why worry?

Hello everyone

Although I am feeling very positive about the prognosis etc at the present time, it is hard not to reflect back on my life .....at least from a very different perspective than I have in the past.  I do not feel I have the certainties I had in the past (even though we never really have certainties)

I am tending to look back fondly on when life seemed uncomplicated (before I found out about this cancer)   ......... even though it might have  seemed complicated, now I know it was not.  I seem to have divided my life into two parts, before C and after C.  I am thinking back on every "situation" in my life and saying to myself "no matter how bad it seemed, at least you did not have cancer".  I am sure this is just a stage in the process I am going through, where my mind goes when I do not have some physical malady to "distract" it.

Although our house has been for sale for 2 years, we seem to have a lot more interest in it recently, and so Ken and I are sorting through "stuff" and getting rid of "stuff". I feel much more efficient at this than ever.  When I ask my self "do you really need this", I seem to much better at saying "no". 

So today I am going through stuff, wondering why I bought it, ...when I bought it...and some stuff.... did I buy this?, or is this some stray article that got left here?  Life, thus far, has been a series of "stages" and it seems as though I needed different "stuff" for each "stage".

To get rid of "stuff" is to admit that you bought something that you would not need/want forever.  What is even worse is to get rid of stuff you have never used. But is that worse than hauling stuff around that you have never used?

   All this going through stuff has me wishing so much that I did not have this "C" hanging over my head and thinking back to when life was simpler.  I guess in  some ways everyone has something hanging over them, though they may be unaware, and  it is not always clear what "it"  is and how far away "it" is waiting. Michael Jackson? Heart attack?

I have this cute little book called "Wear Sunscreen" which is the lyrics to the song called "Wear Sunscreen", which was actually a newspaper column written to a Chicago graduating class, by Mary Schmich.

One of her lines that has stayed with me for years, (although I have yet to heed the advice) "Don't worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at four PM on some idle Tuesday."

love and peace

Janet Bates

jankenb @ gmail.com

a day with no wind

Hello everyone

A whole new day today. Spent this morning on the beach with Beth, Brenda and Ken, very low tide.

I am SOOOOO glad to be home and having a chance to heal.

So nice to have  a day off with nothing at all planned. This cancer stuff is a full time job.

I just hope these starfish survive the day, I will have to look up how that works when the starfish are out of the water for so long.

Love and peace

Janet Bates

jankenb @ gmail.com

25 out of 25

Hello Everyone

My radiation is over now, not a bit too soon for me.

It has been a hectic time with Ken (and sometimes my) work concentrated on the weekends and radiation on the weekdays, leaves no real free time. It has been hard to really enjoy Eugene, not feeling all that well.

So now we have 3 weeks before I start chemo, and at least some days off work as well.

It is hard not to dwell on the cancer diagnosis when you are visiting a cancer centre  5 days a week......yet another reason to be glad to be finished radiation.

Saw the doctor for the final visit today, my doc was not there, so saw someone else. He basically said that I might continue to feel unwell for about 2 weeks then suddenly I will feel fine..........I fully intend to feel fine by the weekend, as my  sister, Denise, is coming down this weekend to visit.

I will see the chemo doctor on thursday, and he had suggested I wait at least 2 weeks after radiation before my next chemo, and I thought that perhaps that would make it too close to the country fair, so am planning on starting back on July 13th, the day after the fair.

The last chemo I had, several people wrote to me about an article in the news that week, where they have studied the use of eating ginger before and during chemo and have shown that it does have an effect on the nausea, so I am looking forward to doing that next chemo.

Last weekend Ken, the dogs and me went out in search of mushrooms.  It is kind of early, but it gets us out in the woods. Good for the body and the soul and the dogs bodies and souls too. We did find ONE teensy weensy itsy bitsy hedgehog mushroom, so  there must be more to come.

Perhaps that is what we will do to celebrate finishing radiation.  We will also go to Coquille point tomorrow at 8 am to see the low tide.

