Wednesday, May 27, 2009

Update...Still Waiting.

It seems like it's been a while since I have posted, but not much has changed since my last post. We've met with all of my doctors over the last two weeks, and are continuing to explore our options. Shana and I had a conference call with Dr. Butrynski last week and he explained, in detail, the decision to not have surgery.

As I explained before the decision that surgery will not benefit me is based on the fact that the cancer has metastasized (spread) outside of the primary tumor. In my case it's in four places, but I was told that it doesn’t matter whether it's in one spot or ten spots, the fact is that the cancer is in a stage where surgery doesn’t make sense, especially a surgery as major as the one they were discussing for me. This decision is an admittance from the doctors that they believe I will die from this, therefore curative treatment (surgery) is off the table. It's also been explained to me that right now my quality of life is pretty good and they don't want to make any decisions that could change that. Obviously I am disappointed and frustrated with this. We've only received good news since I have been diagnosed - every scan I have had has come back with good news (tumor shrinking, no new cancer spots). It's hard for me to understand why they didn't say this (no surgery) back in October, as nothing has changed since then that would impact the strategy. They never told me they could cure this, so I never had those expectations, but they did tell me they'd be as aggressive as possible to try to help me beat this. I feel that not doing surgery is a conservative approach that carries little risk, and is aimed at giving me a decent quality of life, but not the longetivity I'm looking for.

Though I am disappointed, I understand the decision, but I haven't accepted it yet. The proton beam radiation team at Mass General is reviewing my case this week and determining whether this type of radiation would benefit me (and if the benefits outweigh the risks). This treatment is the most expensive medical treatment available and is only available in five places in the US (I found that interesting). It's able to deliver radiation with minimal damage to surrounding tissue, but that doesn’t mean it won't do permanent damage to my heart, as the fact that my heart is constantly moving (beating) makes treating it tricky. From what I am hearing from my doctors now, I shouldn't be concerned with long term damage to my heart because it's not going to matter (they don't put it quite so bluntly). I'm approaching this with an open-mind, however, and will wait until my consultation with the proton beam specialist at Mass General.

We've also decided that it couldn't hurt to get another opinion. My doctors in Boston consulted with a doctor in Houston (Dr. Michael Reardon) who specializes in removing heart tumors. His opinion was that surgery has no benefit to me at all, but even so, if he's the expert, I want to meet him. There is also a cancer clinic in Houston (MD Anderson) that has a lot of experience with Sarcoma, so we figure we might as well make a trip out of it and try to get a consultation with one of their oncologists while we are there. We are currently working on getting them the info they need and I'm hoping to go there for their opinion sometime in the next two months. This doesn't mean I've lost faith in my current doctor. He's done a tremendous job, and the plan he came up with for me has worked better than we expected. I just want to talk to as many experts as possible as this is pretty important.


So, for now, I continue to get chemo every Friday (I have #29 this week) and we are waiting to go back to Boston to meet with the Proton Beam specialist and are trying to plan a trip to Houston for another opinion. The cumulative effects of the chemo are starting to show themselves to me as I am getting some minor neuropathy (numbness) in my hands and feet and I am still tired all the time no matter how much sleep I get (when I sleep). My attitude is still great…Shana and I are staying positive, keeping our heads up and approaching this like we have since day one. Thanks for checking in and I will not go three weeks without posting again, I promise.

14 comments:

Anonymous said...

Will:

As always we continue to stand behind you every step of the way! We love you and are always here for you! Your the bravest person I know and you truly are my hero! Your strength to fight this awful disease is unreal, keep up the great fight.. I love you!
Love,
Steph

Anonymous said...

Hi Will! What a change in plans, no surgury for now... I hope your exploration of the other expert opinions takes you on some fun adventures, too. Enjy the road trips, stay strong and keep fighting!

Jeanette said...

Will, I continue to pray for you. I am sorry to hear about the surgery. My Uncle was also going to try the beam, but then the drs told him it wouldn't work because the cancer was so much in his vessels. Now he is not doing anything. I cannot say that I understand what you and Shana are going through, but I can certainly empathize. Thanks for the update. I will continue to check to see how thing are going. Good luck with the other doctors. Hopefully, something will come of it. Stay strong!

Meg Sullivan said...

Hi Will-

Thanks for updating all of us.
I think of you every day and wonder how you are. Your spirit and steadfastness continue to amaze me. Hang tough and keep the faith!

Love,
Meg

Anonymous said...

Will,
Thanks for posting an update as to how you are doing. I think and pray for you & Shana each day. Your strength and attitude is so powerful. Just go one day at a time to fight this thing. Your family is there for you 100%. Love, Marianne

Anonymous said...

I love you Will.... Mom

Joyce said...

Will,
You both are in my prayers daily. I applaud your decision to investigate all possibilities. Everybody needs hope. Your strength is amazing and I believe so strongly in the power of prayer. Thanks so much for keeping us posted.
Much love
Ajuma Joy

Dom and Andrea said...

Hey Will! Keep up the good attitude! We are still thinking about you every day! We'll be back in Syracuse at the end of July, so we will see you then! Miss you guys!

Andrea and Dominic

RJ said...

Hang in there Will! You've done such a good job of staying optimistic and have been an inspiration to many. Remember the only thing you really have control over is your attitude. Keep positive and good things will happen!

Cindy Dout said...

Wow, you are dealing so well with the sudden change in treatment plans! We're all still here for you. Keep fighting the good fight and keep in touch. Your posts are deeply appreciated.

Anonymous said...

Hi Will,
I found your blog through Ruben's carepage. My son, Shaun, has angiosarcoma also. It is in his liver. I have read great things about the Proton Beam and I hope its an option for you. My family will keep your family in our prayers! God Bless you!
Stephanie Paques and Family
Carepage: ShaunPaques

Shana McCaffrey said...

Will,
I have always been so proud to call you my hero and my husband. I feel like once in your life, you find someone who compliments and completes you; I know that I have found that in you! You give me strength to live everyday like it is precious, the determination to finish anything I have started wth resolve, and just appreciate the simple things in life. I love everything that I have in my life because of you. I want to thank you for always being there for me. There are so many people who are behind you, but Jedi, Brooke and I say, "Go Willpower!" We love you to death, and we need you in our lives. For better or for worse (of course, it always better when you are by my side... ALWAYS MUAH! I love you chauggy!

Your #1 Fan

Anonymous said...

WIll,

you are the most brave cousin anyone could ever have. love you and you'll beat this...

love you superman!!
-Jule

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