Twenty Weeks Post-Chemo

I've received messages from people currently under treatment for similar diagnoses as mine, so I thought I'd provide an update twenty weeks out from my last FOLFOX chemotherapy treatment.

• FOL– Folinic acid (leucovorin)
• F – Fluorouracil (5-FU)
• OX – Oxaliplatin (Eloxatin)

Side note: Oxaliplatin was removed from my prescription for treatments 11 & 12, due to the continued neuropathy.

The fatigue is still significant. If I try to go without at least eight hours of sleep, there's no chance I'll make it through my day without being exhausted. If I do get eight of sleep, I still even then feel exhausted by the end of the day. In any given moment I may have lots of energy, feeling and appearing to be fine, but it feels like I still have a long way to go.

The neuropathy in my hands & feet is still quite significant. I feel very little in my finger tips and the skin feels very tight and tingles to the touch. The soles of my feet feel numb and tingle all the time. When I walk or stand, my feet feel like I standing on round rocks covered with cotton balls. To walk and stand, feels very strange.

Also, my alkaline phosphate count is still higher than normal. This would go up whenever I received Floxuridine (the liver pump chemo). However, I am not experiencing side-effects from the count being higher. I'm just being kind to my liver as it heals.


On a personal note, I no longer feel like the person I was two years ago. The person I see in the mirror looks strange at times. And when I'm in a lot of emotional pain, as I am from time to time, it truly feels like I am dreaming. I have to remind myself that people will not stop behaving in ways that occur to me as selfish or unkind, simply because of my circumstances. People's humanness continues. We are all still managing our lives, to the best of our ability, whether it actually works or not.

So, my life looks very little like it did two years ago. Completely rebuilding my life while also undergoing a huge surgery, then seven months of chemotherapy, has had a powerful impact on me. I am definitely far more passionate than I have ever been, yet I no longer have much tolerance for people's angry outbursts. And that has a lot to do with how I still feel quite "raw" from the last two years. My nerves still feel exposed. People yelling and/or  being unkind when they are angry used to be something I tolerated. Something I considered acceptable if within reason. Not anymore. Of course I still get upset now and again. I don't raise my voice much. If necessary, I prefer to just end a dialogue at this point. Selfish...maybe. But with the possibility of limited physical existence, self-preservation, emotionally & physically, is a higher priority to me than it's ever been. I do my best to be good. Maybe not always nice, but good.

And now I'm a single father, two time cancer survivor, scraping along financially, with a high probability of recurrence. I actually feel quite 'single' after that mouthful. I once told a buddy, when I was in the thick of it all, I should start a dating site for people whose lives are train wrecks. But the criteria would have to be "as bad as Bert's life or worse." Can you imagine some of those profiles?!?!?! Ha-ha-ha! We laughed hard playing off of that one for a while. Fortunately some of the wreckage in my life has been tidied up a bit. At least the cancer appears to be gone. And in all honesty, my prayers are with anyone who is in a terrible situation. I laugh at my situation. No one elses.

Plus, I love plenty about my life. It's just some of the circumstances I prefer to do without. But don't we all.

On that note, people will sometimes try to play down the reality of my situation and say, "Anyone could get hit by a bus and die tomorrow." But a wonderful friend of mine with a hell of a cancer diagnosis responded to that by saying, "True we can all get hit by a bus tomorrow and die, but the buses in my neighborhood drive really fast and there's LOTS of 'em!" I thought that was an hysterical analogy. Great image, too!

On a good note, I love the kids more than ever, my music provides me endless joy, I'm learning many new things, and my friends are more dear to me than ever. A lot of other things are much different than they were a couple of years ago. And some things very much remain the same.

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!