Another One Bites the Dust

I fired another doctor today. Dismissed might be a better word since I fired him in the same manner he has dealt with me—mostly silence and a general lack of interest. I have no delusions that this will even be a blip on his radar screen, and that suits me fine. I'm sure he, and the family doctor I recently fired, are both wonderful men and fine doctors. But, they have both made it crystal clear that they are not engaged in, let alone committed to our current struggle. No hard feelings, but if you're not going to be a team player, I need you to get off the field. I need a team that the man Rich who has cancer, rather than the cancer, infection and fevers as separate, unrelated events. Every day since his discharge from the hospital August 11, he has become weaker, sicker, and more despondent while the Infectious Disease doctor continues with a blasé wait-and-see approach. It's no longer acceptable.

What hit us both this morning is that we cannot go on like this. Rich stated it clearly before we left the house while struggling with his hacking cough. He can't sleep, he can't eat, he drenches the bed with sweat then he shivers under a mound of covers. He has 2 seconds warning for a pee and 3 seconds for a BM, and his cane is not motorized. For the first time in his life he's experiencing migraines every other day, and now diagnosed as a diabetic. He can't talk without a debilitating cough, and he can't walk ten steps without becoming winded. Left alone he would attempt to sleep non-stop and take nothing more than sips of water. He can't take a bath or shower so personal hygiene is adequate but certainly not enjoyable. He is constantly exhausted with aching joints. This has been going on for two months and the end is not in sight. He said very quietly, “This is NO quality of life, and I'm not going on like this.”

Great. Now I'll be struggling with tears the rest of the day while trying to deal with medical people.

Today we saw a new Inf.Dis. Doctor. Considering his schedule I was shocked he was able to fit us in at all, not to mention so quickly. He seemed thorough. When he was done taking the history he said he was told we were there for a second opinion. “No,” I smiled. “This was an interview. You're hired.” I considered feeling a bit guilty for bush-whacking him like that, then just as quickly dismissed it. I'm no longer sorry for anything I have to do. Especially since I got what I wanted—the good doctor is actually addressing the situation. He asked when the drainage was last tested. To my knowledge, not since the drain was placed, and not for my lack of requesting the lab work and offering the specimen. So he actually took a specimen to see if there's something new growing since a petrie dish would not be a better environment than Rich's liver. He double checked recent blood tests and wrote scripts for cipro and flagyl. And we'll see him back in the office in a week if Rich isn't in the hospital before that.

As for me, I'm just tired, mostly of watching Rich suffer, of torturing him with the energy it requires to get cleaned up in a sink, get dressed, ride forty minutes, pray for space near the door, or a handy wheelchair, maneuvering the halls, chairs, exam table when he's desperate to just lie down. I'm also very tired of dealing with people along this journey. At this point in my blog career, I'm thinking it's obvious to one and all that I am NOT a People Person. I liken my condition to being high functioning learning disabled. I can compensate. I do fairly well one-on-one where I can either discover that I'm in the presence of a kindred spirit, OR I am not outnumbered by stupidity. I also do well in large gatherings where I can easily make myself invisible to others yet continue to observe them. That's just good, clean fun. In my current situation I'm not able to use either of those coping mechanisms, so not a day goes by that the needle on my BullShit Meter doesn't redline.

Our appointment today was with a doctor two doors down from the endocrinologist—they share the same receptionist. But yes, I had to provide Rich's insurance cards and driver's license to be photocopied by the same receptionist that copied the same paperwork last week. Then she gives us a piece of paper which needs Rich's name, address, DOB—all the things on his driver's license (a copy of which is attached; and the policy numbers of the insurance cards also photocopied on the attached sheet. Why have computers? Why.

I come home and deal with the mail.