Just an odd aside........just passed a hotel north of north bend that has a sign that says "no smoking    pets"

I thought to myself, I am so glad my pets do not smoke.........

Love and peace

Janet Bates

jankenb @ gmail.com 

things got a little stingy

Hello Everyone

Here on my second to last day of radiation, we are on our way to Eugene.

I guess I would say that I am doing pretty well........well actually 98.9 % of me is doing well. The nausea has cleared which is a huge relief. There is this one tiny portion of my anatomy....perhaps an inch squared.....that is not doing well.

It is not really a useful part of anatomy except for once, and sometimes twice a day.

However it is really important on those times.

Here is where it gets graphic. My anal canal is suffering from what would be equivalent to second degree burns. That means that the top layer of skin is gone and the underlying tissues are exposed.

I will include a diagram of that part of anatomy for those who would like a reference.

I showed the area to my doctor last Tuesday, and she assured me it would heal after this is all over.  The area extended quite a bit over the past week.

I guess there requires a level of faith here, as often when burns heal they heal with scars, and scar tissue does not behave quite the same as normal tissue. I guess I am hoping my anus will work the same as it used to, as  there are many aspects of life that would be changed if this heals in some "alternative" way.

I guess this is an area that I have some expertise ( in a round about way).  Having been  a physician caring for the elderly , primarily, for the past 11 years, I have quite an expanded knowledge of wound care. Open wounds are wounds where there is no skin overlying the tissues and they are often seen in frail elderly as bedsores (decubitus ulcers) and in diabetics. Normally when you or I scrapes our arm, even when a chunk of skin is gone, it heals anyways, because when you are healthy your body is able to fight off infections and lay down new tissue promptly.

This is not the case in the frail elderly, so often these wounds need help to heal.

The principals of open wound care are to "imitate" what the skin would do. Skin usually lies over the tissues making sure at all times that the tissues do not get too wet or two dry. So when you treat an open wound, you do not want it to dry out, OR get too wet. The other thing the skin does is provide a barrier to infection.

So what the heck do you do in the rectal/anal area where it is constantly exposed to  moisture AND bacteria?

Well I have gone back to my wound care principals to figure this one out. The bacteria that are in that area, are just colonizing the open wound until  they actually invade into the tissues, which means they are just hanging around minding their own business. Even when a wound is not infected, the bacteria get in the way of healing. You cannot get rid of these bacteria with antibiotics because technically they are not supplied by the bodies blood stream. Several years ago a product was developed from activating silver that kills virtually all bacteria and fungus on contact without affecting normal tissues. I have used it on my elderly patients wounds with good success, and recently found evidence in the literature of success on anal radiation burns. So I am putting my faith in t "Arglaes" to keep the area from getting infected AND to keep it dry.

(arglaes powder comes with calcium alginate in it, which is dried seaweed, so it soaks up excess moisture)(Calcium alginate is also often used in wound care to keep wounds from being too moist).

So the next week or so will be intensive wound care trying to make sure it does not get infected,  and to try to help it heal quickly.

I will not be having chemo now for about 3 weeks, so that should also help.

I will be quite relieved to be done with radiation, I have found it hard, especially the rather constant nausea. I have had minimal diarrhea, and I think this is because after the first 10 treatments or so my doctor suggested a full bladder with treatments which keeps the small bowels out of the way.  The area of my anus is a radiation burn, I tend to wonder what is happening on the inside of me, if this is happening on the outside. The bladder takes a hit as well, and at this point it hurts to urinate as well. As I head into the last 2 treatments, I really hope that there will be no long term effects.

In celebration, on Wednesday morning, we are going out to  the beach to experience and take pictures of the lowest tide in a very long long time

a minus 2.5 foot tide at 8:11 in the am

So anyone who wants to join us, .....perhaps at 8 am or just a bit before, we are going to go down to Coquille point.

