What's Next?

Dear friends and family,

I write this after an emotional day in which I made some hard decisions and had nearly 50 staples taken out of my head!

I expected to be offered options by my doctor but I don't think I realized the full ramifications, or the need to act immediately upon them. First of all, the surgery was very successful in that my surgeon was able to remove all the cells he could find without causing any deficits in my brain. But, there are still options to consider. Basically, my options were:

1. Watch and wait for the tumor to start growing again, which it inevitably will. Surgery can only do so much and there are always cells left behind. The area in which it could potentially start growing is in speech and language–not an area in which to mess around.

2. Do radiation therapy, which is the most sure way of getting rid of tumor cells, but also has the danger of causing deficits given the tumor site, some of which may not be apparent until years down the road.

3. Start on a chemotherapy drug that has been used for about 15 years. The drug is taken orally 5 days a month for 12 to 18 months. It has been shown the shrink the size of tumors.

4. Enter a new drug trial for a chemotherapy drug being tried on recurring low grade tumors. There are high hopes that it inhibits the recurrence of tumors. It also is an oral medication and is expected to be taken for about 12 months, but it is taken every day.

Ten years ago I was determined not to have chemo or radiation. I'm not sure I understood the ramifications of that determination then, but I better understand them now. It is an obvious choice to choose one of the chemotherapy alternatives. Either one has expected mild side affects and lots of tests to go along with them. The new drug trial is very new, there are only about 20 people on this therapy, all at UCSF, and they only intend to have 60 participants. There are a few more tests to endure, but not that many. On the side of jumping at this opportunity is the need for a biopsy within 3 months of beginning the trial (which I have because of surgery). I can also opt out at any time if it is not working for me and move to the chemotherapy that has been used for 15 years.

I have chosen the new drug trial option.

So, I started the process yesterday by getting initial tests out of the way. If I start the trial by Wed., Nov. 10, I can use my MRI after surgery as a base and that is one less test to do. I had a lung x-ray, an EKG and my blood drawn to check for Hepatitis. This morning I went for fasting blood draw that checked another batch of things. The last thing I did yesterday before we left the hospital was to have my staples removed. It hurt. It was nearly 1 p.m. We left home at 6:45 a.m. to make our appointment. I had already endured making a heavy decision and a variety of tests, and it was the last straw. I broke down on the way back to car.

Tomorrow we will go to Stanford for Ian's first 2 month check up. We have every reason to expect him to be given a clean bill of heath! But, this is something we will be doing every two months for the next year. And now, we will add lots of tests and a chemotherapy treatment to the the following year as well, much of it taking place at UCSF. On our way home we will stop there to begin my therapy.

It is a lot to take in when I'm not even recovered from surgery, but I feel it is the right decision to make. And, I trust that it will not feel so overwhelming in a week or so. The news is still good. Ian is doing great. I am recovering well and that fact that my tumor is at the same grade level gives me very good options. I can look forward to a high quality of life for years to come–many years.

My goal is to make to most of this next year. I want to find ways to thrive and live life to the fullest this year instead of seeing it as a burden. Our beautiful daughter, Helen, is about to launch out on her and is doing exciting things. Ian is growing into a young man we can be proud of and doing his own new things. There is potential in every part of our lives with which to engage with passion and creativity.

We feel truly blessed and very grateful. Our journey through health challenges this year reminds us yet again of our need to celebrate each day in love and life and joy. We hope our story can help others live in the full blessings of God each day.

We also covet your prayers for David's Dad who is dealing with multiple secondary symptoms from the Multiple Myeloma he has been fighting. While better at the moment, pain management and other issues are at times very difficult. It is especially hard on his mother, Barbara, and his sisters as primary caregivers. They can use all the prayers they can get!

Thank you so much for supporting us through this time. Love, Natalie