(2) 2nd and 3rd week in Mayo Study

Even though I think I should be having more problems with these chemo pills - I am not.  At least compared to the liquid chemo I received before surgery.  It seems that the total sick days have been minor.  Sometimes, I worry that I'm not feeling horrible and miserable.  It's almost too quiet.  I was expecting to be sick every day, unable to eat, being achy all over and staying in bed all the time.  That seems more like a true battle - more like a fight.  So I need to believe that it's okay to fight without major pains and serious side effects from the chemo pills.

I am more "daydreamy." I have occasional nausea, followed with sickness and I am more sleepy.  I say that's minor.  Just watching the morning news is a realization that people suffer much more than me right now.  I am so thankful for this chemo treatment.  I am thankful for my family, friends, and those people I don't even know who send their good thoughts my way.  People can be so amazing.

(1) Conversations of Death

Rough night last night.  Nothing like waking up at 3am to go to the bathroom and end up spending the next 20 minutes getting sick!  Finally, things settled down and I was able to get back to sleep.  I hope this is not the start of something worse.  That's the thing with cancer, it makes you think differently about things.  Sometimes, it has a voice all it's own.  It makes me think of things I don't want to think about, or at least not at this point in my life.

Death conversations are hard.  Before my cancer, those type of conversations use to take place periodically between Janet and I.  You know, the "growing old together" type of conversations. Janet would guess that we have around 20-25 years ahead of us , but I would always disagree and say it would be more than that, possibly as many as 40!

In reality, about 2 years ago, I had this strange, vague feeling inside me that I only had about 5 years to live.  Angels didn't come to me in my sleep and tell me.  I didn't hear voices either.  It was just a feeling and it led me to an urgency to get some things done.  I didn't talk about this urgent feeling or thought.  It's not something you announce at dinner or at a family gathering. I do have to wonder if it was around this time (2 years ago) that my cancer began.

The first thing I thought of when I had this sense of urgency was the need to organize the photos I had packed away in my office.  Gathering photos of my past relatives and telling their stories seemed important to share with living relatives.  Devoting my time to photos and similarily, to geneaology, was easy to do.  Even if I didn't believe in that vague 5-year feeling, it was something I had always wanted to do, eventually.  With this feeling I decided I needed to get on it.

To my surprise, discovering that I have a non-curable, aggressive cancer brings with it no predictions of how long I will live.  I've never asked and I like it that way.  My goal is to reach those years where Janet and I are sitting on a front porch, rocking away.  The encouragement comes from the pills I am on. They have shown great promise of stopping growth or slowing down similar cancers.  I put great hope in these pills that I might go into remission.

(1) First week in Mayo study

I've been on the new chemo pills for about 6 days now and I keep waiting for the drastic side effects, but I am thankful it has only been a couple of bouts with nausea and getting sick. I do fear that fatigue has set back in, as I do not feel the energy I had been feeling.

I feel strange things occasionally, but I don't know if it is related; like sometimes a burning sensation will occur around my stomach area. I hope the pills are doing the job of stopping the growth of my cancer. I don't know when I will get another CT scan to find out. I am guessing, probably in a month or two.

Bobbie Sue (my son's girlfriend), stopped over with some garden goodies last night. We appreciate her thoughtfulness and will have a treat for supper tonight.

Thank You For Your Love and Support

From the time I was diagnosed, I can't thank my family and friends enough for the love and support you've given me.   The words of encouragement and your visits have meant so much.

Those who have found a way to help take care of our dog, Jacy, during the past 6 months, there are no words to tell you how much we appreciate you!

It brightens my day to go to the mailbox and find a card with thoughtful messages of love and hope.

The flowers I received during my hospital stays were so beautiful and livened up the otherwise dreary rooms.

The care packages and treats from gardens are so special.  It reminds me of what people use to do for one another "back in the day."

I know I can't begin to list all the wonderful things people have done to show their love and support, but please know, I love all my family and friends, near and far.  You have played such an important part of my life and this difficult journey.

I can't thank you enough.

Accepted Into The Clinical Study at Mayo Clinic

I got the call from Mayo's Clinical Study Coordinator, Beth, yesterday.  It is official now - I passed all their tests and can start participating in their cancer study.

Today, Janet and I drove that familiar trip to Mayo, in Rochester, Minnesota. I had another ecg, a urine test and blood test before I could pick up the chemo pills called Pazopanib.  The dosage is 800 mg.  I will be taking 4 pills daily - after drinking plenty of water.  I've decided to take them before I go to bed so if I deal with any side effects, maybe I can sleep them off.

I feel fortunate to be in Mayo's study since these pills have stopped, or slowed down the growth of other cancers. They haven't been tried on my type of cancer (Sarcomatoid Renal Cell Carcinoma.)  Mayo is hoping to get 30 - 40 people in this study.  Another woman and a man are participating so far.  I am the 3rd chosen participant.  Beth doesn't know much about the other woman in the study but she told me that the man has had no side effects so far, except his hair has turned white in spots. THAT IS AMAZING and makes me feel hopeful that the side effects may not be that bad.

I guess that is my biggest fear right now, the side effects.  The pages they give you listing the potential side effects is enough to make me want to run the other way.  I really don't have much choice though and even side effects for common over-the-counter meds are scary.

I am grateful to be chosen for this trial.  It allows me to dream that my cancer is being zapped and I come out of the study cancer free.

Preliminary Testing at Mayo

I got the call from Dr. Shah saying they had received and reviewed the rest of my medical records. They determined that my cancer fits the criteria of what they are looking for in the clinical trial.  Now all I need to do is pass a series of test to see is I am medically stable to enter into the trial.  He said the coordinator of the trial would be calling me back to set up appointments for those tests.

Beth, the Clinical Coordinator of the study called me the following morning and we scheduled two separate days of appointments.

My tests were scheduled for July 31st and August 2nd.  Janet and I had figured a smoother and quicker way to get to Mayo.  The travel time was 2 hours and 15 minutes. (MUCH BETTER AND NO CAR SICKNESS)

The two days consisted of the following appointments: Oncology Evaluation (going over, discussing, and signing all the legal documents,)  Blood and Urine Tests, CT scan of my head, Electrocardiogram, Echnocardiogram, and a CT scan of Chest/Abdomen/Pelvis

These were the final steps in seeing whether or not I would be accepted into the study.  I was sitting on pins and needles.