I Thought You Might Like to Know

I have not made an entry since Friday because I am in the midst of finding a balance with the medication I am taking. And I have been SO spacey, I haven't dared write anything in fear that it would make no sense at all! I think you'll hear more from me tomorrow. I'll be taking a lower dosage.

In the Midst of the Inquiry

In order to move forward, I have scheduled an appointment for March 31st with Dr. Burt Cagir - a Colo-rectal doctor at Guthrie Hospital in Sayre, PA. This is the surgeon I saw immediately following my diagnosis last year. I have seen three surgeons in the last year and if I have my choice, Burt Cagir will perform my surgery.

And by the way, No, my doctor rating is not based solely on how painlessly they do a digital exam. Although it was tempting considering that I only received one digital exam that didn't feel like the doctor got a running start in order to perform it!!!

Following my appointment with Dr. Cagir, I will meet with a local oncologist. Unfortunately, there are no in-network oncologists in the Ithaca area. The closest in-network oncologist is in Cortland, NY at the Cortland Regional Medical Center. This rather small hospital is about a half-an-hour away from our home. I was happy to discover that they do IMRT (Intensity Modulated Radiation Therapy) at the Cortland hospital. That's definitely a plus.

Once I have met with the surgeon and oncologist, I will make my decision about where my chemotherapy and radiation treatment will occur. In the mean time, I am deep in the midst of the inquiry.

The Other Side of the Coin

Since I shared last nights inspired thoughts inside of such uncertainty, I thought it best to share with you what hit Daniela and me today.

Between the hours that I completed my March 25th blog entry and right now, I've gotten some serious perspective about spending six weeks here. I fell asleep at 1 am. I then woke up due to pain at 1:30 am, 2:30 am, 3:30 am, 4:30 am & 5:30 am. Daniela rescheduled all my morning appointments for the afternoon and I slept until 11 am. Then when we got to the hospital, I was experiencing pain that was new to me - possibly a result of the tumor touching a nerve - possibly a result of me moving around from appointment to appointment for three days straight. I laid down on a couple different couches in a couple different lobbies while Daniela went to the cafeteria and got our lunch and then took a couple of my meetings for me while I continued to lay down, bringing the staff to me when necessary.

My point? Should this happen while I'm here for treatment at a time when I'm here solo, I would have to manage this myself. All the sitting and continued movement would not have worked. It would have made my pain even worse which would require narcotics to treat and I would have been even more mentally "foggy" than I was this afternoon. And Daniela will vouch for how "foggy" I was today.

I have a pretty strong constitution, yet the side effects I will experience from chemo & radiation are unpredictable and I have a concern about what it will look like if I am down here solo and the side effects do in fact hit me hard. Radiation can leave the skin feeling badly sunburned or worse, blistered. My current form of transport when significant walking is required is a wheel chair. And if I have to roll around sitting on a stinging behind so I can go to my appointments, go to the cafeteria at least twice a day as well as to and from the hotel sitting in the shuttle (I can lay in my car if I'm not driving)...add some fatigue from the treatment and some mental "fogginess" from the narcotics and that's a perfect recipe for misery.

I am clear neither situation is ideal and the only thing left for me to do is simply choose where I want to be and move forward. I anticipate making that choice relatively soon.

A Lot to Consider

Another good day. My radiologist highly recommended IMRT (Intensity Modulated Radiation Therapy). Click on the link to get a full description. The two cent version is that IMRT is a highly precise radiotherapy that is used to avoid causing unnecessary damage to cells anorgans d in the immediate area surrounding the tumor tissue. And thee's a lot of close organ proximity in the pelvis. I would receive chemotherapy in conjunction with the radiation to maximize the effectiveness of the radiation. The radiotherapy kills some cancer cells while only injuring others. The chemotherapy is designed to destroy the cells that are injured but not destroyed.

