potatoes

I guess I have spent the past week trying to come to terms with leaving this job. ...... and also trying to explain it, to me, and to others.

I have truly loved my work here, the nurses could not be better to work with anywhere. I have loved this job.

I do have many other wonderful things in my life and I guess I need to move on to them. I DO have to do it somewhere else though.

I have my wonderful garden, my music, my great husband and friends and family and my life. You just cannot have it all.

I am slowly coming to terms with the fact that the hyperbarics did not help me much. I hold to the possibility that the treatments may have prevented my problem from getting worse.

I was doing better during the treatments (than I am now) except that the rectal bleeding started then in a bigger way than in the past. Sometimes I wonder if perhaps I just needed to do it a bit longer, and unfortunately no one seems to know the answer to that. None of the doctors at the clinic seemed to know much about the whole thing, and my gastroenterologist knew nothing about it.

So I am hoping that the Gastroenterologist at OHSU might know a bit more about it.

Oh and I just found out this week that my insurance is going to pay for the hyperbarics, it has been rather stressful with regards that.

However I am slowing coming to terms with the possibility that there is no further improvement possible. Working on developing a whole new way to eat. I might have to go back to meat, not being able to eat legumes and being a vegetarian, I tend to be hungry all the time.

I am eating tons of spinach, which I am growing tons of in my garden, as I need the added iron to make up for the bleeding. So far my blood count with respect to that is doing OK.

I have planted tons of potatoes as well, though Ken and I have not been potato eaters in the past, we will become potato eaters with all the new changes. We are growing them in oak barrels and layering them.

I really need to post some pics of my garden when I get back to Eugene.

But this next picture is Ken and I with my sister Angie and her husband Kelly, at a James Taylor/Carol King concert we went to a week ago. INCREDIBLE night.

OTHER GREAT NEWS Josh got a GREAT report card for his first full university term AND he has a job...

bye for now LOVE

janet

time to go

Hi everyone

Well what a wild ride the past few weeks have been. Last Tuesday we resigned our jobs at the hospital. We both love our jobs and the people we work with, but the politics just got to be too much. For years we have worried about the future of the hospital and challenged the direction of the administration, and we somehow just decided that there was nothing we could do and we would likely live longer if we just stopped trying.

You know the saying Grant me the serenity to accept the things I cannot change, the courage to accept those I can, and the wisdom to know the difference.

Serene is the only thing I have felt since we made this decision.

I am sleeping better than I have in years, laughing more, and somehow can see the future much more clearly.

We gave our notice as the First of September.

We still have 3 years until Ken can tap into his retirement, and have this very large mortgage (until we sell our house), but we are determined to make it work.

The univerisity (in Eugene) has already expressed and interest in both of use, and we can still do shifts and holiday relief back in Bandon.

Not quite sure how I will come up with the funds to do another cd, but perhaps with more free time I might work a little harder at selling all the ones we already have. :)

I am work work working on the garden as well. I have two books to help me with growing a sustainable garden in a small space. We are using whatever techniques we can to maximize space. Potatoes for instance, we are growing in Oak barrels and layering the seed potatoes with sand and compost, I have read where this can yield as much as a hundred pounds of potatoes. Strawberries I am growing in plastic buckets, and cutting circular holes in the sides and planting more strawberries in the sidewalls of the buckets. I have bamboo teepees for the cucumbers and beans.

I have already had 2 meals with the spinach I have already grown.

With regards to my health, well I guess my mental health has just had a great boost.

It is now a little over 3 weeks since my HBOT treatments finished. I feel that I am doing much better. I have much less abdominal pain, and much less nausea. I find in moderation I am able to eat many more things. I still have the bleeding, now pretty much on a daily basis. I think that part of the problem is that for the small bowel problem I have to take a low residue diet (which I can be more relaxed about now), but for the colon bleeding, I should be on a high fiber diet, which I just cannot do.

