July 16, 2010

I apologize for not keeping up with the blog, but things were moving so quickly as you will see soon below, that I was unsure what to say.

Not only has the cancer metastasized to the liver, but to the bones as well. An MRI on Tuesday afternoon confirmed that. So now it is really everywhere.

The chemotherapy, unfortunately, made my life even more miserable than the cancer itself, so i have, at least temporarily, declined any more chemo.

I came hone to get affairs in order.

While there is no real prognosis (nobody knows), the cancer is not curable.

I will be having an initial meeting with hospice soon with the hopes of some relief from pain which is very constant and tormenting.

I am humbled by the many offers of assistance and will contact you when specific needs arise.

Thanks for all your cards and calls of support.

Please call before coming to 5129 Rondel as I am not always in shape to receive guests.

June 12, 2010

Sorry for the long delay, but there really was not much news until this week.

A little set-back this week: I woke up on Tuesday with seizure-like symptoms and was in the hospital for 2.5 days of tests (MRI, CAT and EEG). No sign of stroke, clot or tumor. So, although one of the blood sugar readings would argue against this, it seems like a hypoglycemic event, because it occurred on Wednesday morning in the hospital again.

At any rate, the hospitalization took out my meeting with the naturopathic doctor. I was hoping to see him before starting chemo to make sure that all of my nutritional needs were being met.

I did get the feeding tube put in and have been getting all my food in that way. Lynda MacNeil (and my oldest son, Bobby) has been doing gargantuan gobs of Google (like that alliteration?) research on good diet and has provided me with recipes for juices and shakes, etc. that seem to be working pretty well except for my blood sugars which continue to be erratic. Based on my primary care and endocrinologist comments in the hospital, however, high blood sugars are more acceptable than low right now. We cannot understand why a combination of water and bunches of organic fresh vegetables would make blood sugars rise so much.

I finally received the second opinion from Johns Hopkins which I am going to pursue. Dr. Rosalyn Juergens suggests a two-chemical regimen (oxaliplatin and 5-fluorouracil) which she suggests would leave less bridges burned, would be more apt to fulfill the dual goals of quality and quantity of life and is the best tolerated regimen. The other nice thing, she says, about this regimen, is that "it can be combined essentially at full dose with radiation, so if the patient does require radiation to the esophagus or palliation of the swallowing symptoms, it is something that could be readily modified to be given in full systemic doses with radiation." Eating like a human again would be REALLY nice.

I have sent an email to Dr. Juergens at Johns Hopkins asking when I can begin treatment.

I will be meeting with Dr. Paul Faust, N.D. (Naturopathic Doctor), on wednesday of next week when he will provide me with what will be a nutritional and chemo-tolerating diet. When I asked Dr. Juergens about her giving me a list of the things I should NOT be ingesting (pouring stuff down a tube is really not EATING, right?), she said no, but that she would respond to a list of planned foods and let me know if any would interfere with the chemo.

At poker last night, I got another very nice recommendation from a current patient (wife of one of my poker buddies) of Dr. Juergens who indicates that I will really like her.

Keep those positive thoughts, prayers and whatever else you do to wish me the best. This was a difficult week, but things are settling down a bit and my stress levels are tolerable.

With love,

Bob

May 21, 2010

Thanks for checking in.

I got my first opinion yesterday from U of MD and they say chemo is the only route right now. The medical oncologist there suggests a protocol called modified DCF (which includes three drugs Docetaxel, Cisplatin, and Five-fluorouracil). I would need to go in on Wednesdays and Fridays every two weeks. The chemo may work well enough for some radiation to be added as an option as well . . . possibly later.

I am having a VERY hard time swallowing; the consensus seems to be a feeding tube which is easily removed (versus a stent, which would open the esophagus, but has a lot of other downsides like moving, etc.). Although the idea of a feeding tube does not sound exciting to me, I need to be well-nourished in order to take the chemo. It will also allow me to take my other medicines (which I've been unable to swallow).

The doctor with whom I talked who would do the feeding tube insertion has an opening on Tuesday of next week and his assumption is that if all goes well, I will be able to make my second opinion meeting at Johns Hopkins two days later (next Thursday) and then I'll have some big decisions to make . . . like starting a treatment plan. But at least I will be nourished.

So thanks for your thoughts and prayers . . . I need and appreciate them.

