Monday, December 14, 2009

December update


Hi Everyone

I guess I figured I would try now to make an update once a month, as life has really become further and further away from this original journey.

Much less to report.

Ken and I performed at the Eugene Holiday Market on Saturday with Mark and RIck and we had a great time. It was the first time ever I have performed with out even a smidgeon of nervousness, it is funny how life's "experiences" change you. It was great fun, and Ken announced half way through the reason for my "unusual" hairdo, and asked if there were any other "survivors" out in the audience. At the end of the show a man came up with his daughter (a girl of about 8 who had been dancing in front of us for the whole show) to say that she was a 3 year survivor. She certainly looked healthy and father sounded certain that they "had it beaten". I could not help but feel sad to think of what it must be like for a child to go through all of this.

Since I last wrote, I finally went to see Dr Cook about my groin pain etc, and he ordered an MRI, which was normal. My CA125 has been very low now for about 5 months, (the tumour marker) which is great and very reassuring. So I am almost to the one year marker with no signs of recurrence. Yahoooo.


A few weeks ago I had what I can only call a "breakdown". I was faced with an unrelated stressful situation and I just became profoundly depressed. I suddenly felt worse than I have throughout all of this. In working through it all, I realized that more than anything it was a huge empty space in me. When this cancer was diagnosed, I had only just dropped my youngest off at college (became an empty nester), I had been working on a cd for over a year and 4 more before that had filled my life as well. Then with all the fears and time commitments of this cancer and the treatments, life has been very full. Suddenly it is very empty. It is empty of bad things AND good things. After a few days of ruminating about all of that, I realized I just had to "fill it up with good stuff"

And that is exactly what I have been doing. It is unfortunate that this is not a time to begin a garden, but one can think in that direction. We are having at least 2 "band" practices a week, which are more "therapy" for me than anything. We do get better with them musically as well. :)

Oh and mushrooms, I have filled my life with mushrooms, where/when to get them and how to cook them.

Ken and I both realize we have been through a lot in the past 8 months, sometimes I think that he has been through more. We spend almost all of our time together, in what is essentially a comfort zone, we are very kind to each other.

We made a plan the other night that in the spring we are going to drive to the Grand Canyon


Physically, my blood counts finally came back to normal, or close enough to normal. It was kind of funny, a few weeks ago, I saw Dr Cook, had the blood work done, and it was normal (for the first time in months) and I got a cold the very next day. So I took ANOTHER week off work to protect other people from me.

My bowels are clearly changed, I go 6-7 times a day and often pass mucus. The vagina has to be stretched quite regularly, 3-4 days without stretching and it begins to close in.

I went for a bone density scan a few weeks ago. They sample from the hips and from the vertebrae.

I am not sure which vertebrae they use, but my vertebrae was normal, but my hips got a t score of -2.2 and if it is below 1.5, they suggest you begin treatment.. Having been a long distance runner for so many years AND no other risk factors, it does seem odd that I would be so close to osteoporotic

I am thinking this is related to the radiation.

I will go on the meds that rebuild the bones, such as fosomax, actonel etc.

Interestingly enough, a study just came out that same day, that showed that women who were taking the meds for osteoporosis for 5 years, had a 30% lower risk of breast cancer.

I would suggest a bone density scan for anyone who has had pelvic radiation.

I will likely repeat the bone density scan in a year to make certain the Tscore is improved.

The cool thing about these meds is that they now make one form that you only have to take once a month.

I still have some numbness of my right foot, but it is mild.

Having said all of this, I do not regret for a moment having been through chemo and radiation. From all I have read, they likely have saved my life and so these "nuisances" are just the price.

I feel so fortunate to be in the financial situation to have been able to recieve the full chemo and radiation suggested, as I am aware that others without insurance might not even get surgery.


WIth that in mind, I am throwing around the idea of doing a concert with 2 other "ca survivors" in an effort to raise funds and awareness for those who cannot afford cancer treatments. I am not sure I have the energy to do the organizing for such an event, but will continue to look into other people who might help with that.

The way I envisioned it is, we could start some sort of "foundation fund" perhaps through the cancer agency for those who otherwise would not be able to get treatment.

Much Love

Janet

jankenb @ gmail.com

Saturday, November 21, 2009

Large mushrooms


Hi Everyone



I think that mushrooming is a lot like gambling. Once you have won big, it is SOOO hard to walk away from the table. Ken has just dragged me out of the forest after 3 hours spent searching for another Matsutake. The picture I will include is the massive one I found a few days ago. Pretty hard to improve on this one.  It weighed 2.5 lbs.  Today however we found some very large hedgehogs, in fact the largest we have ever seen, so it has been a week of records.

For thanksgiving dinner I am going to cook this monster Mastutake, stuffed with something like crabmeat so am now in search of a yummie crab stuffed Matsutake recipe. In the event that I do not find one, I will make one up.


We are on our way to Eugene now. During radiation treatment in Eugene Ken and I purchased a small house. Not sure if it was the wisest thing to do, but nevertheless we have it, and are calling it the cabin. Two of my sisters have cottages on lakes, where in the summer they go to get out of town.  We are essentially doing the opposite. We live in the country and are "getting INTO town" when we want a break.  It is pretty small, 800 square feet, and it is just perfect for us and our dogs. Life at the hospital in Bandon, has once again become stressful, and so it is nice to have an escape. And what an escape it is, we do not even think of work when we are there.

I have made a conscious decision not to let my life get stressful again.  A lot of stressors in life are really just how you view a situation, and by putting it into perspective, you can deal with it.  Asking yourself, is this really THAT significant a problem that I am going to let it affect me this much.  After all the reading on how stress affects cancers,  I guess I ask myself, "are you going to let this problem potentially feed a cancer", and if the answer is yes, then something has to change.  At least that is my plan for now.

Up until this week, in my role as Chief of staff at the hospital, I have been attempting to anticipate contentious issues and prevent them. We will see how this goes, perhaps I will become a farmer sooner rather than later. I wonder if they polled physicians who quit medicine if they would find out it is the politics rather than the medicine that leads them to do that?

The way I see politics, they are like a rapid flowing river. You have to figure out if you can survive the current before you jump in, and those who are very successful at it don't mind ending up a long ways down the river.

