exercising my options

Hello everyone

Well my gastroscopy and colonoscopy went well.  I had the procedures done here in our little hospital in Bandon.  Where else would I get a present from the anaesthetist before the procedure?  Yes since my colonoscopy, my hat collection has grown substantially.  Cool eh?

The surgeon found a polyp in the colon and one in the stomach both of which appeared benign. (now where have I heard that before?   :)  )

Then Josh and Ken and I went out to the Wheelhouse and we all had clubhouse sandwiches.

I went to my second Yoga class today ( Yemaya's class) and it seems to be very good for the soul.

I have read where the real fatigue that goes along with chemo is 

much less with regular exercise, so Ken and I are trying to get out most days for a walk in the woods. Today I was working on vocals for my cd, and just could not finish the lines, I was too short of breath.

So I drank a gallon of water, and Ken and the dogs and me went out and did our 2 mile loop out in the woods and I ran perhaps a quarter to half a mile without too much trouble, then I came home and had no trouble finishing the vocals on two songs. Perhaps I just need to get warmed up :)

Ken and I both found ticks crawling on us after we got home. Who knows how many the dogs picked up. (that is the first time ever that we BOTH got ticks)  At least I did not need to worry about them being in my hair.

Speaking of hair, I just noticed today that all the hair on my legs must have fallen out in the past few days. You don't notice that stuff as much as the hair on your head. 

I think the eyebrows are also starting to go, but once again you do not end up with a hunk of hair on the pillow when your eyebrows fall out. Ken did point out to me that if I had eyebrows like my father and they fell out I would notice it. My father has eyebrows that when you unfurl them, reach up to top of his forehead. One thing weird about how my eyebrows are falling out, they almost look like they have been professionally shaped right now.

When you lose your hair from chemo it pretty much always grows back, however this is not the case with radiation. Usually when an area is radiated the hair that is lost never grows back in.  Since I will be getting pelvic radiation I  may never need to worry about  bikini waxing...(not that I ever have before....well.... maybe once) So all that hair also falls out.

Anyways, I am doing really well the past few days, only momentarily letting my mind wander to the dark side. I just wanted everyone to know that.

love and peace

Janet Bates

jankenb (at) gmail.com

the toilet blogeries

Hello everyone

Well as I write this I am trying to drink down the nulytely, which is the prep for the colonoscopy.

It is pretty ugly and if you have had one in recent years you might have been spared this with this other product that was taken off the market just a few short months ago because of concerns to the kidneys.  So now we are stuck with drinking 4 litres of the most gawd awful tasting stuff.......quickly.

They say a cup every 10 minutes and I am going to use this blog to .....  delay ...that.  Then again perhaps it is better not to have too much time to think about it.

I have been having left chest pain for some time now and have tried to explain it away and ultimately it really seems related to my stomach, it is worse when my stomach is full and worse when I have heartburn. I guess somehow I feel I would be able to deal with all of what is going on if I did not have the concern about my left chest.  I have had years of gastroesophageal reflux,  for which I just have small 3 inch blocks under the head of the bed and it seems to control it to a certain extent.  Reflux is where the muscle at the bottom of your esophagus becomes ineffective at preventing the stomach contents from washing up to your esophagus.

Your esophagus is not blessed with the same type of cells that the stomach is and so is unable to tolerate the high acid levels that the stomach cells do.

When the esophagus is exposed to acid, it "burns". The tissue is damaged, much like a burn and a person has pain. Thus the term "heartburn".

When this occurs over many years, the cell changes to the lower esophagus can become precancerous and the term is called "Barretts esophagus". If a person is found to have barretts esophagus they need to have endoscopys from time to time to ensure it has not become malignant.

All this as a description as to explain that I am also having an upper endoscopy (or gastroscopy) tomorrow as well.  I thought since I was having the colonoscopy and being put to sleep, might as well look at this to see whether there is any abnormalities of my esophagus that might be causing this chest pain.

Since I have had symptoms of this for years, I might as well get it checked out now as well.

OK I am half way through the nulytely now.

I like to think that once I am over this cancer treatment, I will have made up for years of ignoring symptoms of many things........and I will be pristine.

I will be able to step forward with the thoughts that no cancer could possible survive what I will have just been through.

MATH....a good idea when calculating meds. I read the instructions on the Nulytely and it said to drink an 8 ounce glass every 10 minutes, I did a rough estimate and figured I needed to get it all down in less than an hour. 

Well down to the last 8 ounce glass Ken said, wait a minute, what are you doing?

So I did the FORMAL math and calculated I was supposed to drink it over 4 hours.....OOOPS.

Well I am going to have to close here........or write this on the toilet......

PS I thought I would start sharing some of the photos that were taken at the photo shoot for the cd cover, ( I decided to do that before I lost my hair)

peace and love

janet bates

jankenb@gmail.com

www.janetbates.com

the day after sunday

Hello everyone

Well I guess one way to "deal with" a diagnosis like endometrial cancer is to find something worse. On Saturday I got the results from my echocardiogram which demonstrated pressures with in the right ventricle indicative of pulmonary hypertension. We reviewed this with a Cardiologist in Eugene on Saturday, and again on Sunday.  He said that you cannot make the diagnosis without a stress echocardiogram, which would show you what the pressures are during exercise. There is also regurgitation of the tricuspid valve. This is the valve that separates the right atria and the right ventricle. This means that that valve is leaking. This also needs to be quantified and during the echocardiogram they can measure pressures across the valve.

Although I have totally freaked out about this, I am going to try very hard to assume that this is NOT pulmonary hypertension, but something else. I am going to "back away" slowly from the drivers seat and perhaps let a clever cardiologist take over.

We have an appointment for the stress echo and consult next Tuesday in Eugene.

This Friday is my next brachytherapy and next Wednesday is chemo.

External beam radiation is the next treatment I will be having and it will start May 19th or so.

To begin with there will be a 4 hour session for "simulation"

This is where they use a ct scan to mark out where all my key organs and bone are, then make a map to determine where the radiation will be directed.

They make a mold of your body and so that each time you go back for radiation you will be in exactly the same position.  They also mark your skin with little temporary tattoes so they know where to line up the radiation beams.

One of the biggest concerns with this type of radiation to the lower abdomen/pelvis is scarring of the bowels which can cause bowel obstructions any time down the road.

I decided that since I will be due for a colonoscopy in a few years, that I am going to see if I can get one before radiation starts, because it will be a much safer procedure before radiation. After a person has undergone radiation to the bowel area a colonoscopy can possibly be technically more difficult. Also endometrial cancer patients have a somewhat higher risk of colon cancer, so to get all my bases covered, will likely do that this week.  Could be a very busy week.

Ken and I have also decided that this is the time we really need to spend time together and so we are going to sell the property that we bought up in Canada last summer and pay off the debt it created which will allow Ken to work less.

We are going to go on a big trip in the fall.

Love and peace

Janet Bates

jankenb@gmail.com

Sunday

Hello everyone

I have not written for a few days, I guess I have been reeling in a whole new diagnostic problem.

I had a good trip to Eugene and was able to talk with the oncologist about my fears and concerns.

We reviewed my case from perhaps a more realistic approach and clearly this is the area of endometrial cancer that has a lot of holes in the data. My surgeon Dr Dotters is going to a major oncology gynecology conference and Dr Gemmel was going to encourage her to pursue preliminary data about the more recent studies.

