Tuesday, March 3, 2009

Good News Again!

Every six weeks since my diagnosis I have had follow-up scans to check the status of my disease. I had scans today in Syracuse and for some reason I was more anxious and nervous about it than usual. All my anxieties were put to rest when Dr. Scalzo opened the door and exclaimed "great news" before he even stepped in the room!

The scans I get every six weeks are to ensure that the cancer hasn’t spread, to check the tumor and ensure it isn't growing and to determine whether or not we are still on the right track. Today's scans showed no new lesions or tumors and showed that my tumor has shrunk more since the last set of scans. The current size is 3.9 x 3.4 cm (in October it was 8.4 x 5.2 cm) which means that the chemotherapy is still working to both stop the spread of the cancer and keep the tumor under control.

I am not sure why I was so anxious going into my scans today. I think it's a combination of the fact that I haven't been feeling well lately (chemo sickness, pain, etc), some new pains I have been getting (every strange feeling I get gets my mind wandering) and some new information/research I have received about my kind of cancer (which wasn't very elevating). I came across a study released in June 08 by the Cancer Society and the Mayo Clinic that is a study of every case of malignant primary cardiac tumor seen at the Mayo Clinic since 1975 (which is a whopping 34 cases). Reading it was very informative, but also not very uplifting (I've been aware of the survival rate all along and have never let it get to me, and don't plan to!). One thing that struck me though is the median survival time for cardiac tumors with metastasis (that's me). In this study (and many other's I have come across), it's five months. I will be at the five month mark in two weeks and after getting the good news I got today I am starting to feel comfortable saying that I am winning this battle. I know I have a long way to go, but I feel that today's results were a big milestone for me, especially because my disease hasn’t progressed (in fact it's regressed) in 20 weeks and these results cleared the way for me to begin radiation next week (which is another milestone I am excited about). My doctors rock.

The worst part about this is, to date, is waiting. It's like I am living my life six weeks at a time right now and can't think much further ahead than that. I have six more chemo treatments (I get this Friday off and start again on 3/13) and after that we go back to Boston to find out what's next. It's unsettling to know that I might be having surgery…but I might not. I think I will have it in May...but it might not be until July. It's hard to make plans and look into my future much more because of all the uncertainty around this. I don't know if I should register for school (I am three classes away from my M.S. degree) or if I should book a trip to Vegas this summer (and I have to plan a trip to Yankee Stadium!). I shouldn’t complain though, because if that's the worst part of what I am going through right now I guess you'd say I am doing pretty good.

I will post later this week when I know more about radiation and what's going on with that. To be honest, I haven't done too much research on it but I need to get on that. I go on Wednesday to be "mapped", which is another CT scan (or set of scans) that maps out where they are going to hit me with radiation starting next week. Thanks again to everyone for all you are doing for me. We have so much support and love and it never slows down and I absolutely believe that it's a huge part of where I am right now with this.

18 comments:

Anonymous said...

Yeahhhhhhhhhhh!! Heard the news last night from mom! So glad that everything went well yesterday! I could tell you were very worried when I talked to you! What great news! We love you and continue to support you every step of the way! See you soon!
Love-
Steph

Vicki said...

Will
This is wonderful news. Keep your chin up, and keep your positive thoughts flowing. we are all pulling for you.
Vicki

Cindy said...

Hey Will,

So glad I checked the blog today to get the good news! You made my day. We still miss you on 360! I'm keeping you in my thoughts and going through the ups and downs with you!

Anonymous said...

Will
Glad to hear the good news.We're all behind you rooting for you.
Austin wanted me to tell you lets
go Bill's and Willpower.We love you
and keep up the good news.
Love
Larry & family

Andy Wiechmann said...

Will - this is awesome news! May the power of Mattydale keep you strong!! Honestly - let us know if you ever need anything - anything at all. Keep us all updated - I love hearing good news like this!

- The Mayor

Liz said...

couldn't be happier about the good news! I am so proud of you for going through all of this and still somehow being the amazing and strong person that you are. I pray for you and think about you ALL the time! I love you so much, and I will be with you every step of the way. I know how hard its been on you and all of us, but it has made me realize just how lucky I am to have you and such a great family. And I know you will come out on top, you are just TOO good! WILLPOWER!!
<3sis

Lizzy said...

Hey Will!
excellent news!!!!! I am so happy for you! Keep thinking positively. My ex-mother in law never complained about the radiation, she said it didnt hurt and didnt make her feel sick so she actually perferred that over the chemo.

TTYL - Liz

rubensmom said...

Hooray!!!!! This is such fantastic news. I am so happy to read this. I am keeping you in my thoughts and prayers always.

And you must stop & see us if you come to Vegas...would absolutely do my best to have Ruben meet you in person!

Anonymous said...

Heres to Will Power!!and the GREAT NEWS!!!!!!
Its going to be a long road, but we are headed in the RIGHT direction!!And we are at your side every step of the way.
Keep your chin up,a smile on your face, and always stay positive. There's no other way.
We will beat this.
We love you soooo much!!!
Mom and Dad

Anonymous said...