Well back to looking for a recipe for stuff matsutakes 


Love

Janet

Monday, November 16, 2009

matsutaki


Hi everyone
This week has all been about mushrooms. We have recently identified Boletes, and eaten them and yesterday I went out with Brenda and have a large bucket of Matsutakes  ( also known as pine mushrooms). We have not eaten them yet, but hope to once we get to Eugene today.
It is SOOO much fun going mushrooming these days because I now feel comfortable identifying 6 different types of mushrooms. This has been a great mushroom year because the rains have come but have left us with some clear days in between, AND it has not frozen yet. (at least this is my explanation)
Saturday was Ken's 55th birthday, and what a great day it was. We went out onto the trails, in fact to a particular trail.  It is called "8 ball", and the last time I ran this trail was the weekend before I went to the doctor, who did the biopsy that found my cancer. There are  a series of trails that Ken and I have done for many years, Ken rides his mountain bike and I run. The last time we did this trail, last Feb, I almost fainted. (that had never happened to me, and was partly the reason I started to get concerned about the chronic bleeding I had been having). So it was a very special and symbolic "run" for us. Ken said it made his birthday to be out once again on the trails after almost 9 months.
It was also the first time I have shaved my armpits in 7 months, but that is what Ken calls TMI (too much info), but once hair starts to grow it  GROWS.  I am not fertilizing it at all, it just seems every day it is longer, and thicker, and what is coming in now is basically black.  ?? Cannot say I was not warned that it would be weird. No sign of curl though, the hair that started growing 3 weeks ago is basically all dark black and straight as a board(my hair has always been pretty straight)
The blood count is still low (the white blood cells), but I talked to a nurse at the cancer clinic the other day who said that it can take 3-6 months for it to come back and that some people, its the hemoglobin that does not come up, and others it is the platelets, and still others it is the white blood cells.
At the surgeon's visit a few weeks ago, she did a PAP which is just a smear they do looking for abnormal cells in the vagina, she also looks at the tissues for abnormal appearing growths. The Pap came back normal. I would be extremely surprised if it were to come back there, the vagina was treated with brachy radiation, plus external beam radiation as well as the chemo.  I guess it was the most treated part of me, so cannot imagine anything ever growing there.....
The ca 125 is still 6, and from the recent reading I have done, in women who have had all of their reproductive organs removed it is usually under 10. I have also recently found out that a change in 15% of the ca 125 is considered significant. I also read one study that showed that a change in the ca125 can occur 6 months before a recurrence becomes symptomatic,  making it an extremely useful test.  The earlier you can catch a recurrence the better your chances of treating it,
The problem is that the ca 125 not useful in everyone. As many as 15% of people with ovarian or endometrial cancer will not have an elevated ca 125.  For now I am getting a lot of comfort knowing that mine is under 10, and has been there for several months.

So no cancer cell has risen from the ruins of the battlefield that my body has been over the past several months.
Ken and I had thought a few years ago that we would retire when he turned 55, but that is NOT going to happen.  Perhaps we will try for when I turn 55. We are having fun though with this working one week on and one week off. We are spending much of our "off" time in Eugene. It is kind of nice to have that separation from work, perhaps it is a good time to "practice" being retired.
I do have to say that I feel better every week, it is odd how you really do not know how badly you were feeling when you have been like that for awhile.  I hazard to say that I think I am feeling better than I was before my surgery. I guess I just did not know that something was wrong.  I ran from my house to the hospital the other day, which is 5 miles, and it was no problem at all.  Maybe I WILL do the Eugene marathon next year.
Peace and Love
Janet Bates
jankenb  @ gmail.com

Wednesday, November 11, 2009

penguin eggs


























Hi Everyone
I am quite excited, just got a request from  a folk music magazine in Canada called "Penguin Eggs" for a photo to accompany an article they are doing about me, my blog, and my new CD.
I think I will send them a picture Ken took at the run I talked about in the last blog.  It was last Sunday and Ken and I ran the 3 miles. ( Actually we got lost and Ken was sure we must have ran about 10 miles :) ) It may come to a surprise to everyone who knows us, but Ken is not a runner. I am sure the only reason he is not is because he ruined his knees playing hockey.  He clearly looks like a runner.  He told everyone he was so proud of me for doing 3 miles, but that he spent the  whole time wishing I would quit (so he could quit too).
There was a great turnout, so I hope they made a lot of money for Brandy and her family.
BTW, about my cd..... it charted at #12 on the international folk dj radio charts for October. 

I saw my surgeon last week in Eugene, she said everything looked OK. I guess I am a bit intimidated by her, and perhaps in an effort to not seem too paranoid did not tell her about a new groin pain I have for the past few weeks.  It is hard to know how to balance my fears with reason. Being left in a position with what I feel to be a 15 percent risk of recurrence, it is hard to ignore new symptoms. On the flip side, I have had a big operation, and two forms of radiation to the area, so many reasons to have new pains.  The best prognosis for recurrences is if they are caught early, but where do you draw the line on testing? If you did a ct scan every week, you would likely catch a recurrence early, but at what cost? The amount of radiation and the amount of unnecessary surgery would be phenomenal. The number of little things that show up on CT scans that turn out to be nothing, is high. This then leads to unnecessary surgery and increased risk of further complications.
This is essentially where medicine is these days with all this advanced testing that is available.
The best case scenario for a recurrence is that it will present with very clear symptoms, that clearly point towards a specific area.
With this in mind, I went today to see Dr Gruchacz, who is the Coos Bay doctor who actually made the diagnosis of my cancer, and is clearly the one who I am most comfortable with. She has this small old fashioned office that I just find more comfort in.  She did not feel anything there, but seemed aware that that is only so comforting. We decided that at this point we will wait and see if this pain settles on its own.
My blood count is still low (ANC is 1100 this week, under 500 is considered severe neutropenia, between 500 and 1000 is considered moderate and between 1000 and 1500 is considered mild) I am thinking it is 11 weeks since the last chemo, so it seems chances are it might not go back to normal. I am thinking that that is likely OK except for perhaps if I needed surgery etc., but I have not really found any info on long term neutropenia. I believe the lower limit of normal for ANC (absolute neutrophil count) is  2500.