Currently, I am leaning toward receiving treatment here at the Eastern Regional Medical Center. Daniela and I have been talking all evening about his - going back and forth with the options. It would require me to be away from my family for six weeks and that would be difficult. Daniela is committed to being down here with me for two or three non-consecutive weeks - that will mean the world to me. And I'm lucky enough to know she wouldn't have it any other way. It will be a push to be gone that long, especially if the side effects are heavy, but what means a great deal to me is the phenomenal relationship the staff have to the patients and to one another.

The staff at CTCA are clear that a patients emotional health is as important as their physical health if the goal is to achieve the absolute maximum effectiveness with treatment. Do I feel strong enough to handle it in another environment, i.e., locally and at home? Absolutely. But to be treated in a facility where all aspects of my therapy are covered by one group of closely knit staff is a rare opportunity.

Then I must take into consideration that the oncological therapy could cause temporarily debilitating side effects such as serious skin irritation or significantly increased pain. There is also the possibility of permanently debilitating side effects. With that as a possibility, I like knowing that those who will treat me already have a rapport with one another, as well the same context from which they take on their commitment. It's just not common and from where I stand today, it seems like an incredible opportunity to maximize the effectiveness of my healing.

I had a CT scan this morning. An hour later I was meeting with my radiologist and reviewing the scan images on his computer. In my experience at the hospitals I have been to thus far, that kind of turn around time is unheard of. Usually CT scan results take days to receive. Yesterday my blood was drawn and hours later, the doctor was reviewing the results with me. If I have any kind of problem or the the doctors have any uncertainty about me, the tests are completed and the results are reviewed in hours, again with the entire team available to consult one another. Now I understand why people come here from hundreds of miles away. The service, like I said, it just phenomenal.

And, at home...having family, and the kind of community I am blessed with so close by is also a powerful strength. I have not made my decision yet. Tomorrow will provide more answers. And then I will have a few days - maybe a week - to make up my mind.

Eastern Regional Medical Center

Today was a long day, but quite eventful. It began with the standard administrative meeting and paperwork. Then I met with a an oncologist who presented us with the list of tests they require to complete their analysis. Those tests will be complete by the end of the day Tuesday.

Shortly following the oncology meeting, I met with a pain management practitioner who suggested a plan slightly different from my current, self-prescribed, "avoid all pain killers until the last minute" plan. He recommended I take on a proactive approach and commit to a regular schedule throughout the day, which could actually have me be pain-free every day. He also recommended I retire my sacred donut pillow. He shared a few rather unpleasant scenarios/problems the "out dated donut pillow" can cause. After he was done, I decided its time to upgrade to a Tempur-pedic form fitting pillow. He believes I could actually be sitting in a chair with no pain should I follow his two recommendations. At first I was a little skeptical about this meeting. However, I have to say it sounds like a plan worthy of my investment.

The most important part of our day - the part that had the two fo us laughing and joking as we took the shuttle ride home - was my final meeting with the surgeon. We left feeling hopeful. The surgeon believes it is a possibility for me to have resection surgery if the chemotherapy and radiation treatments shrink the tumor and create the necessary two centimeter gap between it and the sphincter muscle. To know the possibility is still present? It brought tears to my eyes. It's a possibility that inspires me a great deal.

As Daniela & I discussed this wonderful possibilty, we at organic curry tofu and vegan bean thread rolls (which were surprisingly absolutely delicious). For lunch we had fresh carrot juice (note: we scored more carrot juice in the late afternoon!), vegan organic lentil soup, organic vegetable sushi, organic fresh steamed broccoli and organic fresh-lemon snap peas. Delicious, vegan, organic and no out of pocket expense. It's all a part of being a patient. When ever my care-taker and I are in the hospital we pay nothing for fresh, delicious, organic food. Yeah, you can tell - I'm very impressed. And yes, they have organic meat & cheese for those who are interested.

Another perk for patients at the Easterrn Regional Medical Center is the free flights when I ever I have an appointment at the hospital. No that is not a type-o. And if that's not enough, they provide shuttle transportation to and from the airport, to your hotel and/or patient apartment (rented through the hosital) as well as the supermarket. Heck, they even provide evening driving tours of Philadelphia.

