Friday, March 26, 2010

9 miles down

Hi there
Well number 29 today and the "novelty" has definitely worn off. I am sticking to real action movies to get me through the last 10 treatments. I feel very motivated because I am definitely feeling much better. I completed a 9 mile run the other day with 2 conditions playing against me.
It was hot (which I am not used to) and I was wearing Ken's shoes (which are at least one size bigger than mine). But I made it. (I forgot mine back in Bandon)
No bathroom stops, no problems at all with the bowels. No more mucus, no more bleeding and very little pain, and no nausea recently. Ready to make black bean soup...... Ken says perhaps we should wait till NEXT week..
I am feeling pretty darned normal, except for the eyes and I am even getting used to that.

I have decided that I really would like to plan to run a marathon this year. Though I have never gone back and read this entire blog again, I am pretty sure I mentioned early on that I was going to run a marathon in a year, and everyone thought I was nuts, and I probably was.
I remember trying to run while I was on radiation, and being thrilled at getting 2 miles. I have come so far ( well ...... 7 miles).
A marathon is 26.4 miles (or 27.3), and it is exactly the distance from our house on the beach, to Fred Myers in Coos Bay. I used to run that distance a couple of times a year. I did run 3 formal marathons in the past, the first one in Seattle in 1996. The way I see it, that would be a good one to plan for, both timing, and sentiment wise.
It is in November, US Thanksgiving weekend, and this year would be 15 years.
It holds another significance for me as well. The night before the marathon, Ken and I got a call that his beloved Aunt Genie had had surgery that day for an abdominal mass, and it turned out that she was just full of cancer, so they just closed her back up, nothing done. I guess most people run a marathon thinking of the great accomplishment they are making, however that day all I could think was how very lucky I was to be able to run, when poor Genie had cancer and was going to die of it. Many tears along the way. Genie was one of the most wonderful people I have ever known.
So I think perhaps that that should be the one I should aim for.
Basically the way you "train" for a marathon is to have one long run and two short runs a week, the long run increasing by a mile every week, until you reach about 15 miles and then you have a long run every second week, and a 8-9 miler on the in between weeks.
I may try to do it even slower than this, having the long run every 10 days to allow for more healing time. The one other thing that has cropped up is the numbness from the chemo. I had numbness in my feet and hands that started towards the end of chemo, but most of it went away except from my right big toe, which is numb all the time now. However when I run the other toes become numb as well and gradually the bottom of the foot also starts to go numb. The numbness in the big toe turns to pain ( which I believe must be the peripheral neuropathy pain which is described as being a burning type of pain). This all goes away when I finish running, except the numb toe. It is kind of funny in that in diabetics we are alway teaching them to examine their feet regularly especially if they have numbness, as they would not detect an injury. Well I did not think to check my toe until today and was quite surprised to find a big blister on my toe, which I had no idea was there. So I WILL need to be more careful and check my toe on occasion.
video I thought I would include this video, it was filmed on an IPhone....pretty incredible EH?
Bye for now,
love
janet
jankenb @ gmail.com

Wednesday, March 24, 2010

vaginal atrophy post radiation

Hi Everyone
Just a quick note to tell you about my visit yesterday. My gynecologist/oncologist examined me and said that the bleeding from the vagina is most likely caused from atrophic tissues. Atrophy is just a wasting away of tissues, from many causes. In this case, the vaginal tissues, which have been treated heavily with radiation have lost much of their normal properties. Much like a bad burn....
If you have ever seen someone after a severe burn to part of their body, such as the face..
The skin lacks elasticity and is very prone to injury, and bleeding. She said that during her exam, doing the PAP, the tissues bled, just on touch.
ANd she said that all of this is normal and that she saw nothing suspicious for cancer. She did do a PAP which is to look microscopically at the cells. She does not expect to find anything on that either. I have read where less that 1% of endometrial cancer recurrences are picked up on PAPs. They do them, but they are little help.
The most important thing is for an experienced doctor, trained to know what to look for, to do the exam. I think more is obtained by her exam than by the pap.

