Quarterly Scan Tomorrow

I'm going in for my quarterly scan tomorrow. Fortunately at Memorial Sloan-Kettering, we get the results presented to us in a matter of hours, which I very much appreciate because I am definitely a bit anxious to hear the results.

Second Time Through

So it's been almost six weeks since I completed my chemotherapy treatment and was told the cancer is gone. It was June 25th that I was given this great news and on that day I was incredibly happy. But then the days that followed were very different. I found myself feeling down & depressed.

Lately, when people stop me and ask how I'm doing, and I say "I'm ok," some folks are surprised, which is certainly understandable. The most accurate way I've found to describe how is feel is to imagine what it might have been like to have been rescued from the Titanic as it was sinking, delivered safely to shore and told to "Take care" & "Good luck." "Now it's back to business." So I stare at the people in the world as they go through their daily routines, wondering where I begin. Like if someone you love has passed away and you watch people who casually stroll down the street and enjoy their day, and you wonder, "How can they be so happy when I'm in so much pain?" It's not logical, but it's not uncommon either.

So, this second time through I'm not so quick to jump for joy. And in the moments I do feel somewhat confident about my health, I look at what's happened in my life in the last couple of years and I hear, "We now return you to our regularly scheduled programming." That program being the other pains in my life which I couldn't give a whole lot of attention to, because I was too busy trying to escape death for a second time.

It's not like other people don't have it worse than me. There's always someone who has it worse. I see people now and again and think to myself, I'll take what I've got because I sure as hell don't want what they've got. And yet, each person's hardest thing, is our hardest thing.

Music was one of the key pieces that lifted my spirits throughout my treatment and before that, it lifted me through the pain of my wife's sudden departure. But lately, I feel like I'm on a short hiatus from the performance part of music. I think we'll do a show in September up in the Prison City. Perhaps by then I'll feel somewhat myself. And in the mean time I still write what ever songs show up for me. Not exactly the happiest songs in the world. But I did recently write an upbeat song. And it's just about done. It just happens to be a sad upbeat song. Ha-ha! One step at a time I guess. And in the interim, I'm going to wander aimlessly for a while. Everything still seems a bit strange to me.

Preventing the growth of blood vessels that feed a tumor

Of all the conversations I've heard connecting what we eat to the prevention and treatment of cancer, this one from Dr. William Li, of the Angiogenesis Foundation, which points to stopping the growth of blood vessels that feed cancer, seems pretty compelling.

Thanks Maria!

Click on the image below to watch the TED Talk.

In the Clear or Perhaps Not So Clear

On Monday June 25th I had a post-treatment scan and the results were NEGATIVE! No sign of cancer, so no more treatment and the next scan is in three months.

I am greatly relieved. The day of the good news I was moved to tears, I was so overjoyed. And a couple of days later I was actually feeling depressed at the idea of returning to "normal" life. And a day after that, being the recipient of a good coaching session, I was back to feeling as normal as one might expect to feel. It became clear to me that without being clear about the direction I am headed, the mind will wander and create its own version. And the mind left to it's own devices, is not always a good thing. Considering all the concerns I have, it helps to now have some pretty clear direction. So now I am back to figuring out how to be a single father, how to manage my disappointment about being one, as well as how to deal with what I can't control when my boy's not with me. So it's back to that and all the other day to day things there are to manage.

After the good news, the friend that joined me for the trip celebrated with me by taking me to a ballgame at Yankee Stadium. It felt good to be in a stadium (relatively) full of people excited and joyful. I can use as much of that as there is to go around.

Treatment Regimen Complete

Today is Wednesday June 6th and I'm about to begin my last scheduled chemotherapy infusion, #12 of 12. As always they will send me home with a battery operated pump continuously pumping 5-FU into my veins until Friday morning at which point the pump will be disconnected and the nurses will invite me to ring the bell, a final treatment ritual here at the Cayuga Medical Center.