I guess this all left me with a better feel about all of this and at least a good feeling that my doctor has a clear feeling of where I am at, and she seemed to really care.

Unfortunately, yesterday I was "blessed" with another problem that likely has nothing to do with the endometrial cancer.  I had a echocardiogram on Thursday, which showed at least some evidence of pulmonary hypertension.  Although I do not have all the answers yet and we contacted a cardiologist in Eugene and the case is far from clear,  it is still an extremely concerning finding. We will be going to Eugene this week for a stress echo and consult with the cardiologist.

I have been having intermittant shortness of breath since before the surgery. It has been so vague, and all my chest cts were normal as were my chest xrays, it was a hard thing to describe and between surgery and chemo, I guess I have figured I had enough "good reasons" to be short of breath, that it was likely nothing important.

Pulmonary artery hypertension is a disorder that is rare, and not much is known about what causes it, there is a familial form that tends to run in families, then there are those that occur "out of the blue"

It is also caused by those drugs that were banned many years ago, the fen fen....weight loss drugs, it occurs in AIDS

a secondary form of it occurs in people with chronic bronchitis , advanced lung diseases, and at the later stages of those who suffer sleep apnea.

It is basically where the resistance builds up in the pulmonary vasculature, and the right side of the heart fails because it is pumping against a high resistance.

Without treatment people live about 3 years, with treatment perhaps 6, and a lung transplant is curative.

So though we do not have any solid answers about this, we are looking at something else that will most likely drastically shorten my life.

I think that with this latest news, though extremely upsetting, I am clearly put into the stage of trying to figure out how I want to spend the next few years, which is perhaps a good step in what I am doing.

Ken and I are clearly at a stage right now where he has to work, however we are going to pursue ways that that can be minimized, and while we are trying to sell our house and have been for years, we may sell "other properties" just to allow us the time to spent right now, working less. 

I am actually feeling pretty good this morning with this. Ken and I are still trying to get out to the woods every day for a 2-2.5 mile walk and I try to make it brisk, just to prove to myself that there is nothing wrong with me.

I am hoping that none of this new info will have any effect on my cancer treatments, but again will know more by the end of the week.

I was thinking a lot the other day about my blackday blog and whether I should have sent it and   whether I would drive people away explaining my deep dark thoughts about it all.

There is a sense of trying to be up all the time, because it really makes things more comfortable for the people around you.  And you want people around you, who could possible want to go through all of this alone. I guess I felt perhaps a bit selfish in not keeping to myself.  Here I am sharing my grief with others.... is that wrong?

Then I thought more about society and how there is a tendency to hide the ugly bits in a persons life, just sweep them under the rug, so that no one else every has to deal with them.

Always make everyone else confortable.

I was talking with Kertis the other day and we got talking about this, and the conversation somehow led on to the very similar situation amungst soldiers. It has long been the policy in the military that soldier just "buck up" and never talk about the horrors of war.  No one else has  to be exposed to that unpleasant conversation where a soldier talks his deep dark secrets, the ones that he will carry with his his entire life, all by himself. 

I guess I wrote "your own worst enemy" based on this concept.

The hardest things a person must endure, are endured alone in our society.  Somehow there seems to be something wrong with that.

Not only that, but in the case of the soldier, no one ever really knows what war is really like.

In countries like France and Germany, everyone know what war is like, it was on their doorstep, it was out in their streets and often right in their home. In the US war in only on the the tv, along with all the cops and robbers shows, and all that separates them is an advertisement.

How I digress,

My thoughts go out today to Yemaya, who lost her Bill a few days ago.

He died swiftly. Yemaya all my best wishes go out to you and please let me know if there is anything we can do.

Love and Peace

Janet Bates

jankenb@gmail.com

radiation today

concert went well

I am off now to radiation today will write tomorow

I am doing extremely well today, I have ups and downs...

love

janet

Just don't go there

Hello everyone

Well everyone seems to say I am handling this all well and to be honest, I really am not.

I cry a little every day and yesterday I cried a lot of the day. I just can not figure out how I got here.   A few short months ago, Ken and I were making preliminary plans for our first BIG tour, and today I wonder if I will be here 3 years from now.  I cannot deal with memories from the past as they only remind me how short life can be and I cannot deal with plans to the future because.........  well

I have exhausted all the research only to find that endometrial cancer is really a disease that has largely been ignored by researchers because it so rarely gets to advanced stages.  They have few people to study.  The incidence of the disease has not changed much but the mortality rate has doubled in the last 20 years.

With so few people to study, it is very hard to know where I fit in there.

I guess I have to say I am angry   it just seemed so much of my life had just gotten so much better, so many things had been worked out, so many of the hard bits were over.

The only true "escape" I feel I have right now is to watch old tv shows in the evening. I crave them because when I am watching them, my mind is totally off of this. (right now I am hooked on "the closer" but last night was ruined because she got some medical problem.)

When I cannot stand it anymore I take meds to help me relax.......I guess another form of escape.

I have no idea how I will wait the 2-3 years.. to see if any of this worked. Most recurrences occur in 3 months to 3 years.

I am struggling for a way to deal with all of this because I know my feelings are self destructive, and from time to time I summon up the energy to "rise above it", but I know I am going to need more of a long term plan.  I am hoping it will be easier to deal with once chemo and radiation are over, and I am ?feeling better.

They say courage is being able to function when one is afraid.... Well I am not really feeling courage, I am merely putting one foot in front of the other.

Yesterday, I managed to turn away from all of this by the line "just don't go there", so for today that will be my way of avoiding all those dark thoughts.

Love and peace

janet bates

jankenb@gmail.com

Hello everyone:

Well Ken and Guy are out in the yard with a large bobcat machine, clearing away some of the underbrush..."the easy way".  My goal for the day will be to maintain enough underbrush such that I might maintain my newest pastime, soaking in the hot tub naked in the afternoon.  Somehow something has always gotten in the way of that in the past.....neighbours....children.... I am shy.    Well I used to be shy. In my family I am the prude, the only one in the hot tub with my bathing suit on. 

We have had a hot tub for years and almost never used it, purely based on a lack on interest on my part.

The aches and pains of chemo seem to respond well to the heat and the sun shining down seems to "heal".  

 We do live on a 5 acre lot, so there is a buffer from the neighbours.

This time around with chemo, for some reason I have found eating to go well, it has been drinking that really nauseated me. I have tried a whole host of things to drink, everything tastes awful.  I have gotten a bit dehydrated. 

Yesterday I discovered watered down cranberry juice. ( I should make it very clear here that I am in NO way associated with Ocean Spray, nor did they pay me to say that).  I seem to be able to drink it by the gallon, which is what I have been searching for. I feel SO much better when I am hydrated, but I have never had such a hard time drinking. I know that sounds weird.

Off to check out my new "and enlarged" back yard.

love and peace

janet bates

jankenb@gmail.com

the power of protein

Hello everyone

Great to emerge on day 6 of chemo.  To me its like starting down the other side of the mountain.

Over the weekend I have been taking "whatever drugs" it took to keep me asleep for >10 hours.

I figured my body would do a much better job of healing while it was sleeping.

