Thursday, May 7, 2009

Major Change of Plans

For the last seven days we've been waiting for a call from Boston with a surgery date…the call came today, but with the opposite of what we were expecting. I spoke with Dr. Butrynski for about an hour, and he explained to me that he (and my surgeon) presented my case to some of their colleagues, including an expert on cardiac tumors from Houston. He told me that the overwhelming consensus among this group was that surgery to remove the tumor is not in my best interest, now or in the future. For seven months we have been expecting this surgery, looking forward to it as a major milestone in my road to recovery and to learn that it is now off the table is a huge shock. Especially after being told a week ago that the surgery was going to happen this month.

The explanation that I was given is logical - basically they don't believe the surgery increases my chance of survival. A tumor resection in the heart is a major surgery, that carries major risks and they believe that the risks heavily outweigh the benefits. The primary reason for this is the cold fact that the cancer has spread to other parts of my body and tumor itself is not the primary threat to my life, as we have known all along. In most cases, people who die from this kind of cancer die when the cancer spreads to organs like the lungs or liver. So, according to the doctors, putting me through this surgery doesn’t make sense, as the tumor is well controlled and the threat is elsewhere.

The other reason is the immediate risk of surgery. First, this cancer is very aggressive and though it hasn’t grown at all during chemotherapy, they don't know what will happen when I am taken off of it, and they don't want to take that chance yet (though we will have to do it eventually). Second, there is a possibility that the surgery initiates a response from my immune system that causes all the cancer in my body to just come to life, and because the surgery leaves you vulnerable and weak, this is a very risky situation. They don't want to take this risk for a surgery they don't really believe will help me to begin with.

The new recommendation is radiation therapy to the heart. This causes me a lot of anxiety as radiation does permanent, irreversible damage to healthy tissue and when this first started I was told, very explicitly, that radiation to my heart would cause congestive heart failure (in the future) and this option would only be recommended in a situation where it would prolong my life. That's what I was told in October. I will have a consultation with a radiation oncologist in Boston (at Mass General Hospital) sometime this month to discuss the type of radiation and the risks. I will go into this meeting with an open mind, but I can't guarantee that I will agree to radiation directly to my heart. Dr. Butrynski believes they can accomplish the same thing with radiation that they could with surgery. I am told that a combination of chemotherapy and radiation has a 30-50% chance of totally killing the tumor, leaving it as a massive scar on my heart (this is called "pathological complete response"). This approach will allow them to continue to treat me with chemotherapy as well as treat the other remaining spots (sternum and L2 vertebrae) with radiation, and won't put me through the surgery.

So is this good or bad news? I'm not sure. I need some time to gather my thoughts, do some research, question my doctors and learn about the new approach before I decide. I need to meet with the radiation specialists to discuss the radiation option, and decide if it's the way I want to go. I feel that we have a few important decisions to make and we are going to take our time. My first reaction to this information was to question how the approach could change so radically in such a short period of time. Again, we've been expecting this surgery for seven months, and now, just like that, it's not going to happen. I have to come to terms with that, but in the meantime, I am going to keep moving forward and keep believing that no matter what treatment they prescribe, I will beat this.

13 comments:

Lizzy said...

Oh Will - I am so sorry to read this. I agree you need more info before you decide if this is a bad thing. YOU WILL BEAT THIS!

Liz/FL

Cindy Dout said...

Will,

Good for you for taking the time to absorb and process this new news. It would be easy to give in to shock. I'm sorry to hear you have to adjust so radically. I'm sending lots of good wishes and support for whatever direction you go. I have faith in you!

Meg Sullivan said...

Hi Will-
You and your family continue to be in my thoughts and prayers. I check your blog almost daily for updates so thanks for keeping us all informed on your progress. You are so strong and I so admire you.
Love,
Meg S.

Jeanette said...

Will, I will be praying for you in this decision you need to make. And that you will be at peace.

Anonymous said...

Will,
I am sorry to read this post. I was so hoping for news like last weeks post. I check here daily and pray for you all the time. Stay strong in this fight. Love, Marianne & Scott

Anonymous said...

Will:
I have been following all your blog entries and am sorry to read this one. But, I know you will get to the correct course of treatment moving forward. Keep the faith and I know your strength will make you beat this.

Rob Schmitt

Louise Epolito said...

Hi Will -
I have been following your blogs. You are always in my thoughts and prayers. You have to follow the doctors advise! They are the experts. However,I do see why you're confused. Its good you ask all the questions and do the research. If anyone can beat this thing, you can.

Paula Gage said...

Will,
You are your family are in my daily prayers.
Paula (in Binghamton)

Anonymous said...

Keep the faith, Will. Many prayers coming your way.

Matt Bannister

Elizabeth said...

Will,

I commend your doctors for seeking the widest, most informed opinions and consultation available. As our field teaches us - information is key, and the Boston docs, on your behalf, have sought and received the best advice of the experts.

And while it will take you time to absorb the dramatic change in plans, be comfortable with that. You'll be able soon enough to say what you think. Best example of someone who practices this well is Obama, who when asked why it took him a long time to respond to an issue, simply said "I like to have all the information before I speak."

Prayers and thoughts of all the iSchool are with you.

Anonymous said...

Will:

It's been a long time since I've read your blog and caught up with your progress in this mighty battle you're waging with such determination and purpose. I've been away and am just now coming home to New England, where I have the computer that connects me to you.

So...I read this and understand that you're at a crossroads again: Which way to go? Life gives us many such opportunities to build our discernment muscles, not bad or good, just OPPORTUNITIES we're free to accept or reject. Each of them helps us discover what we're made of and what, at the heart of all we are, we truly stand for.

See this as one such opportunity. A disappointment, perhaps, but also an opportunity to learn more about yourself and the strong stuff of which you're made.

The words come to me, "Let your heart guide you." It was your heart that opened the door to this challenging situation in the first place, and it's your heart that will lead you forward through all challenges and triumphs.

You WILL prevail. You, Will, will prevail. YOU will prevail. You have a great heart. I know this without even knowing you except through Shana's Mom. And that great heart can be trusted totally to show you the way.

warmly,
Meredith Jordan

Anonymous said...

I will keep praying and thinking of you and Shana. It is very hard to take it all in. That is why you have to trust your main care giver and God.

Hope to see you soon! Keep the Faith, you rabid Bills fan.

Uncle Lenny

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