Monday, August 31, 2009

Tons of tomatoes



Hello everyone
Having a very exciting day today. The realization that this is almost over is really starting to sink in as I emerge from the most recent chemo "tunnel".  It is funny sometimes that you do not realize you are in a tunnel until you come out of it, like you did not realize you were feeling badly until you are feeling better. The last few days have not seemed too bad until I woke up today feeling great.  The best part of it all is that it seems that it is only uphill from here. 
Having a lot of generalized pains from the Neulasta, which I will take any day over the nausea of the chemo.
 There is one thing that I think really helped me this time around and I would suggest for anyone on chemo.  I made casseroles. First off I made a scalloped potato casserole with tuna and other veggies ( I will post recipe once I write it out).  Then I basically ate it all day for a few days. Then I made a vegetable bean soup and had that for another two days.  I think that the key to these two meals was that they were light, mostly vegetables, and they both had a major protein source. One thing I have found over time with chemo is that eating usually helps  the nausea, as long as you eat the right thing, and thats the hard part. Keeping a little bit of something in the stomach at all times.

The other really cool thing is that my open wounds seem to have healed completely over the past few days, the rectal area "just feels normal".  I guess I was afraid it would never heal, so this is, I guess, a bonus.
I am just feeling so great about feeling so great, I just wanted to "share". I will never take "feeling great" for granted.

I think I feel like I might just make pizza tonite, I have all these tomatoes from my green house to use up, and the rosemary.......etc.
Love and peace
janet bates
jankenb @ gmail.com


Friday, August 28, 2009

last day 3

Hello everyone
Its raining, its raining......finally. Good for mushrooms, apparently good for fishermen (you learn something new every day.
The dawn of day three is going well thus far, had the most incredible sleep last night, and am feeling positive today. Somehow it is so exciting to know that there will be no more "day 3" and after tomorrow no more "day 4s" Took 8 pills this morning and apart from feeling a little groggy am feeling pretty good.
I did something really different yesterday.  Had this terrible pain in my hip and so Ken just drove me over to a massage therapist who got me in right away. It was the second massage I have ever had in my life. Sure felt good.
A lot of people have asked me about trying marijuana as a treatment, and I guess I have been sort of skiddish about this, though my first chemo oncologist told me right from the start what he would give me a permit.  I quit smoking cigarettes about 30 years ago, and am not to keen to put something on fire up to my lips, ever again.
Other people have asked about accupuncture, which I have not tried, however when I was up seeing the surgeon in Eugene (who had just returned to practice from breast cancer treatment...chemo and radiation) and she said though she was not previously a believer, that she found it worked well for her chemo nausea.
For me, I feel I have just a few more days to go with the nausea then I am home free, and so will stick to the pills I am on now. In many ways the harder thing for me is the horrible tastes I get that seem to make me nervous about eating anything lest it might give me a terrible after taste.
Yesterday went for walk in woods AND had a music practice, so all in all a good day.

love and peace

Janet Bates
jankenb @ gmail.com

Thursday, August 27, 2009

the morning after

Hello everyone
I have decided not to be so namsy pamsy about the drugs. And I had a great day yesterday, not that I can remember the whole thing.
This morning I have taken 7 pills and am considering another. I do not want to have any nausea.
I want this last chemo to go as unnoticed as possible :)
My CA 125 came back on Tuesday and is still 8 which is very good, any rise in it might be suspect of the ugly cancer rearing its ugly head......somewhere.
Dr Cook has ordered a full ct scan on the 9th of september, chest abdomen and pelvis with IV and oral contrast. Am looking forward to this, as yet another assurance.
I asked Dr Cook what would have made my ca 125 go from 29 preop to 61 after my first chemo, he said that the thought is that the first chemo has the highest "kill" rate, and that this likely represented the remaining cancer kill.
My CA 125 dropped down to 15 the next time and has been under 10 ever since.  So it is clear that the chemo has done something. I asked him a bit about the bone density scanning etc and he said that this is a whole new area in oncology and that is the long term followup of "survivors".  Since oncology is becoming more and more successful at "curing" the cancers, the side effects that occur down the road have not been looked at as much as they should have until just recently.  This is especially true for the younger and younger people who are being treated for cancers. He would not normally as an oncologist order a bone density scan, whereas my family doctor can and insurance WILL cover it based on the fact that I went through menopause 3 years ago. I think this is something that for much younger women going through radiation of the pelvis and low back, it should be looked at, and if present treated early. Why go through all this to cure a cancer only to have a hip fracture at the age of 60.