 I found this time around  I was craving protein, nothing but protein.  So where a dozen eggs usually lasts us a month or two (remember the cardiac history), I have gone through a dozen this weekend.

The other odd thing this time is that I was hungry all day yesterday, have not been like that since before surgery. I was reading where the chemo drugs cause so much damage to cells that you need extra protein for rebuilding new cells. So it seems as though my body is  takin care of me just fine.

I find the more I do the more I am able to do and as long as I take little rests I can do a whole lot in the garden. I still have not planted potatoes but I guess there is this week for that.

A mouse has joined our little birdie township and he seems no more welcome than the rat was.  There is this big fat squirrel whom I am sure has named the town after himself. He was there first, he probably has already started a whole new religion based on the "miracle" of finding this place in the middle of nowhere.  He clearly seems to be the boss, and he ain't too tolerant of vermin like mice and rats. He puts a run on them, and then......, there is peace in the valley.  ?? &$#@....again

I think he has his eye on the dogs too, but I think he might have to "bulk up" a bit before he takes on chewy and rex.

love and peace

janet bates

jankenb@gmail.com

sum days just don't add up

Hello everyone

Well yesterday was definately a down day wondering what I am putting myself through all of this for. It is all so unclear.  The hardest part is knowing I will have to wait a couple of years to know whether all of THIS achieved anything. When I get down, I try to distract myself with doing other things, but on the days after chemo there is not a lot of energy.

I did manage to replant 100 basil seedlings into bigger pots, which distracted me for awhile.

Ken and I went for a short walk in the woods which was good.

I build a lot of my day around planning what to make for dinner, which I did yesterday, but then could not bear to cook it. Funny thing, just cannot stand the smell of things cooking, I was fine eating it after Ken cooked it.  It was an asparagus, wild rice, tomato and lemon zest Frittata.

I got everything ready and he cooked it while I plugged my nose, and then  I went on to gobble down two pieces, weird eh???

I think my energy is a bit better this time than last time, and according to my blog, I started feeling better on the Monday.

Tracy and Jim are going to work on some tracks on my cd for the next few days, so that is something to look forward to

love and peace

janet

jankenb@gmail.com

The new "irradiant" me for the house concert..

  

Hello everyone

Just got back last   night from Eugene, had my first brachytherapy there yesterday (I will have 2 more on the next two     Fridays) I try not to repeat myself too much, but with each step 

I learn a few more details about what it is all about, besides being 52 yo I have heard it is within my natural brain age to repeat myself.....sometimes.  OH AND by the way, is this a trillium?

The brachytherapy is where they insert a cylinder inside my vagina, then put a foley catheter in my bladder, they blow up the balloon on the catheter with barium (so it will show on the xray)

The idea of brachytherapy is to radiate the vaginal vault. The vaginal vault is what we call in medicine a "potential" space.  Sort of like the bladder. When the bladder is empty its walls just lie on top of the bottom walls. The vagina (when empty) is just a flat slit on an exray. The

 cylinder is attached to a machine that has the radioactive cobalt with in it. WHen they feel that they have the cylinder placed right, they all leave the room and for 10 minutes the cobalt irradiated cylinder radiates 5mm of tissue all around itself.  The purpose of the balloon in the bladder was to make sure that the bladder was sitting over 5mm away from the cylinder.

At the end of the procedure they take out the

 cylinder and a guy comes with a geiger counter to make sure I had not "sequestered" any of the cobalt...to share with my friends :)

We then went and bought some more bird houses, and met my Eugene friends for lunch.

Ken had to work Thursday night, so being as it was my second chemo day, a group of friends came over and stayed with me (Irene came all the way from Portland and then she took me to my appointment in Eugene on her way home) Ken caught up with us later and drove me home.

The night of the "PJ" party I would be totally lying to say I was the life of the party.

 We watched V for Vendetta and I fell asleep at the end to awaken to Beth Brenda and Irene trying to figure out how to turn off the projector.  We did have great fun though working on the "bo derek" wig, Beth and Irene conferred as the best way to do it, and of course Brenda was on hand to take pictures, which I hope to get onto this blog.

Irene is hoping to come to the house concert here next Thursday 23rd of April, and bring my "wig".  

  Which by the way I wanted to invite everyone on this blog to come to the house concert. Long story but the artist who is coming, I tried 2 years ago to get out out for a concert and we had planned for about now, but his agent who follows my website saw that I was ill and, turns out he had a large gap in his schedule from san louis obispo to Portland. So I thought what the heck!!!!!

EVERYONE IS welcome to this concert, and just email me  jankenb@gmail.com  for directions. This artists music I absolutely LOVE, and for the many reasons  I have put on house concerts, this one I am doing for me, and I hope everyone can come and make it a success. Ken and I will play a few songs at the beginning, possibly with our drummer (if I am up to it)....Just snacks this time, and bring what you would like to drink Door open at 6, Ken and I play at 6:30 and Jack Hardy plays at 7

  http://www.jackhardy.com/  We do not have a price at the door, more of a suggested donation of 15 dollars, but I am aware that not everyone can afford that.

Also to add a more personal touch to the night, I would like to make this party a smart  hatters party  (with no hair I am wearing a lot of hats).....so everyone wear a hat and no one will know who the bald ones are.   :)

For snacks...try to focus on anticancer snacks... :)

The next few days are the hardest days of chemo (in my brief experience) The big expensive anti nausea meds have worn off and the fatigue is setting in. If last time was any indication, I emerged from this stage about Monday night, so I should be fine for the party.

Everything I ate yesterday nauseated me EXCEPT the egg Mcmuffin at macDonalds....how about that?   So its eggs and toast for me 

For some reason with the chemo the other day I put on 5 pounds of extra fluid, and that combined with my shortness of breath, (and I guess my heart murmur)

they have booked me for an echocardiogram on Thursday to ensure that the Taxol is not causing any problems with my heart.  (but then again it could have been the subway sandwiches and chips for lunch.....:)

I have yet to figure out how to get the photo s in the right order

but you get the idea

Love and peace

Janet Bates

jankenb@gmail.com 

chemo day today

Hello everyone

Just finished chemo and driving around North Bend doing errands with Ken, but I am staying in the van.  We came across a big rally, was not clear what it was for, but with a lot of flags....

I figure it had something to do with tax day today, and there was a poster that said fire the government.....hmmmmm

My blood count came up enough for them to give the chemo today, but some of that might be facticious as the steroids I took last night artificially raise the blood count temporarily by "demarginating " the white blood cells that are normally attached to the vessel walls.

In easier terms, normally there are many white blood cells attached to the vessel walls, crisis such as infection (or steroids)  will make these cells come off the vessel walls and join the blood cells that are already in the vessels. So this makes the White blood count "artificially" high.

Fortunately I am getting the neulasta tomorow which will boost the bone marrow to produce more white blood cells. 

I was wondering if I really needed this drug, however now I am convinced.  By boosting the bone marrow it kept my white blood count at a very good level until the last few days.  It seems to cause many of the side effects, mainly bone muscle and joint pain.  (I am VERY lucky to have a close friend whom I went to med school with,  who is a hematologist, to ask some of this stuff.