I am currently trying to run every 3 days, and hope to gradually increase the mileage. I am getting less sore each time, so perhaps  I was just THAT out of shape.

Have a great week
love 
Janet Bates 
jankenb @ gmail.com


Sunday, November 1, 2009

boletes




Hi Everyone
We can now add Bolete mushrooms to our repertoire.  We picked this one  a few days ago and after much studying and testing we ate it, and lived. We also found that our tummies tolerated the bolete better than they tolerate chanterelles. So need less to say, all that I can find out in the woods today are chanterelles.
Hunting for mushrooms is so much fun, and I read somewhere that people who eat mushrooms at least 5 times a week have lower risk of cancers, and walking at least 5 days a week decreases the risk of recurrences in many cancers, so its a win win situation. We have been doing this for a few years ago, in previous years we just found it fun.
I have been running a few times now, but the pain in my legs lasts for 3 days after, hard to figure, but will keep going at it.
There is a 28 year old woman in Bandon who has just been diagnosed with advanced Breast cancer. She apparently found a mass in her breast after a recent pregnancy and in the subsequent investigation was found to have what appeared to be mets in several other areas.  She is currently awaiting enrollment in a clinical trial, and has started chemo in the meantime.
I think that this event sounds like great fun and for a great cause. So I am going to try to run the 3 miles this Sunday. Hope to see you there, Love and peace Janet Bates 

Thursday, October 29, 2009

I guess I am a runner

Hi Everyone
Well went back to work last week on Saturday and the hospital is very busy, so long days. My blood count had come up on the weekend, and was high enough to get the flu shot. They say your ANC needs to be 1000, I wanted to make sure mine was higher than that, to make sure it worked on me. So it was up to 2000. I had the H1N1 on Monday, but will let my immune system work on that for a week or so, and then get the seasonal flu vaccine. Hospital workers have gotten the vaccine earlier than others, I guess because we are working with sick people, and possibly passing things on to people whose immunity is down. I was thinking about it and also I guess if there were a major epidemic it would be pretty bad if all the hospital workers were off sick.
I went for a 2 mile run in the pouring rain today, so that (I guess) means I am a runner. First run in a very long time, so it felt great. I did change into dry clothes immediately .
Taking on a full hospital of patients is kind of hard in that I have basically been off for almost 8 months, (except for working a few days here and there) so Ken is working with me.
In fact we do pretty much everything together these days. It really works well, we both enjoy work more when we are both there anyways.
I have a followup with my surgeon next week, and am going through in my mind what I will tell her.  My gastrointestinal tract is clearly changed. I have a lot of abdominal pain that I did not have in the past, but it seems to be related to gas, I figure it is just par for the course having had radiation to the area. If I eat vegetables I tend to get diarrhea, not that that is going to stop me from eating vegetables. I think if I were not a vegetarian, it would not be as big of an issue.  Of course with the diarrhea there is more urgency .... getting to the bathroom.  I think that it will just take some time to sort out and learn how to "deal with" this new body. The way I am looking at it is that we all have different gastrointestinal issues, that we learn to live with. It took years for me to realize that I just could not eat spicy foods, and which ones in particular to avoid. I just have to "experiment" with this new GI tract.  I think it is just not quite as flexible as the old one.   
I guess personally now that I have "some" hair, I tend to forget that there is anything different about me at all. In the past 2 days, 2 different people have said to Ken " How is Janet?" and I was standing right next to him and they did not recognize me. I have decided that I am "in cognito" these days. I guess going from long blond hair to spiky white(clear) hair with a VERY dark base is a bit of stretch.  I have had several people tell me how much they like my "unique" hairdo. I have proceeded to tell them just how "expensive" it is to get this kind of "cut".

I will have to get Ken to take a picture........so we can look back years from now at each and every hair phase I have been through :)
love
Janet

jankenb @ gmail.com

Sunday, October 18, 2009

picking up where I left off


Hi everyone
 We got home a few days ago, and it is great to be back.  I feel like I am picking up where I left off last January.  We had just gotten Josh off to university, we had just begun our new life as empty nesters with all the freedom that entails, and whammo, in one phone call on the 15th of February it all came crashing down.  Ken and I had spent the previous fall trying to bring ourself closer to self sustainability. We had picked many pounds of mushrooms, and cooked and frozen them. We had bags and bags of blackberries for the winter. We had had a fairly successful summer garden and had plans to build on what we had learned about gardening. In the back of my mind I had plans for us to go in the next few years and start a farm.  Somehow all of that was gone with the cancer, all my dreams for the future.
Well somehow getting back to Bandon and feeling so well,  I feel that I have just picked up where I left off.(with a lot less hair)..... and a lot more insight into life.. and its alternatives.
  I have changed so much in the past 8 months, and I think it has all been good. A friend came over last night for dinner who had been gone for a year and 4 months. She had cycled across the country and back and she said that she could not remember when she felt happier, and I got to thinking that I would have to agree....me too.


I had bloodwork done on Monday and for some odd reason my neutrophil count is still low.  It is lower then it was when I had it checked up in Canada.  I guess it just takes time for new bone marrow to kick in and start making cells again.
The good part is that my CA125 was 6, which is incredibly good. This test was important to me, because this would have been the first time that I have not had any treatment. So the chemo was stopped 8 weeks ago, and no little "colony" of cancer cells has started up again.  We will be watching this closely for the next 2 years, but each time it is a huge sigh of relief when it comes back this low.

With all these muscle aches I have decided that it must have something to do with muscle loss.  Though I never really lost any weight during chemotherapy, I am thinking I likely lost muscle mass, with the toxicity of the drugs etc.  I am gaining weight rather rapidly now, likely for the same reason.
The bodies metabolic rate is largely determined by your muscle mass.  You burn calories every minute of the day, even when you are sleeping. It takes twice as long to build muscles as it takes to lose them. With the elderly since their muscle mass is so minimal, for every day spent in bed, it takes two active days to get back to the same muscle mass.
So I would think that I have lost muscle mass over the past 8 months and I need to get it back.
It will likely help my pain in my legs AND help with weight loss. The more pounds of muscle you have the more calories you burn whilst sleeping. We have a leg press machine, which we have almost never used, so I am doing that a few times a week and doing situps. (situps are weight training for your abdominal muscles) Since your abdominal muscles are a third of the muscles that support your back,  working on the ab muscles will likely help with my back pain which is also likely due to weak muscles.
For my health and future cancer risks I intend to try to keep below a BMI of 25, as this is said to decrease risks of recurrence.