Hoping to take pictures of starfish over our heads....and celebrate the end of radiation.

love and peace

Janet Bates

jankenb @ gmail.com 

singing in the park

"Ken.....howsabout you go to Eugene and leave me here to weed the garden...

By the time you get back tomorrow I will be all done."

It all seems like that would be sooo much easier. Of course they might find his butt just a bit hairier than mine.

Well Ken was having no part of that, so here we are on our way to Eugene once again.

The funny thing about counting down to things is that there comes a critical point that suddenly things seem managable.  Last weekend I had 7 more treatments and it seemed WAY more than I could handle. I got to Eugene, did Monday and then Tuesday, then had the worst day of diarrhea so far, just hunkered down for the day next to the toilet.

Then Wednesday went well, we went home for the night and I feel pretty good.

Now knowing that there are only 4 more treatments it all seems manageable no matter what.

My appointment is at 4:40 today and we are meeting Mark at the farmers market to play for an hour or so, still working on our selection of songs  for the Oregon country Fair.

We are playing on the Sunday of the fair july 12th at noon on the community village stage.

I have also started work with the company who are doing the cover of the cd, so it is  all starting to seem like a reality, despite the bumps along the way. I was trying to post the picture of the cover, but it is a pdf file, so could not post it here.

Well this is a note that is taking me a couple of days to write, on our way home now, with only TWO MORE TREATMENTS TO GO!!!!!    but then again who is counting?

Ken is all ready to go back to the CHEMO diet as he is finding he is getting constipated on the RADIATION diet.  

We played in the park again yesterday, with Mark and we are getting very excited about playing at the fair, we are getting very HOT!

http://www.oregoncountryfair.org/ent_community_village_stage.php

Although from these pictures it looks like our band is just Mark and me, but Ken is taking the pictures,  perhaps if we get some pictures from the oregon country fair, some might have Ken in them   :)

For some crazy reason some ad company has expressed an interest in my very political christmas song "he was born".

So who knows.....??

Love and peace 

Janet Bates

jankenb @ gmail.com

the lowest of tides

Hello everyone

I have not written much during radiation as it has been a hard struggle.

I guess with chemo you feel awful for 4-5 days, better for a week and then pretty normal for the last week. With radiation it just seems to get worse all the time.

So I have been quite down and not really feeling much like writing.

I was in luck yesterday and got invited out hiking with a group of fine women, down by Port Orford, and got even luckier, by finding a new edible mushroom. (to add to my repertoire of mushrooms that  I know how to recognize) 

AGARICUS AUGUSTUS. (the Prince)  With my rather feeble gastrointestinal situation, I did not eat it, but I checked it out with all my books and it is the real thing. When you rub the stalk it smells just like almond. So clearly something else to look forward to eating once this is all over.

Radiation is given as a dosage, a total dosage, and then divided (or fractionated) into separate treatments. I guess at one time they treated people with just the one dose, and as expected lost a lot of patitents.

Now they "fractionate" the treatments, I believe as well as people tolerate. So healthier people get less treatments with the same dose, while someone older might get more treatments with each one being lower in dosage, but the same final dose. I should say that this is my understanding of it anyways.

So as you get closer to the end of treatments you get closer to the full dose, as each dose is cumulative. The real difference in stretching it out is that you give the normal tissues a chance to recover. Apparently cancer cells do not recover as quickly as normal cells.

I am getting towards the end of my treatments and though I really have not had much diarrhea, my rectal area has opened up and is bleeding, and now the vaginal area is also inflammed and swollen.

They encourage women to either remain/become sexually active, or to use a dilator to keep the vagina open. The scarring from the inflammation tends to cause the vagina to "close in". For women who intend to be sexually active, it is very important at this stage to attempt to keep the vagina open.They give you a  dilator, that they suggest you insert for about 10 minutes 3/a week.

 It is also important for women who do not intend to be sexually active, as vaginal exams are crucial to the follow up of endometrial cancer and if the vagina is not "kept open" at this stage these exams will be extremely painful to impossible in the future.