Love,

Bob

May 14, 2010

The lymph nodes in my neck are positive for adenocarcinoma. The surgeon at U of MD has sort written me off and suggested that I meet with my Medical Oncologist, which, of course, I did not have. He has scheduled an appointment with Dr. Naomi Horiba for May 20. I now have an appointment for a second opinion at Johns Hopkins (May 27) with the Medical Oncologist Dr. Rosalyn Juergens (who comes highly recommended from a poker buddy of many years -- she is treating his wife's lung cancer). I understand that Dr. Stephen Yang (Surgical Oncologist) is reviewing all my records and will be in touch with a second opinion from JH regarding surgery.

I am doing a lot of reading, have lost over 30 lbs. (while that is likely a good end result, try YOUR best NOT to accomplish it through cancer), am trying to eat a lot healthier and have attempted to change my body from acidic to alkaline, which is on advice from a Native American Medicine Chief with whom I met last week.

My main concerns right now are three-fold. First, I am not eating very much. It is difficult for me to swallow anything but liquids (although last night I did manage to do some broccoli, spaghetti and black beans) and I must do so in very small quantities at a time, chewing them endlessly (or so it seems). So, in some ways, I am feeling like I might be dehydrated and/or malnourished. I have been sipping Ensure and other protein items, eating a lot of blended soups, etc. I think I need to drink more water, which, for some reason, is not one of my favorite activities.

Second, I don't know who or what to believe. The amount of information I receive (and seek out) on a daily basis is immense and most kind souls seem to have the ONLY answer. I am reading Norman Cousin's Anatomy of an Illness, have downloaded and watched several really FUNNY movies and laughed a lot, have been affirming that "Every day, in every way, I am getting better and better and stronger and stronger," and, although somedays I don't feel a lot better, I continue to instruct my body to do so.

Third, if I am relegated to chemotherapy ONLY from the medical side of things (which is the recommendation from the first surgical oncologist at U of MD), I worry about what that will do to me. I have also been reading a book by Raymond Francis (called Never Be Sick Again) who purports that there is only ONE disease and two causes. The one disease is cell malfunction; the causes: toxicity or malnutrition. So therefore, he is opposed to chemotherapy which puts poisons in your body to kill the cancer (and a lot of good stuff too).

These seeming contradictions put me in a quandary about which efforts to "approve" and which to postpone or say "no" to or . . . Yikes!

Barbara and the boys (as well as extended family and friends) have been WONDERFUL. Very concerned and thoughtful . . . and so encouraging.

Please continue to keep me in your thoughts and prayers.

Bob

Update April 27, 2010

Thanks for all your kind thoughts, prayers and words. I am working on getting a second opinion based on something that I received from a survivor of my kind of esophageal cancer and my cousin who is a doctor in NYC. I am making an appointment at Johns Hopkins, also right here in Baltimore.

A second possibility is MD Anderson in Houston which I understand has done some outstanding work with this cancer.

On Friday, the University of Maryland Hospital Center will biopsy the lymph nodes in my neck (a last step before determining the treatment protocol, I think).

Keep those prayers, thoughts and positive vibes coming my way -- I appreciate them.

More next week.

Bob

UPDATE April 22, 2010

Well, we still don't have the final results but so many people seem to want information about my situation. So, please forgive the mass distribution, but here it is in a nutshell.

I have esophageal cancer (adenocarcinoma, the bad kind) and it is in a late stage (for those of you who are aware of the current staging, it is T3, M1, N1). If you want more information about that, it is available at Wikipedia, but, again in a nutshell, the stage is generally not curable and achieves less than 3% survival for five years.

That being said, they are doing one more test next week (on the lymph nodes in my neck) to establish the protocol which will likely not be surgery or radiation, but chemotherapy.

I am going to reduce some of my non-work activity (theatre directing, etc.) so that I can zero in on getting rid of this thing. I am not interested in "checking out" just yet. While the doctors at the University of Maryland Hospital in Baltimore are good, they don't seem particularly interested in the non-science part of this whole phenomenon.

So I will have to take that on myself.

I will be interested in anyone who knows about alternatives that seem to be good ideas for this particular type of cancer. I already have a few friends/colleagues who have suggested acupuncture, Reiki, a Native American healer and Cancer Centers of America (they seem to be more apt to include non-traditional treatments as well as traditional). Unfortunately, the Cancer Centers of America have about the same rate as the rest of the world in dealing with this cancer.

I don't want people to think that I am not interested in "talking" on the phone. It is just that I have so many people to converse with that this seemed a bit more "efficient" although less personal. You are welcome to comment on this blog; I will be checking it.