Tuesday, July 3, 2007

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.

2 comments:

Anonymous said...

I fully understand what you're going through. Just remember that being there makes a difference and know that your work is not in vein. Don't be weary in well-doing, for you are becoming that fortified rock in her life as she fights and behind the fighter you are making it easier for her to do her job. Don't be angry at God, moreover, ask Him to help.

Tanja said...

Sven,

I just read your comment on Ron's blog and decided to say hi to you.

My husband died of cancer too, after a long long painful fight. I still have nightmares of it.

I will not say "Happy Thanksgiving" but I do hope that tomorrow you will be able to have some good memories.

If you feel the need to share with people, find us at www.ywbb.org

Tanja