Tuesday, November 11, 2008

Still Have Hair...???

Hey everyone, sorry for such a huge delay between posts. I am getting ready for my fifth chemo treatment on Friday and looking forward to my follow-up scans that are scheduled for 11/24 (MRI on my heart) and 12/1 (CT Scans/Full Body Scans) and will get my results on 12/2. I am really anxious about getting these results, but I am confident that the chemo is working and I am praying every day I will be on the operating table in early December. I have to be one of the few people in the world right now actually hoping for open-heart surgery in the near future.

I have to admit I am starting to feel like I am sick, something I didn't start feeling until after the fourth treatment. I am fatigued all the time and on top of that I don't sleep well, which probably makes it worse. The nice thing is, I can deal with fatigue…it’s the nausea that I have been worried about and so far it has been VERY minor and only happening for 2-3 days a week, which is tolerable. I think the drugs they give me for that are working very, very well. On top of that I have a lot of joint and muscle pain that were expected and another thing I can live with. I have read about people who have either reacted much worse to this type of chemo OR who are on a much more harsh type of chemo and I am relieved that I have not had to experience that yet. Even if I do, it's a means to get better, so I will take it in stride. Also, I thought I was being all smart by shaving my head and so far I have yet to lose my hair. I keep wondering why, and thinking to myself that if my hair isn't falling out the chemo isn't working. I have been assured by a bunch of people (including one of my doctors!) that there is no relationship between hair loss and successful chemo so I am not that worried about it….but I do wonder about it. Shana thinks it thinning, but I can't tell as it's so short now anyway. It's still funny when I see people that I haven't seen in a long time. They are always surprised that I don't look "sick". I am going to start having fun with that soon (Halloween make-up is all on sale now).

I found a great resource for Sarcoma (The Sarcoma Alliance Discussion Board) and it has allowed me to connect with some others who are around my age and going through something similar. It is helpful for me to chat with people who have gone through this and gives me a good idea of what to expect. I still haven't found anyone with Cardiac Angiosarcoma, and probably won't, but in exchanging emails with others I have found many similarities in the treatments and expectations for others who have been diagnosed with this type of cancer. It's been very helpful to hear from them and learn about what I should expect (not good to leave that to imagination I am learning) and about how others have dealt with it.

I swear I will update this more often and I still appreciate all the great support I have received. I am still doing great and still amped up to fight this. The more I meet and talk to survivors, the more I know that my attitude about this will go a long way towards the outcome. I have no control over this from a physical standpoint…I can leave that to god and the doctors, but I have 100% control over my reaction and attitude and I believe that's carries a lot of weight as well.

26 comments:

Anonymous said...

Must be nice not to lose your hair.

Gary

Anonymous said...

There's a saying-that god never gives us more burdens than we can bear...And if that's true, then God must think you're very, very strong because this surely hasn't been an easy time for you. We wish there was a way we could shelter you from pain and unhappiness, because if there were, we would. But all we can really do is be here for you.
When it seems like everything in your world is changing, you can always find comfort in the simple every day things that have always been, and will always be...like the love and support of people who care.
We'll always be at your side and be here for you.
We Love You. Mom and Dad.

Joyce said...

Will,
Hair is SO overrated! But you are so right about the difference a positive attitude makes in this battle. We are all so happy to hear that the side effects have been manageable so far. We pray every day for your strength and continued persistence in beating this. Support from others who shared your experience does take some of the mystery out of things. Thanks so much for the updates. We love hearing that our support is sustaining you and we only wish we could help you bear this burden even more. God bless you both.
Love,
Ajima Joy & Uncle Lenny

Anonymous said...

even though i already know everything that you pretty much updated in your blog...i still check this site about 100 times a day..love you and think about you all the time..can't wait til this is all over!! Praying for you every single day..and so glad that u are so strong..i have no doubts that you are going to beat this. kind of like mom said...if he brings you to it, he will bring you through it. love you

-Sis

Anonymous said...

Will:

Like Ive said from day one of this nightmare, you are truly amazing! Your outlook on all of this just blows my mind. You are an amazing guy who I admire more and more each and everyday! I think of you every minute of everday! It was so great to see you on Sunday, I really needed that hug! Like you said in your blog you'd never know you were sick from the looks of you. I pray that in just a few weeks we will get GREAT news from the results of your scans. Your not only my very first cousin but like Ive said before you are my hero! I am always here for you and Shana anytime of anyday! Keep up the great fight. Your a strong man and I know you can beat this! I love you!
Love-
Steph
and of course- Darryl, Kyle, Sydney and Alex too!

Meg said...

I am in awe of you Will...what an AMAZING man you are!

Hang in there. The prayers are still coming daily.

Meg

Anonymous said...

Dear Will and Shana,

You still have hair! Awsome!
I know it was about the 18th day
for me! Our thoughts are with you always, and we know your going to beat it! Again if you need anything we're here just let us know. Can't wait to here great news once the scans are done!

Love, Cousin Tom, Karen, Cain and Cole X0

Aunt Barb said...

Will,

You are amazing!! You continue to have that great upbeat attitude that has to be so difficult to keep.It has been said that having a strong will and positive thoughts is winning 50% of the battle. Keep fighting it Will. We are behind you all the way and continue to keep you and Shana and your family in our daily thoughts and prayers.

Love,
Aunt Barb and Uncle Bill

Chris Shields said...

Will,

This is just a hurdle in your life that you will get over! Continue to have the mind set that you currently have and take one day at a time. God is looking over you as he hears all the prayers said by your family and friends. See you Sunday brother!

