December update

Hi Everyone

I guess I figured I would try now to make an update once a month, as life has really become further and further away from this original journey.

Much less to report.

Ken and I performed at the Eugene Holiday Market on Saturday with Mark and RIck and we had a great time. It was the first time ever I have performed with out even a smidgeon of nervousness, it is funny how life's "experiences" change you. It was great fun, and Ken announced half way through the reason for my "unusual" hairdo, and asked if there were any other "survivors" out in the audience. At the end of the show a man came up with his daughter (a girl of about 8 who had been dancing in front of us for the whole show) to say that she was a 3 year survivor. She certainly looked healthy and father sounded certain that they "had it beaten". I could not help but feel sad to think of what it must be like for a child to go through all of this.

Since I last wrote, I finally went to see Dr Cook about my groin pain etc, and he ordered an MRI, which was normal. My CA125 has been very low now for about 5 months, (the tumour marker) which is great and very reassuring. So I am almost to the one year marker with no signs of recurrence. Yahoooo.

A few weeks ago I had what I can only call a "breakdown". I was faced with an unrelated stressful situation and I just became profoundly depressed. I suddenly felt worse than I have throughout all of this. In working through it all, I realized that more than anything it was a huge empty space in me. When this cancer was diagnosed, I had only just dropped my youngest off at college (became an empty nester), I had been working on a cd for over a year and 4 more before that had filled my life as well. Then with all the fears and time commitments of this cancer and the treatments, life has been very full. Suddenly it is very empty. It is empty of bad things AND good things. After a few days of ruminating about all of that, I realized I just had to "fill it up with good stuff"

And that is exactly what I have been doing. It is unfortunate that this is not a time to begin a garden, but one can think in that direction. We are having at least 2 "band" practices a week, which are more "therapy" for me than anything. We do get better with them musically as well. :)

Oh and mushrooms, I have filled my life with mushrooms, where/when to get them and how to cook them.

Ken and I both realize we have been through a lot in the past 8 months, sometimes I think that he has been through more. We spend almost all of our time together, in what is essentially a comfort zone, we are very kind to each other.

We made a plan the other night that in the spring we are going to drive to the Grand Canyon

Physically, my blood counts finally came back to normal, or close enough to normal. It was kind of funny, a few weeks ago, I saw Dr Cook, had the blood work done, and it was normal (for the first time in months) and I got a cold the very next day. So I took ANOTHER week off work to protect other people from me.

My bowels are clearly changed, I go 6-7 times a day and often pass mucus. The vagina has to be stretched quite regularly, 3-4 days without stretching and it begins to close in.

I went for a bone density scan a few weeks ago. They sample from the hips and from the vertebrae.

I am not sure which vertebrae they use, but my vertebrae was normal, but my hips got a t score of -2.2 and if it is below 1.5, they suggest you begin treatment.. Having been a long distance runner for so many years AND no other risk factors, it does seem odd that I would be so close to osteoporotic

I am thinking this is related to the radiation.

I will go on the meds that rebuild the bones, such as fosomax, actonel etc.

Interestingly enough, a study just came out that same day, that showed that women who were taking the meds for osteoporosis for 5 years, had a 30% lower risk of breast cancer.

I would suggest a bone density scan for anyone who has had pelvic radiation.

I will likely repeat the bone density scan in a year to make certain the Tscore is improved.

The cool thing about these meds is that they now make one form that you only have to take once a month.

I still have some numbness of my right foot, but it is mild.

Having said all of this, I do not regret for a moment having been through chemo and radiation. From all I have read, they likely have saved my life and so these "nuisances" are just the price.

I feel so fortunate to be in the financial situation to have been able to recieve the full chemo and radiation suggested, as I am aware that others without insurance might not even get surgery.

WIth that in mind, I am throwing around the idea of doing a concert with 2 other "ca survivors" in an effort to raise funds and awareness for those who cannot afford cancer treatments. I am not sure I have the energy to do the organizing for such an event, but will continue to look into other people who might help with that.

The way I envisioned it is, we could start some sort of "foundation fund" perhaps through the cancer agency for those who otherwise would not be able to get treatment.

Much Love

Janet

jankenb @ gmail.com