half of a vacation

Hi Everyone

Betcha thought we got eaten by a bear. Actually we did see a bear, but it had been hit by car and was dead. Big black bear.

I am feeling better every day, at least my energy. The shortness of breath seems to be gradually going away.

In Kamloops we went mountain biking with Dylan on a fairly easy trail. I am a bit of a fraidy cat on a mountain bike trail.

We found mushrooms, Boletes and Shaggymanes. Lots of them, in Williams Lake, in Kamloops and yesterday morning we found a few Shaggymanes in Westbridge. I have never eaten Shaggymanes, but yesterday fried up a couple and ate em and they were delicious.

We are in Grand Forks now and it is cold. There is snow on the higher elevations, and it is close to freezing, not quite.

I am now 5 weeks post chemo, and figure perhaps it might be time I might start thinking about taking off the pounds I put on with the last few chemo treatments. I guess eating just made me feel so good, so I did.....lots.

Problem is that I seem to hurt everywhere. This is a new thing for me in the past month, my muscles everywhere seem to just ache. I have asked about this on a forum, and a few other girls said that they had painful muscles for about a year after chemo. I have no idea why this would be, why it would just occur now?

Ken and I both find it hard to know what to talk about as we travel around visiting with family and friends, as the cancer has pretty much been our whole lives for the past 8 months and it is not really what anyone else wants to discuss. It seems to make people uncomfortable.

I feel so fortunate that Ken has been able to talk to me about whatever I wanted to talk about, whenever. It is hard, even now, not to occasionally think about my fears. After all it is cancer.

I believe that there is this subconcious thought that if you do not think about it, it will not occur. Perhaps there is some truth to this. I have read a few articles on the power of optimism, and how the optimistic tend to have favourable outcomes.

I find though that being able to talk about it helps me to set my fears aside. I guess the hardest thing for me is to read about recurrences, in people who had believed they had been cured.

Oh well what can you do?

Our holiday is half over now, we will be in Grand forks for 4-5 more days, then on to Kelowna.

My cd has done very well on the folk music charts, it ranked 39 on the international folk music charts for the month of September, and I only sent it out half way through the month. It is doing far better than any of the previous cds, so it is quite exciting.

Peace and love

jankenb @ gmail.com

hinterland

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

Janet Bates
jankenb @ gmail.com

whistler

Hi Everyone

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

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

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

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

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

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

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

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

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

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

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

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

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

Love and peace

Janet Bates

jankenb @ gmail.com

Canada here we come...look out

Hi everyone

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

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

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

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

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

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

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

We also have 3 rain coats and 2 downfilled coat.

peace and love

Janet Bates

jankenb @ gmail.com

so close but so far

Hello everyone

Well today is decision day. I went to see Dr Cook today, and my blood count (white blood count)(infection fighting cells), were even lower. He has more or less left it up to me whether or not to have a neupogen shot at this time. Ken feels uncomfortable leaving the area where my doctor is, with a blood count that low.  The Neupogen would likely boost the white blood count for a week which would get me over this last period, however not without side effects. 

It certainly seems to me that the concept of risks VS benefits is more relevant in oncology than other areas of medicine.  Each drug has potentially serious side effects, but the alternative is "potentially" worse. 

In fact every aspect of cancer care is a balance, how far can you push the envelope of cancer treatments without creating a serious side effect.  The medications used to boost the bone marrow to produce more cells can cause leukemia. It is not common, but it is certainly a consideration when giving neupogen, or neulasta.  I do not think that the risk of infection is any greater traveling vs staying home, it just would be easier to get treated where your oncologist is.

Dr Cook also reviewed my ct scan results and said that ctscans were limited in their ability to detect these cancer recurrences because they have a tendency to start just as thickened tissue which would be hard to see on a ct scan  (captain bringdown  :) )

I got the ct scan results ( I had only gone over the ct with the radiologist), and there are "thickenings" in the pleura of both lungs, which he felt were scarring. Not sure why I would have scarring of the pleura (pleura is the outer lining of the cavity where the lungs sit, the pleural cavity is the space between the pleura and the lung).

