Tuesday, March 31, 2009

Still Life

Hello everyone
Ken and I (and chewy and rex) went off yesterday in search of the great black morel.
Did not find it, but we know where not to look today.
oh and the birdies are less shy today and posed  here whilst waiting for someone to open the door.
It is great fun watching the birds, like a still life watercolour with the occasional visitor.
Still life is not really a place I have ever been.  I have been obsessed that every moment must achieve something, for a very long time.
I believe I have been "blessed" with this "disease situation" perhaps as a means of reseting the way I live my life.
I think everything happens for a purpose, and I feel that perhaps this has happened as  means of allowing me to more  clearly see the rest of my life. Adversity being the cloth that cleans the eyeglass to better see the soul
Although Ken and I have an amazing marriage, somehow it is even closer as we live these days in "still life", just going through the motions, doing what we can and not dwelling too much on what we cannot do.  If we just "hunker down" through this time, and try to be patient, we will have a much more full life when it is all over. He is totally amazing.
We have taken to doing crossword puzzles, my sister and my father would grin at this.  We bought a crossword book the day of chemo and with all the steroids, I WAS HOT, I could not write down the words fast enough.  Somehow with all the other drugs I have slowed somewhat.
I am struggling with completing the cd, with the current situation, everything is being done for me, with exception of the vocals. ALL I HAVE TO DO IS THE vocals.
However this is also hard, as I have had so many issues everytime I go to do them SOMETHING has gotten in the way, between computer failure, hoarseness, family travels, work issues, and then this....there is a rather subconsciencious part of me that does not want to go there. 
However that is my goal for today, to at least get something on the cd done....oh and to drink 8 glasses of water and...have a bm.....
hmmm busy day

Love and peace
janet bates   ...still with hair

Monday, March 30, 2009

a new week

Hello everyone
For fear of boring anyone with the minute details of my bodies reactions to the prescribed poisons, I left off this morning.  I feel now that that is somewhat unfair to describe how unwell I feel and then..................
I often feel that as a doctor.  You just never find out when someone feels better,  you just don't hear from them.   
I am feeling better today.  I walked about a mile or so today, and had one of those breakfast sandwiches down at the bandon coffee place.  I was fortunate to have arrived late enough to miss the AM Obama bashers.
I did go for bloodwork today and while it looks pretty good, the liver enzymes are elevated. I know the chemo can do this, I only hope that this will not mean that they will need to lower the dose.  I have read where when you need to lower the dose of the meds, you also lower the "kill rate" of the cancer.  I did stop my evening glass (or two) of wine two nights prior to the chemo.
(this was not totally intentional ...... to even smell wine gives me nausea)
I have a call in to the doctor, and my guess is that he will just repeat the test to make sure it comes down prior to next chemo.
While I know that no one believes me that we have birds "flocking, ... yes flocking" to our bird feeders,  we have yet to get a photo of one of them, so I thought I would include yet another photo of yet another hat.  The question that is likely on everyone's mind, as well as mine.....is....do I still have hair.  Apparently that will fall out on day 14. Someone suggested at the party that we could start a hair pool.
We could put numbers on the braids and people could bet on which ones would fall out first......and last.
and the garden... I have planted 10 tomatoe plants in the green house, a whole raised bed of beets, another raised bed of strawberries and 2 flats of basil in side and one flat of zuchini inside
I have know you are not supposed to plant them inside, but I have spent two years waiting for my zuchinis to germinate and I am not taking any chances. I have BIG PLANS FOR zuchinis this year, perhaps I need to learn how to spell them first.
thanks for reading my blog, and my warmest wishes go out today for Norine.
Love and Peace
Janet Bates

Sunday, March 29, 2009

all up from here

Hello everyone
Well the past few days have not gone all that well.
I am working at keeping ahead of the nausea, with Zofran and (oddly enough) Ativan.  It seems that I can keep it at bay if I take them regularly. The fatigue, has been hard, being such an active person. I have just read that apparently studies have shown that regular exercise helps with the post chemo fatigue.  I found this encouraging, and so when Ken comes home today, perhaps we will try a short walk in the woods.
We walked several miles on the first post chemo days, and less on the second and then yesterday
and today it has been to the bathroom and back.
The drug "Neulasta" was given 24 hours after my chemo, to boost my bone marrow, so that my blood counts of white blood cells do not drop too low. (this is one of the serious effects of chemo, when the neutrophil count (part of the white blood cells ) drops too low, you are prone to what would normally be minor infections.   The trouble with this is that when your bone marrow is stimulated, it causes bone pain.  So I have generalized bone pain from that. Myra's son, the oncologist explained to me that to experience bone pain with the neulasta shot is a good sign that you have a good bone marrow...... So I guess I have a good active bone marrow.