Well I am sticking to smoothies and soft cooked eggs on killer daves bread.

love and peace
Janet
jankenb @ gmail.com



Wednesday, August 26, 2009

the final insult.....or graduation:)


Hello everyone
My bloodcount went up over 10 times yesterday, and so here I am getting prepared for chemo, at NBMC right now.  We camped again under the stars last night, Ken set up the telescope and we all had a great look at the moon. Jaime, her kids, Josh and Ken and I played music and it was so much fun.  Jaime has a lab the same age as Chewy, named Cosmic, and the two of them ran around and around, and down in the pond and back up just long enough to shake on us all.  Rex, our older dog, just barked at the two of them every few minutes as it to say "quit it you whippersnappers, yer gunna take an eye out or something"  "bark bark"   It is so much fun to camp where no one else is.
I feel to day is the last day I will insult my body. From here on in I am going to compliment it everyday.  I am not going to poison it with chemicals that might damage it. I feel certain that my cancer is in some way caused by something in the food I have eaten, or something in the water I have drank, or something in the air I have breathed.  
So I am going to eat only foods that are organic, I have already ridded myself of any teflon type of cook ware, I am going to look further into our water supply, as we are on well water.  There are several cranberry bogs in the vicinity of our house, and I am going to find out where the chemicals that are sprayed on the cranberries end up.  ?? in our well??
I am going to be as kind to my body as I possibly can. I am going to floss more, wear sunscreen more, wear  my seatbelt as much, learn how to meditate when life is making me anxious, stretch before I exercize, and to GRADUALLY increase my running, when I get to that.  
I am going to learn to use the ear bud thing on my cell phone.
I am going to love my husband as much and more than I always have.
One day I am going to have a massage, and another day I am going to have a sauna.......and see how they go.  I am going to start making my own bread. I am going to try to start to write more songs (this I have had a hiatus from for almost a year). I am going to eat more ginger, turmuric and garlic, I am going to also eat more asparagus, spinach and dark greens. I am going to eat less cheese, drink less milk, and only eggs that come from grass fed chicken.  I will eat even less meat than I have and absolutely no cured meats such as ham, and sausage etc. I will eat MORE fish and seafood. I will make at effort at least twice a week to eat fish.  I will spend more nights staring at the night sky, it gives me persective.
I am going to become a paranoid neurotic for the next two years, and I am going to try hard to be a patient instead of a doctor when it comes to my own health, and ask someone else about everything I am feeling.
I might get a tattoo.

And right now I am going to thank so much all the people who follow this blog, it means so much for me to write this stuff down and it means so much more to know that someone is reading and as a medical provider, it means the world to me to know that some people actually benefit from my blog.

I will continue to post this blog and keep you informed of this final stage.
I am booked for a chest and abdomen/pelvist ct scan in two weeks. This will be very reassuring for me. 
Ken is going to make me an organic sandwich in the van, with tomatoes from our garden. 
Isn't he special
Love and peace
Janet Bates
jankenb @ gmail.com


Monday, August 24, 2009

fall crops




Hello everyone
Blood count still really low, so got neupogen shot yesterday.  I guess the area that was radiated makes up a large percentage of the bone marrow that produces cells, so it does not take too kindly to being radiated and then poisoned. 
Hematopoiesis is the formation of the blood's cellular components. It occurs in the marrow of long bones in children, such as the femur and tibia (the long bones of the leg). In adults it occurs mainly in the pelvis, skull, sternum, ribs and vertebrae.  Most of my pelvis, and the largest lumbar vertebra were radiated, so I guess that is what the problem is now.  Since these areas make up a large percentage of where the blood cells are formed, it is more significant than other areas of radiation. I guess I did not realize that the bone marrow would be so affected. While this area's damage can be permanent, other areas will start to produce more. (oh and the other areas will likely do a better job of catching up once I stop "insulting" what marrow remains).
The main concern with a low blood count is your susceptability to infection.  When your ANC (absolute neutrophil count) is under 1000,  your risk of infection is increased somewhat, when it is under 500 it is increased substantially.  The other problem is that your white blood cells are largely responsible for the symptoms you experience when you have infection. Redness, pain, swelling, production of mucus (in lungs) are all your bodies response to an infection, not necessarily the infection itself. So when your white blood cells are markedly decreased, so is the bodies reaction, so it is hard to even recognize an infection. 
So when the ANC is below 500 they often start you on antibiotics prophylactically.

Despite having a low ANC, all the cuts on my hands from cooking and gardening seem to be healing without getting infected. Oh and my garden is really doing well with all this personalized attention I have been giving it. I am getting a zucchini every couple of days, a few tomatoes a day a feed of basil for pesto once a week and enough peas to nibble on every day.
I have planted several fall crops, fall beets, fall spinach, Kale, potatoes and lots more peas. Lets hope it does not freeze here this year.