So anyways, things look good. My Ca 125 is still 7 which it has been now for months (can't remember if I already said that)
I am certain that it is going to get VERY cold in Eugene soon, it may even snow..... I started planting my tomato plants in the garden yesterday :) We are gradually taking out more and more ground cover to make room for vegetables. Yesterday we put in a raised bed that I am going to put in all my basil plants, I am going to put them very close together and fertilize regularly.
I saw the most incredible movie in the chamber yesterday, the Changeling with Angelina Jolie. Wow what an incredible movie, and a true story, thanks to Bob for suggesting that one.
Bye for now, today going in for treatment number 27, I did not really start counting until the last few days.
Love
Janet
jankenb @ gmail.com

Monday, March 22, 2010

out in the streets

Hello everyone

Heading back to Eugene after a weekend in Bandon. Feeling very great, things really seem to be settling this week (I say with crossed fingers). With so many things in life there is this underlying “superstition” that you are afraid to announce something is really gone, for fear that by announcing it, ie being too confident, that it will all come back.

For that reason, I am very afraid to say that I feel that I am cured or anything like that, especially about the cancer. You are always reading about those famous ones, who had said that they were cured, only to be reading their obituary a few years later on. I guess the better term is NED, or no evidence of disease. That way you are not “messing with” the gods of fate, you are only stating a fact.

Perhaps it is something like “mission accomplished”........or that its not over till the fat lady sings, and I just do not know who the fat lady is.

But everything seems to be better and I will not bore you with the gory details.


I am seeing my gyne/oncologist tomorrow about the vaginal bleeding, I guess just so she can have a look and make sure no evidence of some growth in the vagina, my guess is that she will likely do a PAP of the vagina. A PAP is really just a swab, usually of the cervix to screen for cancer cells, or “precancerous” cells. So it can be done after a hysterectomy but it is more of a vaginal wall smear, or the cuff, which is where the top of the vagina is sewn up where the cervix USED to be.

I had my CA 125 done ( I have them almost monthly and the insurance I think only covers them every 3 months, but they make me feel better. My CA 125 is still 7, which is where is has been since the end of radiation. And that is a very good and very low level. So I pay for a few here and there..





It was great this weekend to be out “in the streets” again for a protest of the war to commemorate 7 years of this Iraq war.....is commemorate the wrong word here, perhaps remem-berate. This kind of thing is important I believe, to remind people that there IS a war going on and soldiers and civilians are STILL dying.

Over the past year I have come across so many people with cancer. What a terrible fate to die early of cancer. I got to thinking that actually war is even more senseless. Historically more than 50% of those who die in war are the young, the children. -Otherwise healthy children suffering violent deaths, for what?? Now what could be more senseless than that?

I feel pretty darn lucky to have lived to the ripe age of 53 and never experienced war, first hand. In comparison cancer seems trivial, for many there is a cure.


To utilize metaphors to explain things, which I often do in my songs, I would wonder if there really is a cure for war. This country seems to have a rather metastatic case of war-itis.

Now there is a metaphor with a lot of possibilities.....


Anyways, I digress. I have included photos taken by Bob Fischer of us out there last Saturday. As you can see my hair is VERY thick, but not yet worthy of a pony tail (not that I have not tried)

Love

Janet

jankenb @ gmail.com

Friday, March 19, 2010

maybe this is working

Hi there
Wanted to check in today to say that I really think that perhaps this week is really making a difference. I felt great all day yesterday and feel great today. Pain is nonexistant now.(always afraid to say that ...you know with superstition and all)
The headaches seem to have gradually gone away with the more I wear the glasses.