Will~
That is great news! We are so happy for you! Keep up your strength and good thoughts for you are beating this! You are such a inspiration for others. Thank you for the updates, we are all here pulling for you!
Love,
The Rizzo family

Anonymous said...

Will:

Great to read the continuing good news. Keep the faith and the positive attitude.

Ethel and I wish you the best and to the whole family.

Rob and Ethel Schmitt

alie said...

Im so glad to hear the good news Will! I think about you and Shana all the time!
See you soon!
Love,
Alie

Anonymous said...

Will,
Wonderful News! I was so happy when I read your note -- I always keep my parents posted after I check your blog.... They (Aunt Peg and Uncle Paul) were very glad also and wish you the best. Keep your spirits up and remember you are in all of our prayers. Love, Marianne, Scott, Scotty and Julia

Joyce said...

Will & Shana,
That is such awesome news! I can just see Tony telling you that - he is so amazing! Let me just tell you though, what you are suffering from now is what I call CFS (Cancer Fart Syndrome). Once you have been diagnosed, every time you fart, you are sure it's some new cancer problem! It's totally normal and I found by calling it CFS it put it in perspective for me. You really can't think about new cancer because there's nothing you can do about it anyway. I know that's easier said than done, but it can be manageable. You have put your cancer in God's hands and so far He's doing a great job. Remember that when the worries hit. Talk to Him constantly. I know I did, and we had some pretty interesting conversations. Know that we all pray for you every day and will continue to help you face this monster.Please let us know if there's anything else we can do for you. (Of course, for me, that would be anything I can do for you AFTER April 15th!)
Much love, hugs & kisses,
Ajuma Joy and Uncle Lenny

Anonymous said...

Once again, thanks for the update and the education. I learn more and more even though it is not a subject I would have chosen to study!! Keep us informed just as we keep you in our prayers.
Yankee Stadium, huh?
Lenny O.

Nicole and Kevin Cleland said...

I love it when I check in here and see the words "great news". I'm so happy things are still heading in the right direction! Keep kickin ass Will!

Anonymous said...

Dear Will,

I have been quietly following your blog ever since I heard of your news and posted a note. As you may or may not know, I am an echocardiographer, as well as a nurse and I have worked along side with or in the office of the physicians who are caring for you now.

Though I do not know your cardiologist specifically, the cardiology practice responsible for your care is the best in the Syracuse area, in my opinion. I "grew-up" professionally with several of the the original physicians in that office: there are no finer physicians than Dr's Carlson, Berkery, and Longo and I would put my life in their hands without question (and have). Only the best young docs are chosen to join that group and you must have had one of the best to make your diagnosis. The angels were definitely watching over you that day. Though this statement belies my age, I even remember Dr. Scalzo as a young medical student, before he chose his specialty. He stood out even then as an excellent physician.

I have only seen cardiac angiosarcoma once in my career, which, as you so know now, is about the frequency. I am so pleased to hear you are doing so very well. Chemotherapy has gotten so much better over the years and is so much more effective. And though I am sorry to hear you are experiencing some side effects, which is more common as the dosage increases and accumulates, I am so happy to hear your tumor size continues to shrink so considerably and that the metastases have ceased. Thank God. Remember, "positive imaging" always. It is well documented in the research literature that children who positively image the chemotherapy destroying the cancer cells (like a little "pacman" chomping down the cancer cell") have a better response to chemotherapy.

I have spent, now, 34 years in the nursing profession, 25 years of it were in echocardiography and nursing combined. I about ten years of my career with critically ill patients. These folks taught me very early in life about how to live life fully, whether with or without illness. Sometimes I have heeded their recommendations: I have regretted the times I have not.

With regards to your post and some of your questions, though I am not in your situation, and I am not one to give advice, from my patients' perspective, they might have a few things to say to you. I have been wanting to write their thoughts down in a book for some time, but I will share some of with you now, since it is now important to pass on.

For example, many of my patients would tell you to finish that Master's degree (if that is what you want...I am finishing mine, at the age of 53... then on to the doctorate!), or take that trip. They would also advise you to do what you want to do, go where you want to go, see who you want to see, say what you want to say and to not delay...ever. They would tell you not to waste a minute worrying about anything, ever, for it accomplishes nothing: it only wastes valuable, life-giving energy. This goes for all of us, no matter what phase of life we are in. This is all easier said than done, of course.

The above are the thoughts of patients and family members who are recovering from or going through serious illness. These are the lessons they shared with me, that they wanted me to know, so that I would live my life well. How I wish I remembered to keep these lessons in the forefront of my mind more often. Folks say to their nurses so many things they do not share with others, for they trust them. They are treasures meant to be shared, and I so, share them with you, with my thoughts and prayers.

Again, Will, to you and yours, God Bless and God Speed,

Jennifer and the Liggett Ladies, Courtney, Sarah, Katie and Erin

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