 I will go for another blood test this morning, somehow I think it is unlikely I will be getting chemo tomorrow, but will see.
Other seemingly good news, is that my LDH is back to normal range. LDH stands for Lactate Dehydrogenase and is a blood test that is done prior to each chemo. Mine was slightly elevated that past two times but normal now.  It is followed in cancer patients as a non specific way to possibly detect early recurrences. Many things make the LDH go up, and mine was only slightly elevated, but if it were to go very high it would mean that there was a high rate of cell turnover somewhere, and perhaps a sign to look further for recurrences or metastasis.

I have no hair now, and our son Josh is here now and I am trying to convince him I DID have hair a week ago, and that I DID look a bit like Annie Lennox.

wish me luck
love and peace

janet bates
jankenb @ gmail.com

Sunday, August 23, 2009

last days of summer

Hello everyone
Well I am anxiously waiting to begin the ending of all of this. My blood count is still very low, I will have another blood test tomorrow, and if it is still low, I will get a neupogen shot to see if 
it will bump up the white blood count enough that I can safely have my chemo on Wednesday.
I really feel pretty good, have been off mushroom picking everyday, which entails walking several miles.
I am shedding my hair rather rapidly now. If I wear black , all the hair I have shed shows and if I wear white, the dogs hair shows. For this week, I am winning.
 So what this means is that the ice I used on the first chemo this last set worked at saving my hair. My hair should have fallen out last cycle, but it is falling out this cycle, so it seems like it worked.  (I did not use ice the last time around)

The little 3 song sampler I sent around to a few of the radio stations has done well thus far this month, with 10 airplays (which gets it to the bottom of the folk dj list for August and still 10 days to go) Let that rich man pay for a change is the song that has thus far done the best.

love and peace
janet bates
jankenb @ gmail.com

Friday, August 21, 2009

5 more days to go


Hi Everyone
We are gearing up now for the final chemo, and looking at the bloodwork. 
I had bloodwork done on wednesday that the white blood count was low and the concern to the clinic. So because I was working today I had another cbc done, and this time my blood count is lower than it has ever been.
The blood count CBC, has different parts to it, and each affected by chemo, at different times.
The White blood cells are the ones that deal with infection, the platelets are responsible for healing of blood vessels to control bleeding. The Redblood cells carry the hemoglobin which is responsible for getting deoxygenated blood to the lungs to be breathed out as CO2 and then we breath in the O2 and the hemoglobin then carries the oxygen to the tissues.

The white blood count has different "sub" categories,  the neutrophils, lymphocytes, monocytes, and eosinophils. The most important group here is the neutrophils, as that is the group that fights bacterial infections, and this is the group that drops with the chemo.
A person who has AIDS has a problem with the lymphocyte count, which is the subgroup that fights virises. Eosinophils more often go up with allergic reactions.
My total white blood count today is 1.6  (normal 4-11),  but the absolute neutrophil count is only 880. In order to give chemo it must be over 1500, and below 500 they start you on prophylactic antibiotics. So I will be rechecking on Sunday, then on Monday, and if still very low, they will give me  a neupogen shot to bump up my WBC so that they can give me my next chemo.  The shot I have gotten a day after each chemo has been neulasta, which is a longer acting "colonly stimulating factor" than is neupogen. So it seems that this last time around, perhaps the bone marrow is getting worn out.
I really hope I will be able to have my chemo next wednesday (the 26th) as planned, as we have planned our fall trip around me being feeling better by mid September.

SO it will be an interesting week, seeing how all this goes. 

Love and peace
Janet Bates
jankenb @ gmail.com

Thursday, August 20, 2009

radiation and osteoporosis


Hello everyone
Have had the most amazing last couple of days. Two nights ago we went and camped atop Langlois Mountain at the Langlois Mountain retreat. The local Port Orford "astronomical" club 
met up there and brought their large telescope. Ken and I just went along as friends of the owner of the retreat, Jamie. Ken and I both felt it was the most wonderful night we have had since the beginning of all of this.  We went  up a little early, took a long all the fixings for a great salad. The dogs just ran wild as there was no one else there, and save for the occasional bleating of a lamb, there was no sound. From up there we could see miles of the ocean beaches from Bandon on down to Langlois, we could also see for miles in every other direction. Jamie then came up and we played music while the astronomy group set up their scopes, and started to zero in on Jupiter.
Once it got dark, Ken got out this cool little application he has on his iphone to identity the constellations etc.  Me....I just laid back and watched for shooting stars and satellites.
I do not think I have ever done that,  where I had a 360 view of the sky. Most mountain tops have trees in the way. We met a whole bunch of nice people we did not know and the whole experience, I thought, was perhaps a good first step on getting on with life.
How do you get on with life after something like this, when your whole focus as been so ...narrow... for so long.
As a second step, we spent several hours yesterday getting our garden in shape and planting. Our garden now is beautiful, we put down this thick recycled paper over all the weeds and then a thin layer of pea gravel. So now what little I have that is growing in the garden stands out from the weeds. I am starting to plant  my fall crops, I feel all the plans I had for my garden this summer sort of fell through. The tomatoes in the green house are incredibly healthy as are the basil, because that is where I have focused, so hopefully we can also have  a fall crop and it will be one of many things to divert my focus away from this cancer stuff.
I guess it is all part of my plans for "when I am feeling well"
One of my big plans for when I am better is to start running, but I am thinking very cautiously there though. My muscles and joints certainly seem to have taken a hit from all of this, however part of all the muscle and joint pains could just be the chemo drugs.