I have included a picture of my hair, it is just so odd I wanted to share. The white (or clear) hair started growing within a few weeks of chemo and has grown in quite thick, however a few weeks ago the dark hair started to grow in underneath. What was left of eyebrows and eyelids on the left also fell out in past week or so. They have just started to grow in now as well.
I do feel much better about my appearance since my colour came back, and I got a little bit of hair, I am sure it will feel a lot better to have eyelashes too.
Thanks for reading all my "stuff"

love and peace
jankenb @ gmail.com
 


Thursday, October 15, 2009

back in us, back in us, back in us...a


Hello Everyone
Well of all things we are sitting in restaurant at Tulalip casino in Washington. What can I say, the  camping fees are great....free.  The dogs have completely had it with the 10 square foot existence they have been limited to for the past 3 1/2 weeks. When we get up at night we have to be VERY careful where to step.  With the dogs there, we have about 4 square feet to step at night. 

We are traveling down with Ken's sister Pat who is going to come as far as Seattle with us and then heading back to Kelowna.
We have had a very restful holiday, and it has been great. 
Although the flu is apparently all around us, we have been unscathed. Ken got the flu shot before we left, and then whilst in BC we read in the Globe and Mail that a study has come out that says that the people immunized with the seasonal flu vaccine were twice as likely to get the H1N1 virus. So in Canada they were cutting the flu vaccine programs until further notice. (not sure if this was just until the H1 N1 vaccine came out.)  So hard to keep up with all the flu news, especially while traveling. 
I got an email from a friend a few days ago that made incredible sense to me, in fact some of the info I have practiced for years in flu season, though I admit I have not seen studies to support.
I think though that practices that do not involve drugs are not studied with the vigor that drugs are anyways. I thought I would share this info here. 
 As for me I am doing very well.  I feel that the shortness of breath has resolved, and the muscle pain has improved. Once again I am working on a VERY funky hairdo. I must say that what happens with my hair is very different from what seems to happen to anyone else. The white ( or clear) hair has continued to grow pretty much since 3 weeks post chemo. Now I am at 7 weeks post chemo, the dark hair is starting to grow underneath and looks like I have a VERY DIRTY scalp. The rest of my eyebrows (a few stragglers) fell out, I am guessing to allow for the new hairs to grow in.   I would say that 7-8 weeks seems to be when hair starts to grow.

Mentally, I  do not dwell on the cancer. I guess I occasionally worry when I get abdominal aches and cramping ( which I clearly seem to have some of every day), but most certainly this is from the radiation and not a big deal except for the worry it creates. I would find it hard to believe that others in my situation do not worry sometimes as well.
We had lunch with Ken's uncle along our trip (he had his right lung removed in December for a lung cancer, no positive lymph nodes). He said "so what now?", I said well I just watch and wait, and he said "I know what you mean".  There is a special level of comfort around people who "understand".
Ken and I are going to be celebrating our 26th anniversary on Saturday and  we have a special bottle of wine (no surprise there eh?) for the occasion. Then on Sunday its back to work in Bandon.  
Peace and love
Janet Bates
jankenb @ gmail.com


Dr. Vinay Goyal is an MBBS,DRM,DNB (Intensivist and Thyroid  specialist) having clinical experience of over 20 years. He has worked  in institutions like Hinduja Hospital, Bombay Hospital, Saifee Hospital, Tata Memorial etc.

The following message, given by him, makes

a lot of sense  and is important for all of you to know

The only portals of  entry are the nostrils and mouth/throat. In a global

epidemic of this nature, it's almost impossible not coming into

contact with H1N1 in spite of all precautions. Contact with H1N1 is not so

much of a problem as proliferation is.

While you are still healthy and not showing any symptoms of H1N1 infection, 

in order to prevent proliferation, aggravation of symptoms and

development of secondary infections, some very simple steps, not fully

highlighted in most  official communications, can be practiced (instead of

focusing on how to stock N95 or Tamiflu):

1. Frequent hand-washing (well highlighted in all official communications).

2.  "Hands-off-the-face" approach. Resist all

temptations to touch any part of face (unless you want to eat, bathe or slap).

3. *Gargle  twice a day with warm salt water (use Listerine if

you don't trust  salt). *H1N1 takes 2-3 days after initial infection

in the throat/ nasal cavity to proliferate and show characteristic

symptoms. Simple gargling prevents proliferation. In a way, gargling with

salt water  has the same effect on a healthy individual that Tamiflu has on an 

 infected one. Don't underestimate this simple, inexpensive and 

 powerful preventative method.

4. Similar to 3 above, *clean  your nostrils at least once every day with 

warm salt water. *Not everybody may be good at Jala Neti or Sutra Neti

(very good Yoga asanas to clean nasal cavities), but *blowing the

nose hard once a day and swabbing both nostrils with cotton buds dipped in

warm salt water is very effective in bringing down viral population.*

(A Neti pot can be bought at the drug store.  You use it to rinse out your nostrils)( Also saline nasal spray found in pharmacies here, this is also helpful for allergies)

5.  *Boost your natural immunity with foods that are rich

in Vitamin C (citrus fruits). 

 *If you have to supplement with Vitamin C

tablets, make sure that  it also has Zinc to boost absorption.

6.* Drink as much of warm  liquids as you can. *Drinking warm liquids has the 

same effect as gargling, but in the reverse direction. They wash off

proliferating viruses from the throat into the stomach where they

cannot survive,  proliferate or do any harm. 