It's nice to be looking at the possibility of no more chemotherapy after Friday. And needless to say, it has been a grueling seven months. While writing this entry, I've tried multiple times to express the pain I've experienced going through the unexpected and badly navigated ending of a marriage. And each time I deleted what I wrote and have instead left you to imagine it. It has not made this experience easier, that's for sure.


Well, I never finished this entry and it's now Friday and the pump stopped at noon today. Treatment #12 of 12 is complete. I was with three friends when it stopped. It was a great feeling to turn it off and announce my seven month chemo regimen is now COMPLETE.

So many thoughts going through my mind. Scan in NY on June 25th. Should it be negative no more chemo and another scan three months later in September. If it comes up negative I will begin treatment for the treatment, detoxifying my body from the chemo; not an easy process but very important. Chemo can cause cancer. I want it out if my system. It's done it's job. Fresh carrot & green juices, liver supplements, etc.

In the meantime, it's no more chemo until at least until June 25th and I feel greatly relieved.

Neuropathy

Within the last week, the neuropathy [numbness & tingling] in my hands and feet has intensified. It is strong in my fingertips and goes up my forearms. It's also strong on the soles of my feet. I walked to the Ithaca Festival this evening and I was having a hell of a time because how the neuropathy had my feet feeling so weird while I walked. It seems it's going to gets worse before it gets better.

My doc recommended 100 mg of Vitamin B-6 2x day, so that's what I've been taking. I sure hope it helps. This is a weird symptom and a little disconcerting as well.

A Change in Perspective

Has it really been a month since my last blog entry??? Wow! The boy and I just moved into our new place on Tuesday. Thank you to everyone who helped make this happen for us. Now that I think about it, this is what has kept me from posting anything. Diligently looking for a place in between chemo treatments then traveling to NYC less then a week before we moved. I have been incredibly busy.

Fortunately, I was able to receive a liver pump treatment on Wednesday May 9th, so my next systemic  chemo treatment is this Wednesday May 23rd. Even though Dr. Kemeny reduced my Oxaliplatin by 25% last time, the neuropathy in my hands and feet has continued, so the Oxaliplatin has been completely removed from my systemic treatments. I will now only receive 5-FU. When I asked how much nausea I should expect to experience, I was told there would likely be none. It ain't a walk in the park, but without it, the sickness is a hell of a lot easier to tolerate.

Following my meeting with Dr. Kemeny on the 9th, the nurse practitioner came in and explained how I will have a scan in June following my final treatment. At that point I told her that when the scan comes back negative, I would like the liver pump removed. She kind of smirked and then told me the reason they recommend keeping it in is because they have to clip the line to remove it. And once the line has been clipped, a clot forms and the pump can never be inserted into the artery again. "Okayyyyy," I said. "There goes that idea.."

Once my treatment was complete, my friend and I walked back to the car. As we walked, I looked at him and said, "Man, if I knew I could never have the liver pump again once it's removed, maybe I would have waited for if things got really bad." He gave me a look as if I had just spoken to him in a language he was completely unfamiliar with, combined with utter amazement that I was able to speak it. I half returned the look to him then realized what I had just said. "...maybe I should have waited until things got real bad." I immediately started laughing and said, "Keep it for two years? Perhaps not. Maybe I'll keep it for five. Or ten. Or maybe just leave it in for good!"

The minor downside to leaving it in is the saline refill required every six to eight weeks, possible adjustments to that schedule should I travel to a higher or lower elevation (because elevation changes effect the rate at which it pumps), and the possibility of infection since the pump is a foreign object. The rate at which it pumps is also effected by body temperature, so I am expected to avoid long hot baths. Come winter time, a hot soak in the tub is a must. I missed out this year, but this coming year I expect to take hot baths and have the saline refills scheduled accordingly. Perhaps if I agree to one 45 minute bath a week, they can adjust the solution accordingly. The longer they want it to last, the thicker the solution they prescribe.

So, I have two more systemic treatments and then I start treating myself for the treatment. Or to put it another way, it will be time to begin the process of detoxifying the chemotherapy from my body.