I am mostly worried about my hips and running.  Osteoporosis is a skeletal disorder characterized by low bone mass with microarchitectural disruption and fragility, resulting in an increased risk of fracture.  Estrogen inhibits bone resorption and, after the menopause, estrogen deficiency results in increased bone resorption and rapid bone loss. I gather I went through menopause about 3 years ago, which by the way is the average. Age 50.
I have long felt that I was low risk for osteoporosis because of  my running. I have been a long distance runner for the past 17 years or so, and it is the constant weight bearing impact on the major support bones that improves density and prevents bone loss. Weight bearing exercise does not have to be running, walking does the same thing. 
In fact cycling does not though. Ken and I for the past 12 years or so have taken every Friday off and went off to the forest. I run and he cycles, and for many of these years, we did a 21 mile cycle every Friday. Some Fridays we did more, up to one Friday I actually ran 35 miles. Over the past 5 years, life etc, has somewhat abbreviated this distance to the point that the last time we went for a run in the forest was the week before this cancer was diagnosed and I almost fainted. Ken has always worried that he, as a cycler, was not maintaining his bone density as I was.
The really new worry is that radiation to the femur, which occurs in the treatment of endometrial cancer, along with cervical cancer, prostate, and anal cancers, increases the risk of hip fractures (from osteoporosis) up to 600 percent. My lower spine was also radiated and and this is another area that fractures commonly occur with osteoporosis.  (the femur is the bone that joins up with the pelvis to make the hip joint, so a hip fracture is actually a femur fracture).
So anyone who has received radiation for any of these cancers is at a very high risk of osteoporosis in the bones that were radiated.  This does not seem to be a well known fact, and I think it should be. I plan to go for a bone density scan after I am done all of these treatments and if need be, go on meds to build the bones back up, well at least look into it.
From what I have read, the problem exists, but what to do about it has not been determined,

I will keep you posted on what I find.

Love and Peace
Janet Bates
jankenb @ gmail.com

Sunday, August 16, 2009

losses and gains


Hello everyone
Well it is day 12 of my second to last chemo cycle, and I am doing pretty well. I am feeling back to normal. ( this is the part where the bloodwork takes a dive, but I feel the best)
So next time when I am whinging about how lowsy I feel at day 8, remind me about day 12.

Have been having fun with the music lately, in fact moreso than I have in a long time. I guess the music has taken on a new meaning for me.
Although I have recently been lamenting about parts of my body that just are not going to function the same as before, perhaps some are better.
Several people have heard bits and pieces of the new cd and one thing they comment on is how much more clear the vocals are than in any cd in the past. I just tell them that its just the bondage of useless organs like uterus and ovaries that were holding me back. However truthfully I really have a whole new "freedom" when I sing now, I guess a freedom from any sort of pressure.

I believe it seems to have all come together for me recently, so perhaps I see it as the balance for the losses, are the gains elsewhere.
So the cd is at the manufacturer now and they will start work on it on Monday. It should be in my hot little hands by September 1. If anyone who reads this blog would like a copy of the cd "hot off the press", email me at jankenb @ gmail.com (without the spaces) and I will tell you how.

I sent a little sampler (3 songs) out to the radio stations that had played my music in the past, and have already in the first week had 6 airplays.