Wednesday, September 30, 2009

half of a vacation

Hi Everyone
Betcha thought we got eaten by a bear. Actually we did see a bear, but it had been hit by car and was dead. Big black bear.
I am feeling better every day, at least my energy. The shortness of breath seems to be gradually going away.
In Kamloops we went mountain biking with Dylan on a fairly easy trail. I am a bit of a fraidy cat on a mountain bike trail.
We found mushrooms, Boletes and Shaggymanes. Lots of them, in Williams Lake, in Kamloops and yesterday morning we found a few Shaggymanes in Westbridge. I have never eaten Shaggymanes, but yesterday fried up a couple and ate em and they were delicious.
We are in Grand Forks now and it is cold. There is snow on the higher elevations, and it is close to freezing, not quite.
I am now 5 weeks post chemo, and figure perhaps it might be time I might start thinking about taking off the pounds I put on with the last few chemo treatments. I guess eating just made me feel so good, so I did.....lots.
Problem is that I seem to hurt everywhere. This is a new thing for me in the past month, my muscles everywhere seem to just ache. I have asked about this on a forum, and a few other girls said that they had painful muscles for about a year after chemo. I have no idea why this would be, why it would just occur now?
Ken and I both find it hard to know what to talk about as we travel around visiting with family and friends, as the cancer has pretty much been our whole lives for the past 8 months and it is not really what anyone else wants to discuss. It seems to make people uncomfortable.
I feel so fortunate that Ken has been able to talk to me about whatever I wanted to talk about, whenever. It is hard, even now, not to occasionally think about my fears. After all it is cancer.
I believe that there is this subconcious thought that if you do not think about it, it will not occur. Perhaps there is some truth to this. I have read a few articles on the power of optimism, and how the optimistic tend to have favourable outcomes.
I find though that being able to talk about it helps me to set my fears aside. I guess the hardest thing for me is to read about recurrences, in people who had believed they had been cured.
Oh well what can you do?
Our holiday is half over now, we will be in Grand forks for 4-5 more days, then on to Kelowna.
My cd has done very well on the folk music charts, it ranked 39 on the international folk music charts for the month of September, and I only sent it out half way through the month. It is doing far better than any of the previous cds, so it is quite exciting.
Peace and love
jankenb @ gmail.com

Saturday, September 26, 2009

hinterland

Hi Everyone
Have gotten away from the internet. I am at my parents place where we have only dial up internet and of course you cut off the telephone when you are online.
So a short note to say my blood work is almost back to normal, normal hemoglobin, normal platelets and the white blood count is holding its own,(still a bit low).
I am still short of breath, but I think the last time it took about 5-6 weeks after chemo for that to go away.
We are going to Kamloops tomorrow where both of our sons live, so some time to catch up with Dylan our older son whom we have not seen since last christmas.

Janet Bates
jankenb @ gmail.com

Tuesday, September 22, 2009

whistler


Hi Everyone

We are now 300 miles north of the border (or 500 KM). The temp is 58 degrees (15 degrees celcius), speaking Canadian. The air is crisp and clean and there is highway construction going on everywhere?? Perhaps in preparation for the olympics, all roads leading to Whistler, or Vancouver are being widened or improved, I guess. Spending two days at Whistler was spectacular, I guess I had forgotten (or never really noticed) how incredibly beautiful it really is.

We had a great time going to the farmers market, lots of vendors with very unique items. Last summer (2008) I bought a very beautiful toque (Canadian for wool hat), from a lady who was bald, having just completed chemo for breast cancer. I had bought it to wear at concerts. (little did I know I would be in the market for hats for a different reason soon after that)

I stopped in to see her again this year, and she was fully recovered and said that breast cancer was the best thing that had ever happened to her. She had left her husband and now she was enrolled in college taking textile related courses, meeting with like minded people and having the time of her life. The lady at the booth next to hers was also selling hats, and she said she had been bald the year before the other lady, also chemo for breast cancer. They both made the most beautiful hats, I unfortunately had already spent WAY too much on a merino wool hat from a third hat place before theirs.



We were pretty nervous, to say the least, not knowing where my white blood count was. I got the neupogen on Friday, but it does not always work with just one shot, and I had no way of knowing the blood count was not just continuing to fall.

We got a doctors appt on Monday AM. Interesting cost. I think it is great all Canadians are covered as far as health care, because it was extremely expensive.

To see the doctor and ask for a blood count, was 125 dollars, and to have the very simple blood test was 109 dollars. Paying by cash this visit would have been about half in the US and for the blood test, they bill my insurance about 57 dollars for that.

Not sure if this was just because it was Whistler (one of the most expensive places in Canada) or whether the costs are the same everywhere for foreigners.

ANYWAYS, my white blood count was 2.8 and the ANC was 1600 which was a huge relief, but it seemed still quite low having just had a neupogen shot. Last time my blood count went to 19 the day after neupogen. I contacted Dr Cooks office and they said that the 2.8 was likely where I was at, and that the neupogen had likely worn off by 3 days. So that means I should be fine from here on in. I am now at a level that is still half of what is considered normal, but is adequate for fighting infection.

I will likely try to get one more cbc toward the end of the week to make sure it is still going in the right direction.......towards normal.


I am still short of breath, I guess because I am still anemic. The thing about anemia and your red blood cell count is that as you go to higher elevations, you need a higher red blood cell count as the air is "thinner". I live at sea level, and so can tolerate the lowest blood count there. This is why people who go to climb Mt Everest have to" acclimatize" at base count, or let their blood count come up, prior to ascending to the next level. People who live up in Nepal, would have blood counts much higher than ours.

Ken and I were trying to figure out whether the higher elevations would stimulate my bone marrow, or just tax my system. I guess we will find out.

I think my bone marrow is just slowly recovering. The platelets were down at 40, and gradually have made it up to 152, which is normal.


Well we have just arrived in Williams Lake and one of the first "establishments" we come across is "chemo RV", glad we have someone's yard to camp in whilst here. Who would want to stay in a place called chemo RV?


Love and peace

Janet Bates

jankenb @ gmail.com

Saturday, September 19, 2009

Canada here we come...look out


Hi everyone

Finally on our way to Canada. Been a long week in many ways. 

My white blood count was 1.4 on Wednesday when I saw dr Cook with an ANC of 800. I was trying not to go with the Neupogen, however went for one last blood test on Friday, just to verify that my blood count was coming up, and found that it had dropped further.  So I went for a neupogen shot before we left. I had a splitting headache all night, so I assume my blood count is going up. 

(with the bone marrow in the pelvis seemingly out of commission the other main areas of cell production take over such as the skull, ribs and sternum). Not totally relying on that my sister has set up a doctors appointment for me on Monday, and hopefully I can get a reassuring count then.


