I guess I am a runner

Hi Everyone

Well went back to work last week on Saturday and the hospital is very busy, so long days. My blood count had come up on the weekend, and was high enough to get the flu shot. They say your ANC needs to be 1000, I wanted to make sure mine was higher than that, to make sure it worked on me. So it was up to 2000. I had the H1N1 on Monday, but will let my immune system work on that for a week or so, and then get the seasonal flu vaccine. Hospital workers have gotten the vaccine earlier than others, I guess because we are working with sick people, and possibly passing things on to people whose immunity is down. I was thinking about it and also I guess if there were a major epidemic it would be pretty bad if all the hospital workers were off sick.

I went for a 2 mile run in the pouring rain today, so that (I guess) means I am a runner. First run in a very long time, so it felt great. I did change into dry clothes immediately .

Taking on a full hospital of patients is kind of hard in that I have basically been off for almost 8 months, (except for working a few days here and there) so Ken is working with me.

In fact we do pretty much everything together these days. It really works well, we both enjoy work more when we are both there anyways.

I have a followup with my surgeon next week, and am going through in my mind what I will tell her.  My gastrointestinal tract is clearly changed. I have a lot of abdominal pain that I did not have in the past, but it seems to be related to gas, I figure it is just par for the course having had radiation to the area. If I eat vegetables I tend to get diarrhea, not that that is going to stop me from eating vegetables. I think if I were not a vegetarian, it would not be as big of an issue.  Of course with the diarrhea there is more urgency .... getting to the bathroom.  I think that it will just take some time to sort out and learn how to "deal with" this new body. The way I am looking at it is that we all have different gastrointestinal issues, that we learn to live with. It took years for me to realize that I just could not eat spicy foods, and which ones in particular to avoid. I just have to "experiment" with this new GI tract.  I think it is just not quite as flexible as the old one.   

I guess personally now that I have "some" hair, I tend to forget that there is anything different about me at all. In the past 2 days, 2 different people have said to Ken " How is Janet?" and I was standing right next to him and they did not recognize me. I have decided that I am "in cognito" these days. I guess going from long blond hair to spiky white(clear) hair with a VERY dark base is a bit of stretch.  I have had several people tell me how much they like my "unique" hairdo. I have proceeded to tell them just how "expensive" it is to get this kind of "cut".

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

love

Janet

jankenb @ gmail.com

picking up where I left off

Hi everyone

 We got home a few days ago, and it is great to be back.  I feel like I am picking up where I left off last January.  We had just gotten Josh off to university, we had just begun our new life as empty nesters with all the freedom that entails, and whammo, in one phone call on the 15th of February it all came crashing down.  Ken and I had spent the previous fall trying to bring ourself closer to self sustainability. We had picked many pounds of mushrooms, and cooked and frozen them. We had bags and bags of blackberries for the winter. We had had a fairly successful summer garden and had plans to build on what we had learned about gardening. In the back of my mind I had plans for us to go in the next few years and start a farm.  Somehow all of that was gone with the cancer, all my dreams for the future.

Well somehow getting back to Bandon and feeling so well,  I feel that I have just picked up where I left off.(with a lot less hair)..... and a lot more insight into life.. and its alternatives.

  I have changed so much in the past 8 months, and I think it has all been good. A friend came over last night for dinner who had been gone for a year and 4 months. She had cycled across the country and back and she said that she could not remember when she felt happier, and I got to thinking that I would have to agree....me too.

I had bloodwork done on Monday and for some odd reason my neutrophil count is still low.  It is lower then it was when I had it checked up in Canada.  I guess it just takes time for new bone marrow to kick in and start making cells again.

The good part is that my CA125 was 6, which is incredibly good. This test was important to me, because this would have been the first time that I have not had any treatment. So the chemo was stopped 8 weeks ago, and no little "colony" of cancer cells has started up again.  We will be watching this closely for the next 2 years, but each time it is a huge sigh of relief when it comes back this low.

With all these muscle aches I have decided that it must have something to do with muscle loss.  Though I never really lost any weight during chemotherapy, I am thinking I likely lost muscle mass, with the toxicity of the drugs etc.  I am gaining weight rather rapidly now, likely for the same reason.