Chemo went very well today, I had it in North Bend, which simplified it. They also seem to have a more aggressive approach to the nausea. I had another med added to the medication regime called Emend.  325 dollars for 3 pills. (we left the dogs in the van the day we picked it up.....to "guard the pills" when ever we left the van). Emend is a med that "prevents" nausea and only works if given before the nausea occurs.   I also recieved Iloxi IV prior to the IV chemo, and it is another  antinausea med that acts for 3 days. So I guess I am covered.   All I need to do is find something that tastes good.

On the subject of food, we have gradually been making some "amendments" to our diet.

I guess I always thought I  would have a heart attack when I turned 52, which is what my mother did. Turns out not so. Looks like endometrial cancer instead.

I have spent the past 28 years following a diet that was low fat, very little meat basically vegetarian. I have exercised pretty regularly, at times to extreme (hopefully this part is not just in the past) 

For many years Ken and I " did" (he cycled, I ran) 21 miles every Friday and a couple of times a year 26 miles in a day. I even went so far as to run 35 miles once. We have drank red wine REGULARLY...... perhaps sometimes too regularly.  The anaesthetist before my surgery referred to my cholesterol panel as being "enviable". I stopped smoking about 3 months before my mother had her heart attack, 28 years ago.

It seems like the whole business of my health prevention has been akin to  swatting away at mosquitoes and then getting bit between the shoulder blades, just where I was not hitting.

I have so many friends sending me info on the growing body of evidence that people who eat diets high in certain foods (even after you have controlled for other factors) have a lower risk of cancer, and cancer recurrence. 

I have exhausted myself reading study after study to determine "my chances" of having a recurrence, only to find that endometrial cancer that gets to the stage I am at is relatively rare, when you compare it to cancers of the breast, colon, and prostate. 

45,000 new cases of endometrial cancer are diagnosed in the US every year and 80% of those are caught before the cancer invades the myometrium, so these people have an excellent prognosis and have no further treatment. (beyond a hysterectomy and removal of tubes and ovaries)

The remainder that are treated with chemo and or radiation are a paltry 9000 a year, which sounds bad to say, but a very small group to actually study, especially when there are many other variables that affect outcome.    So the truth of the matter is that no one really knows the truth of the matter.  So I have decided to try hard to believe that my chances are excellent with the treatment I have been prescribed AND do what I can to improve my chances with diet.

Some pretty convincing stuff out there. The real biggie is green tea and it apparently has to be Japanese green tea, and it should be steeped for 10 minutes and drank within an hour. I really wish that green tea was as easy to "develop a taste for" as red wine was.

Turmuric, is also extremely good at clearing out cancer.....probably the smell.

Actually they suggest that if you want to prevent cancer to mix a teaspoon in with olive oil and black pepper and put it in soups and stews. I wonder how it would be in a smoothie. If you already have cancer it should be a tablespoon.  Hope I REALLY like it.

Garlic, we have long eaten tons of, in fact we buy those braids of them at costco and challenge ourselves to complete the whole braid before any stems start growing, sometimes we do sometimes we are close.

Asparagus apparently eaten every day, has an effect on cancer, non medical studies have shown complete remission of some rather poor prognosis cancers.

Pumpkin  against prostate cancer, we can eat them for Ken.

Ginger...I have devised a way to better save ginger from drying up and going bad, after all we only eat it every few weeks. I have found that if I put one root of ginger in a pot with dirt and water, it will keep, until you want to use it. It might even start to grow..

The idea is you can buy more ginger root at the store and any extra put in pots....until you need it.

Berries such as  strawberries, blackberries, blueberries, cranberries raspberries....I am sure I have missed a few, in winter I buy them frozen at rays, and the company that distributes them is from oregon. I have also found an instant hot cereal that is nuts and seeds and is listed as fair trade. So I have my frozen berries mixed with the hot cereal every morning. I add All Bran to the top and a little yoghurt (with activa).

This is all I can remember right now, I have taken a LOT OF DRUGS today, so my memory is not quite all there.

I finally got the guts up to post a photo with no hair.

Oh and by the way, I feel great 6 hours after chemo!

love and peace

janet bates

jankenb@gmail.com

a short late note

Hello everyone

Just a quick note to let you know, Ken and I spent the day trying to make sure we have everything taken care of before chemo tomorrow.

My bloodwork this morning was a bit concerning as the White blood count is low.

The ANC which is what they use to guage whether it is safe to give the next chemo shot stands for "absolute neutrophil count"

It is usually somewheres  above 2500 and the level that is the cutoff for chemo is if it is lower than 1500

Mine is 1155 today, I will have another blood count at cancer centre tomorrow and it will likely be up, if not chemo will be delayed.

This is also the time to be away from sick people......

I will write again in a few days

love and peace

Janet Bates

jankenb@gmail.com

big week

Hello everyone

Well this week on Wednesday at 9 I will be going to North Bend for my second chemo treatment.

On Thursday, since Ken is working I am having a pyjama party. Friends to come and stay with me while Ken cannot. I am certain there will be stories to tell about that one.

Then early the next day Irene (my friend from Portland who will also be at the "PP"

will drive me up to Eugene for my first radiation treatment.

This treatment will be Brachytherapy, which is also called High Dose internal radiation.  This is to treat the area of highest risk of recurrence/residual cells. (The area where the lymph nodes were with metastasis)

Radiation works by damaging the DNA of cells rendering them unable to reproduce.

A cylinder that  is attached to a machine is inserted into the vagina. (for lack of a better description, the cylinder essentially looks like a fancy tampon)

 Then when...(I guess when everyone else leaves the room??) radioactive cobalt flows into the cylinder, for about 10 mins (I think)

Radiation is a lot like real estate, it is all about location location location. The "dose" of radiation that the tissues get is totally dependent on how close they are to the source.  As a rough example (I do not know the details)...being 5 mm away from the source has the power to detroy tissue, yet being 8 mm away might only cause a burn (like a sunburn)

METRIC CONVERSION  a mm is a lot smaller than an inch.

Well anyways, this is the first form of radiation, and apparently it is "no big deal" at least that is what the people who will be GIVING it said  :)

I will get it 3 Fridays in a row.

I will not start FORMAL radiation until May 11th.  From then it will be 5 days a week for 5 weeks.  Then more chemo

Well I have said it several times and I cannot tell a lie, I have not yet made it to YOGA, but I WILL TODAY... if nothing else but to show off all my new hats, which fit SO much better without hair there.

love and peace

janet bates

jankenb@gmail.com 

no hair day

Hello everyone

HAD  A GREAT day yesterday. Went and walked the trails down at New River with Beth, Guy and Vickie (two fine women and a nice guy). I think we put on more than a couple of miles, did not find one useful mushroom nor a pretty flower, however we told many a rat story. When we had all sufficiently ran out of rat stories we extended the topic to "related" rodents, such as packrats, mice, seagulls...... politicians.

Sorry to be late today, I did rounds at the hospital this morning, PLEASE don't anyone tell my sister Linda, she will KILL ME!

I am really feeling great and I am sure my blood work is NORMAL and I just love going over other peoples medical issues. Some of them seem easier to do something about than mine, at least in the short term, or at least see some evidence that I am doing something. I do truly love being a doctor.

I had all my hair shaved off yesterday, except for a tiny amount of my bangs, which seemed like the only part that did not appear as if it was going to fall out soon. Everyone says it looks lovely and that I have a nice shaped head, I am not totally convinced yet. I will hold off posting a picture till Ken can take one.....that I like..?