I have written my first song in a year, well at least I have laid the main ground work (which is the hardest part in most songs).

It is called" It is so hard to be a good dog".  I am sure anyone who knows Chewy will know where the inspiration for this came from. I wrote the music a year ago, and was never happy with the lyrics, and there was something Chewy did yesterday that just looked like a line he would say.  Sometimes I wonder if he really tries though :)


So  we are very well equipped as we head north. We have antibiotics, antivirals, and antifungals, all just in case.  We also have something for the headache the neupogen causes and one course of Tamiflu which I will only use if I really need it.

 Oh and Ken has a bottle of "bees winter defense" which is the most awful tasting pill, but Ken swears it is going to boost my immune system.

We also have 3 rain coats and 2 downfilled coat.


peace and love

Janet Bates

jankenb @ gmail.com


Wednesday, September 16, 2009

so close but so far

Hello everyone
Well today is decision day. I went to see Dr Cook today, and my blood count (white blood count)(infection fighting cells), were even lower. He has more or less left it up to me whether or not to have a neupogen shot at this time. Ken feels uncomfortable leaving the area where my doctor is, with a blood count that low.  The Neupogen would likely boost the white blood count for a week which would get me over this last period, however not without side effects. 
It certainly seems to me that the concept of risks VS benefits is more relevant in oncology than other areas of medicine.  Each drug has potentially serious side effects, but the alternative is "potentially" worse. 
In fact every aspect of cancer care is a balance, how far can you push the envelope of cancer treatments without creating a serious side effect.  The medications used to boost the bone marrow to produce more cells can cause leukemia. It is not common, but it is certainly a consideration when giving neupogen, or neulasta.  I do not think that the risk of infection is any greater traveling vs staying home, it just would be easier to get treated where your oncologist is.
Dr Cook also reviewed my ct scan results and said that ctscans were limited in their ability to detect these cancer recurrences because they have a tendency to start just as thickened tissue which would be hard to see on a ct scan  (captain bringdown  :) )
I got the ct scan results ( I had only gone over the ct with the radiologist), and there are "thickenings" in the pleura of both lungs, which he felt were scarring. Not sure why I would have scarring of the pleura (pleura is the outer lining of the cavity where the lungs sit, the pleural cavity is the space between the pleura and the lung).
So after my visit with the oncologist yesterday I have asked the radiologist to look at the ct scan I had in Eugene in March and compare (just to make sure that the "thickening" is the same on both).  I will find that out early next week. I guess my concern has been that I have had left chest pain intermittantly for about 4 months now.

I did not finish this blog yesterday, so am now writing on Thursday. Ken has been working away at getting the van ready for this trip, and being the true boy scout he is, has packed rain coats for cycling, rain coats for wearing around town, down filled coats for "in case it gets cold", and mitts and scarves.  I told him he had to pick between coats for cycling in the rain and walking in the rain, there was not room for both.
 One thing we found in cleaning out our camper van is that we created a whole cupboard of free space by illiminating the the things I will not need this trip. 
Blow dryer, shampoo, conditioner, hair spray, bobbie pins, cloth hair elastics, Kotex pads, comb, brushes..........maybe he CAN bring 4 raincoats.

I have not been all that helpful because for some reason all the muscles in my legs and back are very achey. More so than they have been any other time in the treatment. Dr Cook thought it might be because my hematocrit is so low. I am more short of breath than I have been in awhile, so just getting tired doing minimal things. This seems to have happened every time my blood counts have been low, so I assume it is related. It just seems like the end of this is SO CLOSE, but in some ways so far away. My expectations were that I would be feeling perfectly fine now, when in fact I feel worse than I did last week.
My parents are celebrating their 60th wedding anniversary while we are up there, so a bit of a family reunion. I am certainly hoping my blood counts are up by then.
Peace and love
Janet Bates
jankenb @ gmail.com

The blood counts are still quite low today, so I am going to go on antibiotics for awhile, a compromise between getting neupogen and/or staying home.  Ken and I will minimize our contact with a lot of people until the blood counts go up.

Tuesday, September 15, 2009

vaccines


Hello everyone
What a week! A cd release party on Friday, concert on Saturday, I have put together 550 cds to go to radio stations, and we have been working.
Ken and I have been working pretty much straight through since September 4th, I guess making up for the time we will be gone. On Friday we are leaving for a month holiday in Canada. Ken sent me home from hospital yesterday and said I could not come back.. :)  My white blood count is down to 1.6 and my ANC is 980, which is low and leaves me more prone to infection. 
I guess I had hoped that by the time the flu season hit I would be over all of this, but we are starting to see the flu at the hospital now.  
The problem with the flu vaccine in immunocompromised people, (such as those on chemo, with leukemia, AIDS, and the elderly) is that these people are not able to mount a response to the vaccine. Normally when you receive a vaccine, your body mounts a response and forms antibodies to the organism (in this case the influenza virus), which is how you  are protected. If you have had the vaccine and  then come in contact with the virus, the antibodies you have formed quickly takes care of the virus. If you are immunocompromised you are unable to form the antibodies. So this is the reason that the people who care for the immunocompromised need to be immunized, so as to decrease the risks that they will come into contact with the virus at all.
In my case since I am at the end of all of this, I will just wait to get the flu vaccine until my blood count comes up, so as not to waste it now. Perhaps while I am up in Canada.
The flu vaccine is a "killed" vaccine which means it contains what is needed for the body to form antibodies against it, but it is unable to infect you. Some vaccines are "live" vaccines, which should not be given to anyone on chemo. The only significant "live" vaccine is the mumps measles and rubella vaccine. This one should not be given to people on chemo because of the risk of getting the infection.
My hemoglobin and platelets are slowly going up, but at least they are going in the right direction.  We are a little nervous leaving town before the blood count comes up, but I am sure it will be better before Friday.  If need be, it will be pretty straightforward to get my blood work done up in Canada.
By the way, there is very little being said about the Canadian health care system that is true. I was a physician for 7 years there, I was a nurse for 10 years there and a patient there for 40 years. I have been a physician here for 13 years and a patient.  I have insurance here, and have spent 10,000 dollars out of pocket this year. If I did not have insurance here, chances are I would not even have had the surgery, let alone the chemo and the radiation. Right now my insurance statements say I have cost them 80,000 dollars this year.
In Canada, no matter who I was I would have had the surgery, the chemo and the radiation and only would have needed to pay for the medications that were prescription medications. The cost to the system would have only been a fraction of 90,000 dollars, as the system is not a "for profit" system. So the shareholders in the insurance companies are not benefitting from my medical problem. The CEOs of insurance and pharmaceutical companies are not "benefitting" from my problem.  The system is only there for health "care".
The part that I do not understand about what is going on here, is why those who are so opposed to a "socialized " approach to health care, have no concerns that the school system here is very socialized. Everyone here can go to school.
My health care here costs me 347 dollars a month. This does not include any dental.  I have to pay the first 7500 out of pocket in medical costs, and the first 1000 in medication costs. I also have to pay for tests my insurance does not cover, for instance an MRI  I had to pay for. I am a physician and my husband is a physician, so we can afford this.  But who else can?