From what I have read from other women going through the same chemo, I should be starting to feel better in the next day or so.
The way I see it now,   I receive these very toxic drugs, that go into body and kill rapidly dividing cells. When chemotherapy drugs attack reproducing cells, they cannot tell the difference between reproducing cells of normal tissues (that are replacing worn-out normal cells) and cancer cells. The damage to normal cells can cause side effects. Each time chemotherapy is given, it involves trying to find a balance between destroying the cancer cells (in order to cure or control the disease) and sparing the normal cells (to lessen unwanted side effects).

So I am trying to be positive about the "side effects" hoping that any stray cancer cells that may have been considering setting up shop in any other part of my body, will just be wiped away.
My next chemo is April 15th, and I hope I can find ways to make it easier.

Love and peace

Saturday, March 28, 2009

For whom by Janet Bates, photos by Steve Holt

just thought I would add this slideshow of my For whom song with Steven Holts photos

it was bound to happen

Hello everyone
Although I pretty much see myself as impervious to just about anything,  yesterday afternoon at about 3 it occurred to me that perhaps this chemo might be a big deal. Like a couch patata....I 
just collapsed into the best chair in the house and apart from for very important things, did not get up. Getting a glass of water was suddenly way too much for me. The nausea, the fatigue and all the muscle and bone pains hit.
So we decided to go back to plan B.... Listen to the doctor. (what a concept)
He said that the nausea and pain meds, it was likely better to just schedule and take regularly, than to wait until I was nauseated. He said that it would make it easier for the next round of chemo. He said often people who have a really hard time the first time then get "anticipatory nausea" out of fear from the previous time.
So Ken is playing "nurse Kenny" and timing all the meds as a schedule. (he is off playing doctor Kenny right now though)
I certainly hope that these toxic drugs are doing more than just killing my good cells.

On the good side of things...... I did get all my artichokes fertilized, my spinach planted, my strawberries planted and a lot of my garden weeded before I took to the comfy chair yesterday.
On the other good side, we got home from Eugene yesterday and lo and behold....there were TONS of birds at my feeders, casually glancing at me as if to say....."we were WONDERING when you were going to make it back to feed us"
So WELCOME..... birds to keep me company, and welcome any thoughts you have at..

Love and peace
janet Bates

Friday, March 27, 2009

why cancer, why me, why now?

Hello everyone . The song that Ken put the slideshow to yesterday was called, she sings her song. Iwrote it about the children show suffer the affects of agent orange, cancers, musculoskeletal problems all because of a herbicide, sprayed on the ground to kill all folliage.  It was used in Vietnam to destroy the jungle,  a two fold approach at warfare, take away the enemies hiding places and destroy thier source of food.. 
I guess thoughts I am pondering on our way home from Eugene.
I guess I feel since my mothers heart attack (when she was my age 52) I feel I have lived a fairly healthy life, gradually increasing my exercize,  to becoming a marathon runner, also following a low fat diet, gradually working toward the suggested 7 fruits and veggies a day.
My doctor maintains that I am about the last person she would expect to get this, and especially in more aggressive form.  Usually women are obese and/or have taken hormones.  The fact that I never had a pregnancy is one risk factor.
However lately I have also been thinking that there just has got to be more to this bourgeoning of cancers.  You cannot turn your head with hearing of someone else being "blessed" with the diagnosis. Earlier this year, for the first time ever, despite our rather slovenly ways, cancer has bypassed heart disease as the leading cause of death amungst adults.
Reading last night about GMOs which now make up most of our corn and soy supplies, I wonder how much you can change about what we take in, without it altering our bodies.  To develop plants that can withstand the herbicides that they are going to use on them, to me just seems nuts.
All the years of being out running in agricultural areas, running by a farmer who has a mask on, wondering what is protecting me.  I wonder does the farmer care how far down the line the effects of his spray will be felt. Will it be the ground water going to the sea, will it be the fish we buy at the market, will it be the child with a hankering for cranberry sauce , or cranberry cookies, or will it be that childs child?  These things are so hard to measure, and quantify, but why is there so much cancer around?
And how many of your actions will you be immune from that will go on to affect others in grevious ways.