Anyways, since thus far neither my oncology surgeon, nor my oncology radiologist, nor my gastroenterologist seem to know much about any of this, I asked if I could be referred to OHSU, which is the main referral center in Oregon. The gastroenterologist said that if the bleeding gets to be too much he could do argon treatments, which means burning the area that is bleeding. From what I have read you can get permanent rectal ulcerations from that. I seem to have ended up with all the “rare” complications thus far, so am wanting to find a doctor who knows something about the effects of radiation on the bowels.

So I have an appointment for July 1st. up at OHSU in Portland.

The hairdresser I have had for years, is very hard to get into, and I have had my hair “woven” with colour every 6-8 months. I usually schedule a year in advance. Well needless to say I kind of got off of the list. I am quite excited because today I am back on the list and getting my hair done today. Ken thinks it is getting scruffy and I need a cut too :) I am savouring every centimeter though.........

Other news Josh got straigh B’s on his 3rd term of university and actually also did a full course load, AND he is looking for a job today. Yea! !!

Upcoming festivals ........ Folk life in Seattle at 1pm May 31st

Oregon country Fair July 10th and July 11th times and stages TBA Eugene

Bye for now LUV

Janet Bates

jankenb @ gmail.com

a day on the beach

Hi

I guess I have been waiting for something really positive to write about because I feel I just complain all the time.

After the colonoscopy I developed severe heartburn that nothing seemed to help.

I have been taking prilosec twice a day (double dose) and zantac once a day and tons of tums.

I have even gone so far as to quit coffee a week ago. Then last Thursday I developed laryngitis. Originally I think it was related to the heartburn. At night when you lay down, if the bottom muscle of your esophagus is not strong it allows the acidy stomach contents up to your vocal chords and even into your lungs.

So I had laryngitis for our concert for earth day. It was interesting, I had to develop different strategies to sing. It went pretty well though. We got it all on film and Ken is working on preparing part of it to post here.

I now have full blown bronchitis, and am pretty much feeling sorry for myself. The heartburn and stomach pains are better though.

We have another concert this Friday night in Bandon, at Brewed Awakenings, so I am trying not to talk at all to get my voice back for that.

I do think that the hyperbaric oxygen helped my problems, it is just hard because I have had OTHER problems ever since I finished.

The other very sad news is that Brandy Hindman the 28 year old women whom I spoke about last fall in this blog,( with the breast cancer) died rather suddenly last week. Wife and mother of two very small children.

We REALLY DO have to find out what is going on in our world that this should happen.

I read the other day that almost 1 million people have died from the fall out from Chernobyl, and that the Pacific Northwest was also contaminated.

What is wrong with us that we would even consider messing around with that stuff, when we have so much solar potential out there?

Bye for now

Love

Janet Bates

jankenb @ gmail.com

too much info

Perhaps at stages that is what this blog should have been called.

Just finished the colonoscopy and then had lunch, and then had a latte....and then felt just a big groggy and nauseated, so thought perhaps it best to sit and write until all the drugs wear off.

So this is my photo album of my morning spent in the colonoscopy suite. The three red shots are all of the rectum and it should have the appearance of all the other pics.

He said that these are the changes found in the rectum with radiation proctitis. He said that the area was very friable (bleeds easily) and so is pretty likely the cause of my bleeding.

At this stage he said we will only treat this if my bleeding gets to the situation that I am in need of blood transfusions.

Unfortunately a colonoscopy only shows the large bowel, and the small bowel is where I think most of the symptoms are, but at least now I know what is causing the bleeding and that it is not cancer.

So I will write more when my head clears a bit

love

Janet

jankenb @ gmail.com

great things about having a colonoscopy

I am sure that everyone reading this knows all the great things about colonoscopies, if you have not experienced it first hand, by having had one yourself, I am sure you have had the pleasure of a family member whom you have had to listen to as they whined about it.

No one is untouched by the test.

I just wanted to share a really great thing about colonoscopies that I am sure NO ONE has ever told you.

