Diamonds in the Sewer

Tuesday, June 12, 2007

Roswell, and the fact that what's bothering you often isn't the important problem.

When my friends found out that I was going to Roswell, most assumed New Mexico. When they found out it was a hospital, they assumed that I was comparing the world of being sick to being abducted by aliens -- a metaphor of getting your whole life hijacked.

No, Roswell Park is more like a resort.

I've eaten worse at Disney resorts. Not kidding. If you have cancer you often need to be tempted to eat, and the food was better than "the mouse" and better than my home cooking. And keep in mind that we run a B+B, our chef is from Longfellows and the other guy who cooks is a Ryan's Steakhouse manager store graduate.

When I first came out from under I was in the company of a young man with a tufty beard. I wanted to talk to someone, and he made the most friendly and open eye contact. I let my guard way, way down -- he just had "I'm listening" written all over his body -- and I told him how it was in my baby language. It's one of the really, really rare ones -- I'm Boyash

He listened, and then continued sweeping the floor. Yes, the people who create comfort for the patients goes all the way from the most simple of tasks. I talked to him a few more times (English and Boyash) before I left, and I hope they have an internal hiring program so that he can do more patient work.

Just about everyone was that good, consistently. This is such a wonderful
situation in any service industry!

This situation started about eight months ago. I had been figure modeling for a fine arts class when one of the students noticed that I was getting up oddly. I explained my (then minor) discomfort -- belly getting more rigid, sometimes a sharp pain around my bellybutton, but afterwards nothing -- I didn't even have any lingering sore spot, other than feeling very, very silly. Some sort of odd charlie horse of the muscles, I was getting older.

The doc told me to look into this as an umbilical hernia. Which I did; figure modeling pays very well, meaning that the people who draw you treat you as a fellow artist.

The hernia doc said, yep -- and sheduled me for a C-T scan. Which found a thickened uterine lining. I had been meaning to start a fertility journey, because many women in my families have first babies at advanced ages. Ooops.

The cancer doc and I were personality mismatches, and one of the many problems was that his records were distinctly different from what I'd shared with him. Including that I did not have a hernia.

So -- I was dealing with increasingly common rigidity and pain in my *upper* abdomen while dealing with my family, who are increasingly worried. This doc sends me for another C-T scan, finds masses around my heart, tells me that this is "a setback" and sends me for "staging" with a thoracic doc. My family at this point is ready to put me in the ground, sure I'm going to die in the thoracic's care or shortly afterwards. I receive a great deal of interaction from my family, the kind that is well meaning and at the same time a lot of work for the receiver.

During a rare moment of quiet I push a few terms into a search engine and end up talking to a Roswell volunteer. I ask him for something -- anything -- that I can tell my family so that they can be calmer. I don't feel about to die, or even particularly unhealthy.

The masses around my heart turn out to be exactly what the volunteer said that they could be (sarcoidosis) and what I told my family that they could be -- no promises, just another possible answer.

After how this discovery is handled, I wish to go to Roswell and be part of Dr. Lele's clinical trials. I'd desperately wanted to be a mother, if I couldn't do that at least I could make the world a little more safe for the girls who would be born, at least my fertility dying would protect children if I could not create any.

The pannus situation is now getting impossible. I can't reach -- areas that need regular care. At home I have a hand-held shower.

After a major battle, I did indeed earn a bed at Roswell, and I'm convinced that this choice will improve the quality of the rest of my life.

Aftercare for personal areas was as difficult as I feared, but the clinical care people at Roswell did help me with physical assistance. One of my few "could be improved" would be a hand-held shower for care so that assisted washing of patients doesn't have to be a care task for the nursing team. I didn't like having to ask, and I'm certain that was at least as unpleasant for them as it was for me.

The worst part of the recovery wasn't the lower pelvic, it was the upper abdomen, which went from episodic stiffness and rare incredibly intense pain to a constant pain making me want to bend far enough backwards so that I could sit on my own head -- just getting my head in line with my body was excruciating -- and causing me to nearly constantly if awake be asking for pain relief -- for days on end. I feel badly that I was so hard on the care team, which of course wasn't about to put me into a stupor and gave me real medical care. It took until nearly my time of leaving before their constant, hourly working with me on pain control got to the point where I had another thought besides "ouch".

I had no idea that "gas" and "heartburn" could hurt to that magnitude.

Also -- if the staff would work that devotedly to solving my pain situation I can only imagine how complete the pain care must be for people who have cancer-related issues.

I give this research hospital four snaps, a full and hearty recommendation, and hope that people who read this support them, try to work there, and choose them for their own cancer journey.