Ken and Mark and I are practice practice practicing for an upcoming show here in Eugene for Earth day, April 24th, down behind the EWEB building. We are playing for a grand 75 minutes, and these shows are always great because I feel at liberty to play all political songs.
Also for the show in Seattle (folklife festival) I have been asked in addition to my stage spot to perform on another stage that they are doing a Dolly Parton thing, having everyone do a Dolly Parton cover. So have I have searched to find one that I have not heard in years, called the cowgirl and the dandy. On a rainy night in tennessee in an airport, when all the planes have been grounded she meets a "dandy". I have always loved the song, so I will do that one.
BTW, Ken and I met in an airport, on a stormy night, when all the planes had been grounded.

I once read somewhere that to form a bad habit it only takes a day or two, but to form a good habit, it takes 6 weeks. So for 6 weeks you have to PUSH yourself to do it, and then it becomes a habit. Right now I am working on my doing some form of exercise every day,........ as my habit.

After my treatment today I am catching a ride home to Bandon with a friend, and I am really looking forward to seeing Ken.
We start a 3 week holiday next week, so we will be here together.
AND TOMORROW is a big rally at the corner of 101 and hwy 42 in Bandon to protest the Iraq war, on the 7th anniversary. Come one come all, and there are protests going on all over the country.
Its bad enough the loss of life from cancer, but that is no wheres near as senseless as the loss of life from war.
Love
Janet
Jankenb @ gmail.com

Wednesday, March 17, 2010

8 loooong miles


Hi there
I am half way through the hyperbaric treatments and I feel it is helping.
It is a hard thing to measure, but I seem to have less pain. Still some bleeding, diarrhea etc etc
I have worked my way through most recent Meryl Streep movies, pretty amazing woman.
I read where she was being nominated for Julie and Julia, which is her ?14th nomination, which is a record. She certainly deserves it.

I am still working away at getting back to the shape I was in before this all happened, and that little photo above there was snapped at the end of an 8 mile run, which came after an 8 mile bike ride. The reason it is so fuzzy is that I was going SOOOO fast..:)
There certainly are more challenges with long distance running than there used to be.....
lack of bathrooms being one. I guess rather than bemoan all I have lost in fitness, I am trying to think of how very lucky I was before that running came so easy to me.
I have probably mentioned this before, but for many years, Ken and I did a 21 mile loop every Friday, Ken on his bike, and me running. To look back on my life and choose the very very best times, I would have to say that these Fridays have been the very best of days.
So I guess I would like to get them back. So I will keep working at it. You see it used to be easy for me to run that 21 miles, and to run 8 is very hard.... but I WILL quit complaining.

My eyesight is QUITE interesting. I have completely switched from being for sighted to being nearsighted. I went to get glasses this week, because I was concerned driving and having headaches and wanted to see if the vision was causing them. I normally need 2.50 readers to read a book, or the computer, now I do not need anything.
However I cannot read any of the numbers on the stove which is 8 feet away. SO I am basically reading UNDER my glasses, instead of what I normally do, which is looking over my glasses to see the distance. It is hard to remember what to do when. So subsequently the headaches are back and forth.
I have developed some vaginal bleeding which can be a sign of recurrence (but also can be several other things), so am seeing my oncologist next week.

My friend who had surgery last week has gone home and sounds like she is doing well, I have not heard yet about what was found, but I am sure in time.