So after my visit with the oncologist yesterday I have asked the radiologist to look at the ct scan I had in Eugene in March and compare (just to make sure that the "thickening" is the same on both).  I will find that out early next week. I guess my concern has been that I have had left chest pain intermittantly for about 4 months now.

I did not finish this blog yesterday, so am now writing on Thursday. Ken has been working away at getting the van ready for this trip, and being the true boy scout he is, has packed rain coats for cycling, rain coats for wearing around town, down filled coats for "in case it gets cold", and mitts and scarves.  I told him he had to pick between coats for cycling in the rain and walking in the rain, there was not room for both.

 One thing we found in cleaning out our camper van is that we created a whole cupboard of free space by illiminating the the things I will not need this trip. 

Blow dryer, shampoo, conditioner, hair spray, bobbie pins, cloth hair elastics, Kotex pads, comb, brushes..........maybe he CAN bring 4 raincoats.

I have not been all that helpful because for some reason all the muscles in my legs and back are very achey. More so than they have been any other time in the treatment. Dr Cook thought it might be because my hematocrit is so low. I am more short of breath than I have been in awhile, so just getting tired doing minimal things. This seems to have happened every time my blood counts have been low, so I assume it is related. It just seems like the end of this is SO CLOSE, but in some ways so far away. My expectations were that I would be feeling perfectly fine now, when in fact I feel worse than I did last week.

My parents are celebrating their 60th wedding anniversary while we are up there, so a bit of a family reunion. I am certainly hoping my blood counts are up by then.

Peace and love

Janet Bates

jankenb @ gmail.com

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

vaccines

Hello everyone

What a week! A cd release party on Friday, concert on Saturday, I have put together 550 cds to go to radio stations, and we have been working.

Ken and I have been working pretty much straight through since September 4th, I guess making up for the time we will be gone. On Friday we are leaving for a month holiday in Canada. Ken sent me home from hospital yesterday and said I could not come back.. :)  My white blood count is down to 1.6 and my ANC is 980, which is low and leaves me more prone to infection. 

I guess I had hoped that by the time the flu season hit I would be over all of this, but we are starting to see the flu at the hospital now.  

The problem with the flu vaccine in immunocompromised people, (such as those on chemo, with leukemia, AIDS, and the elderly) is that these people are not able to mount a response to the vaccine. Normally when you receive a vaccine, your body mounts a response and forms antibodies to the organism (in this case the influenza virus), which is how you  are protected. If you have had the vaccine and  then come in contact with the virus, the antibodies you have formed quickly takes care of the virus. If you are immunocompromised you are unable to form the antibodies. So this is the reason that the people who care for the immunocompromised need to be immunized, so as to decrease the risks that they will come into contact with the virus at all.

In my case since I am at the end of all of this, I will just wait to get the flu vaccine until my blood count comes up, so as not to waste it now. Perhaps while I am up in Canada.

The flu vaccine is a "killed" vaccine which means it contains what is needed for the body to form antibodies against it, but it is unable to infect you. Some vaccines are "live" vaccines, which should not be given to anyone on chemo. The only significant "live" vaccine is the mumps measles and rubella vaccine. This one should not be given to people on chemo because of the risk of getting the infection.

My hemoglobin and platelets are slowly going up, but at least they are going in the right direction.  We are a little nervous leaving town before the blood count comes up, but I am sure it will be better before Friday.  If need be, it will be pretty straightforward to get my blood work done up in Canada.

By the way, there is very little being said about the Canadian health care system that is true. I was a physician for 7 years there, I was a nurse for 10 years there and a patient there for 40 years. I have been a physician here for 13 years and a patient.  I have insurance here, and have spent 10,000 dollars out of pocket this year. If I did not have insurance here, chances are I would not even have had the surgery, let alone the chemo and the radiation. Right now my insurance statements say I have cost them 80,000 dollars this year.

In Canada, no matter who I was I would have had the surgery, the chemo and the radiation and only would have needed to pay for the medications that were prescription medications. The cost to the system would have only been a fraction of 90,000 dollars, as the system is not a "for profit" system. So the shareholders in the insurance companies are not benefitting from my medical problem. The CEOs of insurance and pharmaceutical companies are not "benefitting" from my problem.  The system is only there for health "care".