There is a large envelope (postage of $2.77) Inside the package is a list of the contents—A “Diabetes Dictionary”, three 8-1/2 x 11” full color brochures, with inserts; shopping list of additional materials along with their prices and how to order. All fitting into an oddly folded full color card board sleeve. It came to us courtesy of the US Department of Health and Human Services. From Bethesda, MD. I'm guessing it was initiated by some rule that doctors have to notify the government of all newly diagnosed diabetes. I really don't care how or why I got this package. Once my needle is in the red zone, “how” and “why” are sitting three Stop signs back.

First of all, the expense—printing and processing each package, ON A GOVERNMENT CONTRACT?!?!? When very decent clinic and doctor's office is full of info on all of the top ten diseased, not to mention the ads in magazines for corresponding drugs. If I had the time, I'd try to find out the price per piece. That money would have been better spent on research, OR funding prosecution of Insurance companies and mail away pharmacies for practicing medicine without a license.

Second—anyone with the ability and desire to research their newly diagnosed disease would most likely have already Googled, Yahood, or visited their local library. Anyone not willing or able to seek and consume the information is going to ask their doctor, nurse or cousin who has a friend with diabetes. They are not going to read these 8th grade level brochures. I know this for a fact because I often pick up brochures in the waiting room that were discarded on chairs, dropped on floors. They for damn sure aren't going to waste time on the nutrition pamphlet because they are not going to give up their yummy foods when a pill or shot will “fix it”. And everything in the book is about selecting and cooking healthy foods and reading labels. There are precious few healthy foods being dispensed from drive-thru windows and people aren't going to cook anything that requires more than opening a package and setting a microwave. And unless McDonalds comes up with a way to print directly on the bun, nobody's gonna be reading nutritional labels. Come on, if Wilford Brimley can't get people to get with the program, smart money says this package doesn't stand a chance. Just more to haul to the recycle center. What I could really use is a coupon towards test strips. A 14 day supply was $63.

In the same pile of mail is a form letter requesting a donation to the American Cancer Society's Research Fund. If I had a couple days I would add up all the money I have spent on cancer in the last eighteen months. Since no one seems to know what to do with Rich, I'm thinking he IS a research project. Yeah, I'm good. Besides, before I would give them a red cent I'd demand to know how many different computer software programs they use, if they can talk to each other, and how much time is spent hand writing information that has already been scanned. I need to see some level of efficiency before I volunteer funds.

A form letter from the hospital requesting Rich fill out a four page survey on the care he received during his recent hospitalization. No, really. How about I just write my blog address across the survey in big red letters.

As always the daily queries and offers from acquaintances and family. I know it is so well meant, but let's be real....even “Happy Birthday” will get on your last nerve if you have to hear it in the triple digits every week. Yet another scolding for Rich failing to return a phone call. (That one doesn't even hit my radar anymore.) Followed by a few phone calls from telemarketers trying to sell Rich life insurance and cruises. Finally, a phone call from my employer to remind me that my FMLA ran out today. I totally forgot I had given a return date that would give me five weeks from discharge to get him back to self-care. Now I have to find a doctor that will write a sufficient reason to extend my FMLA until heaven knows when because no one can decide what to do next. I go upstairs to check on Rich and find that the rain is leaking through my bedroom ceiling in three different places. Another two days of this and there will be large chunks of ceiling on the floor. Seriously. I don't want to play anymore.

Tomorrow I have to get him up and to the lab for a chest x-ray and more blood work, and then to another visit with Dr McGee. All before 11:30. Yee-hah. Looking forward to that. Think I'll take the cats along. It would probably be great fun to herd them too. Then again, they'd just be batting and clawing at the Pom-Poms I have to wave. Lest I sound bitter and bitchy, I assure you that I feel placid and resigned. I'll kick into operational mode as the tasks demand. I try to keep telling myself that things will turn any day, a decision will be made, progress will begin. Fear of disappoint is my biggest obstacle.

I think I'll break the rule and leave my cell phone on and pray it rings. My ring tone is “Close Encounters of the Third Kind.” When it rings, for a split second I'm aglow with happiness because I think maybe my ride is here.