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.

#9

I began my ninth systemic infusion today. As I got situated, I noticed a guy a few years younger than me receiving an infusion. I looked at him, started laughing, and told him I was supposed to be the youngest guy there and he was messing up my scene. We both started laughing.  It's just so strange seeing someone close to my age dealing with cancer. Sadly, we all know there are plenty of people of all ages managing a cancer diagnosis. It's just that I'm used to hanging out in the infusion labs and joking around with people 20 years older than me. So this fella and I talked for a bit and essentially agreed how there isn't much else to do but just go forward with it and live the lives we've got.


I won't have my boy this Saturday as I normally do. He'll be with his Mom. Saturdays that follow an infusion have become my worst days. I miss him like hell on the nights he's not with me, but it really doesn't serve either of us when I'm so fatigued and in pain. Fortunately after this infusion, I only have three more systemic infusions scheduled, plus one pump infusion. That's only four more Saturday's I won't see him within a ten week window. It will pass by before I know it.

And then, should scans and blood work come back negative, there will be no more anticipation of the coming chemo sickness. Again there's just about no nausea which is a blessing. And it could be worse. I know people in a lot worse shape than I am. I'm healthy and strong with no detectable cancer in my body. I'm just getting knocked around pretty good every couple of weeks. I believe June 6th will be my final treatment. And I'm sure as hell ready for that.

All Clear!

On Wednesday April 4th, I had another series of appointments at MSKCC or as I now like to call it a day at the spa (thank you Brad).

I had a morning CT scan - chest/abdomen/pelvis - followed by blood work and a visit with Dr. Kemeny and her wonderful staff (no sarcasm there - they're a great staff). My CT scan results were all negative and my blood work looked good, so I was eligible for and received another liver pump chemo treatment. Great news!!!

And honestly, I had no idea how concerned I was about my scan results until I had received the good news, walked into the waiting room, saw my friend, and threw my fists into the air and smiling from ear to ear. You have to understand this is not my standard response. Whenever I received scans during my first treatment, for the Rectal Cancer, I had some concerns, but as time went on I became more and more confident I had nothing to worry about. They would say, "Good news Mr. Scholl. Your scans came back clean. You have nothing to worry about for another three months." And I would politely smile while I thought to myself, "I have nothing to worry about. This is my first and last cancer diagnosis." But now that I have had this recurrence, my confidence has been shaken.

I mean, I'm sure as hell not going to stop living. I love my life, even with all this divorce nonsense (little judgment there...). Sure my circumstances are not ideal, but I have my boy, my family & friends, music, Life Coaching to return to, and all the things I love to do. And as my friend's very inspiring father, a three time cancer survivor says, you play the cards your dealt. That's it. I may whip 'em across the room every once in a while, scream my face off and imagine doing things that would ultimately not serve me, but then I'll always go pick them back up and presence myself to deep gratitude, for the privilege of still being in the game.

So yeah, I threw my fists into the air  and beamed a huge smile from ear to ear. I chose to not yell. Like me when I was there at MSKCC four years ago with my wife and son, during this most recent visit there was a family there across the room from us - husband & wife with a baby in a stroller. I'll keep my celebrating to a minimum while their life is very likely being turned upside down. On that day four years ago, a cheering fool dancing around in cowboy boots in the scariest waiting room I'd ever been in would not have made any sense to me. So, once I could finally lower my arms, I grabbed my CD, the only copy I had in my bag, and gave a signed copy to my doc, who wanted one because she likes country music. The other staff will get theirs on May 9th, should my blood work make me eligible and fortunate enough for another trip down to MSKCC for another pump treatment.

That evening, we went to Tamany Hall, a club on the Lower East Side, to see a friend from home (whom I haven't seen in years) who manages the place, and to listen to some rockabilly bands. Some of those cats were passionate performers and damn good singers. It felt so good to be there. And the stage was looking pretty comfortable. Perhaps I'll have to try it out sometime in the near future.

Three-Quarters of the Way There

I just began another chemo infusion this morning. As with each systemic treatment, I was sent home with a battery operated pump on a continuous infusion through Friday afternoon at 2PM at which point it will be disconnected, as it always is. So at that point, I will have completed my eighth infusion, which has me two-thirds of the way through my treatment! I'm very happy about this. As I've said previously, the emotional side-effects of this treatment have been surprisingly difficult, to say the least. Of course this doesn't exactly come as a surprise. Life has handed me a lot in the past year-and-a-half. I don't know what to do with it all, although I'm clear I will find my way ... in time.

A few areas of my life have been pretty incredible lately. I am very grateful for all the love in my life. And for the gift of music and the privilege to have it as a form of self-expression. At a personal level, my song writing exists as a conduit through which I release my thoughts, fears, passion, love, etc. Which results in one more part of myself no longer bottled up, unexpressed, circling around in my mind. Well, for the most part... Then there are those tunes that once I go public with them, there's no turning back. Those stay in my head for a while I suppose. But ultimately, they free my mind as well. And I can use a whole lot of that right now.

