May 20, 2009
My Hospice Social Worker
I had a meeting with my Hospice social worker today, but first some good news. Last week my nurse prescribed an appetite stimulant/steroid pill for me. After 5 days of taking it, it kicked in. If eating a plate of french fries at midnight gives you a clue, it is working. Also spent an hour and a half outside without tiring as much which beats 20 or 30 minutes. For the record, the drug is Dexamenthasone 4mg. I guess it is a generic for Decadron.
As for today. I wanted this to be an "educational meeting". I figured she was still trying to figure me out and of course I was doing the same. I just told some stories of me and what was going on good and bad the past few days. She did get a kick out of a social work story I told her to show maybe how bad it was in the 60's. These social workers chewed out a woman for buying 2 half gallons of milk instead a gallon and how much more that cost the county. Then the other complained that a woman with an IQ of less than 70 would not iron her sheets. Really true. I'm not sure what the social worker has me pegged as. I'm sure she has an opinion. As for her. She is a good listener, of course she must be. She also is an all business person in the end. When the "fun" talk ends she is always pressing to see if I am thinking about decisions to be made in the future and to not wait to long to make them. I understand that, but am feeling good enough that I don't want to do that yet. I've added another what turns out to be something complicated, organ donation. Of course with the cancer there is a problem that may allow nothing. She is going to check on what I might be able to do. She also reminded me that my good mental health would probably extend my life and home conflict is not what I need.
I understand that. Guess she might think I am a procrastinator. Until next time, good health to all of you, and if it looks good, EAT IT!!!
May 12, 2009
What Do You Know About Hospice?
Hard to believe that this is the 66th entry I've made on this diary. But, the question of the day is about Hospice and as for me, I knew very little about them, just their basic mission. Well, I found out they are much more than I thought. They provide pain control, control of various symptoms, medication managemnet, personal care, counseling and spiritual care and bereavement services. After signing up with paperwork and more paperwork, the very next day a drug kit arrived from Fed Ex, which I don't need right now and is now stored in the bottom of the refrigerator for when I do need it. Then I had a nurse and a social worker call to set up a "get aquainted" meeting. That meeting also included a chaplain, all assigned to me for what ever the duration will be. I found the trio to be very professional with a desire to help me with my needs and maybe a bit frustrated that those needs are minimal right now. The nurse is pretty much all business, all the health stuff. The social worker is more into any problems other than health with questions like having a will and living will, choosing someone to give power of attorney to, is there someone to give the care you will need when things go bad and any "mental" type problems you might have. I can't imagine choosing this as a vocation, working closely with a person you are going to watch die. You's have to be pnetty dedicated and these ladies seem to be. I'd guess they may still be trying to figure me out, a little complicated. I too am still trying to pinpoint their personalities. Since it is a requirement to be seen every two weeks I think we're going to get to know each other very well. So far I look forward to these get togethers and enjoy talking and enjoy telling a few stories and sharing some of my writing. It is also comforting to know there is someone there if I am having any problems. So, that's the continuing story to date. I see them again tomorrow. Good health to all of you.
April 27, 2009
Beginning of the End
It has been some ten months since I had an entry in this diary. Things had gotten so routine I stopped writing. Since then the effectiveness of the anti-body Avastin stopped working, we tried the original chemotherapy again for two months and it disn't really work. We took a break and went through thirteen treatments of a new drug combination and had minimal results. We took a two month break, did another Cat Scan (number 16 or 17) and found slow growth. We're now at mid-March of this year and the doctor really surprised me. The verdict was anymore chemo could do as much harm to my body as good, so it's time to stop. So the end of this journey is coming, but nobody knows when. I am signed up with Hospice, although I don't need them right now. I've had no drugs since the first week of January and I still feel fine. Yes, the same old lack of energy and get tired pretty quickly, but that's been the case for 3 1/2 years. It is pretty hard to accept, but you knew the day would come sooner or later. It will be four years in July. Now that we have a new course to follow, I thought what happens in the upcoming months may be of interest to some. So, look for this diary in the future months. I wish you all good health.
July 3, 2008
Unfortunately A New Beginning
In a couple of weeks I'll see the 3rd anniversary of my cancer surgery. I should be real happy to be alive and functional, but that takes a back seat to starting a new round of chemotherapy. In a way, I'm no better off than I was 3 years ago. This new "recipe" has a new drug that I don't know the name of yet, and a variation of the 46 hour drug that makes me carry the infusion pump in that "damn" bag. Since I really was lucky last time when my body got used to the drugs, I am looking at the down side and figure this time I'm going to have problems, get sick, lose my hair and all the other bad things. The doctor was very friendly Wed., but brief for all that is going to happen. I did ask for another 2 weeks before starting which he agreed to with no hesitation. I need to gain some more weight. The appetite stimulant is working and I could eat all day, but I've only gained 6 lbs. I need to gain at least 4 more in the next 2 weeks. I can continue taking that even when the chemo starts, so hopefully that lack of appetite the drugs cause will be counteracted. I think if I can keep my weight up the drug effect will be lessened. I still get tired so easy. I have so much to get down outside and I get pooped real fast. It makes me mad and discouraged. Unfortunately, I get little help from anyone. I guess that's about all I can say right now. The chemo begins on July 22nd. Wish me luck and good health to all of you.
June 12, 2008
Latest Cat Scan
Being a writer of sorts, it's strange that I'm having difficulty on how to write this. So, excuse me if I ramble a bit. Yesterday was the doctors visit and it got off to a bad start when I lost another pound. Then when the doctor came into the exam room, his body language was not good and he passed the stool he sits on and sat on a chair in the corner. I asked good or bad news and the answer was bad, but not real bad. The facts. Two months of the drugs and they basicaly did no good. The liver was ok, with a 1 mm shrink, but a new nodule was in the lungs and one other nodule in the lungs had grown 1 mm. So, I'm done with that set of drugs. I thought they were working as I had all the side effects as before. At least we held our own in most cases so I can't disagree with the decision to try these drugs again. To explain things and maybe to make me feel a little better, the doctor said that I was in no danger at this point as the liver is a rather large mass and my biggest nodule is like a thumbprint on it. He said I was safe for at least 12 weeks, although the lungs are starting to be a problem. The good news of this, maybe, is he gave me 3 weeks off to build my body back up. He is going to consult with the other oncology doctors to plan a new treatment program and one that would be sure to cover the lungs, as well as the liver. This was one of the best visits with the doctor I've had. He seemed really concerned about me and more than willing to sit there and answer any questions I had. I was tempted to ask the question about how long I would have a liveable life if I quit, but passed it up. I was getting along with these drugs so good, I'm afraid I won't be that lucky next time. I did get my prescription for the appetite stimulent and have taken 2 doses and have had no increase in appetite yet. It says it may take 2 weeks. Another $250 drug, but of course Humana gave me a generic for $4. Mentally, I have mixed feelings. I'm going to enjoy the time off again, but the new drugs do worry me. I know this is a long term thing as we've been through 3 years of this next month, but it can be depressing at times. I really get mad when I do the least bit of things outside and get pooped real fast. I don't know if I will ever recover the muscle mass that I have lost these past 3 months. I don't know what else to say at this point except to wish all of you good health, be happy with it, don't take it for granted and enjoy it.