

With three teenage sons, I worry about the best way to help them along. Two have girlfriends which seem to provide some support. The youngest seems to be struggling the most, and I try to spend as much time with him as possible. We are fortunate in that he has a close friend who lives nearby which helps. His friend's mom was one of E's best friends, and she has been great about keeping an eye out for him.

With winter here, the summer toys (kayaks, sailboat, camper and motorcycle) are in storage and the main diversion is music. I continue to play with a couple different bands and ensembles; bluegrass, jazz, folk, country-rock, and the like. Making music is balm for my soul.

After running through (over and over) the stages of grief I find anger being the one that reoccurs the most often. The best way I've found to burn the anger up is to get out my guitar and sing an angry song. The two I've used the most are Bruce Cockburn's "If I had a rocket launcher" and Elvis Costellos "What's so funny about peace love and understanding".

Off to play some bluegrass this morning........

A lot has changed......

I had nearly forgotten I had started this blog. In the days after the last post, my wife became less responsive to chemo, stopped eating and drinking.

We made the hardest decision of our lives....and ceased chemo and started hospice care. She passed away minutes after midnight on August 1, 2007. As prepared as I thought I was in the years, months, and days leading up to her death, I was only fooling myself. I miss her more and in more ways then I could have ever imagined.

I started this blog as a way to get out my thoughts, with no real intentions of sharing it. And I think for my own sanity I need to continue. And will. Soon.

Life as a widower (what a freaky term) is interesting, and I'll be back with more. We just passed the four month mark since losing her, and my thoughts and emotions have run the gamut. My greatest concerns have been for my teenage sons. Until next time.....

Almost two months since the last post. After a month in the hospital she was finally released. When she was preparing to leave she broke her leg while the physical therapists were helping her stand and walk. They were ignoring her complaints of severe hip pain. You'd hope professionals would know something was wrong, and check it out before pressing her onto continued walking. Was a horrible break, requiring mega doses of morphine, and surgery to put a rod insider her femur. I'm pissed at the nurses for not watching her more closely when she fell earlier, for not using the restraints when they knew she was a fall hazard, for not having the fall hazard sign posted (they had the sign posted earlier in a different room), for not having her hips x rayed after the earlier fall. No one even expressed an apology. I think they were all to afraid of getting sued, which I still think about doing.

And I'm pissed at God. For giving her one more obstacle.

So she's been home and much more comfortable. I put a hospital style bed in the family room off the kitchen so she isn't so remote in the house (if she was in her bed). Her strength has improved and she can stand and walk on her own, but she forgets (or is too stubborn to admit) her balance is poor. She shouldn't walk anywhere without the walker and someone to steady her when she wobbles. Every day I save her from falling. Occasionally I'll let her fall to remind her the balance is shot (I don't let her hit the ground, but fall into a chair or bed; I'm not an idiot).

Her memory is not improving, and is actually getting worse. She forgets the day, time, where she is, and if she's already eaten or taken meds. Her personality has changed, being more hostile, even at her mother who in the past she was usually submissive to. Sometimes she still has mild hallucinations. In the past few days I found her crying, but a short while later doesn't remember it. She's eating less, and it's daily battle to get her to eat or take medicine. She get's tired very easily, and seems to be sleeping more. She's become more incontinent; urinating in bed frequently, usually at night, but sometime during the day.

I feel trapped. I can't even go outside for five minutes for fear of her getting up and falling. Several times I've caught her standing, or walking: thank God she hasn't fallen. Her parents are great about helping, especially her Dad who comes most days around noon, to be there until I return from work. Several of her friends; Gayle, Kay, Linda, Pat, and others have come in the mornings and stayed until Gene comes. Her mom come late afternoon and stays an hour or two, but I can tell she is worn thin as well. And her mom's health is not the best either.

I researched Carcinoma Meningitis on the web and see chances of beating it are nil. She has 2/3 of the symptoms. Others like loss of hearing and vision sound even worse. Optimistic survival estimates are six to twelve months with treatment. Most pessimistic are four to six weeks without treatment (which she has already beat). The treatment she is getting is the gold standard, and no clinical trials are out there. Her orthopaedic doc says her bone healed ok, but the bones in general are metastasized with cancer. The neurosurgeon reported the tumor looks like it's all gone, but the involvement around the cortex continues.