Love and peace to all
lets all go organic

Janet Bates

Thursday, March 26, 2009

she sings her song

Hello everyone,
Wanting to let you all know how today went, also Ken has made a great little slideshow that goes to my song "she sings her song" that I will post after this.
The roughest part of yesterday is that I was given 3 high doses of steroids to counteract the high risk of allergic reactions to the Taxol (reactions can be serious ) So the steroids left me really hyper and so despite the sleeping pills, etc, I was "chatty Kathy" up until 2 am, when Ken just wanted to be snoring boring Ken. After all he had had a busy day too. 
As expected the leg pains started last night as well.
One thing I had not realized is that they gave me an injection prior to the chemo drugs that is a strong anti nausea drug that lasts for 3 days. So that is likely why I have no nausea.  Everything tastes pretty bad though.  Today Ken and I walked all over buying hats, foods that looked like they might taste good, and birdhouses (ceramic ones).  I sure hope that the birds have showed up by the time I get home tomorrow.
I got the printed results of the ct scan and, really nothing significant except nodularity of the vaginal cuff which they said could be residual disease. I am certain this likely represents scarring, but will talk to my doctor about that. I also got call from my other doctor to say that the PET scan was totally normal.  WHICH IS GREAT NEWS.  So the chemo is to treat microscopic disease that has spread, and the radiation is to treat  any residual cancer cells left over after the surgery.  There is still a chance of distant spread with this regime, but it is much lower with this treatment regime, however the hard part is to know more precise prognosis. 
A hard question for anyone to answer. I guess in time I will just have to get used to SOME uncertainty.
Today I had to return to get an injection of Neulastin which is given 24 hours after chemo, to boost your bone marrow into making more blood cells. The main problems with chemo are that the cells that divide most rapidly in your body are you blood cells and that is how chemo works, by killing or altering the most rapidly dividing cells in body, which is also the cancer.
When your blood counts drop, the biggest concern is infections, when the neutrophil count gets down to a certain level, you are no longer able to fight off even simple infections.  So for this reason during the 10-14 day part of the cycle you are suggested to avoid malls and public breeding grounds of germs........
Anemia, where your hemoglobin drops, also causes you to be tired and at times even need blood transfusions.  If the platelets drop, you will bleed more easily.  And for all of these reasons, that is why I got the Neulastin today, to prevent some of these issues..

We will be back here on the 15th of april for my second round of chemo,  and since Ken is working on the 16th, figure we will have our pyjama party on the 16th, so start gathering good funny chick flicks.....
If my mom is reading this blog, wanted you to know I love you and that you are in the slideshow

Love and peace to all
Janet Bates..... My email is jankenb@gmail.com 

Wednesday, March 25, 2009

A great prelim report today

Hello everyone,  If this is getting boring please do not feel obliged in any way to read. Its just so many people want to know the details.
Just finished my first day of Chemo and wanted you to know I have a smile on my face. At least a preliminary one.
The day started with PET scan, in which I was infused with a radioactive dye that is somehow placed inside glucose molecule. Then I had to sit "quietly" for 45 mins, basically not move too much because moving too much makes the dye go to muscles. That was long, however.
THEN the PET scan where you lie on a stretcher sort of thing with a doughnut thing at the end. 
And it starts with your feet in the doughnut and every 6 minutes you move another 6 inches closer into the doughnut. For this part, you cannot move the 6 inches that are inside the doughnut. As you can quickly determine, the test is a shorter one for short people. I calculated this part out as my head headed for the doughnut.  My bladder is less tolerant of large loads lately, so even though it was only 45 mins,  it was tough at the end, especially the part that it seemed like every bathroom in the cancer centre was occupied.
Anyways got out of there just in time to start drinking the contrast for the ct scan. My doctor came in just before the ct scan started to say that the PET SCAN tech saw nothing that "lit up" on my PET scan, which means that there are likely no metastasis over 1 mm or so anywhere on me. The chemo gets rid of smaller ones. (this is all an oversimplification)
THEN I had a hard time lying still for the CT scan because I was crying.

Then there was just enough time to wolf down a few cups of coffee to try get rid of my caffiene headache, and some leftover pizza from last night and then we saw the chemo oncologist. He brought my ct scan up on his computer and then said "I am not a radiologist, but nothing here jumps out at me" which was also reassuring, being as he is a doc that looks at lots of ctscans.
Final reports tomorow.

So just out of his office in time to start chemo.  Chemo was quite lovely... :) Met several lovely people, none of whom had hair,  except the ones who were getting their first treatment like me.