The part that I do not understand about what is going on here, is why those who are so opposed to a "socialized " approach to health care, have no concerns that the school system here is very socialized. Everyone here can go to school.

My health care here costs me 347 dollars a month. This does not include any dental.  I have to pay the first 7500 out of pocket in medical costs, and the first 1000 in medication costs. I also have to pay for tests my insurance does not cover, for instance an MRI  I had to pay for. I am a physician and my husband is a physician, so we can afford this.  But who else can?

I would be willing to bet that anyone who is defending the current health care system here in the US has insurance, and/or has never had a major health care problem that they have had to pay for themselves.

I also wanted to explain that medicare is a form of socialized medicine, as is the VA.

I am hoping that some good can come to the system here, and I wish they would stop using the Canadian system as a punching bag.

peace and love

Janet Bates

jankenb @ gmail.com

NORMAL ct scan

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

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

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

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

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

peripheral neuropathy

Hi Everyone

Fallout day otherwise known as day 14. Have been back at work this week, the blood counts have improved a little this week, feeling pretty good, perhaps just tired.

I have posted some blogs mentioning the numbness in my feet and hands and I do not feel I have explained the problem medically yet.

The body has two parts to the nervous system, the central nervous system and the peripheral nervous system. The central nervous system is essentially the brain, and the peripheral system is essentially everything else. The peripheral system includes the sensory and motor nerves to the muscles. Sensory is touch and motor is involved with movement of muscles. The peripheral nervous system also includes the autonomic nervous system, which controls the  internal organs and glands.

Certain chemotherepeutic agents can cause damage to the peripheral nerves, which is called peripheral neuropathy.  The main ones that do this are Vincristine, Cisplatin, Paclitaxol, Etoposide and Tenoposide.  Those at greatest risk of developing peripheral neuropathy are diabetics, alcoholics, malnourished, and those who have had chemo before.

The symptoms are numbness, tingling, or burning of hands and or feet, numbness around mouth, constipation, loss of position sense (not knowing where a certain part of your body is with your eyes closed), cramping of hands or feet.  The constipation would be if the autonomic part of the peripheral system is affected.

The symptoms usually start after a chemo treatment and decrease prior to the next one.  Some people do not develop them until after the final treatment (like me).  The symptoms tend to peak in intensity at 3-5 months after the final treatment, and from there they diminish intensity, and often go away, but not always.

When the symptoms are severe with early treatments, the dosages of the chemo agents are often decreased for subsequent treatments.

I did a search of the literature and there are many agents being used in an attempt to prevent this, but to date, none have been shown to be of any benefit. It seems that most oncologists suggest vitamen B6 at a dose of 100 mg a day, and L Glutamine (which is an amino acid or a building block of proteins) of as much as 10 grams a day.  Personally, I have a call in to my doctor to see what he suggests.  I DO try to be a good patient. I am fairly certain that mine will just go away as I developed it so late, but I had wanted this blog to be informative, so have included more info.

There are a lot of potential treatments for this problem should it become chronic, and my suggestion here, is to seek help early rather than late, as these types of problems are often much easier to treat before someone has had them for months and months.

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

P and L

Janet Bates

jankenb @ gmail.com

dear diaries

Hello everyone

Day 12, and getting better all the time.  The numbness of my toes has changed over to just my right foot and now most of the bottom of my foot is numb, but no numbness of my left foot, or my hands(keeping my fingers crossed which only makes two of them numb :) ) Although I have not spoken to my doc about this a few friends who had it were told to take  L Glutamine and B6 for it, so I have a B complex vitamen and am looking for L Glutamine?

My bloodwork this time, everything was low.  Usually the WBC is high or above normal at this point, but it is now low normal. The hemoglobin which is the part that delivers oxygen to the tissue, is 9.9 (12 being normal), which is probably why I look so pale. 

