FREEDOM!!!!!!!!!!!!!!!!

I've scheduled my "stoma correction" procedure for December 5th. I don't think it's called a surgery because no body cavities are being opened and no muscles will be cut in half. Instead, my large intestine will be cut away from the skin of my abdomen, it will be pulled out just enough so it no longer folds (it kind of does an 'S' curve just before it reaches the stoma a.k.a. the place it exits my body), it will then be "trimmed" and then it will be restitched to my abdominal skin in the same place it was before.

Dr. Cagir says he may use some cadaver tissue to cover the area where the large intestine is herniating to keep it from poking out anymore. I asked him if I would have nightmares from part of a dead body being inside of me. His nurse practitioner said, "No." I then said, "Not from the tissue itself but from my brain freaking out about dead people being inside me." She shrugged and said I'd be fine. A terrible four-letter word, i.e., "Everything is going to be just fine." I can hear the violin shrieks from the shower scene in Psycho. Hell, I have vivid dreams when I buy a new fish for the aquarium. I can't wait to see what's in store if I do get the cadaver tissue. Maybe I'll be able to channel dead people after this. That would be a cool party trick.

The procedure may result in an overnight stay or it may be an outpatient procedure. I'm voting for outpatient. To tell you the truth, I'm hoping Dr. Cagir will agree to just use a local anesthetic. And then maybe I can watch the procedure perhaps with the help of a mirror. But after watching Braveheart, I'm kind of wondering if intestine being pulled out actually hurts like the movie suggests thus not allowing for only a local. Then again, if all goes well, only a very small portion of my intestine will be...extracted. If he does let me watch the procedure, I plan to quietly feign-scream, "FREEDOM!!!!!!!!!!!!!!!!!" as the inch or two of intestine is pulled out. It's always good to make people laugh when they're gently pulling out an organ.

So, I return to Robert Packer Hospital once again. Hopefully the recovery won't be much of anything. Crossing my fingers (and not my intestine).

The Great Life Cook Book

I want to share with you The Great Life Cook Book, hands down the best macrobiotic cookbook I have ever laid eyes upon.

In an earlier time in my life, I used at least five different macrobiotic cookbooks and did my best to maintain a macrobiotic diet. In these cookbooks I found recipes I enjoyed, but the design of these cookbooks were basic black & white text, with an occasional hand drawn image. Keep in mind, I was completely grateful for these cookbooks because they were quite informative. Plus, they were given to me by my aunt who was passionate about the incredible health benefits and she taught me weekly (every Tuesday afternoon) all about the essentials of macrobiotic cooking.

Unlike the The Great Life Cook Book, when I excitedly shared my five...black & white...macrobiotic cookbooks...with friends who knew little or nothing of macrobiotics, they flipped through the pages pretty quickly, then handed them back to me and said, "interesting," with a look that said anything but that. It was as if I shared beautiful music with a friend by handing them a textbook about it. It didn't penetrate. And that was how I looked at those five books when I first saw them. But again, I had my aunt lit up and inspired about them, which lit me up and had me dig deep into them for the treasures they held. Plus, I knew the cookbooks were put together by authors and cooks who were highly committed to macrobiotics, and that made a difference for me.

However, with The Great Life Cook Book, you immediately find yourself flipping through a lovely, visual invitation to discover macrobiotics or expand what you already know about it. There are pictures on every page, so you know what the meal will look like, and Hey! I need pictures. When I'm looking for a good recipe, I'm not studying. I'm discovering. I want to be inspired to cook something delicious. And that's what you get with The Great Life Cook Book. It's filled with beautiful images of mouthwatering meals, plus it's designed seasonally so you can use recipes that are made up if the current season's harvest. Click this link to go directly to the The Great Life Cook Book website.


Disclaimer: Lewis & Priscilla are my friends, but I do not receive a free macrobiotic toaster with every cookbook sold!!

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.

Perhaps a Litttle Procrastination

On Thursday I had a CT scan of the abdomen in order to determine the source of an issue I've been having with my large intestine. My doctor found that my intestine kind of folds just before it exits my abdomen, which keeps things from moving as well as one would like. The options to correct it are
1) have surgery on the surface of my abdomen to straighten out the intestine (either outpatient surgery or an overnight stay)
2) have my abdominal cavity opened up and straighten things out from the inside (five hour surgery)
3) to do nothing and deal with it.

Opening my abdominal cavity, is definitely out of the question. I've had my abdomen opened enough for one life time - perhaps two. And not dealing with it doesn't work for me. So, I sit here thinking to myself, "I should think about this for a while," as if thinking about it for a while is actually going to change anything. Maybe I just feel better not rushing into it, which seems so silly but at the same time, it works for me right now.

Moving Forward

Last week I had a colonoscopy and it was clear. I kind of expected it to be clear since I've received regular scans for quite a while now. Yet it was still nice to hear. I honestly don't know how long it will be before I am excited about being told I'm in the clear. As I've said before, my confidence was rattled when I was diagnosed with this recurrence. And my emotional state over the many months is still not something I recognize as familiar.

Over the last few months I've been up & down, going from being really blue about my health and having to rebuild my life, to feeling good and creating the life I want to live. The blues seem to be less frequent, but they still hit me pretty hard when they come. Honestly, I thought I'd be in a better space by now, but I'm not and I guess that's okay. I still have a lot of fun doing the things I love. I guess it just takes more for me to get motivated lately. It's obviously not a permanent outlook, and for that reason, I look forward to feeling more and more myself as time goes on.

Another part of it has to do with my doctors and nurses having told me, now that I've had a Stage IV diagnosis, a recurrence sometime in the future is highly probable. Of course I like to focus on the possibility of my being in the healthy, cancer-free side of that probability. Somebody's gotta be. And yet I am not going to pretend I don't "look over my shoulder" and wonder what's coming down the pike. I definitely do. I am still quite rattled from the recurrence not to mention all that preceded it. I really want to be past it all, which I suppose is a good sign. And perhaps I've forgotten how hard it all was. And maybe the impact is more than I anticipated.

So, I look around this apartment which we've been in since May 15th and continue to try to think of it as home. It is "home" in the sense that it's where I return for sanctuary from "the rest of the world," but something is missing. Cuddling with my boy on the couch and watching a movie this evening made the place feel a bit like home. Perhaps once the snow sets in, we'll feel like we're in our little den. I've also been thinking about having a house warming party. It didn't interest me upon moving in since I was receiving chemotherapy and waiting for the scan results. Perhaps it's time.

Good News - Negative Scan

I happy to say my scan came back negative and I feel a sense of relief. The knot of tension has been unwinding for the last couple days. Perhaps I will be joyful about it once many more come back that way. Next scan December 17th.

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.