Bye for now
Love
Janet
jankenb @ gmail.com

Saturday, March 13, 2010

the sink project



Well its been quite a week. My vision has really decreased, I can still see all the cars around me, the signs are getting to be a problem, and this next week will be the last week I have to drive myself. After this week, Ken will be here for 3 weeks.
I may go and have a cheapo pair of glasses made, just for the driving. They advise you not to get your eyes checked until 8 weeks after you finish, but this is just so you do not spend unnecessarily on glasses you will not need. I figure if I can maintain my independence, it will be worth the cost, and a friend told me that they are pretty cheap at this one chain. (not walmart)
My symptoms all came back this week and I had to take pain meds during the night and the antinausea meds, but am better today.
I met with the doctor yesterday. They are there every day, but thus far I have only seen them in passing and they occasionally wave at me in the chamber. One of the doctors was leaning on the chamber trying to ask me in sign language how I was doing. I was TRYING to point to the sign on the outside of the chamber that said "do not lean on the chamber"...........
..Doctors just never follow the rules...
The reason I saw the doc yesterday is that I had asked Scott, the tech, if it was normal to have a funny feeling in my chest for the first half an hour after every treatment. To doctor explained that there are certain changes in the lungs that occur with the hyperbaric treatments. I have read into this and my simplification would be that the lungs have some microscopic inflammation from the high levels of oxygen and this clears after treatments. Studies done on the pulmonary function tests of those treated with hyperbaric treatments showed a decrease in their FEV1 (which is the volume of air you can breath out forcefully in one second) which is progressive as your treatments to on. The studies went on to show that this is all reversible after the treatments ended, approx 8 weeks after (according to the studies)
So what this means to me is that perhaps being just a little more short of breath when I am running is to be expected, and will get better afterwards.
Anyways while I was seeing the doc, I asked him about what to expect at this stage as far as my radiation enteritis, since many of my symptoms seem to have come back last weekend and for the first few days of this week. He said with the radiation changes they did not really look for improvements until the end of the first month (20 treatments)
Well I am at 19 and actually doing pretty well today. So perhaps I was just expecting too much too soon.
I also asked him about the occasional reference I see questioning whether HBOT can stimulate cancers to grow. He said that this gets brought up every year at the HBOT conferences and thus far there has been no study that had proven that.
So onwards and upwards.....

This has been a colder week in Eugene, and though I have over 400 plants growing in my greenhouse, we have turned our energies inwards, and indoors for this week.
We purchased a little cabinet at pier one imports, replaced the top of it with hardybacker and then tiled it, replaced the sink and faucet and finally applied the tiles to the backsplash.
Well actually Ken has done pretty much all of this, I am just the one who dreams it all up.
If you look off above the shower in the background you can see my handywork.
I decided yesterday that the top row of tiles in the shower did NOT MATCH my colour scheme for the sink. I guess I had expected that perhaps the tiles would just come off sort of like the white icing comes off gingerbread houses. ,........ NOT!!!
Whilst tearing them out yesterday I was wondering why it reminded of the many times we have torn apart walls in our renos....... the reason being I WAS tearing out the wall, WHOOPS>>>
Ken rushed out to get a better tool before I completely destroyed the walls in the bathroom, I feverishly worked at it to show Ken I could get it done before he got back with his TOOL.
Well I got it half done and the job was easier with "the tool", why DOES he always have to be right ???
Anyways with our extensive experience with home renovations, we are more than able to fix a few little holes in the walls.
So when Ken goes back to Bandon on Monday I will complete the tile work in the shower, I was feeling so left out with the sink project.
THAT IS unless the weather gets better and I turn my attention outside again. :)

Oh and guess what OTHER good news happened this week, I have been chosen to perform at FOlk life a festival in Seattle at the end of MAY.
I have to also chose a Dolly Parton song to perform on a second stage....hmmmmmm

bye for now
luv
Janet
jankenb @gmail.com


Wednesday, March 10, 2010

a prayer for a friend

Over the past year, I have befriended several people with similar cancers of the endometrium.
The person I have gotten to know the best is Paige Donnelly, she contacted me via this blog and asked if we could interact through email. We have stayed in close touch throughout this time.
She had endometrial cancer which was found accidently after a hysterectomy for fibroids.
The pathology report showed a cancer in the uterus, and extremely rare one, and an extremely aggressive one. On Pet scan she was found to have a positive node in the pelvis, one in the para aortic area and another one somewheres near the liver. Since the "histology", or type of cancer is rare
She has been on chemo for a year, all of the other positive lymph nodes have disappeared except for the one near the liver. The doctors have been very hesitant to operate on this node, since the surgery itself is so "difficult" to get at. Since the other nodes have all now disappeared, they feel that there may be a benefit in operating on the remaining nodes, which is clearly abnormal, but has been stable in size for several months.
She has been to 4 OTHER centers looking for other opinions, and unfortunately with the best and the finest, her prognosis was still very poor.
I am in total admiration for her in her determination.
If anyone out there has a moment please send a positive thought, or prayer her way today, for she is having a very big operation today and she is a very special person

