I got my chemo schedule yesterday, and I start on Thursday. Very anxious to get going! Not many chances in life to start voluntarily poisoning yourself. Unless you count college.
If you're interested, this is my protocol: http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/folfirinox
So with treatment starting soon, I will start telling more of my friends and family about it all.
Saturday, May 30, 2015
Thursday, May 28, 2015
Tuesday we spent all day at Hopkins. First we met with the department fellow, who explained a lot about the cancer and what the likely process would be to treat and remove it. Then after a long and nervous wait, they had me do a new CT scan - the old one was very poor quality. Finally around 4:00 we were able to do what we had come for: meet with the doctors who manage chemo and radiation. It was a very long, nerve-wracking day.
They are recommending chemo first. A round of chemo is four dosages, with each one done two weeks apart. A dosage requires 48 hours. So, each round requires six weeks from start to finish to administer all four doses. After each round I will go back for tests, scans, and evaluations. Most patients require two rounds, though some get only one and some require three.
Assuming things go as hoped, I would then do radiation therapy. There are two possible protocols for that; one takes five weeks, the other two months if I remember correctly. And if the radiation goes as planned, I would then have surgery to remove the tumor, maybe around a late Fall time frame.
The doctors clearly know what they are doing, as they are specialists in this cancer and treat dozens of patients. I feel confident that I will receive care and expertise equal to any available in the world. It is also clear, though, that the course of the treatment is far from certain, and there are many possible challenges along the way. I know it's going to be very difficult, but I am ready to go.
Today we met with the doctor and nurses who will supervise the chemotherapy, here in Fairfax. They explained the process in detail, including the various drugs and how they will be administered. Then we met with the nurse who manages all of the scheduling and coordination. She set me up to have an infusion port implanted in my chest on Monday, and to take the two hour training class on Tuesday. We should get the schedule for the first round of chemo tomorrow, and we expect to start later next week or the week after that (the week of June 8th). So, with luck my treatment will begin in about a week.
It's all still overwhelming, I can't begin to describe the emotions and feelings. I'm grateful to have friends, family, and great doctors who give me the hope I'll need to get through it all.
They are recommending chemo first. A round of chemo is four dosages, with each one done two weeks apart. A dosage requires 48 hours. So, each round requires six weeks from start to finish to administer all four doses. After each round I will go back for tests, scans, and evaluations. Most patients require two rounds, though some get only one and some require three.
Assuming things go as hoped, I would then do radiation therapy. There are two possible protocols for that; one takes five weeks, the other two months if I remember correctly. And if the radiation goes as planned, I would then have surgery to remove the tumor, maybe around a late Fall time frame.
The doctors clearly know what they are doing, as they are specialists in this cancer and treat dozens of patients. I feel confident that I will receive care and expertise equal to any available in the world. It is also clear, though, that the course of the treatment is far from certain, and there are many possible challenges along the way. I know it's going to be very difficult, but I am ready to go.
Today we met with the doctor and nurses who will supervise the chemotherapy, here in Fairfax. They explained the process in detail, including the various drugs and how they will be administered. Then we met with the nurse who manages all of the scheduling and coordination. She set me up to have an infusion port implanted in my chest on Monday, and to take the two hour training class on Tuesday. We should get the schedule for the first round of chemo tomorrow, and we expect to start later next week or the week after that (the week of June 8th). So, with luck my treatment will begin in about a week.
It's all still overwhelming, I can't begin to describe the emotions and feelings. I'm grateful to have friends, family, and great doctors who give me the hope I'll need to get through it all.
Monday, May 18, 2015
So Allison got on the phone this morning, and four hours and how many phone calls (?) later, I am now scheduled for a full day at Hopkins next Tuesday for chemo and radiation evaluations. Apparently they will develop my treatment recommendations from then. Allison has been so great at taking over all the logistics and research for me; I would be terrible at it, and no doubt my emotions would get in the way. I know no one could be better at navigating these uncharted waters than she!
Meanwhile I was able to play nine holes of golf this morning, and I played about as well as I ever have, shooting a 41. I've gone from not even being able to get the ball off the ground and almost giving up the game a week ago, to playing really well. Just because I found the two adjustments I needed. What a crazy game... and if you're thinking, why the hell is he playing golf? I sort of feel the same way - though what am I supposed to do? Sit around and feel sorry for myself? While I'm playing I don't even notice my stomach hurting.
I do love being on the golf course. If there is a heaven, and I'm in no hurry to find out, I hope the first thing I hear when I get there is "let's play 36 today".
Meanwhile I was able to play nine holes of golf this morning, and I played about as well as I ever have, shooting a 41. I've gone from not even being able to get the ball off the ground and almost giving up the game a week ago, to playing really well. Just because I found the two adjustments I needed. What a crazy game... and if you're thinking, why the hell is he playing golf? I sort of feel the same way - though what am I supposed to do? Sit around and feel sorry for myself? While I'm playing I don't even notice my stomach hurting.
I do love being on the golf course. If there is a heaven, and I'm in no hurry to find out, I hope the first thing I hear when I get there is "let's play 36 today".
Saturday, May 16, 2015
Rick's Journey
I have created this blog to record updates and changes to my medical condition. I also plan to post occasional thoughts and feelings that I have along the way.
First the basic facts. I was diagnosed last Thursday with a tumor in my abdomen. There are obviously more details than that, but for now I choose to keep most of them private. I will say that it is a very serious condition; the tumor is over 2 centimeters in diameter, and in an unfortunate location. The good news is that it has not spread to any other areas.
I found out yesterday that Johns Hopkins is recommending me for treatment. The treatment will be to try to shrink the tumor by radiation and chemotherapy and then remove it by surgery. I have an appointment on June 2nd to discuss the treatment details, but until then all I can do is speculate what they will be,
My intention is to keep most of my thoughts and feelings out of this blog, and stick mostly to facts and updates. Yet I am sure that my readers will understand that the past week, in which we were given a stream of news that grew bleaker each day, has been a nightmare of unprecedented scope for me and for Allison. My life has taken on a color I could never have imagined. It was only with yesterday's update that the first rays of hope appeared on the horizon. I am optimistic now that I will be able to beat this thing and resume my life.
One thing became very clear to me over the past week: that there are many, many people from my life who I love dearly, many of whom I have not seen or spoken to in way too long. I know now that I will want to see you to tell you how much you have meant to me, regardless of what happens from here. It will be the silver lining to this cloud that has come over my life.
First the basic facts. I was diagnosed last Thursday with a tumor in my abdomen. There are obviously more details than that, but for now I choose to keep most of them private. I will say that it is a very serious condition; the tumor is over 2 centimeters in diameter, and in an unfortunate location. The good news is that it has not spread to any other areas.
I found out yesterday that Johns Hopkins is recommending me for treatment. The treatment will be to try to shrink the tumor by radiation and chemotherapy and then remove it by surgery. I have an appointment on June 2nd to discuss the treatment details, but until then all I can do is speculate what they will be,
My intention is to keep most of my thoughts and feelings out of this blog, and stick mostly to facts and updates. Yet I am sure that my readers will understand that the past week, in which we were given a stream of news that grew bleaker each day, has been a nightmare of unprecedented scope for me and for Allison. My life has taken on a color I could never have imagined. It was only with yesterday's update that the first rays of hope appeared on the horizon. I am optimistic now that I will be able to beat this thing and resume my life.
One thing became very clear to me over the past week: that there are many, many people from my life who I love dearly, many of whom I have not seen or spoken to in way too long. I know now that I will want to see you to tell you how much you have meant to me, regardless of what happens from here. It will be the silver lining to this cloud that has come over my life.
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