Hello Friends and Family,
I don’t even know where to start this last update. How about I start there. I plan on this being my last update. But that is a good thing.
On May 17th I took a PET Scan that came out clear.
I AM CANCER FREE!
|Me at the Full Moon.
In April, my doctor had suggested we do a PET scan. The May 17th date seemed to be appropriate since that would be about 1/3 of the way through the SGN35 treatments. She also thought it could show some improvement (that might be the biggest understatement of all time) and would be a good base line moving forward. I had been feeling pretty good and kind of wanted to see where we were at also.
Silas drove me up to take my test at 9 am. We then went to the go see “The Avengers”. You know doing the “big city” thing.
When we got back to Meg and Dasch’s house the PET scan report was online. I had to confirm with Silas that I was reading it right. It sure looked like a clean scan with all my lymph’s back to normal except a small mass in my chest, which was not Metabolically active.
After deciding that this meant I did not have cancer, I grabbed Si and gave him a big hug and started to cry.
It is hard to explain the feeling I had. I had been really hoping and thinking it could be clear. But I really did not want to hope and be disappointed. I had thought a lot about how I would react if I even had a clean scan. Even earlier in the week I had broke down in the shower thinking about how great it would be to hear the dr say “you don’t have cancer anymore.”
The funny thing was I had a Moab Travel Council phone meeting 5 minutes after reading the report. I was on the phone for about 2 hours the whole time hardly paying attention and trying not to cry on the phone.
After the meeting, I started sending out a ton of texts and add it to Facebook. I still have not had a chance to read all the responses. At dinner my phone just vibrated the whole time. I tried not to be rude and look every time but it made me so happy each time knowing another friend or family member had heard the news.
I can truly say that was one of the best evenings of my life.
For the rest of the night I was kind of in a haze. I fell asleep crying and hoping I would not wake up and it be a dream.
|I have been riding at least once a week
The next day I awoke with the biggest grin. We meet with the Doctor at 1pm. It really was a long morning. I had hoped to go for a mountain bike ride with David Everitt and Silas but it was pouring rain. I had to laugh at the crappy weather. Everyone kept telling me how nice it had been for the past month. The one time I bring my bike to SLC to go ride and it had to rain, just my luck…but hey I don’t have cancer. I guess it all evens out!
I was eager see the dr because I really wanted to hear her words and be sure I was not misreading the scan.
Dr. Prystas went over the details and upcoming options and such. She was going through her physical exam and I just had to ask. “So what exactly does this mean?” She kind of laughs and says. “Arlo, You are in what we would call a Complete Remission.” WOW. Those are by far the most beautiful words I have ever heard. I could go on about the poetic-ness of the words “complete remission.” For me, I must admit, I was pretty sure I would never hear those words. And every time I say them or write them down now I start to cry. The only thing I can think to equate it to is "It's a Boy/girl" for parents.
This is not all happy though. The Bone Marrow team is still pushing for a Bone Marrow transplant with someone else’s stem cells. I have explained before that this would end my way of life. The reason for this is that the new drug just is unknown for the long term. Will it really keep the Cancer down? And there is a decent chance it will come back at some point. So I still do have to be concerned and vigilant. There also are no long term studies on the drugs, which means I could have other issues down the road. We did decide to take the drug to its completion and discuss then more options.
To be honest it has still not really hit me yet. I am still trying to figure out what it means. I have been preparing myself for so long for death, that this is like slamming on the brakes of a train. Now what way do I go?
So what does this all mean….Well I guess I have to go back to work and unretired. I am having major anxiety and stress over“life.” I have put off so many of the “trivial” things that it is overwhelming. I think that is going to be my word for the next little while. Overwhelming. Shit it looks like I am going to have to mow and rake the yard now. And no Porsche L…yet.
To “know” I was going to die soon made life really easy. It just meant everyday was special and to take care of it and those around you. Now…..Life is back. But I feel so different. I feel that I went through this huge change…but in the end I am just back to the beginning with a sterile body that weighs 60 lbs less. Maybe that is a bit harsh. I feel like I am now searching for my purpose again.
This will sound stupid but I am also very afraid of losing the compassion. Ok that is the wrong word. I am afraid of me taking for granted the love that was shown by so many people and even more important my openness to all these wonderful people in my life. And to those that have never met me but I inspired. I really really hope I can take this experience and make good come of it for a long time. It is hard to think I am not changed because I have. but I just don’t know how yet.
In an earlier email/blog at the end of my first line of treatment I wrote a list of “the Good, the Bad and the Ugly of cancer.” Looking back on that, it was not only premature it was also…insincere. I really thought it was not going to be a big deal and would be something I could also tell as an interesting story at parties.( which I am sure I still will, youjust can not stop me from telling stories.) I claimed that I would never call myself a “Cancer Survivor.” I can tell you that is not going to be the case now. I would say I got pretty much the whole cancer experience.
I lied about this being my last update. I have to do a large thank you letter and another Good, Bad and the Ugly. Both of which I hope will clear my head a bit.
|Sabaku Sushi made a Remission roll for me
In the end I can not tell all of you how much you have meant to me. I am so so so appreciative of the many people around me and their amazing kindness. Yes this new drug saved my life from the scientificside of things but I can tell you there would be no reason to take it if it was not for my community, friends and family. In the past three days I have been applauded and hugged so many times and by so many people. It truly is wonderful this life I live, yes live.
I have mentioned I am not religious though I am spiritual. I really believe that all of your prayers, energy and love help get me through all this.
Now I am going to try and reorganize my life and live. And live…And be the best person I can be, for I truly have a second chance.