Most "concerning" untoward side effect from the chemo....is that we went out to dinner tonite and I thought I would order a bottle of my favourite wine and have a small glass.....
Ken maintains it is great, I cannot stand the taste.
I tried a white wine too and could not stand the taste, I ordered a nice glass of chardanay and it was awful too.
OH WELL, I seem to have tolerated the treatments without any serious side effects and for that I am grateful, and knowing now that it looks like they will more than likely cure me, I can live without whining about the wine part.
The rest starts tomorrow, but for now I am doing very well.
Ken has been just a darling (as usual)  and we actually did have a lot of fun during chemo today. He is making a slide show and we hope to post it here in the morning
Love and peace to all
Janet Bates

all shall be revealed today

Hello everyone today is the day.
Important bits, PET scan AND the chemo. I guess it will be good to find out how chemo goes, but the other REALLY big this is to make certain I tolerate it.
Carbotaxim and taxol have currently been determined to be the best drugs for me for this situation. So I am hoping I will not need to compromise. 
Busy morning first watching Ken eat, then off for PET scan. I first get my infusion of radioactive dye combined with glucos......and then have to wait while it infuses. She said to bring along an ipod or something. They do not want me to do anything interesting so that the stuff does not concentrate in my brain. She said no crosswords, or good books. Not sure if music is a good option for me. And my cooking magazines, the stuff will just concentrate in my stomach. ....writing songs is out...
At 11 or so I get a ct scan with barium to swallow and IV dye. That should only take a few minutes and then on to eating leftover pizza from last night, that I had to watch Ken eat (he was kind enough to get two)

I think chemo infusion starts at 12:30 or 1:00
Beth has told me about a friend who wore a bathing cap to infusions and did not lose her hair, a medical journal called this the tourniquet method. (guess it is better than a tourniquet round the neck)  So I got a swim cap and another cool hat (to cover up the cap) Would not want to appear vain in the infusion group. In some ways I think the only reason I am doing all this to keep my hair is that it is SOMETHING I can do. I guess for everything else, much seems predetermined. I cannot change the past and as for the treatments, I am leaving them all  up to the doctors (yes I am too)
So doing stuff with hair is something I can do, and it is a distraction from the matter at hand. I remember when I used to deliver babies, the father always looked somewhat lost, wanting so much to help in any way. So I would find things for them to do, and they always clung onto each chore like it was  gift I was throwing their way.

I feel I am extremely fortunate for all the people who are thinking of me, I feel blessed, and Ken just makes every step so much easier. (Such a gem)
I feel lucky that I do not NEED to work right now, I would like to go back as soon as my blood count looks good, because I find trying to make sense of other peoples medical issues really feels good for me ......so by all means now is the time if have a medical question, feel free to ask it.  It takes my mind off me.

Financially this will not ruin us, as it would for so many Americans in this situation. So lets all hope that someday, the US will have that same luxury that their neighbours to the north have.  Although I am not prone to feelings of  patriotism, I am proud that any Canadian would get what I will be getting and will be able to pocket the 20 grand or so we will be paying.

I am not afraid, I just want the show to get on the road.
Gail McClave generously offered to work Thursday  night for Ken, so we may stay over in Eugene until Thursday.
Love and peace to all

I will try to write tonite
Janet Bates
My email is jankenb@gmail.com     Feel free to write, I love getting emails

Tuesday, March 24, 2009

What a difference a day makeshttp://3.bp.blogspot.com/_lNHD6_ExSMg/ScjJw9gRipI/AAAAAAAAABQ/cM9DKq0WcSE/s320/DSCF2456Copy.jpg

Well today we head over to Eugene. I have not slept much despite all that has been given for me to sleep. The unknown can be such a deep dark whole.  I guess the PET scan is the part I am most nervous about, not the test, but the results. Also nervous about taking the high dose steroids tonight and tomorow morning, which only make sleep even harder.

It was kind of fun yesterday to come home with the cornbraids and try out all the hat I had to see what each looked like. Never really having been much of a hat person.

The infusion of chemo will last 5 hours, and at Gails suggestion, Ken has an IV bag of fluid in case I cannot keep anything own...for later on...... (personally I have plans to go to the steelhead brewing company for dinner on our way home from the treatment. 
Today I need to eat a low carb diet and very little exercize. I think it is basically because the radioactive tracer used is combined with glucose with the thought that glucose will preferentially go to rapidly dividing cells (ie cells needing more glucose) I guess if I had a high glucose level then the regular glucose would to into the cells and not the radioactive glucose, so test would be falsely positive. I guess if I had exercized a lot today then cells would be healing needing more glucose as well.

