Thursday, July 28, 2011

Deciding among three treatment options

Thank you for staying tuned and for your patience. The past two weeks have been filled with doctor appointments as we sort through this.

The MRI confirmed that the lesion on my liver is indeed there and cancerous. I considered my liver to be a "no-fly zone" when it came to cancer. Looks like we have a violator. 

The next step is to decide what to do about it. It is located near / on the edge of the liver, near the diaphragm.

Luckily, I get to choose what is behind Door #1, Door #2, or Door #3. I suppose I can also pick what is in the envelope that Carol Merrill is holding, some as-yet unrevealed goodie.

Here are the options as I see them:

Door #1: Stereotactic ablation
This radiological procedure, often used for liver lesions, applies heat or cold to freeze the lesion (think - like a wart). However, because of the location of mine, it is a bit more complicated to protect the diaphragm. Still, it is do-able.

Door #2: Proton beam radiation
My mental picture of this one is that they shoot a proton "bomb" filled with radiation into the lesion. Once it reaches the inside of the lesion, the proton is programmed to release its radiation. Very high-tech, and, as side effects go, minimal. It takes about 2 weeks of prep plus two weeks of treatment, then is done. It has been effective for lung lesions, but is still in the experimental phase for liver lesions.  It doesn't sound like the most comfortable procedure, but it doesn't feel scary to me, other than the fact that there will be much radiation used, as well as a few CT scans (meaning more radiation) for guidance. 

Door #3: Surgery
Those of you who have been following this saga for the past few years may remember the big-gun surgery that I talked about awhile ago. Though MGH, Dana Farber and Sloan Kettering don't yet do it, I could have it done in the D.C. area, Pittsburgh, central Mass and Europe. Makes it feel a bit exotic and almost sexy. THAT is how weird my world has become.

Here is how I think of this option -- they open you up, cut out everything they can find, "thin" the peritoneal fat, then pour hot chemo into your abdomen and massage it into every place possible. Then they close you up and turn you like a pig on a spit, so that the chemo flows into the nooks and crannies of your innards. You wake up with a minimum of 17 tubes sticking out of your body. As scary as that sounds, I considered that it would be scarier to wake up with no tubes, indicating that they couldn't do the full surgery. Anyway, the hospital stay is something like 4 - 6 weeks, followed by recovery at home. It does sound brutal, but it brings a possibility of a cure, which the others do not.

Oh, and as a bonus prize, no matter what door I pick, I get to return to chemo again!

Still, I do feel fortunate to have choices. That week in particular, when I was faced with the deaths of others who have so graciously handled all the crap that cancer deals, I am especiallly aware of the fact that I am lucky to still be walking on this earth. 

I had this in mind when I walked past a man in Harvard Square holding a sign that said, "Cannot work due to disease." Wondering what he was facing, I decided to talk with him.

"The doctors found a spot on my liver and they need to biopsy it," he said.

I couldn't figure out how this kept him from working, and I am sure that showed on my face. 

He continued, "It might be cancerous."

He started to describe the biopsy procedure. Even knowing the fear of facing the unknown, I had experienced too much this week and needed to consciously muster some patience for this.

I decided to tell him, "I have a lesion on my liver. And they know it is cancer." I tried to say it kindly.

And then I realized, he felt overwhelmed and completely alone, unable to connect with even another who is on that path. Not only was he lacking financial resources, he also lacked the inner resources to deal with whatever life threw his way. No amount of money would fix that.

I thought of the two people I know who died this week, how they were both younger than him, how they handled their situation with grace and strength. I thought of how their families and friends supported them so closely that the path was not just patient's but woven throughout all their lives, how they remain connected in spite of the risk of intense grief. I thought of how they carry that person with them in so many ways, how they help their love to endure, and how we all support each other as we face life's joys and challenges. 

Of course, he could have been feeding me a line. My kids even said, "Did you see those muscles, Mom? How could he be homeless?" 

Comparing my situation to the one he described, I feel fortunate indeed. Thank you for being open to us, for allowing us to impact you, and for hanging in there with us. And if you have any idea of how I can make this decision, let me know. I've never been good at Let's Make a Deal and can't even decide on dinner at times; how can I decide this! 

Much love and laughter,

Wednesday, July 6, 2011

PET CT shows activity, requires further testing

Thank you for being here for me, in the midst of everything that is going on in your life, and in the midst of this amazing summer! And in this crazy world of so many things to pray for, thank you for continuing to keep me in your thoughts and prayers.

I wanted to share the results of last week's PET CT. I can't say this is a total surprise, but I was still stunned: The PET CT revealed "some activity" on (in?) my liver, and my CEA rose by 1.5 points to 3.7. (Normal is below 2.5)

In the category of things can always be worse, I hated that my CEA kept rising by 0.2 every month. Of course, now I would love to have a rise of only 0.2!

Of course, I would love to not be concerned about this at all. It took a few days after hearing the news to regain my footing again. It has been marvelous to be chemo-free for almost six months, and I want more of THAT.

In those six months, I feel like I've been able to look more outside myself. I could enjoy time with Tiron and the kids, be more involved with their activities, consider volunteering and doing other things that are just plain fun. I truly loved doing simple, everyday things. I even loved being able to wheel in the trash cans, especially since that is so out of character for me. 

Also during those same six months, it has been sobering to see so many others dealing with various forms of cancer. The parents and siblings of my friends. Parents of my children's friends (who are now friends of mine). Friends from high school. New friends. Friends of friends. And, in the category of "most heartbreaking," children of my friends. I hope that I can be as supportive of them as you have been of me. It is an honor that they invite me to be. 

Yesterday, I learned about an incredibly nice guy, who sometimes works on our house, always with a smile and good cheer, who was just diagnosed with a life-threatening cancer, and his road appears uncertain. Sole breadwinner in the family. Oldest child is around five years old.

It can feel so overwhelming.

Yet it is vitally important that we are there for each other.

On the day I had my PET CT, a friend was having a CT scan on her hopefully-gone tumor. Her test was in the morning; mine was in the afternoon. 

Even if I can keep my anxiety at bay, there always seems to be some fumbling around these appointments: A bad stick to my arm. A bad attitude from someone. Something that can turn an already-stressful day into a bad experience overall.

But, on this particular day, my friend left a note for me. A short, scribbled note on a small piece of notebook paper. For me, it was a warm and wonderful gift, making me feel like I had a friend in the room.

For the staff, it was an energizing force that literally passed through them. Everyone I ran into, when they learned my name, asked if I received the note. And when I said yes, they brightened up and then talked excitedly with someone around them about the fact that someone had left this note for me, highlighting their role in getting it to me.

These little things can change the course of a day. I was beyond touched that a friend would think about me on the day of her own big test, write a note and actually deliver it to the department where I would be. It changed my entire experience of the test. Now, instead of remembering the test itself, I primarily remember the note. 

Plus, we were all thrilled with the realization that that little scrap of paper made it to me despite shift changes, messy desks and staff who have many other patients to think about and treat. That little note brought more joy and good feelings than I think she could have conceived. With it, she lifted me, a whole department, and the ripple effects from there.

So, for all of us, whatever we are dealing with, I send out my best and aim to do what I can for everyone who needs it. 

Next step: I had an MRI this morning to get a better look at this. Stay tuned. Thank you for being there, for your prayers, and for every little thing you do.