The odd thing about things that are inevitable that take awhile to happen, is that you accept them over a period of time, so that the final act is not so painful.

It was not really a big deal for me getting all my hair shaved off yesterday, because I guess I have had a month or so to prepare for it.  The braids have all been preserved perfectly and there are a lot of them because I have/had lots of hair. SO in effect we could make one with braids and one without.?? We will see.

Anyways I slept very well last night without all those little elastics poking into my scalp. My head feels very cold, so will certainly wear a hat a lot for some time just to keep me warm.

Love and peace 

Janet Bates

jankenb@gmail.com 

getting ready for next chemo on wednesday

Hello everyone

Well half my hair is gone now. The braids that were hanging on by a few hairs were also getting quite matted with all the hair that had fallen out and stayed in the braid.  So I talked Ken into shaving them off last night.  So the back of my head and the left side are shaved, likely the rest tomorrow.  The braids look great in a zip lock bag.

Ken and I went to the woods yesterday and walked 3 miles and I realized that I really am feeling pretty good. The abdominal pains that plagued me for months are gone, and the shortness of breath I have had for a few months now, seems to be much improved.  And of course the painful joints and bones from the chemo are also temporarily gone, which in itself made me feel good, because when joints hurt there is a sense that somehow damage is being done by the chemo, and to feel this good now, it reassures me that THAT part of chemo is temporary.

Ken and I are "reviewing" the last chemo to find ways we might do better, so as to make this time a more "pleasurable experience".  One thing will be LOTS AND LOTS of fibre before chemo, as I was unable to tolerate it after and if you do not start out constipated, hopefully you can just "maintain".  I figure that the heartburn was from the constipation because I have such a short torso there was just NOWHERE FOR IT to go.

This time I can take a lower dose of steroids, because I did not have any apparent reaction to the Taxol last time.  From what I have been reading about Taxol, it is a very powerful anticancer drug that in the past was limited in its use because of the severe reactions to it.

I read a study where a women with endo cancer with metastasis to both lungs was actually cured with the use of taxol alone. I feel fortunate that I did not react to it. Only other reason in the future that might limit my use is if I were to develop (and this is something that happens after several doses) numbness of my fingers and toes which can eventually lead to walking and hand use problems.  (none noted yet)

I will be getting blood work done on Tuesday. Chemo 9:20 on Wednesday.

This time I will be having a CA 125 done. I had one done preop and it was 27.  The norm has been under 35 in the past, more recently many consider a normal should be under 25 in post menopausal women. 

Ca 125 is a tumour marker usually used to follow the response to treatment and to predict the prognosis after treatment. It is usually used in Ovarian cancer, but has been found to also be helpful with endometrial cancer.  In fact having a low ca 125 preop is felt to be a good prognostic indicator of survival.

There are some who have advocated its use as a screening tool for ovarian cancer, however it is not very specific and many women would have unnecessary and potential dangerous operations needlessly. The other limiting factor is that it is only elevated in about 73% of patients with ovarian cancer.  It will be a bit helpful with me, to determine if treatments are effective, but will be quite limited. In women with a very high ca 125 preop and then after a few chemo treatments it drops that is a good sign that the treatments are working and that the drugs chosen are effective.

If mine were to drop down to the under 10 number and stay there, then theoretically this could be a very good test to follow me for signs of recurrence

Well have a great day, a group of very fine women and me are going for a walk this afternoon to talk more about rats.......my feelings are changing about rats

love and peace

janet Bates

jankenb@gmail.com

Waiting for braids to fall

Hello everyone

Well I am caught up in a bit of a conundrum with regards to my hair. My hair is tied up in corn braids with elastics at the top and at the bottom.  I am of the thought my hair will more than likely all fall out, however am clinging to a tiny strand of hope, because I wore a tight bathing cap during my first chemo. The purpose of this was to decrease the blood flow to the scalp, thus decreasing the amount of the drug that gets "delivered" to those hair follicle cells.  In some ways if this worked at all, it may just complicate matters.

Right now my hair is falling out in clumps, but since they are tied into braids, my hair is all well contained ...on my head.  Somehow this process is reminiscent of my teeth falling out as a child.

First they would be loose, then we would wiggle them then they would be hanging by a thread....then all the stories by my parents about tying my tooth to a car and driving away....

I wonder if perhaps I leave a braid under my pillow if the hair fairy might come and pay our taxes.

Well in some ways I am ready for it all to go, but then clinging to the hope perhaps that SOME of it might be saved, and I might have SOME long hair....

Each braid is hanging on by ..... less hairs that they began holding on with.   My forehead is looking more and more like Ken's.  The braids are hard to sleep on with the elastics up at the tops.  Oh dear abby what shall I DOOO?

I have lost about 10 lbs since all this began, likely the first 5 were the stress of the initial diagnosis, then a few with surgery and a few with chemo.

 Since this is an Estrogen receptor positive cancer, it means that it is stimulated...to grow by estrogen.  The reason for this is that it is an "Endometrial cancer" and endometrial tissue grows during the normal menstrual cycle when the estrogen is the highest. So when endometrial tissue becomes cancerous, as in my case, it grows, and the thing that makes cancer cells different from normal cells is cancer cells do not know when to stop. Normal cells will continue to divide until there are cells next to them, when they come up against other cells, they know to stop reproducing. Cancer cells lack this "knowledge".  Since my cancer is from the endometrium it will grow in the presence of estrogen. The pathologists test the cancer for estrogen receptors, and mine was quite positive for estrogen receptors. So for me it is extremely important to stay away from estrogen. Estrogen is normally produced in the ovaries and I had them removed, so....where else does estrogen come from?

Well that is an important issue here, it is formed in fat cells, which is why this form of cancer is much more common in obese people. It is also much more likely to recur in obese people. 

In the studies I have followed, the BMI (body mass index) of 25 seems to be the cutoff, that they compared.  You can calculate your bmi here.

http://www.nhlbisupport.com/bmi/

So for my sake it is going to be incredibly important to maintain as lean a body as possible, to prevent recurrences.

I continue to be flattered by the number of people reading this, and the number of people searching for more info alternative approaches to treating/preventing cancer.  I will try to eat more garlic, more green tea, asparagus, turmuric, tomatoes. I am getting more and more conscious of all the foods that might help. I wonder perhaps if someone can find an article to say that pizza every night not only prevents cancer but it also kills cancer cells better than chemo.

Love and peace to all

Janet Bates

jankenb@gmail.com

new doctor day

Hello everyone

Just a short note, off to get my blood work done at hospital today, and then off to North Bend to see Dr Cook, who will be my new Chemo oncologist. Such a relief to be doing next chemo (April 15) so close to home. This way instead of looking at a menu trying to find something that appeals to me, I will have my entire cupboards and fridge, not to mention my freezer.

I have been making up meals in bulk and freezing them for next chemo. One thing I did find was that even if I was hungry when we started to make something, by the time it was done, I had lost my appetite. So I am planning for quick things. 

A major part of our lives is cooking dinner, I spend a lot of time cooking dinner every night and often Ken and I both do.  