All and all I think one way or another over the next few days, I am going to feel a lot better, first of all knowing exactley where I stand with regards to the spread of the cancer cells, AND I will have a good idea of what to expect from chemo.

A few of us fine women yesterday, whilst getting my hair done, suggested that perhaps we have 
a pyjama parties on the nights Ken has to work soon after the chemo infusions., (Ken doesn't want me staying alone)
We can watch funny movies eat popcorn, ......and maybe not drink wine?
anyways GIRLS ONLY  :)

Love and peace

Sunday, March 22, 2009

adversity is a friend to creativity

well the photos may seem odd, but I do have a point.
Most of the past 52 years of my life, I have had long hair. I have to admit I am having some trouble with the concept of loosing all my hair in the next few weeks.  The treatments will last until about mid october and it will be another 3 years after that to regrow my hair.  With my plans to be a rock star, it will seem like forever.
I have devised an experiment I am going to try, which will, if successful, give me hair to use while mine regrows and at the end, hair to give to someone else, and perhaps a technique for others to try.
So what do Phyllis Diller and Bo Derek have in common?  CORN BRAIDS.
Tomorrow, I am going to have my hair done up in corn braids. I will recieve chemo on Wednesday and according to what usually occurs, my hair will fall out 7-14 days after my first infusion. Sondi is going to braid my hair tomorow.
I have ordered a few wig liners from  www.tlcdirect.org  (a great company that the american cancer association suggested for hats, wigs, breast prosthesis)
Courtney at Vicki Gs is going to check frequently for when the hair is falling out at greatest rate.  We will spray hair with heavy duty hair spray and Courtney will then shave off all my hair.
We will attempt as it is being shaved, to place each piece on the cap (which will be on a mannequin), perhaps in a gel, carefully.
I will then take needle and thread and attempt to stitch the braids onto the cap.
After it is secure, I will be able to wash it.

I will then "theoretically" have a set of corn braids of my own hair, that I can wear under a hat until my hair grow out again. If this works, it might be an affordable means for women with long hair to save it and use it until their hair grows back.
PLUS this would also be a means that once these "wigs" were no longer needed, they could be given to locksforlove
It was quite exciting today to call up Courtney and go over the logistics of this with her, she has dealt with many women in this situation and seemed to think it was a viable concept. She was excited about the idea as well.

One of my other thoughts today is that whilst I may lose all my hair, I will not lose my fitness, unless I allow it.
My heart and lungs are healthy (at least I am pretty sure) and though I love being in Eugene, the hardest part of being there is to see all the people out running. I think I mourn running more than anything. I got a great letter yesterday from a doc, Ken worked with at the university in Eugene who had a friend who had SAME cancer as me and continued exercising throughout chemo and radiation. 
So I have made the decision that I am going to run another marathon at the end of my therapy.
I challenge any on this list to join me at whatever level of distance they are comfortable with. 
It will be my celebration of completing chemo and radiation.  I know it is kind of gutsy to make these kind of goals in public, but I am sure I am good for it. Rough estimate is that the Seattle Marathon is thanks giving weekend.

The other really really important tidbit I wanted to include in this blog is that vaginal bleeding after intercourse is never normal........well except for the first time....
and I doubt that there are many first timers here.
In younger women, post coital bleeding (bleeding after intercourse) is a sign of cervical cancer and NEEDS TO BE CHECKED with a pap test
In women my age and older post coital bleeding is one of many signs of endometrial cancer, and needs to be checked with an Endometrial biopsy.  PERIOD!

I am always happy to answer any questions about this or any other issues in this blog 
at jankenb@gmail.com 

