Friday, May 6, 2016
Monday, February 25, 2013
Ken said to do something special today, now what special... could I do?? So I went back to my blog and started to copy it onto my computer, the first step to make this into a book
I am sure that there is an easier way to do it but for now I want my own version on my own computer.
I am alive and well and read parts of the blog where I wondered if I would still be around this long.
Saw the oncologist a few weeks ago and at least the exam did not show any evidence of cancer. I have not had a scan in almost 2 years, but everything seems to be going well.
There is not much about our lives that is the same as it was before the cancer, some good some sad, and not all can be blamed on the cancer.
We miss our friends in Oregon, and we miss Oregon, but also feel very fortunate to be here now. I guess our music was built around our friends and coconspirators against the war, and we do not have the same political associations here. I guess it is also those people who encouraged my music on. There was nothing like someone saying they loved one song or another, to getting me back working on another song.
I feel that my story here has a happy ending and though I have been afraid to say that for fear of tempting fate or something, we all need a happy cancer story to be able to help someone else believe that all is not hopeless.
WHile I read back over the blog I wonder where all that energy came from, I was doing chemo, and recording the vocals for a cd, organizing house concerts and gardening.
I had a lot more energy back then. I guess I worked less though.
Anyways, thought I would drop an note to say I am doing fine.
Wednesday, August 3, 2011
Sunday, June 19, 2011
Wednesday, May 4, 2011
Well Ken and I are doing well, we have made some changes to our schedules and it is getting a little bit better. We have been overwhelmed by the work. The town has not had regular doctors )(except one) for some time now and we have been really pressured to see a lot of patients, and we just cannot do that, as we can only work as fast as we can work and when we get behind we are spending the entire evenings working on charts. That is no fun. We realize with this new job we do not have the responsibilities we had when we were running our own clinics, however we also have lost a lot of autonomy, in that we cannot make all the decisions about our work like we did before. There are clearly pros and cons to this employee thing.
We might not last at it, and might end up going out on our own, but we will see.
Our house is going well, and we continue to love where we have bought. Just off the back of the property are miles of trails and I have gotten back to running 3 times a week. Up to 6 miles now.
I have been having a lot more pain lately with almost everything, and so will be having a CT scan in the next few weeks. The oncologist left it up to me, he said that even if we found something (a metastasis) there was nothing we could do about it, so why do the testing. I guess this makes some sense to me, but I guess I feel if I am going to be going out on my own with a clinic, there will be some commitment there and I would like to make sure that all this pain is not from the cancer.
I guess I also wonder if at all possible if this radiation enteritis only affected a small part of the small bowel, if it were to get really bad, if some day I could get it resected. Also not sure if that is possible, but I feel it would be nice to look forward to SOMETHING for this pain ??
The routine is for the first 3 years to get CT scan every 6 months or sooner if there were new symptoms. My last CA 125 was nice and low.
We are currently on our way to Seattle to take Josh to catch his flight to Prague on Sunday morning.
I am quite nervous about this, but also quite excited for him as it is going to be such an experience. He is going on an anthropology course 1 month, studying the gypsies. He then writes a paper on it,. There are 17 of them going. He is doing his paper on the influence of television on the gypsies. I guess even though many of them do not have any modern amenities, they ALL have satellite televisions. Sounds like it could be very interesting. So they watch all the very stupid things people in north america do with their money and lose all persective on reality..... at least their reality.
Last Sunday night one of my “cancer buddies” died. I believe she was 38. She had ovarian cancer. It was diagnosed in 2005 and she had a remission for 4 years, a recurrence in 2009 and then intermittant chemo since then. We became online friends... She was also a musician and I sent her my most recent CD and she was so inspired by me having done a cd (while on chemo), she recorded a CD last summer. (at this time she knew that she was not going to be cured from her disease) She had the most incredible voice, she had 2 small children and wrote a blog almost right until the end. Her husband wrote it right up until the end. They had both prayed that when the time came it would be fast, and she would not suffer, and it did all happen pretty quickly and she had time to spend at home with her children, and if a death could be beautiful, hers was. It was a family experience with the children and her husband reading to her and just spending time. She went into a coma about 4 days before she died.