For me at this stage it is a bit like trying to open up a closing wound, it is quite painful, but extremely important.

I believe that the rectal area now has radiation burns, the clinic said this might happen from the diarrhea, but I have not had much of that, and this area is being radiated. Today I am going to ask if they can shield this area for the remainder of treatments.

I guess I am so afraid of the long term effects of radiation, apparently some do not show up for months or even years.

Men who are radiated for prostate cancer are radiated in a similar area, however they are given a higher dose, so tend to be more prone to the chronic side effects.

My expectations are to come out of this, cancer free, I wonder perhaps if it is too much to ask to also make it through unscathed in any way.

So treatment 19 today and 20 tomorrow and then only  5 to go.

Has everyone heard about the incredible low tides that there will be next week

Apparently lowest in hundreds of years.

Early AM June 23 (my last day of radiation) and June 24th....(we will be home and ON THE BEACH>>>>

So on June 24th at 0811 am we will be on the beach.....they say we can walk all the way to Hawaii.....just kidding

It will be a minus 2.5 foot tide.

Love and peace

Janet Bates

jankenb @ gmail.com 

one and a half more weeks

Hello Everyone

Another week down and only 7 more radiation treatments left.

It has been a difficult week, not really  for any reason other than this whole cancer thing has taken over my life.

Most of the things that give me joy in life, have been compromised by the treatments, and/or some aspect of the treatments.

Staying in a hotel etc, is really getting old now, as is eating in restaurants.

Eating is one of the things that I like to do the most in life, and next to eating, preparing food is way up there.  I love to organize what I am going to make for dinner and, create the recipes etc.

I think if I had to do this all over, I would have done the radiation closer to home.  The first part of radiation was not offered in coos  bay and my surgeon suggested I do radiation in Eugene, but being away from home is wearing on me....PLUS I MISS MY DOGS.

Oh well only one more full week and then a monday and tuesday of the following week.

We have enjoyed being in Eugene despite all of this, we have taken to the trails and spent at least 4 days exploring on our bikes..  My bottom is getting a little sore, but  I have a nice WIDE seat, so no problem.

I think the sheer extent time wise of all the treatments is getting to me now. 7 months of my life taken over by this cancer treatment. There are other things going on, however the cancer plays the central role in everything we do. It will be nice to get on with life.

I have made great strides on the cd and have a real start on the cd cover, expect that will not take too long to finish.

The producer is "mixing" the cd this next week, after which I will review and make certain I am happy with all that he has done (I had planned on being in New YOrk for this phase.......but.....) The cd then gets mastered and beyond that, it gets manufactured. So we really are getting close.

We are performing at the Oregon COuntry Fair on Sunday July 12th on the community village stage, at noon.  To get ready for this  we have been busking at the Thursday farmers market in eugene, it is great fun.

Did not get many pictures, but have included one of me and Mark  Dievendorf, our drummer.

Hope y' all can make it to the fair this year

love and peace

Janet Bates

jankenb@ gmail.com

Hello everyone 

Well if I was to describe chemo,  I would have to say I just did not have the stomach for it, and radiation, well radiation just goes against my grain.

To have spent the past 30 years as a fiber nut, to suddenly seek out foods that have no fiber in them just seems crazy.

Fiber is the part of food that does not get absorbed. One friend in medical school, questioning my taste in bread, said "why not just put it directly in the toilet?"

I only have 10 more treatments but now having GI problems and having to go over to low fiber diet, it will seem long. Went to farmers market today and bypassed boxes and boxes of strawberries.

They tell me that the effects of radiation should "wear off" or "heal" within a few weeks of finishing. It is really starting to take a toll, feeling quite nauseous the past few days and very tired............and just getting fed up with it all. Nice to be over half way there, but truly ready to be totally done.  Sick of feeling sick.

I guess the radiation is catching up with me, I just slept all afternoon, and am still tired..