Am anxiously awaiting "fall out day" day 14, to see just what is going to fall out.

love and peace
Janet Bates
jankenb @ gmail.com

Thursday, August 13, 2009

good blood counts

Hello everyone
Today is another day and seems to be better.
I have been trying to figure out why this times is so much worse than the last one and it may be for a positive reason.
As I have explained in previous blogs, I receive a shot the day after chemo (neulasta) which is a "colony stimulating factor" which is essentially a growth factor for white blood cells.
When the marrow is healthy and a person recieves neulasta, the response can be significant. The bone marrow, when stimulated, can cause extremely high white blood counts and subsequent pains in areas of cell production...ie bones.
After I finished chemo, I think my bone marrow was a bit worn out and even though I received the neulasta my blood count did not go up very much, and this round of chemo had to be delayed as a result.
My blood work this time around is much better, in fact my white blood count on the weekend was actually very high. The count yesterday was also above normal. So what this means is that
the bone marrow is working hard, and effectively raising the counts. However this is likely why I have not been feeling well, but also a sign that as the neulasta wears off, I will feel better.

The reason neulasta is used is to shorten the time in each cycle that the blood count is low (and thus shorten the time that the risk of infection is high). It is only given with chemo agents that are at a high risk of causing these types of infections. It is not used when a person has a leukemia type of cancer, as the last thing you would want would be to give a growth factor to the bone marrow cells, which are already producing out of control.
There are some concerns that Nuelasta might also cause the growth of other cancers, such as bladder, bone..
It makes me kind of nervous, and I have thought about not taking it, but then....what about infection? Everything is such a balance between risk and possible benefit, and it is never quite as clear, it seems, as in the treatment of cancers.
Music tends to cure many things, and yesterday we had a great practice with Jamie, and somehow "life looks better"
We are going to play at the Bandon Farmers market this Saturday, in old Bandon, across from where Rayjens used to be.

That is, if it does not rain

Love and peace
Janet Bates
jankenb @ gmail.com

Wednesday, August 12, 2009

mid august lament

Hello everyone
This chemo cycle is somehow worse than the previous ones. I guess I was thrown off last time as it was a breeze......at least that is how I remember it now :)
I have had more generalized pain, more nausea, more fatigued....more easily sort of breath....generally feeling unwell.
I guess then I get more down about it all, it certainly seems to be a cycle, my mood is up and optomistic when I am feeling well. I guess with all the aches and pains, it is hard not to worry about recurrences etc. I wonder if some of the abdominal cramps etc might be due to having had radiation to the area, and now exposing the area to chemo.........or maybe I am just being impatient.
I think of all the things I would like to be doing, if I felt up to it this summer, but I guess it will be one summer I will just write off. I look at all those folks cycling the oregon coast this summer and I am SOOO envious. I am even more envious when I see someone out running.
Perhaps I will chalk this year up to the year that I sacrificed so that I might have many more and just hope that it works out that way.
SO THERE, enough feeling sorry for myself.
I swear my hair is just getting odder and odder.
It does not seem to be how anyone else describes their chemo hair situation. I will try to get a more recent photo to post.
Basically what I have now is a matte of thick white hair. Everyone tells my how "cute" it is.
All of the dark hair that grew when I finished radiation, is now gone and all that remains is this white hair. The best way I can describe it is a thicker version of the white peach fuzz that I had during the first set of chemos.. It is clearly better than not having any hair at all, and perhaps it will stay until the real hair starts to come in, which I would expect perhaps by the end of September. Somehow it seems that focusing on silly things like hair is a good distraction some days..
I think that what happens with my hair is a bit different because my treatment is not really common, ie to have chemo, then radiation, and then chemo.

I think that my open wounds are becoming tolerable, and seem to become more inflammed at times and then they settle down, I think I will just have to learn how to best deal with them.
I recently read an article that suggested the use of moisturizers to the area that was going to radiated BEFORE you started. I guess I am beginning to accept that the body might not be quite the same as it was before all of this, but I just hold out hope that I will be able to run again.
Running has always been such an important part of my life.

Ken recently put to words, how to descibe how these past months have gone for us.
On the bad days, you just wait for the day to end, and on the good days, you look forward to the next day. Right now I am just waiting for September.
Thanks for reading this, sorry to be such a downer.

Love and peace
Janet Bates
jankenb @ gmail.com

Sunday, August 9, 2009

nausea with chemo, and recipe

Hello everyone
So glad to be nearing the end of this. Yesterday was about the worse day of chemo thus far. At least last evening was. Despite all the meds, I just had to try to lie still to stave away the nausea. Then today is the postmortum trying to figure out what i did wrong. What I shouldn't have eaten, what I should have eaten etc.
Today seems better though.
It just seems as though the whole gastro intestinal track, just shuts down, or at least slows down considerably. You eat, you drink, then your abdomen looks like you could be 7 months pregnant, and then you get nausea. Just nowhere for it all to go.
Speaking of food, several have asked for my recipe for my birthday cake. Zucchini cake (which I altered to make more "healthy" To make it into a cake I just used a cake pan and iced it with lemon icing.