love and peace

Janet Bates

Saturday, March 21, 2009

photo shoot

Hello all
I decided that I had to do the photo shoot for the cd cover this week if I wanted to have hair for the pictures.  Not knowing what I will look like without hair I thought I would begin WITH.
I contacted the photographer, my friend Joan Emm, who did the photos for the last cd and set up yesterday as the date. I have not been feeling "creative" lately and as to ideas for the cover, I had none.  I did want to somehow build the cover around one of the songs "the little spinner", which is  a song about a famous photo taken of a spinner working in the cotton mills in 1910.  This photo and several others like it, were instrumental in creating the child labour act. The photographer was Lewis Hines. I saw this picture a few years ago and wrote the music for the song, but the lyrics only came to me about 10 months ago.
Anyways.... I had no idea what to do for the cover, except that it would be black and white. Then it suddenly came to me as I was getting ready.  I would be the photographer. Beth had an old camera and we took the photos like I was a photographer catching glimpses of life in an effort to bring them to the public attention (much like in music)
Anyways we had a great time, and I really have to suggest this to anyone who is about to begin chemo, to go out and have a whole bunch of pictures taken. According to Joan, they turned out great, however it will be a few weeks before we can see them as she uses film and it goes to California to be processed.
Then today we went to a protest to mark the 6th anniversary of this crazy war. Felt good to be out on the streets again holding signs.
Still not one bird at my bird feeders.
Ken and I are going over to Eugene on Tuesday night in preparation for the festivities on Wednesday.  The doctor has said that I would feel worse on the second day and so we had thought about leaving after chemo. However on talking about it further we think we will stay in Eugene Wednesday night because of the concerns of allergic reaction, which I have read, can occur even later that day. So we will drive back to Bandon on Thursday morning.
The doc told us to work very hard to make sure we treat the nausea aggressively, and early
because apparently if you do not, then the second round of chemo you can get what is called anticipatory nausea, ...just because you expect it, you worry about and....you know how the stomach is.

Speaking of the nausea, Josh, enthusiastically said upon finding out that I would be going on chemo, that I could get a marijuana card, .....:)
We told this story to the doctor, just as  a joke. 
He said, just so you know, I have NO PROBLEM arranging for you to have a marijuana card.  :)

Love and peace to all

Janet Bates
my email is jankenb@gmail.com if you want to write

Thursday, March 19, 2009

or so it goes

Hello everyone
We are scurrying around like busy bees trying to make certain we are ready for next Wednesday.  It will be hard to prepare for a PET scan and then a CT scan and then bloodwork, and then a visit with the doctor and then the infusion of the first chemo.
Low carb diet Tuesday, minimal exercise for the PET scan, nothing but water after midnight, then as soon as the ct is done I will have to eat etc etc prior to the chemo.
I was fortunate to talk last night with Myra's son Larry, who is a chemo/oncologist in Alaska. He was quite in agreement with the treatment plan, he did say that it was a very aggressive chemo plan. He said this would only be given to someone who is young and healthy. 
The two drugs are carboplatin and taxol, the carboplatin can cause peripheral neuropathy, which in extremes affects the use of fingers, it will be closely watched for this. This is also the one that causes the nausea and vomiting, and the drop in the blood counts. So during specific times I will need to avoid being in public as I am more prone to serious infections when blood counts are low. Those days are day 10-14.
Taste is also affected, which accounts for weight loss and in some weight gain.
The other drug is Taxol, and this one also drops blood counts, and causes hair loss, pain in muscles and bones. The big deal with this drug is that it can cause anaphylactic shock. For this reason fairly high doses of steroids are given the night before and the day of each infusion.

The first infusion is done very slowly because of the risk of anaphylaxis so it will take 5 hours. We will then drive home, as the doctor said that the second day I will likely feel worse, than the first day.  One the first day after the chemo infusion I will recieve an injection of Neulasta, which is a medication to stimulate the bone marrow. This drug can also cause bone pain as the centre of the bones is where the blood cells are formed. Larry told me that it was a good thing when you get bone pain with these injections as it was a sign that your bone marrow was healthy and responsive.
Because we will get this here in Bandon, I mentioned at the hospital that I would need it. Debbie looked up the price. This one shot costs 3100.00.....WOW.  Not a vial you would want to drop on the floor.

I can imagine that the chemo costs more......?
Well though I am sure it seems vain I am having the corn row braiding done with my hair in Monday and that way I can save the braids and use them later one. I guess to me it is a level of control
The photo enclosed is my little birdie suburb, but you will notice nary a bird. Hope its just a  matter of time 

Love and peace

Wednesday, March 18, 2009

and so......it starts.....

Hi everyone

Ken and I are on our way home from Eugene with our plan for the next  7-8 months.

I found it extremely difficult being in the cancer centre, waiting room, but once in the office, I was OK.

The radiation oncologist explained that it was a bit like firefighting

The fire crew puts out the initial fire (the surgery), then the radiation takes care of the surrounding houses, dealing with potential burning embers. The chemo takes care of the rest of town.  ..... Well something like that.

I looked so nervous, I think she felt sorry for me and moved up the PET scan to next wednesday, and I will be able to start chemotherapy that day as well.

 I think I have come away with a better understanding of where I am at in this process. 

The chemo doctor explained it this way. There is a possibility that  my surgery may have cured my cancer, however there is no way to know if there are microscopic spread, because there were positive nodes.  She also said that because there were positive nodes, it means that we know this cancer is capable of setting up camp in a distant  place.  The chemo doctor said that the truth of the matter is that there are many people who receive chemo and radiation that likely do not need it, however it is impossible to tell, so everyone at this stage must go through this.