Love
Janet Bates
jankenb @ gmail.com

Monday, March 8, 2010

starting week 4

I have now completed 15/40 treatments. I have been doing pretty well, this past weekend though, I guess I must have ate the wrong thing and have been nauseated since Sunday morning. I have been taking the zofran, which partially works.
The odd thing is that it all went away while I was in the chamber, but came back a few hours after I finished. ??? Anyways much better today.
This radiation enteritis seems to come in "waves". I seem to tolerate a regular diet for a few days and then it seems to become more than I can tolerate and I have the nausea and pain, which seems to last for a few days after I stop eating any fiber. The good thing about the no fiber diet is that pizza is included, the bad thing about a no fiber diet is that pizza is included.
I should say that apart from the past few days I have been doing very well. I have been working hard at getting back at my long distant running legs back and really feel ready. I am up to 7 miles and my legs are not extremely painful for several days after each run (which has been the case now for months).
I think it is a little too early to expect results from the hyperbaric treatments, as studies have suggested a minimum of 30 treatments and suggested 40. It seems for other conditions the number is less. To form a new blood supply to the portions of the bowel that have had the blood supply damaged, I guess takes time. I guess in many ways it is much like the patients with chronic wounds.
It is hard to have a problem that nobody really understands, I do not fault anyone for not understanding it, I really believe that my oncology doctors do not fully understand this disorder. My vision has gotten quite poor over the past few days, and I was telling a friend about it and she said.... "and you are doing this, why????
Cancer is easy to understand, everyone has been touched in some way by cancer at sometime and know what a relentless disease it can be. Most of the symptoms I am having everyone has had one time or another with the flu etc, so it must be hard to imagine why someone would go through 8 weeks of treatment for this. But like everything else I have read a multitude of journal articles, and this is clearly not something I want to have the rest of my life, and the progression of scares me to death, especially if there exists a treatment, so for now I feel that as long as Ken and I understand it, that is all the matters.
I got fed up with white hair, so I have tried a colour, it is just a temporary colour until I can get into my hairdresser, but being in Eugene on weekdays makes it hard.
I am quickly remembering why I have had long hair all my life, I usually never have to do anything more that just comb my hair, and of course with chemo, I had nothing to do.
Now it seems that something is needed, my hair is just a big mass of hair with no shape, so I have purchased a curling iron (years since I have used one)
I think that this is just going to be a phase that I have to grow my way out of. I was thinking the other day about the old bumper sticker. "if you are going to say no, do it now before I spend all my money on you"
I have been thinking the same thing, ..... if I am to get a recurrence and need chemo, I would rather it sooner, before my hair has all grown back...
I guess I am just at the stage of being interested in my appearance sometimes, for the first time in over a year.
I do feel fortunate to have hair and it clearly is much thicker than it was before and it was thick before.
I am extremely excited about my "nursery". I have about 300 little plants growing in my green house. Why so many? Because that is how many came in the pouches.
I read Barbara Kingsolver's book a few years ago "animal,vegetable, miracle" how she and her family managed to live a full year on what they had grown, or bought at the farmers market.
Upon reading this, I resolved that I would like to do this, or something like this. Last year plans just fell apart, and I grew very little.
So that makes this year even more exciting, and to have a garden over here in Eugene where it is much warmer in the summer than Bandon. So I plan to grow tons of tomatoes and peppers and basil ...and beets and I am even going to grow cantelope, (which I also have growing in the greenhouse now)
I guess in many ways this is part of what makes this radiation enteritis hard to accept, it would be EXTREMELY hard to live off the land if you were unable to eat any fiber, and living off the land is one of my dreams. The main source of protein would be beans, peas and lentils, 3 things I definately cannot eat right now. So many of the anti cancer foods that I have been developing into my diet over the past year, I cannot eat now. I do feel that much of what set me back this past weekend was asparagus, which was one of the main anticancer foods.
ANYWAYS, I will stop lamenting here.
It was brought to my attention that yesterday was the one year anniversary of this blog, so happy anniversary
Love Janet
jankenb @ gmail.com