Her oncologist has reduced her brain chemo from weekly to every other week. He said there will come a time when it will no longer be effective, so he'd rather slow it and make it last longer since the cancer cells are reduced in her fluid.

I have resolved myself to the fact she will die from the CM. The goal now is make her comfortable as possible. And I think we are doing a pretty good job so far. I hope my own health doesn't go downhill. I get less sleep, feel like I'm having an ulcer (or heart attack) at times. I'm depressed, angry, and feel cheated that I can't do simple things like take a walk, or sit in another room. I get angry when she fights me about eating, taking meds, or wanting to sleep upstairs, but I try to remember it's not her fault; it's the brain cancer. And she still has to fight the bone, liver, and lung cancer growing.

Back home

We got her home about two weeks ago after a month in the hospital. After improving and getting out of ICU for her seizures, she moved back to a regular room. She wasn't to get out of bed to walk as her balance had been poor all along and the nurses knew it, however they failed to secure her in bed, keep the rails up, or post the notification on the door she was a fall hazard. A nurse walked in and found her on the floor. They xrayed her knees to see if she hurt them, but the xray looked ok. She began to complain of hip pain, and told the physical rehab people about it, but they walked her around anyway. While standing they heard a pop, and her leg broke leaving her in more pain then she's ever had in her life. Why the rehab people didn't heed her complaints of hip pain I'll never know. Surgery next day to install a rod inside her femur. Two more weeks in the hospital, and she is finally home. I'm so angry with the nurses for failing to protect her safety from the first fall, and angry with the phys therapy folk for walking her when her hip was in so much pain (and not suggesting another xray on the hip).

She's home now, but may never recover from the leg break enough to walk on her own. And dealing with chemo in her brain and another in her body all at the same time. Thank God she is a strong woman.

May 2

I don't expect anyone to read this, but I need to get it out, lest it rattle around inside me until it starts to eat away at my psyche like the cancer that's eating my wife's body and soul.

It's difficult for me to start at the beginning, so I'll start in the present and work my way back. Much like one of my favorite authors, Kurt Vonnegut does in Slaughterhouse Five.

My wife is dying. Of cancer. It started as breast, which we thought we had an handle on. Two masectomies, radiation, mutliple bouts of chemotherapy, and visits to five different oncologists have been part of the trip, but this last week really made me feel we were in the home stretch.

Her mind started to go about a month ago. She changed chemotherapies after her previous one showed a decline in effectiveness. The new one was showing signs of promise, but she had increased pain, we assumed due to the new med. Pain killers were prescribed, and she began taking the full dose as I didn't like seeing her hurting. Then she began getting confused. Speech was slower, and she sometimes chose odd words. Headaches started occuring, and daily bouts with vomiting; not all day, but more then she ever showed before.

I called her oncologist and Diane, my favorite nurse at the oncology center suggested I bring her in the next day. Diane made the appt, called me back and was extremely supportive but pushy. I took her in on a Wed morning, and they started her on an IV to hydrate her, added some pottasium, and ordered an MRI. MRI showed no tumors, but some inflamation around the covering of the cortex. A cat scan later that day showed the same. She was admitted while they ordered a spinal tap to test the fluid. That showed cancer cells in her fluid. Bad news. Surgery was scheduled to install a port for chemo, and another cat scan taken to look at the spot that may be a tumor. Surgery went well, but the tumor was more intrusive then they thought, eating it's way into her brain.

Her mom, dad, brother and a friend arrived to wait with me. I would of preferred to wait alone, which may seem cold, but I find I can think better without the distraction of conversation. Not to mention I end up consoling the people I'm waiting with. But I'm not so selfish that I don't realize they are her family, her blood, and and are as connected to her as I am.

After the surgery she looked like hell. But was semi concious. About half of what she could verbalize was coherent. She kept wanting to get up, and I consented to a vest like device that would hold her in bed. It seems mean, but she would hurt herself getting up, and she was tied to several machines and IV lines.

I'm scared I will lose her. I'm scared that she keep on living in pain and seeing the world through a dwindling mind.. I'm scared my boys won't know how to deal with either. I end up supporting and helping her friends that are more broken up then myself (at least on the outside).

Don't get me wrong. I'm hurting deep inside, but it comes out of me in different ways. I don't eat. I can't sleep. I haven't had a beer in a week. I cry when I'm alone.

I'm tired....it's four AM and I need a little more sleep before I have to motivate the boys to school.