My friend Dustin always says something along the lines of, "What do you need for a good song? A few good chords and the truth!" That's my music in a nutshell. And when I'm lucky, those who listen can relate because they feel it too. Not to mention, performing with some damn fine musicians sure as hell makes for a far richer experience.

And in the mean time, if this round of treatment is anything like the previous ones, I'm in for a hell of a ride for the next five days or so. Lately I've felt like Luke Skywalker training with Yoda in the Dagobah System when he comes face to face with himself.

So please send some love my way on Friday and Saturday when all the side-effects - mental, physical, spiritual, emotional - start jockeying for position to whoop my ass. I'll update you on the winners. xoxo

Depressed, Hopeless & Angry

I'm surprised it's been 14 days since my last post, but now that I think about it, it's been 21 days since my last systemic chemo infusion, so there hasn't been too much to say.

What's at the forefront of my mind today is the power this chemo drug, Folfox, has over my emotions. With each systemic chemo infusion of Folfox, at some point I feel depressed, hopeless and angry. It has happened following every single systemic infusion since this treatment cycle began last November (the pump chemo has yet to have that effect). This time it showed up on Saturday March 17th and lasted through Sunday the 18th.

While the boy and I had dinner, watched a movie, then got ready for bed, I experienced a background of hopelessness. Not with him of course. I still laughed with him at all of his silliness and jokes. And we had a great time reading stories before bed. But the background thinking never ceased. It just wouldn't quit. After he was asleep, I immediately put on my headphones and did a hypnotherapy session and after it was complete, the negativity and hopelessness were gone and I felt good about my treatment and grateful for my life. On Sunday, we visited friends. The boy played with the kids and I watched basketball with friends, noticing these miserable thoughts as they passed through my head. Then when we got home and my little man was asleep, I did another hypnotherapy session and got back on track again. I did a third one early this afternoon.

I guess what amazes me is a) how I can always count on the depression and hopelessness to show up after a systemic chemotherapy infusion - guaranteed, and b) how intense it is. If a person were to show up and speak to me the way my thoughts show up at these times, I would be shocked at how ruthless and unkind the person was. And what equally amazes me is how effective the hypnotherapy is at represencing me to who I truly am; to my highest self; to the awareness that life is a gift and an opportunity to find love & gratitude for all things. And those are extraordinary moments.

And I do mean moments. Because it was an hour after my hypnotherapy on Monday that I was at the Department of Motor Vehicles, feeling very frustrated because after 3:30 PM, they don't provide the services I was in need of. Aaaaaaaahhhhhh! Yes, in the moment, I was a little frustrated. Hypnotherapy didn't turn me into an angel...at least not yet!

Fortunately, I went out to my car and just sat quietly. After about 10 minutes, I went back in and asked the person at the information desk if she could review my documents and make sure I had everything in order so when I came back on Tuesday, I would at least be prepared to complete everything and not have to go home and retrieve additional documentation. She happened to be in charge of the office and not only confirmed that I had the proper documents, but then she went ahead and processed all my info and handed me off to a cashier who completed the transaction.

Well, I chalk that up to the hypnotherapy, that is, my choice to just sit quietly and not go anywhere. I'd normally say that kind of inclination - to stop reacting and just sit quietly - was a result of what my morning meditation brings me, because it's definitely not my default reaction when things aren't going my way. But on a Monday morning coming off of a chemo infusion, my morning meditation is more hysterical than anything else. My minds just racing away judging and criticizing faster than I can keep up with. In fact, I can barely even sit still with all that chaos going on in my mind. It's like trying to meditate while someone's sitting next to me watching a battle scene from Platoon! Hahahahaha! So, again, I am grateful for the moments of gratitude and happiness I experience as a result of the hypnotherapy sessions which I'm clear I have been blessed to have in my life right now.


And in other news, Bert Scholl & Friends will be performing this Friday March 23rd at O'Toole's in Auburn. A little something I've been itching for to say the least!

With Deep Gratitude

It is with deep gratitude that I've had the privilege of removing the solicitation from the end of my Write the Next Verse video. (Click here to view the video). Now the purpose of the video is strictly humor. Please share it with whomever you think will get a good laugh!

Click here to read a letter of gratitude at http://BertScholl.com

Pump Chemo Complete

 Today's blood work revealed the same results as Monday's - Alkaline Phosphotase was low enough for me to do liver pump chemo. The only difference is that Dr. Kemeny reduced the dose. On November 30th I received 208 mg of Floxuridine. Today I received 52 mg of Floxuridine. The hope is that my liver will respond better to the lower dose and allow for more pump chemo treatments.

The only disappointment is the steroid Decadron (aka Dexamethazone) is included in the cocktail. I have had Decadron in the pump for the last month and I definitely feel it. I always feel a little edgy, I notice myself feeling less patient, and there's a numbness I feel around my teeth. I 'm really hoping that when the pump is refilled in two weeks, that Dr. Kemeny doesn't recommend more Decadron. I'm really over not feeling myself. And I'll do whatever there is to do that will allow for more liver pump infusions.

And yet there is another bonus to the pump chemo which is that I get to wait two more weeks until my next systemic chemo treatment which is a total of three weeks since my last treatment. It's nice to have a little break.