  • 3 cups shredded zucchini (about 3 medium)
  • 4 cups all-purpose flour (I used half whole wheat)
  • 1 cup plus 2 tablespoons granulated sugar, divided (I used half Steiva half sugar)
  • 1/2 cup chopped walnuts, toasted
  • 1/4 cup packed brown sugar
  • 5 teaspoons baking powder
  • 1 tablespoon grated lemon rind
  • 1 1/2 teaspoons ground cinnamon ( I also added 1/8th of a cup of turmeric)
  • 1/2 teaspoon salt
  • 1/4 teaspoon ground nutmeg
  • 1 1/2 cups skim milk
  • 6 tablespoons vegetable oil (I used olive oil)
  • 2 teaspoons vanilla extract ( I used almond extract)
  • 2 large eggs
  • Cooking spray

Preparation

Preheat oven to 350°.

Press zucchini on several layers of paper towels. Cover with additional paper towels; set aside.

Combine flour, 1 cup granulated sugar, walnuts, and next 6 ingredients (walnuts through nutmeg) in a large bowl; make a well in center of mixture. Combine milk, oil, vanilla, and eggs in a bowl; stir with a whisk. Add zucchini; stir. Add to flour mixture; stir just until moist. Divide batter evenly between 2 (8 x 4-inch) loaf pans coated with cooking spray. Sprinkle each with 1 tablespoon granulated sugar. Bake at 350° for 1 hour and 10 minutes or until a wooden pick inserted in center comes out clean. Cool 5 minutes in pans on a wire rack; remove from pans. Cool completely on wire rack.


Saturday, August 8, 2009

lentil casserole

Hello everyone
Well day 4 is going better. I did not take the steroids prior to this last treatment, as I thought since I had been through 4 without a reaction I did not need them. I did not have a reaction, but I had thought that the steroids were causing some of the gastrointestinal problems. Turns out, perhaps they were helping.  So took some yesterday and felt a lot better.
The other thing about the first few days after chemo is that I have insatiable appetite for protein. On Thursday night I went to a book club evening, and surveyed the food present and decided that chicken was it.......and then went on to eat the entire plate of chicken wings.  (ever heard of moderation?) (did I mention I was a vegetarian for the most part?)
Well I got a ride to the hospital ( I do not drive for the first few days after chemo because of some of the drugs I am taking, and I stay at the hospital in our camper van with Ken and the dogs when Ken is working in the ER), and had the most horrible night, heartburn, abdominal cramping and pain....and I thought back to the book club, the part where I said "I know I am going to regret this".
I wonder if by my 6th cycle of chemo I will have learned "moderation".
Last night I made a casserole and though I ate it all evening, I did it slowly, and it seemed to go down much better, so I decided to share it with you because it was so good.
The cool thing about this recipe is that you just dump everything in the pot and then put it in the oven. The other cool thing is that you can dump in whatever vegetables happen to be ready in your garden, or might soon be going bad in your fridge. I will include what I put in but feel free to "experiment"

Easy Lentil and Rice casserole.
2 2/3 cups of vegetable stock
3/4 cup of dry lentils
1/2 cup of brown rice
3/4 cup of celery (they suggest onions, but can't do onions now)
1/4 cup of white wine (sometimes I use red)
1/4 tsp salt
1/2 tsp basil, (I used a half cup of fresh basil From My Garden FMG)
1/4 tsp thyme ( I used 1/4 cup FMG)
1/4 tsp oregano(I used 1/4 cup FMG)
5 cloves of garlic
pepper
Here is where I got creative
2 cups cremini mushrooms chopped
one small zucchini (FMG)chopped
one red pepper chopped

usually I add grated parmesiano reggiano cheese, but seem to be intolerant of 
cheese right now, but it tasted great with out it

So you basically dump all of those things in a big pot in the oven, with a lid, and cook at 375 for an hour and a half.....or a bit longer

Great recipe for using whats in the garden, or whats in the fridge. I would have also put in peas, but am fresh out and on the way to the market in old town this morning to get more peas.

Peace and love
Janet Bates

jankenb @ gmail.com




Friday, August 7, 2009

day 3...and so this is chemo..

Hello everyone 
Well day 3 of chemo and I feel awful, just awful. Totally nauseated, and having trouble getting off the couch.  Now does that sound more like chemo is supposed to be like that what I have been portraying it as?  I feel worse that I did on the first cycle. However it is OK, now knowing how close the end is. I will just try to make the best of all the drugs and get past this.
No pictures my face is all puffy and my eyebrows are becoming bleak once again.
Just a bad day, will make it through and tomorrow will be better.

