Stressed to the Max, Redux

See how stressed out I am? I totally lost the article I wrote! Somehow in the ‘cut/paste/blog’ transition I routinely follow, it was gone, poof. I could not find a copy of it anywhere. No doubt, it is floating around in cyberspace! I do not usually make those kind of computer mistakes. Now I will try it again!

I have been aware much of my adult life that I am very much like a tiny rowboat in the open ocean of life. Perhaps others have yachts, and still others have ocean liners, I have a rowboat! Any wave rocks my boat, and any large unexpected wave, can toss me out of what little protection that rowboat offers. It does not even have to be one giant wave; it can be a seeming unending series of moderate sized waves, which is what I am going through right now. Below is an account of just ONE of them...

Today I went through the ‘pre-op’ stuff for my April 5th Cystoscopy and Retrograde Pyelogram at UCSD Thornton. I left here at noon, returned at 5:30PM, a long afternoon for me. Indeed, I am wiped out tonight. I had: chest x-ray, ekg, lab work, did insurance stuff, and had an appointment with the anesthesia department. Unless there is a problem with some of this preliminary stuff, I am good to go.

I just had a same-day cystoscopy for biopsies nine months ago, thankfully that time they were negative. Since then I have had some bleeding from an unknown source, so my kidneys need to be checked more thoroughly.

Yes, since I was initially diagnosed with T1-G3 Bladder Cancer on 9.11.2001 (I awoke to this tragedy unfolding on the TV while recovering from the surgery on 9.10.01!), I have had this stuff, plus in-office cystoscopies (and BCG inserted into my bladder) done numerous times.

It is different this time for a couple of reasons. I now have to go to a different hospital (UCSD Thornton – I used to go to UCSD Hillcrest). I will have the same doc, but it is much further away, I am not familiar with it, and I just had a cyber-pal die from bladder cancer 2 months ago. [Stress-my boat is rocking!]

Then there is all the ‘hassle’ of getting there and getting home! UCSD Thornton requires that you have a responsible adult sign you out and take you home (what if I lived on the street?). This is not as easy as it sounds, as none of my friends can transport a power wheelchair, which does not fold up!

UCSD Thornton also states that a ‘shuttle, bus, van, or cab’ are not acceptable forms of transportation; which of course, is the ONLY kind of transportation I have. (Is this a form of discrimination against wheelchair folks? Wish I had the bucks for an ADA lawyer!) [Stress-my boat is rocking even harder!]

Medicare will not pay for any form of routine medical transportation. Private companies charge in the hundreds of dollars, and will NOT come in and sign you out, but meet you at ‘the curb’ as does MTS Access. This leaves the onus of getting to and from surgeries on the patient, or their families, if they even have one.

It also seems to me that if a hospital is going to specify HOW I get home AFTER I am discharged, that they be required to SUPPLY said transit (as do two other hospitals in our area). Otherwise, discharge me and let me worry about myself!

Since I live alone, and have no one who gives a damn, I usually hang around the hospital for a few hours after (scheduling a ‘late’ transit pick-up). I get something to eat in the cafeteria, take something to drink out to the smoking area, checking back in with the surgery/clinic folks, and making sure I am OK before going home alone on MTS Access wheelchair van. This is no longer allowed.

In the last few weeks, I have gone around and around with UCSD Thornton same-day-surgery administration. [Stress-my boat is rocking still harder!] Last week we came up with a solution; I will have a neighbor come sign me out and follow my MTS Access Van back to my apartment.

Since I will be having a ‘spinal’ at 7:30 AM, I will have her arrive at the hospital around noon, and I will schedule TWO MTS Access pick-ups to return home, one about 1PM and another at about 4PM (in case I miss the first). Of course, this will cost me, (I will have to pay for three wheelchair transit rides that day, $4.50 each), and I will have to ‘reimburse’ the neighbor her gas money. [Stress-my boat is rocking still harder!]

Scheduling the wheelchair transit for that day is also problematic. I am to be at the hospital at 6AM, but the first ‘ride’ I can schedule is for 5:15AM, as MTS Access ONLY schedules according to when your local public bus runs! It sounds like enough ‘travel’ time, but there is always the possibility that other ‘riders’ will be on the bus, and will be ‘dropped’ first. I will have to speak to a supervisor about scheduling TWO rides home! [Stress-my boat is now taking on water!]

I cannot keep doing this! It is just too logistically impossible! My options are few, and have my mind whizzing around in circles. (Not to mention the worry about what this next procedure will reveal!) I will either have to change docs and hospitals, quit seeking medical attention for the cancer, or come up with the $500 for a walker (I can walk a few feet on a flat surface) that will fold and go in any car (I am actually saving towards this.).

Damn! You would think being on my FOURTH unrelated cancer is bad enough! But, I am bailing as fast as I can, and I am still sinking...