I have just found out that the gallon jug that contains the stuff you have to drink to clean you out the day before, makes a lovely tomato plant holder.

I will include picture. The jug is large..... (as in " I cannot believe I drank the whole thing" large), it is square and the bottom cuts out quite nicely to allow one to fill it up with dirt.

Not sure if everyone is familiar with the upside down way to grow tomatoes, but it a great new technology for growing. In fact you can grow MANY things this way, cucumber, zucchinis, strawberries, in fact some people with small yards can double their grow area by putting up two posts and running a 2x4 across the top of it and hanging all kinds of veggies.

I tried this a few years ago, and used those cloth bags that they always give you at conferences, but,........the cloth rotted. So this year whilst waiting each day for my hyperbarics, the man who accompanied his wife to treatments adjacent to mine, was quite a wealth of knowledge on the "small garden front". Milk jugs .....he said, well little did he know that even better than a milk jug is the colonoscopy prep bottles, and all you gotta do to get these little babies is to ..

yes...... have a colonoscopy.

yes tomorrow is the day.....

and I am STARVING!!!!!!!

I am looking at every little thing in my cupboard wondering if they may go unnoticed by the scope..... A few little crackers, is HE GOING TO NOTICE A FEW LITTLE CRACKERS.

That does remind me several years ago the surgeon telling me that he KNEW one of his patients had NOT followed the prep for the colonoscopy, he saw a hot dog weiner........ and took a picture of it to prove it.

So I guess somethings cannot be hidden.

So for now I guess I will just have yellow jello with honey on it. I was thinking about chocolate, and how it melts in your mouth and ..... how would that be different from say.... coffee, which is allowed.

by the way, my tomatoes are still alive.........(the most recent batch I planted, that is)

I decided to try something new to warm the ground. We have all these left over tiles from various projects, so I have covered the ground around the tomatoes with tiles, to soak up the sun in the day and warm up those little tomato roots at night. Perhaps this is my newest invention.

By for now

Love

Janet

jankenb @ gmail.com

oops I did it again

Just wanted to say, that all the bleeding seems to have stopped, I seem to be doing great this week.

I am still booked for colonoscopy on wednesday though, guess I should ......

I am continuing to work towards the marathon, I guess there is this idea in me that if I can run a marathon, then I MUST be healthy.

I feel stronger each week, yesterday I ran 11 miles, and it was not that hard. The only hard part was my right foot which goes numb the further I go, and then gradually starts burning. The last mile and a half we very painful

The burning stopped as soon as I stopped. I think this is the peripheral neuropathy from the chemo, my big toe is always numb.

I am thinking this may hinder the higher distances, so am "researching" what I can do. I am wearing the whole leg garment on my right leg for the lymph edema, and I wonder if perhaps that is part of the problem, so next time I am going to take off the compression garment for the last few miles.

I am still looking at the extremely long row of peas that are up in my garden, wondering if I will be able to eat them (for some reason this is one of the hardest parts for me) I absolutely love peas and I grow them so that Ken and I can go every day and eat them in the garden.

During my long run yesterday I thought many times how lucky I really am, and to come to terms with dietary modifications. After all, what would it be like to be diabetic?

Our little band, Ken, Mark and me have been together now for ?? 5 years. We have really developed a great sound, and work very well together. We have also been through a lot. Mark and I have both been through a life threatening situation in the past several years, his more of a cardiac situation and of course mine a cancer. We have both had losses.

A few days ago I was telling Mark about hearing a song on my run that day, and that we should practice that song. He said how he used to love the way the mind works when you are running, and how much he missed running. He has recently started cycling and hopes to do more of that.

Both of our "situations" became apparent rather suddenly and both soon after a performance.

His situation was that we had performed at Cosmic Pizza sunday night and a few days later he was in ICU, mine was that we had performed at Agate street grill and with in a couple of weeks I was having radical surgery. It took him months to get back to just walking and now he has long walks every day. Me, well........here I am.