Another cancer patient, and a musician I know from my house concert series, Anne Feeney, was just diagnosed with brain metastasis. She was diagnosed last summer with small cell cancer of the lung, and underwent chemo and radiation. SHe had opted at the time not to do a form of radiation to the brain that was a low dose form. I guess since so many of those with small cell cancer of the lung, get mets to the brain they do some form of generalized radiation to kill off any cancer cells in the brain. She is now undergoing gamma knife radiation treatments to the tumour in the brain, which are high dose treatments to a very specific area, in fact like surgery without the scalpel. She seems to be doing well as the last I heard, she was off in Oakland , California at a conference, so here’s hoping that the Gamma knife was successful.
Our family has been absolutely devastated this week by an accident our neice has been in in Australia. It was a head on accident in which she seems to have bore most ot the brunt.
She was treated at the scene by a helicopter ambulance crew, with blood transfusions and chest tubes. (apparently she and the other lady injured at the site were the very first patients to revieve blood at the scene, via air ambulance) In the past they have brought blood to the scene, but they have just started carrying blood in the ambulance.
She sustained a serious head injury, and a fracture of the sternum, which caused her lungs to collapse (which is why they put in chest tubes at the scene) She also had internal injuries, fractures of her lower spine, and her femur. My sister and her husband caught a flight on Sunday night midnite to fly to Australia.
It is truly amazing that she survived this accident, but it seems as though she was in the best possible place, she was airlifted to a trauma center that specializes in head injuries. She was placed in a drug induced coma right at the accident scene and they began breathing for her right away.
Since this blog is taking me so long to write (2 weeks thus far), my neice is definately getting better, she had a second surgery 2 days ago to repair a fractured femur and elbow, and though there have been a few concerns post op, she seems to be doing well.
She has an enormous amount of challenges ahead of her, including a few more operations to repair broken bones.
An interesting tidbit about Australia health care. I do not know a lot about their system, but my sister tells me that they have this system whereby all drivers have to renew their licences annually, and the money from this goes towards paying for the costs of motor vehicle accident injuries. So all of her care is paid for, despite that it might be a very long rehab etc. Interesting.
We have just heard that we have been selected for a stage at the ORegon Country Fair.
We will be playing on the Shady Grove Stage at noon on Saturday the 9th of July.
We have been planning this trip since we left, and we will also be performing at Brewed Awakenings on the 15th of July at 6:30 pm, in Bandon. I have been trying to get ahold of Bulllards Beach campground as well, but since our cell phones have changes, we have likely gotten off of their list. (we have been playing there for 4 years now)
Sunday, April 10, 2011
Sunday, March 27, 2011
I just got home from Williams Lake, my mother was admitted to a long term care facility this weekend and my sister and I went up to be there for this very difficult time. In Canada there is a shortage of long term care beds and so there is a waiting list,
so approx one year ago her name was put on a list for long term care. We thought it would be approx a 2 year wait for her to get in, and while we did not think the time was right when we applied, we felt that the time might well be right when 2 years came around.
I should also point out here that the waiting list are for the totally government sponsored beds. Someone with the funds can go into facility right away.
My father has been the primary caregiver for 4 years now, my mother had a stroke in Feb 2007, while having an angiogram. The angiogram was part of the work up for open heart surgery to replace her aortic valve. She went through 6 months of rehab and went home with a walker. We purchased a modular home that was set up for a person with handicaps, so that she could sit to work in the kitchen and we felt that she could be much more independent. In August of that year, the time came for her aortic valve surgery, and since she was getting very short of breath (due to Aortic stenosis) she decided that she still wanted to have the surgery. BUT.... a week before she was to have surgery she fell and broke her hip. She was flown to Victoria and both the hip surgery and the open heart surgery were performed within a few days of each other.