I would be willing to bet that anyone who is defending the current health care system here in the US has insurance, and/or has never had a major health care problem that they have had to pay for themselves.
I also wanted to explain that medicare is a form of socialized medicine, as is the VA.
I am hoping that some good can come to the system here, and I wish they would stop using the Canadian system as a punching bag.

peace and love
Janet Bates
jankenb @ gmail.com

Thursday, September 10, 2009

NORMAL ct scan

Hello everyone
Just wanted to write a short note to let everyone know that my ct scan was NORMAL.....
and my ca125 is 7 which is exactly where we want it to be. I am thrilled, or should I say WE are thrilled.
I feel I can now think into the distant future without fears that I will "jinx" something.

I never wrote about it, but early August I saw my gynecologist/oncologist in Eugene and had the first of my "followup" exams and it was completely normal. She said at that time that most recurrences occur in the first 2 years, rarely the first 3 years and almost unheard of beyond there.
So I am a third of the way there. Where is there? Well "there" is to be able to clearly say " I won". I clearly feel at this point I have a very strong lead over the "other" team.

I guess I have a tendancy to think in metaphors, I guess perhaps that really helps my song writing. The other day I was thinking about this whole cancer treatment and how it reminded me of a war. There is a "civil" war going on, and all of a sudden, another country comes in with bombers and infantrymen and basically bombs everyone.
Where I am right now, is watching all MY little soldiers getting up, dazed, dusting themselves off, some of them going to the first aid tent for treatment, basically saying "who are those guys?" The cancer soldiers aren't.

I guess now is the time for me to begin my own personal anti cancer treatment, with kindness for my body. Jimmie Buffet has this great song, the name of which escapes me, but one line where the girl is saying to the guy "I treat my body like a temple, you treat yours like a tent". I am going to work on my temple. Organics, turmeric, ginger, and yes I will need to develop a taste for green tea.

Now I have to get through the next week of low blood counts. The white blood count usually reaches its lowest point somewhere around day 21 and then my guess is that it will start to go back up naturally. The reason I say "guess" is that up until now I have not gotten to day 22 without doing something else to knock it back down.
Ken and I are planning on leaving for a month long trip to Canada on day 24, so hoping the counts will rebound quickly.
Love and peace
Janet Bates
jankenb @ gmail.com

Tuesday, September 8, 2009

peripheral neuropathy


Hi Everyone
Fallout day otherwise known as day 14. Have been back at work this week, the blood counts have improved a little this week, feeling pretty good, perhaps just tired.
I have posted some blogs mentioning the numbness in my feet and hands and I do not feel I have explained the problem medically yet.

The body has two parts to the nervous system, the central nervous system and the peripheral nervous system. The central nervous system is essentially the brain, and the peripheral system is essentially everything else. The peripheral system includes the sensory and motor nerves to the muscles. Sensory is touch and motor is involved with movement of muscles. The peripheral nervous system also includes the autonomic nervous system, which controls the  internal organs and glands.
Certain chemotherepeutic agents can cause damage to the peripheral nerves, which is called peripheral neuropathy.  The main ones that do this are Vincristine, Cisplatin, Paclitaxol, Etoposide and Tenoposide.  Those at greatest risk of developing peripheral neuropathy are diabetics, alcoholics, malnourished, and those who have had chemo before.
The symptoms are numbness, tingling, or burning of hands and or feet, numbness around mouth, constipation, loss of position sense (not knowing where a certain part of your body is with your eyes closed), cramping of hands or feet.  The constipation would be if the autonomic part of the peripheral system is affected.
The symptoms usually start after a chemo treatment and decrease prior to the next one.  Some people do not develop them until after the final treatment (like me).  The symptoms tend to peak in intensity at 3-5 months after the final treatment, and from there they diminish intensity, and often go away, but not always.
When the symptoms are severe with early treatments, the dosages of the chemo agents are often decreased for subsequent treatments.

I did a search of the literature and there are many agents being used in an attempt to prevent this, but to date, none have been shown to be of any benefit. It seems that most oncologists suggest vitamen B6 at a dose of 100 mg a day, and L Glutamine (which is an amino acid or a building block of proteins) of as much as 10 grams a day.  Personally, I have a call in to my doctor to see what he suggests.  I DO try to be a good patient. I am fairly certain that mine will just go away as I developed it so late, but I had wanted this blog to be informative, so have included more info.
There are a lot of potential treatments for this problem should it become chronic, and my suggestion here, is to seek help early rather than late, as these types of problems are often much easier to treat before someone has had them for months and months.

I have been working hard on my garden, ....?? perhaps to impress any one who comes to our party on Friday night. I have included a picture of what I am calling my fall garden. I have planted fall spinach, fall beets, my zuchinis have finally started to produce and my artichokes look like they are headed for a fall crop.

P and L
Janet Bates
jankenb @ gmail.com


Sunday, September 6, 2009

dear diaries

Hello everyone
Day 12, and getting better all the time.  The numbness of my toes has changed over to just my right foot and now most of the bottom of my foot is numb, but no numbness of my left foot, or my hands(keeping my fingers crossed which only makes two of them numb :) ) Although I have not spoken to my doc about this a few friends who had it were told to take  L Glutamine and B6 for it, so I have a B complex vitamen and am looking for L Glutamine?
My bloodwork this time, everything was low.  Usually the WBC is high or above normal at this point, but it is now low normal. The hemoglobin which is the part that delivers oxygen to the tissue, is 9.9 (12 being normal), which is probably why I look so pale. 