I am also off to find a hand game a friend suggested. It is a hand held game player that has all sorts of games and puzzles geared at stimulating your brain. You are given a brain age when you start and then you work towards lowering it.  She has just got back from Mauii and found it great for lying on the beach, she thought it might be good for lying on the couch post chemo......(I will pretend)

Last night Ken and I were snuggled up watching old Law and Order shows, which we do every night (good distraction), and realtor calls up and someone wants to look at house at 9:30.

So we spent the next hour clearing away the "post chemo sprawl" our house has ended up in and went out in our van to watch the rest of Law and Order while they looked.

SHEESH>>>>> nuts.....to be continued

Gotta go now

love and peace

Janet Bates

jankenb@gmail.com

well it had to happen, it was inevitable

Hello everyone

Well I just looked out at my little birdie metropolis the other day, and there were chipmunks and squirrels and chickadees and even a few finches feeding. But there in the middle of it all was a rat.

I did not notice him at first, (odd how I just denoted him a male without checking first) because he was just sitting chomping on the bird feed, same as all the other critters, it was the tail.

That tail gave him away.  There was nothing fluffy, or stripped or cute about his tail.

It was long, and black and.....  you know... rat like.

I thought.."oh great" "now what"....

Then I thought about it, here I am thrilled to have all these "creatures" eating at my birdfeeders, and he is doing the same, why do I HATE HIM?  I think he is even in the same creature family as the chipmunks and the squirrels....rodents.  I have not heard about a case of the Bbeubonic plague recently. Most diseases of humans seem to be contracted from being sneezed on, or touching the counters at Walmart.  So what the heck, perhaps I will let him stay.

On the topic of rats, I thought I might explain some of the details I have learned about insurance companies.  We have lived in the US for 12 years and have only just now really learned how insurance companies work. 

 When you go out and compare insurance companies I have never really known what parts to compare and what is important to me. After all, most people have insurance for just the situation I am in, yet never think they will need it.

Financially this would be considered the medical disaster.

When Ken left the university, it was the first time since we have lived here that we have had to get totally private insurance. First we had it through NBMC, then through the hospital, and then through the university.

When we applied, Ken and Josh had not been to a doctor in years, so they were approved. 

I had seen a doctor about vaginal bleeding and my case was further reviewed and I was also on a medication and I was refused insurance....no insurance, I went a month without insurance.

Fortunately in Oregon, if you have been refused by an insurance company you can be covered by a plan called oregon insurance pool, it is with Regence Blue cross and I am sure there must be some government subsidy. There is no dental available and the plan I have costs me 347 a month.

My yearly deductible is 1500. Now this is where it gets complex so read carefully.

I know that for some that read this, they will already know this, but I would not be surprised if many do not. After all we have been intwined in the health care system for 12 years and only now understand this.

What this means is that each doctors visit is billed to insurance, they refuse it, I pay it and they credit me for it.

OK so I go through the first 1500 in no time, in this situation.

Then the insurance starts to pay.....

Then when  I see a doctor, who is a preferred provider they pay 70% of the visit, I pay the rest.

(I should add here that the insurance company takes the doctors bill for the service and decides what THEY determine as being allowable and lower the bill to begin with), if I see a doctor who is NOT a preferred provider (my gyne/oncologist surgeon was not) then I pay 50% of their bill.

I should add here that what ever I pay out of pocket I am credited for by the insurance company.

Now with every insurance plan you have an amount that is the total amount (per year) that you will have to pay out of pocket, and for me and this plan it was 6 thousand.

So for me, the total amount I will pay this year (with exceptions I will describe below) will be the initial 1500 deductible, plus the 6000 dollar annual out of pocket expenses

Plus I will have to pay for the first 1000 in medication costs (this is only the meds that I take at home, the rest are covered under the cancer centre bill.)

OR if any of my treatments or tests are not approved by the insurance company.

This is kind of significant because PET scans are kind of new to this stage of endometrial cancer, and if it is not something they allow for a given diagnosis I will also have to pay for it and it will not be credited to my out of pocket amounts.

(the PET scan costs 3900 dollars)

So you can see where it is good to have an "event" like mine that starts early in the year and does not stretch over into the next year. (if it did, I would have to go up to the 7500 dollars again)

My surgery/hospital stay was 30 thousand, each chemo treatment is about 7 thousand and I have no idea what radiation is going to cost.

The other thing about the insurance is that they have a 2 million dollar life time limit.

I feel fortunate to be a doctor and in the situation where the 8500, possible 11,500 will not ruin us, but I can see where it could for some, not to mention... the likely 150 thousand that my treatment will likely ultimately cost to an uninsured person. There are over 50 million uninsured people in this country, many of which might not go to doctor for perimenopausal bleeding.

I hope this description is of use to some. I am doing MUCH better today, both physically and mentally.  Physically I feel pretty much back to normal with the exception of this pelvic pain that I have had since the surgery.

I contacted my surgeon who suggested it might be a hematoma and to do an ultrasound.

We did that yesterday but because of gas they could not see anything, so they did a pelvic ct scan which showed nodularity around the vaginal cuff.

Anatomically the uterus lies in between the bladder and the bowel and the cervix is the end part of the uterus and it extends down into the vagina.

When the uterus is removed the vagina has to be sewn up at the top (closed) and this would be the vaginal cuff. The nodularity around the vaginal cuff seems to also involve the bladder and the bowel, which would explain my symptoms. The radiologist was concerned about this being cancer, but we explained that I had just had a PET scan(which should rule cancer out), so the most likely cause of this nodularity is scar tissue from the surgery.

So I feel MUCH better knowing what the pain is caused by.

The bladder is the triangle shaped thing toward the left, the uterus the the one with the numbers

6 and 7 and the bowel lies behind that.

The vagina is that thin line that goes up toward the uterus

THought this might help to get your bearings.

love and peace to all

Janet Bates   jankenb@gmail.com

..and sometimes I just cry

Hello everyone

Hard to write this morning.  As positive as I might sound, some days I just get caught up in the 

prognosis. I guess I really have never been given one, if one really exists.

For an oncologist to say I have an excellent prognosis, now what does excellent mean to an oncologist, and what is it compared to?

I guess the only time in my life that I have been acutely aware of my own mortality was on a Horizon flight into North Bend.  Apart from that I really had never planned to get old, ....or die.

However here I am, with a stage of cancer with a 51 percent 3 year survival rate, and a message from the cancer clinic that it is much better than that.

Today I finally got onto the OHSU library, which is available to rural physicians. I found out that

the 51% survival rate was for Stage 3c endometrial cancer with no further treatment(only surgery).  It sounds like they have been going back and forth in the studies for quite some time trying to figure which is better, chemo, or radiation for this disease.  For awhile they have used whole abdomen radiation, and this was extremely toxic.  (in studies if you lose more patients to the therapy than to the cancer that is no good either)

When they only used  external beam radiation (not whole abdomen), they improved prognosis up to 65%  3 year survival, however those who developed recurrences developed them outside the field of the radiation.

Patients who were treated with just chemo had improved survival rates again up into the mid 60s,  however those that recurred did so in the vaginal area.

(I am receiving chemo, internal radiation and external beam radiation, cannot find data on that.)

I have found studies where recurrences were higher amungst obese women, and those over 65.

In all of this,  I struggle to find out what MY number is, what colour is my balloon?  And then....what number would make me comfortable right now?

