Large mushrooms

Hi Everyone

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

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

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

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

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

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

Well back to looking for a recipe for stuff matsutakes 

Love

Janet

matsutaki

Hi everyone

This week has all been about mushrooms. We have recently identified Boletes, and eaten them and yesterday I went out with Brenda and have a large bucket of Matsutakes  ( also known as pine mushrooms). We have not eaten them yet, but hope to once we get to Eugene today.

It is SOOO much fun going mushrooming these days because I now feel comfortable identifying 6 different types of mushrooms. This has been a great mushroom year because the rains have come but have left us with some clear days in between, AND it has not frozen yet. (at least this is my explanation)

Saturday was Ken's 55th birthday, and what a great day it was. We went out onto the trails, in fact to a particular trail.  It is called "8 ball", and the last time I ran this trail was the weekend before I went to the doctor, who did the biopsy that found my cancer. There are  a series of trails that Ken and I have done for many years, Ken rides his mountain bike and I run. The last time we did this trail, last Feb, I almost fainted. (that had never happened to me, and was partly the reason I started to get concerned about the chronic bleeding I had been having). So it was a very special and symbolic "run" for us. Ken said it made his birthday to be out once again on the trails after almost 9 months.

It was also the first time I have shaved my armpits in 7 months, but that is what Ken calls TMI (too much info), but once hair starts to grow it  GROWS.  I am not fertilizing it at all, it just seems every day it is longer, and thicker, and what is coming in now is basically black.  ?? Cannot say I was not warned that it would be weird. No sign of curl though, the hair that started growing 3 weeks ago is basically all dark black and straight as a board(my hair has always been pretty straight)

The blood count is still low (the white blood cells), but I talked to a nurse at the cancer clinic the other day who said that it can take 3-6 months for it to come back and that some people, its the hemoglobin that does not come up, and others it is the platelets, and still others it is the white blood cells.

At the surgeon's visit a few weeks ago, she did a PAP which is just a smear they do looking for abnormal cells in the vagina, she also looks at the tissues for abnormal appearing growths. The Pap came back normal. I would be extremely surprised if it were to come back there, the vagina was treated with brachy radiation, plus external beam radiation as well as the chemo.  I guess it was the most treated part of me, so cannot imagine anything ever growing there.....

The ca 125 is still 6, and from the recent reading I have done, in women who have had all of their reproductive organs removed it is usually under 10. I have also recently found out that a change in 15% of the ca 125 is considered significant. I also read one study that showed that a change in the ca125 can occur 6 months before a recurrence becomes symptomatic,  making it an extremely useful test.  The earlier you can catch a recurrence the better your chances of treating it,

The problem is that the ca 125 not useful in everyone. As many as 15% of people with ovarian or endometrial cancer will not have an elevated ca 125.  For now I am getting a lot of comfort knowing that mine is under 10, and has been there for several months.

So no cancer cell has risen from the ruins of the battlefield that my body has been over the past several months.

Ken and I had thought a few years ago that we would retire when he turned 55, but that is NOT going to happen.  Perhaps we will try for when I turn 55. We are having fun though with this working one week on and one week off. We are spending much of our "off" time in Eugene. It is kind of nice to have that separation from work, perhaps it is a good time to "practice" being retired.

I do have to say that I feel better every week, it is odd how you really do not know how badly you were feeling when you have been like that for awhile.  I hazard to say that I think I am feeling better than I was before my surgery. I guess I just did not know that something was wrong.  I ran from my house to the hospital the other day, which is 5 miles, and it was no problem at all.  Maybe I WILL do the Eugene marathon next year.

Peace and Love

Janet Bates

jankenb  @ gmail.com

penguin eggs

Hi Everyone

I am quite excited, just got a request from  a folk music magazine in Canada called "Penguin Eggs" for a photo to accompany an article they are doing about me, my blog, and my new CD.

I think I will send them a picture Ken took at the run I talked about in the last blog.  It was last Sunday and Ken and I ran the 3 miles. ( Actually we got lost and Ken was sure we must have ran about 10 miles :) ) It may come to a surprise to everyone who knows us, but Ken is not a runner. I am sure the only reason he is not is because he ruined his knees playing hockey.  He clearly looks like a runner.  He told everyone he was so proud of me for doing 3 miles, but that he spent the  whole time wishing I would quit (so he could quit too).

There was a great turnout, so I hope they made a lot of money for Brandy and her family.

BTW, about my cd..... it charted at #12 on the international folk dj radio charts for October. 

I saw my surgeon last week in Eugene, she said everything looked OK. I guess I am a bit intimidated by her, and perhaps in an effort to not seem too paranoid did not tell her about a new groin pain I have for the past few weeks.  It is hard to know how to balance my fears with reason. Being left in a position with what I feel to be a 15 percent risk of recurrence, it is hard to ignore new symptoms. On the flip side, I have had a big operation, and two forms of radiation to the area, so many reasons to have new pains.  The best prognosis for recurrences is if they are caught early, but where do you draw the line on testing? If you did a ct scan every week, you would likely catch a recurrence early, but at what cost? The amount of radiation and the amount of unnecessary surgery would be phenomenal. The number of little things that show up on CT scans that turn out to be nothing, is high. This then leads to unnecessary surgery and increased risk of further complications.

This is essentially where medicine is these days with all this advanced testing that is available.

The best case scenario for a recurrence is that it will present with very clear symptoms, that clearly point towards a specific area.

With this in mind, I went today to see Dr Gruchacz, who is the Coos Bay doctor who actually made the diagnosis of my cancer, and is clearly the one who I am most comfortable with. She has this small old fashioned office that I just find more comfort in.  She did not feel anything there, but seemed aware that that is only so comforting. We decided that at this point we will wait and see if this pain settles on its own.

My blood count is still low (ANC is 1100 this week, under 500 is considered severe neutropenia, between 500 and 1000 is considered moderate and between 1000 and 1500 is considered mild) I am thinking it is 11 weeks since the last chemo, so it seems chances are it might not go back to normal. I am thinking that that is likely OK except for perhaps if I needed surgery etc., but I have not really found any info on long term neutropenia. I believe the lower limit of normal for ANC (absolute neutrophil count) is  2500.

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

Have a great week

love 

Janet Bates 

jankenb @ gmail.com

boletes

Hi Everyone

We can now add Bolete mushrooms to our repertoire.  We picked this one  a few days ago and after much studying and testing we ate it, and lived. We also found that our tummies tolerated the bolete better than they tolerate chanterelles. So need less to say, all that I can find out in the woods today are chanterelles.

Hunting for mushrooms is so much fun, and I read somewhere that people who eat mushrooms at least 5 times a week have lower risk of cancers, and walking at least 5 days a week decreases the risk of recurrences in many cancers, so its a win win situation. We have been doing this for a few years ago, in previous years we just found it fun.

I have been running a few times now, but the pain in my legs lasts for 3 days after, hard to figure, but will keep going at it.

There is a 28 year old woman in Bandon who has just been diagnosed with advanced Breast cancer. She apparently found a mass in her breast after a recent pregnancy and in the subsequent investigation was found to have what appeared to be mets in several other areas.  She is currently awaiting enrollment in a clinical trial, and has started chemo in the meantime.

I think that this event sounds like great fun and for a great cause. So I am going to try to run the 3 miles this Sunday. Hope to see you there, Love and peace Janet Bates