 Everyone who sees me tells me how great I look, and I always think "don't you think I look pale?".  The other night someone told me how great I looked and she said, "you must hate it when people tell you how great you look when you are feeling lousy". I said no, that I actually just figure that they are all lying. I guess when people say you look great, what they really mean is you look a lot better than one would expect someone to look like on chemo.  Irrregardless of what a lovely round shaped head I have, I do not think that I look great bald. I have been told countless times what a great head I have. I think it is just one of those things that falls under the category  of 'things to say to a bald lady'.

The platelets are also quite low, lower than they have been thus far in chemo (platelets being the ones that are involved in blood clotting), so for now I will let Ken cut the vegetables.

I am going for a CT scan of the chest abdomen and pelvis on Wednesday. This is an end of therapy "make sure that there are no metastasis" scan. It will be with oral and IV contrast. What this means is that I start drinking a barium sulfate suspension the night before (otherwise known as berry smoothie readi cat 2 ) which will outline the entire gastro intestinal tract. A ct scan does not show much without contrast in the GI tract. The IV contrast outlines the vessels and the vascular organs.  These are done at (?I think) 3 month intervals for the first while and then 6 month.
It is not certain if doing these is of any value, because with endometrial cancer, most recurrences are symptomatic. The goal is always to pick up recurrences before they are symptomatic because usually you stand  a better chance of treating them.

The hard part about all of this, is that you tend to "look" for symptoms and whilst on chemo and radiation you have SO many "symptoms, you are always asking yourself, is this the chemo, or could this be a metastasis?  So the good part about getting further and further away from chemo, you have less symptoms and those I have right now, I know to expect from chemo. I am fully expecting a normal ct scan on Wednesday.

I wanted to point out here to anyone going through this OR anyone who knows someone who is going through this, to keep a diary. I know this seems nuts, but right now and many times I wished I had.  I have used this blog as a bit of a diary, but not to the same extent someone who was just writing to themselves would do. The reason for this is to know more about what to expect and when to expect it.  I am always going back to check how I was feeling on Day 6, or what day did the bowels start to work and what day did the blood work change etc etc. On chemo you are FOREVER saying to yourself "I wonder if THIS is normal" even sometimes when you have had the same thing before. I wonder if it normally lasts this long......etc etc.
You can always burn it at the end, or put it away somewhere in case you ever want to help someone else with the question "I wonder if this is normal"
Several people who read this have suggested I make this blog into a book, but I wonder sometimes if I could go back and read it. It is a whole journey I am not anxious to make again soon, even in literature.

Speaking of journeys, I am busy, busy busy with my new cd, getting 550 cds ready to be sent to radio stations next week. Nice to be busy.

Love and peace

Janet Bates
jankenb @ gmail.com

Tuesday, September 1, 2009

a day without plans, goals, or commitments


Hello everyone
I have been thinking how much our lives have changed over the past several months. In many ways it needed to happen, I just had no idea how to get here from there.  How do you go from having every moment earmarked for something,( and feeling lost when you haven't), to free floating?  I guess there are many positive bits to all that has happened over the past 7 months that perhaps now I can begin to appreciate.  I am gradually developing a different perspective on life, but it has been slow.

I am on day 9 and though I just want it to be totally over, I do have another 2 weeks of chemo effects, well at least the acute effects.  I am  going through the sores in mouth, heart burn phase today.  This time though a new symptom has emerged that I had hoped I would not get.
My toes and fingers have started to go numb.  It has been subtle and just over the past few days. First just the toes on the right foot, then the tips of the fingers on the right, and then the left foot. I have been particularly concerned about this with my guitar playing.
When I got it I marched down the road to ask Jaime, my neighbour who has been through  a similar treatments with one of the same drugs, of her experiences with this numbness. She said that hers had started sooner in treatment and had progressed to point that for awhile she could not play her violin. She said that it did eventually go away.  I then went to the medical literature and looked up "peripheral neuropathy", which is what it is a form of.  I know it occurs with other chemo drugs, but "Taxol" is the one I am on and most breast cancer patients also take Taxol.
What I found was that they have been studying this and that it occurs in as many as 60 % of people on Taxol, and it often goes away, but in 27 % of those who experience it, then go on to develop "neuropathic pain", which is a chronic pain disorder, which involved fingers and toes.

I mention this not because of fears of my developing this, but more to point out an ever broadening area of medicine, and that is the long term care of cancer survivors.  The study I referred to points out that with the greater successes of cancer treatments people are living much longer and the chronic complications of chemo and radiation are being looked at with the hopes of preventing them, catching them earlier and finding the best ways to treat them. 
There are many aspects to being a physician caring for patients who have received chemo and radiation in the past, that need to be addressed. Just as an example, anyone who has had pelvic radiation to treat the gynecological cancers, anal cancer, or prostate cancer, should actually have a colonoscopy every 5 years, instead of every 10 years.

My cds arrived a few days ago and I wanted to take this opportunity to invite  everyone to a party/cd release/chemo release party, open house..... next Friday. September 11th from 5-9 pm come by for just a while or for the whole evening.  I am celebrating the end of all of this, and would like to share the evening with the people who have stuck with me through thick and thin in reading this blog.
 I will be serving some of my best party recipes such as Canadian Quesedillas and chantrelle pizzas.  If you have a special dish you want to bring feel free, but do not feel obliged.  My address is 89569 Sunny Loop lane which is out Prosper road. Email me for directions jankenb @ gmail.com   (leave out the spaces)
We are going to play some music, Mark our drummer is coming down from Eugene, Jaime, down the road from us will be playing violin and of course Ken on Bouzouki.

Look like I may have hair for the event. I had sort of resigned myself to baldness now until the end of September, when it gets to 8 weeks post chemo, however a couple of days ago I noticed a very thick crop of new white hair. It won't be down my back by next week, but it might be half an inch or so :)

peace and love
Janet Bates
jankenb @ gmail.com

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