Friday, March 28, 2008 7:53 AM, CDT

Hello all,
It’s been over a month since last I wrote so of course it’s in two parts.
Part I
Things have been good. I’ve had two more treatments in the past six weeks. The side effects haven’t been too bad. I’ve had some serious exhaustion and a little bit of nausea but nothing I can’t deal with. The neuropathy continues to get worse. The neuropathy is the cumulative side effect that bugs me the most. If the weather could just get a little warmer it wouldn’t be so bad. My fingers have had a vague since of numbness since last year and that continues. I have three more treatments to go and I’m hoping to God that they’re working.
Right now I’m 13 months post-diagnosis. For the most part I’m doing well. Overall, I feel good about the last 13 months. I was able to beat back this disease and remained in remission for five months. However, the fact that it returned leaves me wondering if I’m on borrowed time.
I haven’t had the opportunity to meet with Dr. Walsh in these several weeks but Greg and I did get to see Dr. Enzinger at Dana Farber on Tuesday. Dr. Enzinger is the one who drew his line in the sand and said my cancer was colon cancer and recommended the FolFox protocol. Well, I can’t say our visit with him was uplifting. In his defense he only had write ups of my recent scans to read vs. the actual PET Scans to look at (that’s totally my fault—I dropped the ball on that one) and it was only the second time he has ever met me. While he was pleased with my progress he was also concerned that the cancer came back while I was on maintenance chemo. He also was quite frank when he told me that while a complete cure would be great, it’s also completely improbable. Apparently colon cancer is extremely resilient and he believes I’ll eventually be dealing with a resistant disease (meaning it will cease responding to chemo). He just hopes there will be other drugs by that time that might work for me.
He also mentioned that the Oxaliplatin will probably not work as well this time and it might not work at all. Dr. Enzinger thinks I should have a scan soon to be sure it’s working. This is a different than Dr. Walsh who wants to wait for six full rounds of chemo before he gives me a scan.
I was crushed. And devastated. And sad. And scared. Mostly I’m scared. Thoughts of my immortality have flooded my days. And although I’m devastated with the thought of leaving my kids too early I’m also scared out of my mind about dying. I’m afraid it’s going to hurt and I’m going to suffer and it’s going to be long and drawn out and just plain horrible. I can’t get these thoughts out of my head.
Dr. Walsh has said all of these things before: colon cancer is extremely resilient, he’s not sure he can cure me with the drugs he has available and hopes he can keep me alive long enough for other drugs to come on the market. However, I have such a nice rapport with him that it comes out differently when he says it. Greg suggested I ask Dr. Walsh for a scan sooner than six rounds. Other friends have echoed those same ideas. Dr. Walsh has never wanted me to wait six rounds of chemo before a scan. Last year I had a CT scan every three treatments—without fail. Dr. Walsh wanted to watch my progress extremely closely. So why wait six rounds? Should I ask for a scan sooner?
Why does he want to wait six rounds? I believe he is cautious that the Oxaliplatin might not work as strongly or as quickly as it did last year. And he’s afraid if he scans me too soon then he might get the impression that it’s not working. And once he’s crossed Oxaliplatin off the list, they consider it no longer an option as a drug for me. But if he waits for six rounds of treatment, he will know without a doubt whether it’s working or not.
I believe Dr. Walsh is operating on science, experience, intuition and gut feelings. I also believe in Dr. Walsh. I trust Dr. Walsh. I truly believe he has a vested interest in helping me. He’d love to cure me. But if he can’t, he wants to give every drug its absolute best shot before he decides we’re not going to use it anymore.
He’s giving Oxaliplatin a chance. I’m giving Dr. Walsh a chance. I’ll wait the six rounds before I have another scan. Some of you may think I’m foolish to waste time on a treatment that isn’t working. But, if it is working wouldn’t it be a shame to give up on it too soon?
Right now I’m a week behind in treatment. I should have four rounds under my belt but when I went on Monday they were triple booked in the infusion area. My chemo was scheduled for 10:00 am and there was a good chance that I wouldn’t get into a chair to begin treatment until 2:00. So I asked to come back next week. So Round 4 will begin on Monday, March 31. My counts have been good so my body is taking the chemo well. I don’t need any shots for red blood cell counts or shots for platelets. I’m doing well. And I feel well. I just hope my body is doing its best to heal on the inside.
On a lighter note:
I’ve posted some pictures of my fanny pack. Maybe I’ll have Greg take a picture of me in my fanny pack for the next post. Greg suggested I put the pencil in the picture for reference. Have I mentioned how much I hate my fanny pack? I mean the fact that it’s keeping me alive makes me very appreciative of the fanny pack. But the annoyance of it usually has me swearing at it and calling it all kinds of names! J
Katie lost her front tooth and it’s so cute. She also got her ears pierced. Although I had to wait until I was 12, I went ahead and allowed her to do it even if she’s only seven. Apparently I’m not as strict as my mother! She and Greg have a Father/Daughter dance this Saturday. I’ll be sure to post some pictures.