Thursday, March 4, 2010

myopia and presbyopia

Well a wonderful celebration last week, Ken figures we should celebrate every 3 months..... figures.
We had a wonderful scallop dish for dinner with "the prisoner" wine. VERY SPECIAL, our favourite. Kind of ironic, a year ago, 2 nights before my surgery, our friends here, Mark and Linda had a party for me, I guess I preop party. Ken and I in our getting ready to come over to Eugene, forgot our bottle of "the prisoner" that we had planned on drinking at the party. So to make up for it, we stopped the whole food market and bought several bottles of wine, that had birds on the label. It was an interesting way to select wine, but actually they were pretty darn good. We had another wine that night that was called "3 legged dog", which of course also had a 3 legged dog on the label.

I had my 12th hyperbaric treatment yesterday and so far so good, they are going well. I have found that when I wear my reading glasses to read on my computer that everything is fuzzy, and when I take them off everything is fine. From what I gather my "presbyopia" (age related farsightedness) has improved.
During normal vision, light passes through the cornea, the clear covering of the eye, and then through the pupil, which is actually a hole in the colored part of the eye, or the iris. Light then passes through the lens, which focuses the image on the retina at the back of the eye. At this point the image is converted into electrical signals that are sent to the brain.
A person who is nearsighted (myopia) sees nearby objects clearly, but due to the shape of the lens, the images of distant objects are focused in front of the retina, making the images blurred.
A farsighted person (hyperopia), sees far away objects clearly and nearby objects appear blurry because the lens focuses the images at a point behind the retina.

http://video.about.com/vision/Near-Far-Sightedness.htm
So with myopia, usually the problem is related to the lens, and with presbyopia the problem is related to the shape of the eye, as you age and lose elasticity of the tissues the eye becomes more oval shaped as opposed to round, so the lens focuses behind where it should.
So if I am becoming more "myopic" that means the effect of the treatments are causing refractory changes in the lens so as to move the focus forward, and closer to where it should be.
So it seems that for a time, I might just have NORMAL vision.
Well at least normal "near" vision. I think my distant vision is deteriorating, Ken can see distant signs better than me, and usually it is the other way around.

Other things, I have not had nausea in a week, I still have the burning lower abdominal pain, but it is quite tolerable and I only take something when it keeps me awake at night.
I have had no bleeding for a week now, either.
Chewy and I are doing well over here, I try to take him for a walk every day around the block, he is not used to walking on a leash, and I am not used to picking up his poop. He looks at me SOOO WEIRD when I do. There is a house near the end of this road with a HUGE dog that sits in the window all the time. When Chewy goes by the dog gets VERY excited and starts heaving himself at the window, as you can imagine Chewy rescinds by heaving himself back at that dog, at the end of the leash, which is not doing my shoulders ANY good. So I try to make a very wide berth around that house. I keep wondering how long the window will last.
I have never seen so many movies. Last week was Meryl Streep week, saw Julie and Julia, then The devil wears Prada, then Rendition. To watch one actress play those three parts was amazing, she is so versatile.
This week it is Brad Pitt, saw "the curious case of Benjamen Button", and then "Glorious Basterds", again quite a change in acting. I found for being in the chamber, Benjamen buttons really dragged on, but Glorious Basterds, it seemed the treatment went very fast.
Today it is back to Meryl Streep and "Lions for lambs" thought I would like to see her in a "positive" role, a good guy.
Looking forward to seeing Ken tomorrow and a few days in Bandon

Bye for now
love
Janet Bates
jankenb @ gmail.com