I am glad I will have 3 weeks of before chemo again. At least with chemo you have a week that you feel well.

So that is today for me......

I am sure tomorrow will be better

love and peace

Janet Bates

jankenb @ gmail.com

Drain

Hello everyone

Back to Bandon today. Just completed day 13..out of  25 radiation treatments.

All and all I am doing extremely well. Since I started to FILL the bladder before treatments they have gone well.  No diarrhea, or other symptoms. I do not have much of an appetite though.

From the reading I have done, the greatest risks of external beam radiation is the risk of bowel complications. In some studies as many as 16 % of people go on to have significant chronic bowel problems.  From other reading I have done, week 3 is the week that most of the diarrhea starts. (I am 3 days into week 3)  I am extrapolating that perhaps the fact that I am having very minimal symptoms at 3 weeks, that perhaps my chances of long term bowel complications  are low. It is a real pain, but perhaps filling the bladder is well worth it.

I am physically feeling a lot better this week too. Debbie noticed it yesterday and I would have to say I confirm it, I am much less pale than I have been.  For several weeks, everyone who sees me says how well I look and I think to myself that they are just being nice. This week my colour is much better and the shortness of breath that I have had for some time seems to be gone. MUST HAVE BEEN THE 4 HAMBURGERS I had last week,.....eh?

So being 4.5 weeks away from last chemo, nice to know that I can start to feel more normal. It will be hard to go back to chemo in July, but knowing that there is an end in site  might make it easier.  I even went back to work last weekend at the hospital and will this weekend as well.

We just stopped in Drain for gas and a drink at that new Kiosk.  Drain is the most unusual town, I ponder each time through there, why there is a wedding dress store in such a small town.  There must be less than 1000 population. Today I noticed that the saw shop is for sale, going out of business, as is the restaurant at the gas station...... yet the wedding dress store is still going strong, what gives?

Possibilities, perhaps potential brides flock from all over the state to Drain to shop for their gowns,.....or could it be that the divorce/remarriage rate is high, or perhaps a cult where hundreds of women flock to marry one guy.???????

At least the gun store is still there

peace and love

Janet Bates

jankenb @ gmail.com

radiation 101

Hello everyone

Radiation is really quite a trip.

It is more like a conveyer belt!  You get changed into gown that will expose your little area of interest. They escort you into the room that has a sign on the door that says BEWARE EXTREME RISK OF RADIATION...or something like that. You lie down on the table, they always situate me too high up on the table and then have to "haul" me down the table until the the little lights line up with my "little tattoes".   I gather that I MUST be shorter than anyone else there... They also tape my shoes together???

Then they leave. Then this machine goes around me and the sound is just like when you get an xray, but it lasts a lot  longer.  This happens from 4 directions, then the machine moves back, I roll over, and "try" to cover up my butt in the process (the same one that they have just lined up the tattoes on), and every day they tell me to wait until the table gets down before I try to get off. (I think they are afraid I will fall off the high table, but when you are short you get used to getting off high things carefully) That all takes 6 minutes and then someone else comes in.

On Monday we arrived early by an hour and asked if they might squeeze us in as my bladder was full then and would not likely be full an hour later. So they did.

Then I got to thinking....I wonder if they ever get the wrong patient. WHAT if I get radiation to my brain....or something else unexpected?

So the next day, I asked them, if they ever get the wrong patient. ( I guess that was a little "forward" of me). They said that someone would have to do it intentionally it would be so hard to do. They have my photo ID that comes up with my "recipe" that tells the machine what to radiate.  So I felt better.

Ken and I are hanging out in our van this week, one thing about chemo and radiation, there is a lot of nausea associated with it, and I have a tendency to "associate" the nausea with my surroundings. The restaurant next to La Quinta, is a great restaurant, great salads and meals, but we went there the night after first chemo and I cannot stand to go in there now the place just nauseates me....