-Chris Shields

Joan (Mumsie, Shana's Mom) said...

Will, I ALWAYS knew you were fantastic. How wonderful that the rest of the world is catching up on THAT news!!

You know, every time I see the Verizon advertisement where The NETWORK steps forward to support a Verizon caller, I think of you. Your "Network" is standing behind you every day. I want to be the one who hangs in the air, partly because I think it's way cool, and partly because I would be closer to God so my prayers could be heard at any time of day.

Yes, Will, it's true: every available minute of the day, I pray. At my age, I awaken during the darkest part of the night and I start right then: I pray for you. It never fails. I don't want any minute of mine to be idle, but every minute to be filled with special prayers for you.

Interestingly, when I was a child, my father, who was very religious, told me about a nun, a Sister of St. Francis, who wanted so much to return to Germany to visit her family. My father told her that his daughter was a fervent prayer, and he would ask her (me) to pray. I did. Off she went to Germany. That kind of stunned me. Of course, at the age of 9, I thought I had kind of caused a miracle!! So, now I am using those same prayers on you. Hope you don't wind up in GERMANY!!!!

I love you, Will, and stand ready in your Network to do anythng you want, anything you need. You have a fabulous wife who feels exactly the same way! As a team, you and she and WE, together, will make it! As the saying goes, "When you're going through hell, just keep going!"
Hugs and love,
Mumsie

Anonymous said...

You actually don't know me...I work with Shana at WGMS. You must be a great guy because getting to know Shana the last year or so has been wonderful and I know she must know "how to pick 'em". You gotta be fabulous! Just want you to know the staff here ar WG are behind you all the way in our daily support of Shana and our prayers for you. Knowing how positive Shana is and reading your blog, you positive energy will serve you well! You will beat this and we are all thinking of you. Just wanted to let you know. Good luck!!
Diane Lowery

John said...

Hi Will:

It is good to read that you are strong and determined. You are in our prayers.

John

Anonymous said...

Hi Will...
Your attitude is amazing...it is so important to be positive, as you surely are. You are in our prayers every day...we can't wait to hear the good news soon that the chemo is working as planned and you are off to have the surgery.
God Bless. Love, Marianne & Scott

Jamie said...

Will,
We are thinking about you and praying for you. It is good to see that you are in good spirits. May god bless you, pray for you, and keep you safe during this time. "If God brings you to it, he will get you through it." Anonymous.

Love,
Kevin and Jamie Reistrom
(Susan and Matt's friends)

Chris Shields said...

Will,

Wow, I need to pay attention more to detail. I just came on here to confirm the times of your benefit tonight and I just noticed, IT'S NOT TONIGHT! For some reason I wrote down November 16th on my calendar.

That explains why the post I made on the 13th says "see you Sunday".

Kim and Don Seynmour said...

Hi Will! It is true..seeing you around the office..you do not look sick. I have to tell you that whenever I see you, I am filled with hope and happiness and it's all I can do not to HUG you! Yes, I am the hugger in the office. I know you have the strength and spirit it takes to win this battle. But never forget there is an army of strentgh and spirit standing right behind you, God is taking the lead!

Take care!

Kim

Beartooth said...

We love ya, you big red pit bull!

Michelle M

Anonymous said...

Will just wanted to let you know all my fellow classmates and professors are praying for you and wish you the very best. I just recently learned, that one of my classmates was previously diagnosed with cancer. Since then she has successfully beaten it and has not had a relapse since. She says she knows her cancer is quite different from what you have but she wanted to express the fact that cancer is beatable and to keep up your great attitude!! Will, you have been so unbelievablely strong and inspirational. I want you to know how proud of you I am and that I believe in you!!

-Much love,
Susan

Joe Rizzo said...

Hey Will,
I just booked my flight to come home for the benefit.
Stay Strong. See you soon buddy.

Joe

Dom and Andrea said...

Hey Will! It was great seeing you and Shana last weekend! We had an awesome time with you guys. I love watching you beat Dom in Madden. We wish we could see you guys more ... it was hard leaving. But we will definitely be back again soon. And even though we are 1400 miles away, we are ALWAYS here for you guys .. day and night! As you know, we are up at all hours, so you can call anytime! We love you and Shana ... you are truly the best friends anyone could ever have. We miss you guys. See you soon!

Andrea and Dom

Aunt Barb said...

Will its just about 11:30 and probably by now you've completed your 6th round of chemo and hopefully your last. Let our prayers be answered that the chemo has done its job and you are now ready for the next stage of treatment. You continue to be in our daily thoughts and prayers.


Love,
Aunt Barb and Uncle Bill

Anonymous said...

Hey Will and Shana-

Good to hear you are not going through a lot of side effects. Some people do not have any so don't take that as it is not working. I wish the best for you and keep you in my list of prayers everyday. Keep positive and let me know if you need anything

Melissa Chirico- Brown

brooke n shaun said...

Will and Shana,

We're glad that things are going well. We miss you alot. Shaun and I are praying and thinking about you everyday. I won't be able to see you during Thanksgiving and I'm upset that I'm not able to come home, but Shaun will be home and he would like to stop by and visit with you and Shana. Hope all is well and talk to you soon.

Love, Brooke and Shaun

Erik said...

silly willy! hit me up on facebook my email is erik.quilty@gmail.com. would love to spend some time with you. gary just told me you have a facebook so i am looking you up now. stay strong bro...we'll hang out soon.

Beartooth said...

thinking of you!

michelle m

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