She did well after the heart surgery, but that she had had open heart surgery, she could not do the normal rehab that a hip fracture patient would undergo. (when the chest is split open with open heart surgery, the sternum takes a good 6 weeks to heal and you cannot put weight on your arms)
So she in essence ended up in wheelchair.
Last September my father admitted he was burning out from this, and we had a family meeting to find out how we could help and from this, she was started on a once a month week of respite care as well as twice weekly caregivers in the home to help with bathing. Then a few weeks her name came up, and we were in the position of either taking the bed, OR going back to the bottom of the list. (another possible 2 year wait)
So the decision was made to take the bed now.
My mother has some memory problems, but does seem to know what is going on right now and is seeming devastated and extremely sad. As one might expect, this has been an extremely difficult weekend for my family. We are all extremely sad to see her so sad.
In the two weeks or so of planning for this trip I have been trying to figure out a way to somehow make this all better. I have a certain amount of guilt for having been gone from Canada for so long, and only having seen my parents once a year or so. Now in coming back I wanted to try to make it up somehow and had hoped to be able to take her for periods of time to add to the respite and to make it easier for Dad to be able to care for her at home. BUT the bed came up before I was physically able to do any of that. So the decision now is not whether I can care for her for a week a month, but can I care for her full time?
We ARE hoping to break ground in building our home here in the next few weeks, and the plans we purchased we chose with the plan in mind that Mom would be coming for weeks at a time, so with mainfloor bedroom and wheelchair bathroom.
Ken and I spoke before I went up and have agreed that we CAN take her on full time with hiring care aids to look after her when I am working etc.
Although it is a very big step to take, I presented this plan to my family this weekend, and the consensus was to see how she does for the first few months. This will allow us time to get the house set up and ready for her. It is just breaking my heart though to know she is there and she does not want to be there, and when she asks, will I have to stay here forever?? I really do not know what to say.
I have told her about our house and that she is going to be coming for a visit and I guess we will start there.
This is clearly not something that every family has to deal with, as many people live out their lives without ever needing long term care. Several years ago my parents were visiting us in Bandon, and I took my father to the Wellness center to show him a bench I wanted him to copy for my yard. We had to go right through the Alzheimer's unit and my usual confident father was visibly terrified. He said on leaving to "shoot me if I ever get like this", implying he would never want to go into a place like this. I guess its just something most people hope to somehow bypass. I would say having worked on the other side of this issue for years that it is never easy and never straightforward.
I have to include another interesting tidbit I found out this weekend. I stayed the weekend at my parents house, I stayed in the van.
Looking for a book to read, I noticed a very plain book on the bookshelf titled “1906 fruit growers report”, which caught my interest.
Somewhere in reading about my mothers family a few years ago I read that my great grandfather, (my mothers paternal grandfather) has been commissioned by the BC government at the turn of the century to go into the Okanagan to determine the feasibility of growing fruit there.
(any Canadians reading this will know that the Okanagan has been one of the main areas that fruit has been grown in western Canada, but in more recent years, grapes.....)
I guess I was unsure of the validity of the statement until I started reading this book tonite. The book was essentially a meeting of the fruit growers of the "dominion of Canada", in Ottawa. He was a delegate from BC. There were several Canadian government officials who attended including the minister of agriculture, “the minister of Militia” and the governor general of Canada.
What is even more fascinating about this book is that a one of the primary objectives of this meeting was to address the “adulteration of foods”
There is a good deal of discussion of the impurities that were being added to the foods, such as preservatives, colour dyes and glucose. The minister of agriculture was essentially saying that we have preserved food without these substances for many years, safely why allow these substances now. (in 1906)
I have really only skimmed the book, but was extremely proud to read my great grandfathers comments. I guess I always knew that my love for gardening was so strong it MUST be genetic. I certainly will write more about it.
On my last CD the song I wrote, “with this seed” was actually about this, knowing my grandfather was a farmer, and my grandfather was a horticulturist.
jankenb @ gmail.com