Friday, June 8, 2012
Yesterday, though the thermometer only said 88, with humidity at 80%, the air felt well into the hundreds, verified by the Weather Man. I had to drive to the Surgeon’s office to sign the consents for surgery.
I did try to get a ride, but everyone happened to be busy on Thursday after noon. The office called at about 2:00, I was preparing to leave but had an episode of tachycardia, and had to wait until I could see again to drive. When my head stopped spinning, I walked the 500 feet to my car. When I opened the door, I could feel the heat pour out, but the doctors office was anxious and I was late. Of course, I had to regain consciousness again. It took a few minutes to get feeling back in my legs. And I went.
After a harrowing drive and getting lost, my daughter Allie called just as I arrived to the office.
“I can’t get a flight until the 27th, do you want me to come at 9:00 or at 12:00? Matt can come pick me up.”
“Allie, I’ll be in surgery at 9:00am! It’s creepy to think if something happened, no one would be here!”
When I found out that the surgery was scheduled for the 27th, I had told Allie to just make the plans to get here as soon as she can, that I cannot make these decisions.
“Let me go see what they say, and I’ll call you later,” because I really thought that this was the appointment that they would explain everything to me about the surgery, give me my test results from the last two months, and answer some questions.
None of that happened.
I had a difficult time initialing the statements that said things like “I have been given other treatment options”, and “The procedure has been explained to me.” I told her, I can’t sign this. NONE OF THIS HAS BEEN EXPLAINED TO ME. The doctor diagnosed me, sent me for releases from pulmonologists and cardiologists, had two months of tests, and then would perform the surgery on me without even talking to me first! I was appalled, and frightened, but not surprised. I have received medical care in four different states, but the physicians and allied health workers in Houston are the absolute worst. I think even Louisiana has better health care! You certainly wouldn’t know it from the media. Unless you are rich, famous, or otherwise noteworthy, Texas has the worst health care in the U.S., and the most uninsured, who receive NO care. Where else would Michael Jackson find a doctor that would set up general anesthesia at home? But I digress, and this is for another argument, possibly another day.
So the office girl (not a nurse, in Houston, I’ve only seen poorly trained med techs, surgery techs, but never an RN) made an appointment for me to see the doctor to answer my questions. Why wasn’t this done all at once? Gee, thanks for making me risk my life once more to get here again.
Having an appointment with the surgeon, I went ahead and signed the consents. They can always be rescinded.
On the way home, I stopped to pick up a prescription. When I got out of the car, I noticed that some one had busted out my tail light. I’m certain it happened in this fine hood I live in. I called the complex security (who are off-duty HPD), and a “note” will be made. Now that’s what I call some fine police work. The perfect ending to a horrible day. Now I have to figure out how to get this fixed, and pray that I won’t run out of water and that my three Ensures keep me conscious until I can get the tail light fixed because the cops WILL pull me over for that, needlessly search my car, and make up something to give me a ticket. I called my son, but he will only be able to spend a few hours here before my surgery, and will not come again until the night before my 5 am check-in.
That night, I checked flights from Phoenix to Houston, because I just couldn’t believe that all the flights were booked three weeks before! Of course, they weren’t, and I realized that Allie would not be here simply because she doesn’t want to be. When I asked her why she couldn’t come earlier, she informed me that she’s going to Flagstaff the day before. WHAT? When she called me “unappreciative”, I had to say goodbye for now and hung up. Then I threw up. How it hurts that to her I mean so little.
So it’s easy to see how I hung in a delicate balance between depression and anesthesia today. While I’d like to say that I was simply calm, the truth is that Xanax® was probably more responsible for my emotional emptiness than natural tranquility. Call it a condition of my illnesses or of a cancer diagnosis and pending surgery, as hard as I try to stay positive, some days are more difficult than others. Today was one of those lost days.
It is also the condition of my life that I have the energy of a coma patient after any activity, such as grocery shopping, cleaning, going to the doctor, doing the laundry, and the many other things needed to be done and places to go in a city of six million. “Friends and acquaintances” often say ‘Please call me if you need a ride or anything!” And I’m thankful for the rare times I am relieved of the life-risking task of driving. Still, the alternative has its own limitations and stresses. People are busy and in a hurry. My pace is slow. I’d speed it up if I could, really. The hardest part is getting food. I quit asking people to help me get to the store. After being told, “sure, how’s next week?” so many times, I give a grateful thank you but don’t feel the need to explain that the human body needs food and water daily (Houston tap water is not recommended for drinking). I assume it is something that everyone knows, but I doubt few of my friends have ever experienced hunger due to the inability to procure food for days at a time. They do not understand what I mean when I say I need food. In America, we think that hunger is a childhood condition of poverty. For example, although I qualify for food stamps because my medical expenses bring my qualifying income down to an impoverished $300.00 a month, Texas awards my $16.00 a month in Food Stamps. If a child were involved, the amount would be nearly $300.00 a month. This begs the question, are the disabled and elderly seen as having any value in our society? Certainly, they do not in Texas.
Having a very limited diet of soft or liquid nutrition that will pass the tumor in my throat already makes eating a challenge. I hold off as long as I can, because eating is painful and I’ve never been much about food anyhow; but when I start fainting from lack of nutrition, I have no choice but to risk it and make the trip myself, even weaker than when I first asked for help. Though I’ve had a quite a few close calls driving to the store, I’ve only lost consciousness once while shopping. Since then, I just pick up a few things. I carry as many of the refrigerated items as I can in (it’s about 500 feet from my car to my door, I can make one trip, carrying five pounds total. Anything else has to stay in the car until I can get someone to get it out…it could be hours, it could be days.
These may all sound like silly problems, and one can’t imagine that I really am in this situation, but it is these things that make me want to reconsider the surgery. I don’t have any idea how on earth I will be able to complete all the tasks I have to do before the surgery. I won’t bore you with the details, but if it does not absolutely need to be done, it is not on the list. Many of these things only matter if I survive the surgery, though. With my horrible luck, I probably will.
Other thoughts that go through my head include doing everything I can to MAKE SURE I do not wake up from surgery. Perhaps a Carton of Cigarettes and a few bottles of Aspirin or Ibuprofen the few weeks and for sure the night before the surgery? Do every thing on the list that I’m not supposed to, and don’t do any of the things I am? Lose the weight I’ve gained, and pray pray pray I don’t wake up?
I have my Advanced Directives written out, including a DNR, and a special note regarding surgical risks, such as severing my vocal cords, and after that having to live with a tracheotomy. No thanks. So I will make sure that if anything goes wrong during the surgery, they won’t rig me back together as a vegetable, and consider that life.
Perhaps things will turn around for me, I want to believe that my mood will be positive. But there is a very big part of me that DOES NOT WANT TO WAKE UP. First, I need to find out my options, and how long and how bad things would be if I let it go. It’s already been nearly 8 years since a Louisiana doctor first diagnosed the tumor, and I have been begging for treatment for the last five, so perhaps enough time has passed for metastasis. That would be the best outcome, for certain.
It’s nearly 5:00 a.m., and I’ve yet to sleep. My mind is racing and if I stop it, I’ll only fall into a sobbing heap of hopelessness.
Lord,
kill me or cure me, what ever your wish, but please relieve me from this purgatory.
Amen.
kmarie c 2012