And so...it starts next Wednesday

Ken and I have decided to take this on, the good with the bad. We stayed at La Quinta hotel and they have a very special rate for anyone with a medical need and in fact they said even a better rate for when we are staying for 4 or more days a week. I know this would not be for everyone, but we are wanting to look at this like a little holiday, and try to make it special.  The hotel is right on alton baker park and we spent this morning walking along the trails watching all the ducks geese herons and other birds......extremely therepeutic.  It is a 1 mile walk to 5th street market and a 5 minute drive to the cancer centre. Perhaps I will just stay on radiation forever, or at least just TELL EVERYONE I am going over to Eugene for the radiation....(after it is all over)

I have to say I am becoming more and more positive about all of this, I will feel much better after the PET scan however neither oncologist seemed to expect to find much, so that seems to be good.

I know that there will be days I am very tired during the chemo, and for this I have (with Linda and Ken) created a very complex bird feeder neighbourhood just out my dining room window. We found several very cool birdhouse/feeders at Schindler and our local hardware store.   (theres a green one and a red one a blue one and a yellow one and they are all made of ticky tacky......)  Actually they are very cute, we also got a birdbath, which also might attract them (as long as chewy doesn't scare them away)  Also planted a few colourful flowers......

We also got going on our garden, planted several veggies.

I have also decided to start listening to all the advise people have been giving me.  I guess I have not been wanting to rest, because I have been wanting to prove to myself that I am healthy, and I think I will change my approach.  I have been more tired lately and think that the stress of surgery and the psychological stress is starting to weigh on me.  So will try to rest each day and to exercize and find a balance.  

They have told me for certain that my hair will all fall out and I am considering an extremely different approach, you know I always have to be different. I am thinking of having my hair braided with the corn braids......you know like bo derek

and then when they fall out, I can collect them all and glue them to a hat.

If anyone knows someone local who does those braids, let me know,  I have found a lady in Eugene who I think will do it this weekend, however it would be easier in Bandon.

I am going to have the pictures taken for my cd cover in the next couple of days, while I still have hair.

Love and peace to all



Sunday, March 15, 2009

the eve of the ides of March party

The party last night was just incredible, my Oregon family. Although there was a thought of heading back to Canada upon finding out this diagnosis, I realized that Bandon is where my support is and so to uproot at a time like this would be a mistake. So Bandon is stuck with us.
The past 6 years have been "my favourite" part of my life.
As to how I am feeling, physically, I am feeling much better than ever today.  I had read through my doctors instructions etc and what to expect post op. They described that you would have some bladder and/or bowel cramping, and so though I have been having pain ever since the surgery, I just assumed it was normal. Friday the pain got a lot worse, and it turns out I had a urinary track infection. Took the antibiotics and now all the pain is gone, so I guess I likely had it all along.  I really am going to have to work a bit harder at being a good patient before I start chemo.
I guess the concept of chemo is starting to sink in, and I am a bit afraid. The other night, I actually had a reaction to the antibiotic and got quite sick, horrible night. I was fine the next day and infection gone, however could not help but then think about how much more toxic chemo would be. I have never in my life spent a day in bed.

On Tuesday Ken and I are going over to Eugene to see the chemo oncologist and then we will stay over and Wednesday I will be seeing the radiation oncologist. These will be just consults and I guess my chance to ask all the questions. My guess is that I will likely begin chemo on the 31st of March. Although all it will entail is 2 iv infusions we think we will stay in Eugene for a couple of days so we are close to the cancer centre, should there be any problems. For the future treatments we will likely just come home after them.

I have just sorted out (at least I think I have) how to post a video on here, so this is a video of our concert in Williams Lake, a song called "the little spinner" about the children working in the cotton mills at the turn of the century.  Google "little  spinner" to see the famous photo that is actually what inspired me to write the song


Thursday, March 12, 2009

update after seeing my doctor....the plan

FIrst of all, I wanted to tell everyone that the reason for this blog is to explain to anyone who is interesting in what is  happening  with me and this cancer..............in detail ......and not need to repeat myself.

No one needs to comment, and I would much rather if you emailed me at jankenb@gmail.com  than comment.

I have received so many wonderful emails, and I continue to be impressed by the thought that goes into them.  The emails truly help me and make me more confident, so please don't hesitate to write. They also make me refocus when I am down.

