One thing Steph and I keep a eye open for are any studies that may be right for me. They are testing drugs that specifically target genes. I have two over active, hence cancer genes, one is fairly common the other is not, rare like me. The research doctor at MSKCC started asking around and found a study in Boston. This just happened to be around the same time as the Stanley Cup play offs. See where I am going with this?
So, Steph and I hopped on a plane to Boston. Tickets taken care of by Mr. Jack Stanfield and his deep rooted friendships, thanks Jody. Lodging was an Uncle Fred connection, thanks Phil Casonetti. Great place to stay, Bricco Suites, if you’re ever in Boston. Trust me, this is what they mean when they say calling in a favor. So, I get the pleasure of escorting Stephanie to her second hockey game ever, a play off game. Having an ongoing bet with Pops we where rooting for the Bruins, the arena was on fire and the game was hard fought on both sides. Boston dominating most of the play, 17 seconds and counting Chicago pulls an upset for the home team! The Stanley Cup is won, and we are in awe! The air deflates the room and history is written, with a small side note… Steph and Shane were there.
Next morning off to the hospital to meet with a doctor who has a study focused on my particular mutations. Everything went great and I will stay in touch with them should the timing and my physical requirements all line up.
Boston was a nice city and we enjoyed it very much. Never needed a cab or car, just used the “T” as they call it. As they say, take the time to smell the flowers and listen to the birds. With our eyes and ears wide open we smelled the sweat on the rink and heard the skate blades shred the ice.
Steph and I can’t thank those enough who made this possible, a true once in a lifetime experience, if, like me your lucky!
The last couple of months have been a roller coaster to say the least. For those who have been checking in or reaching out, you never go unnoticed. I hope this explains a little…
Back in February my oncologist, Nancy Kemeny MD, decided to send me to meet with a surgeon to discuss potential surgery on my liver. After meeting with the surgeon we decided to go ahead and set up surgery for March. We had me go in for a PET scan. While meeting with my colorectal surgeon we realized there was some “activity” in my pelvic area and also did a biopsy on what we thought to be a hemorrhoid. As you may have guessed it turned out to be positive. This derailed the surgery and I we had to reassess our plan. It turns out I have a rare mutation of cancer and there happen to be a upcoming study for a drug that gets good results for my mutation. So, off to see another doctor. It was looking like I could get involved in this study only to be derailed once again because of a EKG QTc number being to high. Apparently there are very strict regulations from the FDA on these studies. During this time I was not doing treatment. Yes, no chemo for around a month. Man did that feel good!
As one can imagine I was very disappointed to be rejected for the study. Not only because of the potential of getting good results, but the idea of being on the crest of the wave is something I like the idea of, if not for me, for the future and others!
Last week I went back to chemo and today back in for a CAT. Feeling well actually other then the hell of a ride the last couple of months have been. As I said your love and support does not go unnoticed and I promise I am in good spirits and proud to have you all on my team.
P.S. I added a new video, hope you enjoy!
Sitting in chemo with some good news for the new year. Had a scan last week and everything is continuing to move in the right direction. Shrinkage in this case is good;) Hope everyone is well and happy in the new year. Working on more updates this year. This way I can keep you guys intrigued and coming back for more.
So, it is a new year and after this past one I am looking on word and up word. I wish all of you a productive and fulfilling new year to come. I thank you for your wishes and love you have shown me over this past year. Things have been moving in the right direction. Tumors are shrinking and numbers are good. I am actually on my way to a CAT scan as we speak, so to speak. I will give a update to you when I get my feed back.
Happy New Year and remember to be thankful for the many good things in everyday life.
Thought you guys might find this article from the NY Times informative. Please think outside the box when making your commitment to vote this election.
OK, I have been a little out of the loop! I think the best excuse is, I have been working on my well being. This illness can consume you and everything you are, if you let it. This is my reason to all of you that have been so kind and supportive to me. I don’t want it to own me and if I talk about it all the time, it does just that. Well I won’t let it!
I do, however, want to say to all of you how grateful I am for your love and support. I can’t imagine how hard it must be for those who are not as lucky as me to have such a wonderful support team. You guys rock and my appreciation goes beyond these words.
I have been getting stronger and gaining some weight. I am a whopping 142 lbs. I am happy with this for now. It would be nice if I could add about 10-15 lbs of muscle. That would really put me back to my fighting weight.
I am on a new chemo that is making my hair fall out, lame. It is still there for now but I might have to buzz the crown to avoid looking like the middle aged man, that I am, trying too hard. I have always wanted to do the buzz thing but didn’t have the balls. Well who would know that the cancer would cause me to grow a set.
I have been starting to pick up some work again. It is great for me all though I am a little held back and taking it slow due to my ileostomy. For those that don’t know, here is a link to what that is.
I have one for the time being, knock on wood, until I have the next surgery. The plan is to get the liver tumors to the point where we can operate and leave enough liver for me to survive on. There are two bigger tumors and a lot of small lesions. At this point inoperable. I am continuing to have two systemic chemos every other week. One takes about 30 minutes at the hospital and the other is the one I go home with in a bottle and it last for 72 hours. In addition, I have the internal pump that my doctor is known for. We implanted that when the rectal tumor was removed. This we fill up every other week, as well, and it goes directly to the liver over the next two weeks. The good thing about this one is there are next to no side effects, at least that I feel.
I think this covers it for now. I can’t restate enough how much all the support means to me. I know I have slowed down on my updates but I haven’t stopped thinking about how lucky I am to have you guys on my side.