I am starting to feel that way about La Quinta.,...so we are having fun staying  in the van. We have been staying out at Riverbend hospital, they have plugins for Rvs.

I had my appointment with genetic counsellor today, and found it extremely informative.

I went in there with the concern that my sister and I both had a endometrial neoplasms, hers more of a precurser, mine full blown, and that my mother and grand mother both had breast cancer. My understanding was that the BRAC 1 and BRAC 2 gene defects  also involved the endometrial cancer, but apparently this is not the case and the breast cancer is only significant,(as far as genetic testing is concerned)  in women who develop it at a younger age.  So it is unlikely that this is genetic, related to my mothers breast cancer. HOWEVER there is another genetic gene defect called the "lynch syndrome" that involves endometrial cancer and bowel cancer.  I have a cousin on my fathers side who died last year age about 49 of bowel cancer, and my sister and I both having this endometrial cancer/precancer at a young age could be related.

She thought it would be worthwhile to test for Lynch syndrome as it would alert family members to test more frequently for bowel cancer.

So that was somewhat interesting.  Not that I want to have another colonoscopy..........ever..  :)

peace and love

janet bates

jankenb @ gmail.com

turmeric cookies

Hi Everyone

We are on the road again, back to Eugene. Radiation treatment today at 5:30.

My regular times are 9 am and they give me a late time on Mondays to allow us to get there.

I am beginning to feel the effects of the radiation, some diarrhea. They suggested I take benefiber, (or metamucil, or citrucel), though they are fiber forms, what they really do is absorb water. In radiation induced diarrhea, it is caused by the bowel wall swelling (like a burn) and secreting more fluid into the bowels. The Benefiber swells in contact with the excess water.

These meds are also take for constipation so it is kind of confusing.

I find that they give me a lot of gas, so I am trying an experiment and taking beano at the same time. The way that beano works, is that it is a fungus that expands to form a solid in the presence of gas.  So will see, and if it works I will be certain to tell the cancer treatment center.

I have been extremely depressed the past few days, it really is a roller coaster emotionally,  I do well most of the time, and these days are fewer and further between, but they still happen.  I just get so angry sometimes that this has happened to me.  I feel I have looked after myself (better than most)  for most of my life. It all just seems unfair. WHY ME?

I am going for genetic counseling on Wednesday.  They say with endometrial cancer that it is usually diagnosed in women over 60, and when it does occur in younger women, they are usually overweight. My surgeon felt that the age combined with the weight, made my case possibly genetic. There is a genetic abnormality that they can identify in certain families. If this gene is found, it would mean that any females in my family are more prone to breast, endometrial and ovarian cancer.  My mother and my grandmother had breast cancer, and my younger sister had a precurser to the cancer that I have.  This info will help me to know what to do with my breasts.!

They say to look out with genetic testing as it can be means for insurance companies to refuse you, well I think that they currently have enough reasons for that, so I am just going to cling to the current insurance I have.

With chemo and then radiation and the nausea associated with all of it, I have really fallen down on my eating lots of turmuric, in fact I have had none.

Yesterday I started to develop a cookie recipe that calls for a LOT of turmuric.

The cookies are carrot chocolate chip, and I have tried to use only ingredients that I have learned are anticancer ingredients.  The first batch were pretty good, but need some work, so STAY TUNED for my ultimate turmeric cookie recipe.

I have also been trying to figure out how to get my daily green tea, as I still cannot stand the taste of it. SMOOTHIES! I can brew the green tea and put in all those berries that are anti cancer berries...

I have been planning on writing a cookbook for years, but perhaps what I need to write now is a cookbook to that utilizes all the anti cancer foods I have learned about.

Well thats what we are up to today.

OH AND MOST Important.

Ken and I went for walk in the woods today and I was not short of breath at all, and I  did run 3.5 miles on Friday with out too much trouble. My radiation doctor said that people who exercise tolerate radiation better. 

So whatever was making me short of breath seems to have gone away.

love and peace

Janet Bates