Tuesday, October 13, 2009

It's been ONE YEAR!!!

Well, it's been a year since my diagnosis and I think I've grown more in this past year than any year of my life. Obviously there have been a lot of hard days and times, but there's been some great times as well, so looking back, I'd say I've had a pretty good year. I consider myself very lucky and aside from a miracle, I don't think I could be in a better situation with this cancer than I am right now, and I am proud of how far I've come, and how positive things have gone over the past 12 months. I could use a break from the chemo, but I am not much of a complainer.

I just completed my fourth chemo treatment of the AIM regimen and it's really horrible for a couple of days, then it's not so bad. Being in the hospital really sucks - for the first few days I can work, read, etc but the last two or three days, when the drugs start to hit me, I don’t do anything but lay in bed, half conscious, often not knowing what day or time it is - that's the worst part of it. I have visitors that I don't remember, I hallucinate pretty bad the last two days and I absolutely HATE being in the hospital. That's the worst part - it would be great if I could be home, in my own bed (chair or couch), but being there, as GREAT as the staff on Four South are, really, really sucks after six days. I love the staff there though - the doctors, PA's, nurses and assistants are amazing people and do work that I couldn't imagine doing…thanks so much to them and the way they treat patients (and patients families!).

There have been some stupid complications - like an infected port (the thing they put my chemo in through in my chest) which is requiring me to get IV antibiotics at home through a machine, which is very disruptive to Shana (not so much to me since I just sit here and work all day anyway).

Before my last treatment we took our annual football trip, and like usual, the Bills got ROLLED. Next year we are going to a Giants game so we can see a NY team win. Miami was great, the weather was amazing and we saw a Metallica concert (it's been like 15 years since I've seen them and they rocked!) which was great. It was a nice break, and because of it I got an extra week between treatment which I think helped me a lot.

Coming up for me are two more chemo treatments from Crouse (hopefully only two!) We are going back to Houston next week to get scans and meet with Dr. Ravi, and we will push him to give us a little idea of what he thinks is next. As I have been saying for 12 months now, I am hoping it's surgery, but you never know, he could opt for more chemo (but as I said above, I need a break from this stuff). I will have my last AIM treatment (for life as any more would be too toxic) in mid-November and then I am hoping we can get surgery scheduled for sometime in early January (in Houston). Fingers crossed…

I've got a lot of emails over the last few weeks and I can't believe it's been over a month since my last post. I pledge to keep this blog updated more frequently because I know people that care about me are checking it and I VERY much appreciate it, and continue to appreciate all of the love and support we get from the wonderful people in our lives!!

16 comments:

Anonymous said...

Will,

Wow- its hard to believe its been one year already.. You are an amazing man! You continue to fight everyday to win this battle, and someday I just know you will! I love you so much and we are always here for you! Cant wait to see you guys again.. Hopefully it will be soon! GO WILLPOWER!!
Love You!
Steph

Unknown said...

Great to have a new post! Glad to hear you are getting through the treatments - even if you can't remember them. We are thinking of you always. I admire your strength and positive attitude. It will pay off! Go, Will!

Meg Sullivan said...

AWESOME...INCREDIBLE....WONDERFUL NEWS Will! I was so very happy to see your new posting. I do look for one a few times a week so keep updating your site when you can please.
I think of you often, and say prayers every day for you!

Anonymous said...

It's about time you posted, you slug! It's been a long, hard year, but you're right - there have been some good times too, and we're all learning from this journey we're taking along with you.

with lots of love, Aunt Kate

Anonymous said...

Will,
I am so glad you posted. My mom gets updates from your nana and she fill us in - but it is nice to hear directly from you on your blog how things are going.
I pray for you daily and hope your surgery is scheduled in the very near future! I bet that Metallica concert was great! Love, Marianne

aunt eileen said...

and what a year its been
xxoxo

Anonymous said...

Will,
We are proud of you. I can't even imagine how hard the last year has been for you. Everytime I see you, I can't believe that you are sick. You will power through this. I am convinced of it. Congratulations on the year. I know that is a big statistic for cancer. We all love and pray for you.

Ryan, Lynda and Vanessa

RS said...

HI, Will:
Hope the next 2 AIM treatments are the final AIM treatments. I am keeping my fingers crossed for you.
I thought the Bills would have any easy win against the Browns. If the Bills beat the Jets it will put lost hope back in the season.
Kind regards,
John McKenney

Anonymous said...

Hi Will,
You don't know me, I'm a friend of a friend but I just wanted to let you know that I have been keeping up with your blog because you are just such an inspiration to me. Your positivity truly has such an impact on me and I know there are probably a lot of other people who feel this way. Congratulations on one year, my prayers are with you!

rubensmom said...

So good to read about your latest journey. Ruben's heart valve replacement was very successful & he was only in ICU for 1 day and home in 2 days. Tomorrow marks 1 week since he had surgery & I've updated him with your progress. Will, we are really pulling for you. My husband loves hearing of your trips to games and concerts (he's a huge sports and music fan like you). Take care & we pray for your continued progress/recovery. With kindest regards, Sandra Mendoza-Avila

Cindy Dout said...

Wow, congratulations on making it through this year a hero! But Metallica? Really? I'm surprised that didn't drive the cancer out of your system.

Keeping you in my thoughts as always...C

Anonymous said...

Will,Shana, and Family,

Were has the time gone! I can't believe it's been a Year! WOW!! You're such a inspiration to all!
What a blast from the past a Metallica Concert, glad to hear you'd a Warm Break in Miami!
Look forward to hearing GREAT NEWS when you're done in Houston! Our Thoughts are with you all always! Again if you need anything, we're here?
'WILLPOWER'

Much Love Cousins Karen,Tom and boys :)

Hazelrah said...

I hope all goes well for you. :)

Unknown said...

Will - good luck to you. I am undergoing treatment for angiosarcoma as well (just in my fourth AIM session now at the University of Washington Med Ctr.). I may be seeing the staff where Dr. Ravi is as well if I can discuss more with my oncologist here (who knows of Dr. Reardon's surgical articles and angiocarcoma treatments). Good luck to you!
Here's what I've written on the web so far if you are interested:
http://www.dailykos.com/story/2009/10/2/786620/-Roy-Rogers-is-riding-tonight.-Cancer-and-me.-Update!

and

http://www.dailykos.com/story/2009/10/8/790869/-Not-uncomfortably-bald...(photo-diary)

Good luck and health to you.

-exmearden

Anonymous said...

Break out the band! It's done and the news is wonderful, Will.

God is great!

Enjoy the warm weather when you get out of the hospital.

Blessings by the ton,
Helen and Bob Schmitt

Unknown said...

My moms experience with Dr. Ravi left a lot to be desired. He kept pushing chemotherapy; which is natural ,I guess, because he's a chemotherapy doctor. We made trips from Alaska to Texas every few months for more than a year--With no shrinkage--at best we got stability and shortly thereafter it started to grow again. He never suggested any other form of treatment.Finally we consulted with a radiation oncologist here in Alaska--and her sarcoma shrunk 20% after a few weeks of tomotherapy radiation.
bottom line:don't let him overlook the other possibilities!