Fly me in, drive me to and fro, grace me with extraordinary service and then feed me all the organic food I care to eat??? This place seems almost unreal. Did I mention they have homeopathic practitioners who provide remedies to reduce radiaton and chemotherapy side effects? Yeah. And minus the reduced cost-apartment rental ($30/day) or hotel costs ($45/day), my insurance covers everything. [HUGE EXHALE] Let this be the final stage of my healing process. That would be a beautiful thing.

And why is all of this available?

"...this vision came from a personal experience. When Richard J Stephenson’s mother Mary Brown Stephenson was stricken with cancer, he went on a mission to find the most effective and advanced treatment available. He was disappointed by what he found. While these world-class cancer treatment facilities focused on the clinical and technical aspects of cancer treatment, they ignored the multidisciplinary nature of the disease. Upon her death, Richard J Stephenson vowed to revolutionize cancer treatment, and so he founded Cancer Treatment Centers of America."

When I first arrived this mornig, I was looking for the catch. Could it really be this good? Now the day is complete and I am truy moved by the commiment of this organization. Outstanding.

This sure ain't Sloan Kettering!!!

Upon arrival at the Philadelphia Airport, we were greeted by Emart, one of the drivers for the Eastern Regional Medical Center who carried all of our luggage and loaded us into a very nice white stretch limousine. Apparently, with no other clients to pick up, there was no reason to drive the shuttle bus. I can't say I was disappointed.

As we concluded our introductions, Emart found out this was our first visit to their hospital and began to tell us all about his experience with them. He told us he loves working for this organization. He said he looks forward to going to work because of the staff's commitment to providing extraordinary service. He also said he considered my particular doctor to be one of the doctors he refers to as "one of the angels in the hospital."

As we rolled onto the highway, he asked if there was anywhere we wanted to go before we went to the hotel. We decided it would be best to get some food for the day. We asked where we could pick up some prepared organic meals and he brought us to the hospital's organic cafeteria. When we arrived, the cafeteria had little to offer because they were between meals, so Emart drove us to Whole Foods which was way out of the way. The two of us chatted with Beau napping while Daniela went in for the food. Once we had what we needed, Daniela gave him some flowers for his two school age daughters and he safely delivered us to the hotel. When we go to the hospital tomorrow, we will be taken in on the hospital shuttle which runs every hour or so from the hotel.
We felt so welcomed by Emart. And after he shared his experience of the hospital and its doctors, I am actually looking forward to meeting with these folks tomorrow. And just to clarify, after all the different doctors I've met with, it can get kind of old, especially as they spend most of their time trying to convince me to quit Gerson Therapy. It's amazing the difference a smiling face, a few kind words and a little generosity can make. This sure as all hell ain't Sloan Kettering!!!

Off to Philly!

On Sunday, we leave for Philadelphia. The examination begins on Monday and its a three to five day process. At the end of the examination, they will present their recommendations and I will make my decision. If I choose to work with them, they could begin the process immediately or schedule me in the near future. If I do decide to work with them, I hope to start the minute after I sign the paperwork. I can't think of a reason in the world to put it off. If I can handle the ever so delightful digital exams (which I've had more than my share of - GodHelpMe!) then I can handle whatever they have in store. I will have a laptop with me, thanks to my ever so generous Mom, so if I do stay for any length of time, I will be able to email, Skype and do regular blog updates.

My understanding is that my treatments at the hospital could be anywhere from one to three weeks at a time. And each time I am scheduled for a treatment, I will be flown to Philly for that treatment.

The reason they fly their patients to the hospital for treatments is because they tailor each patient's treatment program specifically for their needs. It's not uncommon for a doctor at any given hospital to write their patient a prescription for radiation therapy with which the patient then takes to any oncologist of their choice - often someone close to home - and commence treatments. Cancer Treatment Centers of America will do a good deal of their treatments in-house so the cutting edge therapy they promise is followed to a 'T'. But to tell you the truth, I'll know a whole lot more about all of that by the end of this week. And as I learn more, I'll pass it along to you.

And one more thing. Since I am laying off the animal protein - one of cancer's favorite foods - I will not be having a cheese steak while in "The home of..."