The bodies metabolic rate is largely determined by your muscle mass.  You burn calories every minute of the day, even when you are sleeping. It takes twice as long to build muscles as it takes to lose them. With the elderly since their muscle mass is so minimal, for every day spent in bed, it takes two active days to get back to the same muscle mass.

So I would think that I have lost muscle mass over the past 8 months and I need to get it back.

It will likely help my pain in my legs AND help with weight loss. The more pounds of muscle you have the more calories you burn whilst sleeping. We have a leg press machine, which we have almost never used, so I am doing that a few times a week and doing situps. (situps are weight training for your abdominal muscles) Since your abdominal muscles are a third of the muscles that support your back,  working on the ab muscles will likely help with my back pain which is also likely due to weak muscles.

For my health and future cancer risks I intend to try to keep below a BMI of 25, as this is said to decrease risks of recurrence.

I have included a picture of my hair, it is just so odd I wanted to share. The white (or clear) hair started growing within a few weeks of chemo and has grown in quite thick, however a few weeks ago the dark hair started to grow in underneath. What was left of eyebrows and eyelids on the left also fell out in past week or so. They have just started to grow in now as well.

I do feel much better about my appearance since my colour came back, and I got a little bit of hair, I am sure it will feel a lot better to have eyelashes too.

Thanks for reading all my "stuff"

love and peace

jankenb @ gmail.com

 

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

Hello Everyone

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

We are traveling down with Ken's sister Pat who is going to come as far as Seattle with us and then heading back to Kelowna.

We have had a very restful holiday, and it has been great. 

Although the flu is apparently all around us, we have been unscathed. Ken got the flu shot before we left, and then whilst in BC we read in the Globe and Mail that a study has come out that says that the people immunized with the seasonal flu vaccine were twice as likely to get the H1N1 virus. So in Canada they were cutting the flu vaccine programs until further notice. (not sure if this was just until the H1 N1 vaccine came out.)  So hard to keep up with all the flu news, especially while traveling. 

I got an email from a friend a few days ago that made incredible sense to me, in fact some of the info I have practiced for years in flu season, though I admit I have not seen studies to support.

I think though that practices that do not involve drugs are not studied with the vigor that drugs are anyways. I thought I would share this info here. 

 As for me I am doing very well.  I feel that the shortness of breath has resolved, and the muscle pain has improved. Once again I am working on a VERY funky hairdo. I must say that what happens with my hair is very different from what seems to happen to anyone else. The white ( or clear) hair has continued to grow pretty much since 3 weeks post chemo. Now I am at 7 weeks post chemo, the dark hair is starting to grow underneath and looks like I have a VERY DIRTY scalp. The rest of my eyebrows (a few stragglers) fell out, I am guessing to allow for the new hairs to grow in.   I would say that 7-8 weeks seems to be when hair starts to grow.

Mentally, I  do not dwell on the cancer. I guess I occasionally worry when I get abdominal aches and cramping ( which I clearly seem to have some of every day), but most certainly this is from the radiation and not a big deal except for the worry it creates. I would find it hard to believe that others in my situation do not worry sometimes as well.

We had lunch with Ken's uncle along our trip (he had his right lung removed in December for a lung cancer, no positive lymph nodes). He said "so what now?", I said well I just watch and wait, and he said "I know what you mean".  There is a special level of comfort around people who "understand".

Ken and I are going to be celebrating our 26th anniversary on Saturday and  we have a special bottle of wine (no surprise there eh?) for the occasion. Then on Sunday its back to work in Bandon.  

Peace and love

Janet Bates

jankenb @ gmail.com

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

The following message, given by him, makes

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

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

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

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

much of a problem as proliferation is.

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

in order to prevent proliferation, aggravation of symptoms and

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

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

focusing on how to stock N95 or Tamiflu):

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

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

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

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

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

in the throat/ nasal cavity to proliferate and show characteristic

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

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

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

 powerful preventative method.

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

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

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

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

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

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

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

in Vitamin C (citrus fruits). 

 *If you have to supplement with Vitamin C

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

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

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

proliferating viruses from the throat into the stomach where they

cannot survive,  proliferate or do any harm.