Love and peace
jankenb @ gmail.com
janet bates

Thursday, August 6, 2009

the final steps for a finished cd

Hello Everyone
Well day 2 is going well, the IV fluids make this so much easier, as I have a lot of abdominal cramping with everything I eat. (that is new)
Big day for the cd today, it was mastered yesterday, and today and last night I am downloading it. Usually a copy is sent to the artist to CHECK for errors etc, however the only other day the masteror can work on this is tomorrow, there was not time, so I am downloading. There are the official files so are not compressed like most music sent over the internet. Most music you can listen to are mp3s which are compressed and are not quite of the same quality as the actual wav type files which are what are on the actual cd.
For some reason the internet is slow yesterday and today, so it is taking forever. On the last song now. From here I will burn a cd and listen several times and figure whether this is the cd I want to go the the manufacturor. I will email them, and they will send a formal copy of the cd (a special kind of disk). The manufacturer actually presses that cd. which means they make a mold of it and use the mold to mass produce (well in my case I would not call it "mass" production), usually 1500 cds. The previous ones are taking up most of the shelf space in my garage.
ANYWAYS...
The other thing I am doing is proof reading the final booklet. It is mostly finished, except that they cannot finish it complelely until they get the actual song times from the mastering studio.
The mastering studio is where the song gets trimmed at the ends to make for smooth endings.
If all goes well Tracy Grammer, who has been doing the editing and more or less overseeing the cover production, will check everything over and it will get to manufacturer. From there they do a rough run print of the cover and send usp to me to check ( this step takes away another few days from the project and nowadays they will let you OK the colours etc online)
Then once everything is finalized at the manufacturor, there are 10 working days to get it done.
They will send 500 unsealed discs to me, for me to send to the radio station. I have a promotor helping me with this part. The rest I will stack, ......with the rest......in my garage, on the shelves.

that is the story of my cd as it sits today.
Day 2 is usually a pretty good day as far as fatigue, so lots to get done before tomorrow, which is not always a good day for fatigue.

Love and peace
Janet Bates
jankenb @ gmail.com

Wednesday, August 5, 2009

5/6 chemos

Hi Everyone
I passed the test! Second time around.
My bloodwork just squeezed through this time. So I am getting my infusion right now.  I have been thinking of how similar chemo is to going on a flight. We book it in advance, we bring along movies, books and crossword puzzles. It seems to take the better part of a day.  You always feel worse when you leave than when you arrived.  Going to the bathroom is DIFFICULT. (on the plane you have to crawl over people, in chemo you have to haul all your stuff along)
It is expensive, you cannot get your money back. You sit around all day.  And oh by the way you feel worse when you leave than when you arrived.  They have little blankets to put on your little lap. You are limited to where you can go, in chemo you cannot leave the room (because if the drugs for some reason spills on a carpet, it destroys the carpet)....on a plane, well that is obvious.  Makes you wonder how your veins can tolerate something that destroys carpets.
Believe it or not I am sitting here munching on a bag of cheetos. Why? ??? 
I have NO idea. They taste great, and I know I will regret it. To the Canadians reading this, cheetos are similar but not quite the same as cheesies.  Does this remind you of a flight, eating something you know you shouldn't but it is there. One significant difference..... my steward is MUCH cuter than on any flight......Ken...and more attentive!

The really BIG news is that my cd is being mastered today in New York today.   Mastering is the final stage of a cd, prior to sending it to be manufactured. Although I do know what it means, I really cannot explain it, so I defer to Wikipedia
 http://en.wikipedia.org/wiki/Audio_mastering.
So once I download what is being done today, and approve it, then the mastering technician will send it to the manufacturer.  From there 10 business days to sending it out to me.
So pretty darn exciting.  Getting this cd and starting to get it off radio stations will likely fill the void that ending chemo will leave in my life.
I hope everyone recognized Obama's birthday yesterday.

Love and peace
janet bates
jankenb @ gmail.com

Tuesday, August 4, 2009

"Makayla" at Bullards beach

video
Hi Everyone
Ken and I are on our way to Eugene.  I guess it has been an interesting spring and summer, but one of the good bits is that Ken and I have basically been joined at the hip for months now. Not that we are not always close, but we do almost everything together now and it is wonderful.  He is absolutely the best mate for this kind of thing. He seems to just know always what to do and how to be.  When I am upset he is quiet and listens, when I am really upset he cries too, and then when I cheer up he cheers up just as fast. He is always trying to find ways to make the difficult bits easier, and gets frustrated for the things he cannot fix for me. When we had the fire, he said the only other time he had felt so impotent was with my cancer. He could not do a thing about the problem, just work away at the edges.
I am so looking forward to go off on a trip that has nothing to do with my health.  In some ways today seems a bit like that because this is just a sort of routine follow up visit and no other commitments or things to stress about.
We did go and find a ton of large lobster mushrooms, though I am not giving the particulars here, but we did celebrate my birthday, and were able to share the cake with fellow mushroom hunters. Could not have been a better birthday.
We got home a little late to make my favourite pizza, as I had not premade the dough. So we went to Rays, bought a pizza, took all the stuff off of it and made my favourite pizza, Shrimp, rosemary and capers.
I have decided that for future birthdays, to look at them differently. Instead of celebrating them, I envision a  very quiet "thank you" moment......to whomever, and whatever has allowed this body to keep "living" for another year.
I have included a video of our show at Bullards Wednesday night, joining us are Mark Dievendorf on drums and Jamie Sterling on violin