Ken and I are on our way home from seeing my Doctor.  We are filled with new hope. 

Dr Dotters presented my case to the tumour board yesterday morning. Together they worked out a plan of attack. She said that all these doctors were extremely hopeful that we will achieve a cure. She said that years ago when she was  a resident stage 3c patients (which I am) often died, however she said she cannot think of a 3c in many years now who has.

The other very encouraging news that she gave me is that many of the studies I have been reading about 5 year survival rates at my stage, are somewhat misleading. (I had read that it was 50 percent)

First of all I am about the healthiest I could be and second of all, they have only been treating stage 3c endometrial cancer with both Chemo and radiation for a few  years, and so really that does not really even enter into my situation.

(a funny aside) the nurse who was checking me in said I seemed to be moving about quite easily (for being 2 weeks post op) Ken said" she walked 6 miles yesterday and 4 miles the day before that". She looked shocked, and so I said well the instruction sheet said for me to start walking on the second post op day, and to increase from there...., and so I did......she laughed and said, well no one actually listens to that stuff.

Dr Dotters said that "the team" at the cancer centre had told her to make certain I knew how confident they were in a cure.


I have a PET/CT scan booked on the 27th, which is to look for any other evidence of disease. This scan would not pick  up microscopic disease, and so chemo therapy is necessary.

I will have my consult with radiation oncologist and chemo oncologist in the next few weeks and then I will likely start Chemo therapy the week after the 27th of march.

It will involve 3 treatments with 2 drugs. I will get an infusion of two drugs one day, then likely stay another day for another drug to raise the blood count and then I will have nothing for another 3 weeks, and then it will start all over

So that will take 9 weeks.

Apparently the riskiest times will be 10 days after each dose of chemo, because then I will be at highest risk of infection, so will need to stay away from sick people

Somewhere in there I will receive one dose of internal radiation, which is apparently a brief blast of high dose radiation to a small area internally.

THEN after chemo finishes I will start 6 weeks of radiation  to the lower abdomen (once a day 5 days a week)

Then I will do the chemo again for one more set (9 weeks)

and then.........I will be cured and will go on and lead a normal happy life, richer for the experience.......   :)     maybe with a few songs

that are not about war.....

I have to add a little thing about my doctor. In her office was a letter about her own cancer. She has just completed chemo and radiation for breast cancer, and in her note she said "when her doctors told her that they felt she would need to undergo chemo and radiation she said "bring it on"

I am looking forward to the party on Saturday which is going to be at 5 pm, and I would hope that anyone who would like to would come.

Love and peace


Tuesday, March 10, 2009

march 10th

Today I hope to hear from my doctor. She called me yesterday, but I have not yet figured out how to answer my cellphone and missed it. (When I went to get something fixed at the cell phone place the other day the girl could not believe I have used up 2 minutes in 2 months)
I hope to find out when my PET scan will be, and this test will determine if the cancer has spread elsewhere. I feel I am due for some good news, so hopeful about this.
I may not be able to get it done for awhile, as if it is done too soon post op it can be falsely positive.
Ken and I are heading over to Eugene tomorrow for an 11 o clock appt with doctor. Ken has to work on Thursday night, so if by some chance I can have PET done on Friday, I will likely stay and come back later Friday.

I have decided that when my sister Linda comes this weekend we are going to plant my garden, I figure it will be a very positive distraction for me in the coming months, as it has always been in the past.

I found a wonderful site two days ago, called www.hystersisters.com. It is an online forum for women who have had hysterectomies and there are many subsections. One subsection is cancer and women with ovarian, cervical and endometrial cancers post questions.  I posted my grade, and stage and asked about when to expect radiation (it is often delayed after surgery) 3 women have subsequently answered with the same stage and grade as mine, and went through the therapy that they have been through. One woman is a university professor, one is a school teacher.  Some are quite recent, some had their surgery a few years ago. It was so reassuring to know I can call upon people in pretty much the same situation as me for info.
The other issue that has come up (I can only absorb so much a day) is my hair. on hystersisters they suggest you just buzzing it off to maintain you level of control. 
Anne Feeney just wrote and suggested I shave it and donate it to loving locks.
For today, I am going to think about it, ..........................
Too much for one day.
Funny thing, I bought a toque (canadian term for wool hat) at a farmers market at whistler last summer from a women who had just completed chemo. I thought it would be a great hat for shows as it has one very long side to it. Now I realize why she was making them.   Perhaps I will need to dig it out.

On top of all of this, I really need to complete my cd by May.  So back to the studio

love and peace