My mother was told that there was a 5% chance that she would have a stroke from an angiogram, and she did.  ..... she said afterwards that she did not really even pay attention to that.  She would have needed the angiogram anyways though.  So even when the chances are low they still happen. I guess this works both ways though.

I guess all of this is my way of explaining why I cannot just be totally strong and confident each and every day. I guess I thought it would be an artificial blog not to include the negative bits.

Love and peace

janet bates

the thing about the hair

Hello everyone

Well I guess after the first 2 weeks post chemo, I have decided loosing my hair will be minor.

Not to mention, I AM READY.  On average it occurs on about day 14, and today is day 13.

I have been told by doctor that I WILL lose my hair, with this medication regime. There are chemo med regimes that only a percentage of people lose their hair, with Taxol, almost everyone does, and in my case, I figure that my hair grows so fast normally it would be certain that I will lose mine.

Serendipity as it may be, I just reached up (while writing this blog) to pull on a lock of hair and it came out in my hand.

SO I guess today is the day.

THE PLAN

A few weeks ago I had my hair corn braided like in the picture.

In the past few weeks I have attempted to also place small elastics up at the top of the braid, near the scalp. Sondy from Sondys  corn braided my hair. Courtney from Vickie Gs is going to help me, once it appear the hair is falling out.

We are going to try to salvage the braids and then sew them to a special cap, and then I can wear the cap under a hat and look like I have hair. She will shave?? the hair off.

We will take pictures... :)

I think it would be dishonest for me to say that I am OK with this, I have read where women refused chemo based on the hair loss. I have also read where the survival rate at 3 years with my stage of cancer was 50-60 percent before they started using chemo AND radiation.

The other really interesting thing I found out yesterday, is that the drug I am on Taxol, is the one that was so controversial, as it comes from the bark of the Pacific yew, and the tree  is destroyed in the harvesting of the bark

There was concern by environmental groups about the loss of the trees. Several years it took to finally develop other ways to obtain the agent required. Article is here   http://en.wikipedia.org/wiki/Paclitaxel

Well, could be a busy day

love and peace

janet bates

jankenb@gmail.com

temperatures

Hello everyone

Since I have been feeling SO GREAT the past few days, I have gone in and helped Ken with "rounds" at the hospital.

Since I have been "ill",  he has essentially been working his job and mine. Since we have no disability insurance, or "sick time", it seemed kind of necessary. Not that we have any concerns financially, we have kids in college and a cd on the way, and would like to retire someday........ So we decided that this would work best so as not to let this "bump in the road"  leave us off in a ditch.  (perhaps a tad over dramatic)

ANYWAYS, on the days I feel well, I feel guilty not helping out.

Not sure if it has anything to do with being at the hospital but I developed a fever last night, with chills. 

When you start chemo you are given a list of things to watch for and to "report", one of them is an elevated temperature.

My temperature went to 99.8 and I do feel better today, however people reading this blog seem to appreciate the medical info I explain, so thought I would go into greater detail about this concept here.

The cancer centre instructs patients to seek medical attention if their temperature is greater than 100.3 (or 38 degrees in the rest of the world)

What is done then is a complete blood count.  If the absolute neutrophil count (ANC) is found to be less than 500, then irregardless of whether there are any symptoms of an infection

the patient is started on IV antibiotics, high dose, broad spectrum.

(Neutrophils are just one form of white blood cells, others are lymphocytes(which are the cells deficient in AIDS patients), monocytes, eosinophils, however for the chemo concerns, it is mainly the neutrophils that are affected.) On a blood count you get total white blood count, and then a break down of the various types, usually the highest percentage is always the neutrophil count.

The interesting thing about infections is that often, the thing that brings our attention to an infection, such as pain with a bladder infection, or cough with a pneumonia,  is the bodies response, as opposed to the organism (bug) itself.

So if the bodies immune system is weakened and unable to fight an infection then often symptoms are minimal, until too late.  Years of working with the extreme elderly, it is well known that they rarely develop fevers, and when they do, even if it is minor, it is significant.

So as one might gather from this, it is hard to detect if an elderly person has developed an infection with chemo, so in this group they watch the neutrophil count closer.

As I have mentioned in previous blogs, the drug given to me the day after chemo "neulasta" was given to boost my bone marrow.  The drug seems to have a lot of side effects, and I was wondering if I REALLY need to take it

What I found today is that the chemo regime I am on is associated with a greater than 20 percent risk of febrile neutropenia (the scenario I have described above).

The guidelines suggest that if you are giving a full dose chemo with the goal of potentially curing the cancer, then to give the Neulasta rather than lower the dose of the chemo.

While this may seem confusing, I guess to restate it...

The dose of chemo I am on carries with it a high risk of serious infection, however rather than lower the dose, which would lower the cure rate, the neulasta is given to decrease the time frame that the neutrophil count is low.

Perhaps this is all a long way of saying that I will not be helping Ken out whilst on Chemo.

I guess it is a good thing that we both went to a somewhat part time position last summer.

I will make him yummie dinners to make up for it.

Love and peace 

Janet Bates

jankenb@gmail.com 

Life is good

Man is life good.

I am sitting here with a cup of decaf capuccino, skim milk, and prune sauce on the top,  and a large bowl of all bran.

Sitting by the fire watching the squirrels and the chipmunks get fatter.....and fatter.(hope they do not try to go INTO any of those houses)

Had the most incredible day yesterday.  Everything is going better, the pains, the heartburn and yes even the big C.

I have to say I feel happier now than I have been in many months. I was trying to figure this out yesterday and wondering if it perhaps could be due to a drug, but then the only one I took yesterday was Sennakot .......???

Someone asked me yesterday morning how I felt about all of this, scared...... angry at having to go through all of this...?

I thought about it and perhaps over the past 6 weeks some of those thoughts have crossed my mind. In fact a few days I thought to myself..... "and here I FINALLY got a MAC and and IPHONE and now I have cancer!"

However yesterday, the only feeling I could muster up was.... lucky.  I feel very lucky.

I feel fortunate my sister had the excessive bleeding and that her D and C showed atypical cells, which likely prompted me to once again seek help.

I feel fortunate that Dr Gruchacz said "I think we should do a biopsy here and now" ( I was shocked, but it did not give me anytime to think about it.....)

I feel fortunate to have been referred to Dr Dotters.

I feel fortunate that she opted to do a complete pelvic lymph node dissection, because my lymph nodes looked otherwise normal (this is the only way they found the two positive nodes)

I feel fortunate that the PET scan was normal (showing no signs of significant tumours anywhere else)

and yes I feel extremely fortunate to be able to go through chemo and radiation, because I feel it is the only way to put an end to this cancer.

Though I am aware that there is still a chance this will come back somewhere else, I will feel that I have done everything possible to make certain those chances are extremely small.

I spoke with the doctor from the north bend clinic yesterday and the first thing he brought up was how we were going to follow this, he said that the ca 125 ( a blood test cancer marker used to follow success of treatment for pelvic cancers, usually ovarian)

would not be of much use with me, as mine had been low, so we will likely followup (watching for recurrences after chemo and radiation are over) with pelvic exams  and ct scans.

I was also thinking yesterday about how fortunate I am to live in a part of the world where a woman can EXPECT to live to 52 years of age and where a seemingly minor symptom like vaginal bleeding might make its way to a doctors office, let alone surgery, chemo and then radiation.

