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
Thought about you a lot this week -- especially today at the Cardboard Regatta. Remember when we all did that!?
ReplyDeleteSo sorry about the seizure and the glycemic difficulties. I hope you can feel ALL of the positive energies I'm sending to you. As always, call me if you need anything. Fondly, Kathy
Bob, I've been thinking about you a lot, especially when you hadn't written in a while. You sound like you are handling all this well -- with energy to spare for alliterations! If I can be of any help, please let me know. Glad you are going to Paul Faust. He is an angel! -- Joanne
ReplyDeleteBob, that "up" date of June 12th is "up" beat too! My question is just how big is that feeding tube: perhaps they make them wide enough to take lumpy things, like crab cakes, burgers and the like? You're larger than life, so ask around. You've finally appeared on my Facebook site; great red bow tie. We're all thinking of you from our home in the Land Down Under.--Dick Hutch
ReplyDeleteBob,
ReplyDeleteI'm glad to see there is some positive news and that your spirits are still up! Keep going! Steph and I have been thinking about you a lot too. We were thinking of sending you something and possibly dropping by for a visit, when we don't have a crazy weekend. What sorts of things would you like?
It sounds like you are in good hands.
Dear Bob,
ReplyDeleteBad news apparently travels VERY slowly to faraway Clary's Forest, but now we are up to date on the blog and you are very much in our thoughts. Suffice it to say that Columbia cannot do without its remarkable Renaissance Man, initials BR, meaning you. A partial list of your qualifications for the job: writer and financial guru; actor, director, and all-around thespian and ham; comic, jokester, and raconteur; puzzle constructor; festival emcee; swim team starter; parade and community organizer; Ben Franklin channeler; softball umpire; entrepreneur; Columbia pioneer; gourmand; rabble rouser; husband and dad; and, not least, friend. We're sure we've left out a good dozen or so. And we'd of course like to add another to the list: cancer survivor. If you and/or Barbara find yourselves wanting visitors, just say the word. We do wish you all the best,
Jim & Adriana
You continue to be in our prayers every day as we ask Fr. Vincent Capodanno, a Vietnam War Navy chaplain and Servant of God, to return your health fully and completely. He needs two attributed miracles to attain sainthood and with your Navy background and love of humantiy, we can't think of a better candidate.
ReplyDeleteYou'll be the first to know, so keep us posted,
Suzie and John