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

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

I am going for a CT scan of the chest abdomen and pelvis on Wednesday. This is an end of therapy "make sure that there are no metastasis" scan. It will be with oral and IV contrast. What this means is that I start drinking a barium sulfate suspension the night before (otherwise known as berry smoothie readi cat 2 ) which will outline the entire gastro intestinal tract. A ct scan does not show much without contrast in the GI tract. The IV contrast outlines the vessels and the vascular organs.  These are done at (?I think) 3 month intervals for the first while and then 6 month.

It is not certain if doing these is of any value, because with endometrial cancer, most recurrences are symptomatic. The goal is always to pick up recurrences before they are symptomatic because usually you stand  a better chance of treating them.

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

I wanted to point out here to anyone going through this OR anyone who knows someone who is going through this, to keep a diary. I know this seems nuts, but right now and many times I wished I had.  I have used this blog as a bit of a diary, but not to the same extent someone who was just writing to themselves would do. The reason for this is to know more about what to expect and when to expect it.  I am always going back to check how I was feeling on Day 6, or what day did the bowels start to work and what day did the blood work change etc etc. On chemo you are FOREVER saying to yourself "I wonder if THIS is normal" even sometimes when you have had the same thing before. I wonder if it normally lasts this long......etc etc.

You can always burn it at the end, or put it away somewhere in case you ever want to help someone else with the question "I wonder if this is normal"

Several people who read this have suggested I make this blog into a book, but I wonder sometimes if I could go back and read it. It is a whole journey I am not anxious to make again soon, even in literature.

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

Love and peace

Janet Bates

jankenb @ gmail.com

a day without plans, goals, or commitments

Hello everyone

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

I am on day 9 and though I just want it to be totally over, I do have another 2 weeks of chemo effects, well at least the acute effects.  I am  going through the sores in mouth, heart burn phase today.  This time though a new symptom has emerged that I had hoped I would not get.

My toes and fingers have started to go numb.  It has been subtle and just over the past few days. First just the toes on the right foot, then the tips of the fingers on the right, and then the left foot. I have been particularly concerned about this with my guitar playing.

When I got it I marched down the road to ask Jaime, my neighbour who has been through  a similar treatments with one of the same drugs, of her experiences with this numbness. She said that hers had started sooner in treatment and had progressed to point that for awhile she could not play her violin. She said that it did eventually go away.  I then went to the medical literature and looked up "peripheral neuropathy", which is what it is a form of.  I know it occurs with other chemo drugs, but "Taxol" is the one I am on and most breast cancer patients also take Taxol.

What I found was that they have been studying this and that it occurs in as many as 60 % of people on Taxol, and it often goes away, but in 27 % of those who experience it, then go on to develop "neuropathic pain", which is a chronic pain disorder, which involved fingers and toes.

I mention this not because of fears of my developing this, but more to point out an ever broadening area of medicine, and that is the long term care of cancer survivors.  The study I referred to points out that with the greater successes of cancer treatments people are living much longer and the chronic complications of chemo and radiation are being looked at with the hopes of preventing them, catching them earlier and finding the best ways to treat them. 

There are many aspects to being a physician caring for patients who have received chemo and radiation in the past, that need to be addressed. Just as an example, anyone who has had pelvic radiation to treat the gynecological cancers, anal cancer, or prostate cancer, should actually have a colonoscopy every 5 years, instead of every 10 years.

My cds arrived a few days ago and I wanted to take this opportunity to invite  everyone to a party/cd release/chemo release party, open house..... next Friday. September 11th from 5-9 pm come by for just a while or for the whole evening.  I am celebrating the end of all of this, and would like to share the evening with the people who have stuck with me through thick and thin in reading this blog.

 I will be serving some of my best party recipes such as Canadian Quesedillas and chantrelle pizzas.  If you have a special dish you want to bring feel free, but do not feel obliged.  My address is 89569 Sunny Loop lane which is out Prosper road. Email me for directions jankenb @ gmail.com   (leave out the spaces)

We are going to play some music, Mark our drummer is coming down from Eugene, Jaime, down the road from us will be playing violin and of course Ken on Bouzouki.

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

peace and love

Janet Bates

jankenb @ gmail.com