I am extremely fortunate to have Ken who makes my life so worth fighting for every minute of.

(he never reads my blogs.....)

and I also am fortunate to have a supportive family and a group of friends who have shown me the very very best this country USA has going for it.

Love and peace

Janet Bates

jankenb@gmail.com 

one pill makes you larger.......

"one pill makes you larger

and one pill makes you small

and the ones that mother gives you

don't do anything at all"

You know I have been wondering lately if perhaps Gracy Slick is talking about constipation here.

Wondering which of the the pills she is on is the one that is causing her constipation.

All and all I have been thinking perhaps constipation is a rather overlooked malady. I currently have enough thoughts on constipation I think I would start a weekly  "CSI like" show on it.....I won't expand on that concept, trying to keep this blog clean.

Perhaps even a new religion.........

The very lovely cloth bag in the photo is one that Ken and I went all the way over to Coos Bay, to "Ross dress for less" to purchase.  The reason for this lovely floral bag.......is to keep my pills in.

There could be a few operatives in play here:

1) we have WAYYY too much time on our hands

2)we have wayyy too many pills on our hands

3)we are taking this all WAYYY too seriously.

what can I say.....it was Ken's idea.

Serially now, they are stacking up.

As a physician I always try hard not to get into the scenario where you give pill D to treat the side effects of pill C, which you were giving to  treat the combination side effects of pill A and B, which have done nothing to treat the problem X.

The problem with Chemo is that you are giving drugs that by their  very nature  cause side effects, and though "hopefully" it is "taking care of a little problem", it is killing cells.

So prior to taking the carboplatin and paclitaxol, you have to take 3 fairly high doses of steriods to prevent a reaction to paclitaxol, you also receive benadryl IV to prevent a rash and 

cimetadine to prevent a stomach upset and another long acting drug for nausea.

Then the following day a dose of Neulasta, which stimulates the bone marrow (and causes bone pain and heartburn and consipation)

THEN THE RACE BEGINS:

I have compazine for the nausea, too sedating

I have zofran for the nausea, it would have helped if I had known that if you take this with in 2 days of the  the other nausea med it also causes headaches (it also causes constipation)

Ativan, which is alittle like valium, which really works well for nausea.

Percoset which treats the bone pain, but REALLY causes constipation

tylenal for the bone pain, but can also elevate the liver enzymes, which are already up from the chemo meds, so I have been careful with tylenal.

Somehow I am SURE that my hair falling out will seem pretty minor after all of this!

So nurse Kenny  and I have little pieces of paper all over the house with attempts to keep track of when and what dose of which I have taken (same filing system as my song writing).

HELP!!!!

Ken and I have decided that this really has not worked well, and perhaps we need more help. (We have 5 more chemo treatments to survive)

At the advise of one of the nurses at the local hospital, who also works at the north bend cancer center, I called on the nurse specialists there yesterday. (she is an old friend)

I went over all that was happening, including the very high white blood count and the terrible headaches.

She explained that the very high white blood count was as a result of the Neulasta and that I had had a very good response in the bone marrow boosting.

However a very good response takes its toll.  The large bones all over the body, are where all the blood cells are formed and when the bone marrow goes into overdrive it causes pain EVEN IN THE SKULL bones.

She also suggested another medication that might help the heartburn more.

Perhaps this is a long way of explaining that we have decided to do our chemo in North Bend.

They have 2 nurse specialists who are obsessed with this stuff.

I have decided that chemo is far more than just choosing the drugs and infusing them, it would seem to me that that is where the work really starts. From what I have read, there really is no need to suffer any more with chemo, with all the meds that are out there.  Its just meds need close supervision and individualization  and from what I have found out this week, I think I will get more of that in north bend.

ALSO would be cool to sleep in my own bed after getting chemo.

The kind of person I am, EVERYTHING is on a  need to know basis, I need to know exactly what is going on, other wise it frightens  me, and I think most people are like me.

So I have appt to see north bend doc on April 9th, 

I will do my radiation in Eugene still.

I am trying to make these blogs as informative as possible, because the medical system  has become so complex and expensive for people to access, I feel that being informed is the most valuable tool you can give anyone.  I have heard that an article was written in local paper with link to this blog. I was unaware of this, however support it whole heartedly. 

If there is something you like, be sure and drop me a note.... jankenb@gmail.com 

I continue to be overwhealmed by all the love, and the the very lovely people who surround me.

Love and peace

Janet Bates

Hello all

Not much to write today, a difficult night with heartburn and headaches, not really sure where that is coming from.

I am having trouble finding anything to drink except water, and that gets pretty dull.

I am going to my very very first Yoga class this morning, I have spent years thinking I should, being an aging runner. My recent MO is that I should stop saying should, and just do things.

Not that I support big business logos, but I have to say that Nike got it right in their "just do it" line.

So today I am going to just do yoga.

Went for blood work this morning and for some reason my  white blood count is extremely high, and I need to find out what that means.

When I find out, I will tell you.

For now I will go and DO YOGA

love and peace

janet

janken @ gmail.com

The house that guy built

Hello everyone

This is the house that Guy built and on it is the realtor trying to interest the birds in it. He already had a tiffle with a blue Jay.

Perhaps it was more of a scuffle.

Anyways the house is still for sale and for a large family. Lots of looky lews .....

Moving right along to day 7 of chemo. Everything I scratch seems to bleed and watching csi on tv last night my nose started to bleed. This is most likely because my platelet count is low.

As explained in previous blogs Chemo drugs attempt to kill all rapidly dividing cells, which cancer cells are.

Also your blood cells are rapidly dividing, so are affected by the chemo.  Your red blood cells carry hemoglobin which carry oxygen to the body, your white blood cells are a major part of your bodys defense system, they help prevent and fight infection, and your platelets help stop bleeding and repair damage to blood vessels.

My platelets have dropped a bit more than either of the other cells. ( I recieved an injection to boost my white blood cells). So my liver enzymes have gone up and my platelets have gone down, and those are to be expected and will just be watched. Most likely they will go back to completely normal prior to my next chemo on April 15th.

I am feeling pretty good today and will likely  work this weekend, and help Ken out.

My whole treatment plan has been moved up substantially yesterday.   My chemo is the 15th of April and on the 17th of April I also start radiation.

The first type of radiation is milder and is called Brachytherapy.  With Brachytherapy a cylinder is placed into the vagina and then a high dose of radioactive material is pumped into the cylinder for a short period of time   (10 mins)

The advantages of this is that it gets radiation right to where the cancer is. In my case the pelvic lymph nodes had the cancer and there is no way of telling if any cancer survived after the surgery.  Any type of radiation cannot be done too soon after surgery or it will interfere with healing.  This type of radiation does not cause damage to the surrounding tissues as much as the external radiation does.

I have also read where chemo "sets up the cancer cells" thus making them more susceptable to radiation.

So I am quite excited to be starting this radiation so soon.

I will also have to have external beam radiation after the chemo in May

I will be needing a ride to Eugene on the 24th of April and the 1st of May.

Ken is juggling schedule to allow him to do as many shifts as possible, as we hope to be able to go on a big holiday when this is all over.

Love and peace to all

Janet Bates      write to me at jankenb@gmail.com