I think I can speak for him here, but I do think that the music was there for both of us when it seemed that so much else was gone. I was going to trash the cd as I did not have the energy to finish it when I was on chemo, but then I decided it was at least something positive to be doing when everything else was negative.

Now I feel badly whining about my dietary restrictions, when at least I can run, and we all have the music.

Anyways, some times I wonder if I explain things very well, you have a feeling and when you try to put it in words it just gets lost.

I am feeling great today.

My only whoops is that I transplanted my tomatoes in the garden AGAIN, only to find out that Eugene's average last frost is April 23 ......

It IS a good thing that I have a few hundred tomato plants started, I may need them all.

bye for now

I just HAD to share this picture

Love Janet

jankenb @ Gmail.com

Love Janet

jankenb @ Gmail.com

almost done

Hi everyone

Some times I feel like this blog is like the song that never ends....it just goes on and on and on.

I am so sick of doctors and hospitals and treatments etc. I just want my life back in a normal way.

I am due for my 39th treatment today and my last one on Monday.

I had been doing very well and it all seemed to fall apart in a handbasket (how DOES that saying go?)

I developed frank bleeding this past week, (with my bms). I have never had this much before and it had actually gone away about half way through my HBOT treatments. Starting last weekend I have been passing bright blood and dark blood and clots. It is a bit frightening, as a doctor, I always send everyone with any amount of bleeding to someone who can do a colonoscopy. In Bandon our surgeon does them, but in the bigger centers, gastroenterologists do them.

When I saw the gastroenterologist in January, my bleeding was extremely minimal and since I had had a colonoscopy a year earlier, he thought it was not necessary. He did say he wanted to know if I developed any further bleeding. That happened in February, it was more obvious, so I decided at that point that HBOT was the best way to treat the problem, and that colonoscopy in the situation of radiation enteritis, was higher risk of perforation. (in other words, I did not contact the gastroenterologist)

On Monday I was passing clots even when I passed gas, so I decided I should see the gastroenterologist again.

I mentioned it to the HBOT doctor, and he said it clearly could be related to the HBOT. He said that the whole point of HBOT was the angiogenesis, or formation of new blood vessels in areas where the blood supply has been damaged by the radiation. When new vessels form, sometimes they form in ways that might bleed more, or this could all be part of the healing process. He also thought it would be a good idea to see the gastroenterologist.

So that is what I did yesterday.

It was a good visit, he was quite interested in the HBOT, and what it was like etc etc.

Perhaps I have entered an elite...... someone who has been treated with HBOT :)

So I am booked for colonoscopy for next Wednesday

The doctor has said he will not do any biopsies unless he feels something looks a lot like a cancer, because any sort of opening the bowel has a very hard time healing. Could just cause more bleeding. When they do colonoscopy they often do "routine biopsies", he said he will not biopsy anything unless it is absolutely necessary. BTW I am not worried about cancer.....

Normally when they find the area of bleeding in this kind of colonoscopy they treat it with ???? cobalt blue...(or something like that, I did not quite get what he said there) but we agreed that he will not treat any areas of bleeding because I am not anemic from the bleeding, and once again he could cause an open area that will not heal.

Should the bleeding become worse, we will deal with that in the future.

I have to say I am a bit worried about the prep, it is hard enough with normal bowels, right now I get nauseated if I drink too much water at one time, and I have to drink a gallon.

I am going to stay in Eugene for that reason

He also shed some light on better understanding my small bowel symptoms, ie, nausea after I eat and being unable to eat any fiber.

He said that when the small bowel is affected (ie the blood supply damaged), what happens is that that portion of the small bowel does not obstruct like you think, he said what happens is that it just stops peristalsis. So anything going through, does not go through this area as well because there is no muscle contractions to help it through. So from that I better understood what was going on in small bowel.

I am off for treatment number 39 today. Monday I get to "ring the bell".............