Love and peace
Janet Bates
jankenb @ gmail.com

Monday, August 3, 2009

chemo cancelled

Hello everyone
Ken and I got up and packed for a day of chemo, computers movies, snacks, crossword puzzles etc, and..... my blood counts were too low, so I was unable to get chemo today. My absolute neutrophil count was 1200 and the lowest they will give chemo is at 1500. My blood count has been this low and lower, but not on the day of chemo, so this is the first time they have had to cancel. We are rescheduled for Wednesday and I am certain it will be fine then. 
You see the monocyte count on todays bloodwork was high, but that is not what they are looking for, however the monocyte count goes up the day before the neutrophil count goes up, so it will be up soon.
So I guess Ken and I will just go picking chantarelles for the day instead. This will make the appointment in Eugene tomorrow much better.
I guess I was afraid that this would happen. Ken and I have a big trip planned up to Canada at the end of chemo. I have worked it out that we could leave about 3 weeks after last chemo. We have Ken's ER shifts organized and my hospitalist schedule organized, so it would be a real pain if we have any more delays.
I made a birthday cake to bring in today, it is basically zucchini bread/cake with turmeric and ginger. I wrote on it "and many more......"
So I guess we will just eat it.  
Anyways it is a disapointment, but it was inevitable that at least one would likely be delayed.
love and peace
Janet Bates 
jankenb @ gmail.com
PS I am going to post a video of the concert the other night here when Ken gets around to reducing it to a size that fits on blogspot



Sunday, August 2, 2009

pre chemo

Hello everyone
Getting ready for chemo tomorrow. Forgot all about the ginger, and so have no sugared ginger today. The only place that sells it in Bandon is closed today. So just went down to grocery store and bought some ginger root and cut it up and put it in a smoothie. Tasted great.

Although I am afraid to say it for fear of being wrong, I think my wounds are pretty much healed.
I have been extremely dilligent on the open wounds on my perineum, with cleaning and protecting.
These wounds have been there now for 3 months. 
Essentially an open wound is where the top layer of skin is gone and the underlying tissue are exposed. At the end of radiation when the wounds were the largest, I would say that the total size would have been 3 cm squared.  Over the first couple of weeks after radiation  they fairly quickly went down to 1.5cm x 1 cm, and this one lesion has been the persistant one.  This whole problem has been adjacent to the rectum, so quite obviously a hard area to keep really really clean.  I initially had used watered down hibiclense which had been suggested by radiation clinic.  When the wounds did not seem to be healing I consulted my "wound care guru" in Portland who said that hibiclense destroyed the cell membranes, thereby "preventing" wounds from healing.  She suggested Aloe Vesta foam, which I have been using for about 6 weeks now.

Initially  when I started radiation, they suggested to stop using toilet paper and to use baby wipes to be gentler. This was in anticipation of the diarrhea from radiation. I did not really get the diarrhea, but the whole area broke down from the radiation towards the end. I went to costco and bought one of those party packs of facecloths. The really soft ones (pack of 20)
What I have been doing for a few months now is to cleanse the area several times a day with the aloe vesta foam and soft facecloths, and then I put  Aquaphor ointment on the area to protect it.
When I was worried about infection I used clindamycin gel as well. The area had almost healed before I started chemo last time, then opened up again.
Hope it will not do that this time.
The only part that is not healed is an area of what we call in medicine "hypergranulation tissue", otherwise known as "proud flesh". It is often seen when wounds heal slowly like this and there is essentially an area of underlying tissue that ends up "on the outside".  This will need to be removed and that is not usually a big deal, I will just have to find out how to do that in this area. In other parts of the body, I usually use silver nitrate sticks to get rid of the hypergranulation.
On Tuesday Ken and I are going to Eugene, I have appointment to see Dr Dotters, who is my surgeon. I have not seen her since a few weeks after the surgery. I guess she will examine me, and set up some sort of schedule for followup for the next few years.

Peace and love
jankenb @ gmail.com