Wednesday, August 10, 2011

A Few More Delays

(Cartoon found at: - thanks to Brother Kev. for the find)

Today my mom and I went to meet the radiation oncologist, Dr. Wangchungtonight, and the medical (chemo) oncologist, who shall not earn a name.

To back up, the sole reason that I'm now finding a new radiation oncologist is that radiation needs to be given 5 days a week for 6 weeks. Mayo is amazing and I'm sure that they would do an amazing job. However, I wanted to find someone local that they recommended, so I wouldn't have to move to Rochester for 6 weeks. Dr, Wangchungtonight was the only guy that they could think of in the cities. Unfortunately, he's in an (otherwise) dumpy clinic in northern Maplewood, next to a mall. I have become snobbish in my health care providers, certainly.

Dr. W. seems like a great and patient guy and I do feel confident that he can give me the kind of care that I need. He wants to make sure that there isn't any other cancer hiding anywhere, so he wants to give me a full-body PET-CT (with contrast) tomorrow. Compared to and MRI, A CT scan is more like the magic trick where the magician takes a hula hoop and passes it around the body of a floating assistant to prove that there arent' any wires being used. Though this hula hoop is more like the size of a truck inner tube, and costs millions of dollars. A CT scan for the patient) is quiet, painless, simple, and non claustrophobic. The MRI scan is incredibly noisy (earplugs are needed) and you are stuffed into a torpedo tube that (for me) is smaller than the diameter of my shoulders. I'm not normally claustrophobic, but I need to be medicated with valium in order to get through a full-body MRI.

I had a bad reaction to the CT contrast dye that they used a few years ago. This allows them to see everything much more clearly, but it is useless if the patient dies of anaphylactic shock on the exam table. Clearly I haven't yet, but my reaction last time scared them enough that they said: "never let anyone give you CT contrast again." And so I haven't. Apparently, PET-CT is different enough that the contrast dye is different. I'm not really clear on what the difference is between a CT and a PET-CT.

So we'll do that tomorrow. If I break out in hives and have a hard time breathing, they'll pull the plug and we'll try again another day without contrast.

Today was supposed to be (or at least I thought) my radiation planning session. This was supposed to be a 3 hours appointment where I meet with the Radiation Oncologist and get scanned in preparation for the actual radiation. The doc now wants to do the scan first, make sure there is no more cancer  (a good idea) and then from there create his plan of where he will irradiate, using the CT as his template.

So the current schedule is that I'll have the Pet-CT tomorrow (Thursday) and meet with Dr. Wangchungtonight on Tuesday for the radiation planning session (a 3-hour appointment where they will permanently tattoo me with small dots on my abdomen so that the radiation can line up exactly every time. It takes Dr. W. about a week to get his radiation plan together, so this now means that I'll start radiation a week from Tuesday, or on the 23rd of August. I am hoping that these delays (that I can't seem to find any way to bypass) will not mean that the cancer spreads further.

I also met with the medical oncologist (the guy that gives the chemo drugs) today. This guy I did not like, and I found the combination of his pointless chattiness, hard-of-hearing-ness and ineptitude with computer-based ordering and records to be frustrating. He had on a ridiculously shiny striped short, and small black, thick-rimmed reading glasses that looked like miniature Harry Potter glasses. He also hit one of my major pet peeves with doctors: the question of "so why am I seeing you today?" Because he doesn't actually know. Because he hasn't cracked open the records.

On the other end of the spectrum, Dr. Wangchungtonight recited my *entire relevant medical history from memory*, without looking at a single note. And this is a very long list, at this point. He told it like a story. I was stunned. There were things that *I'd* forgotten, even. He had the order down, names, dates, diagnoses, outcomes, everything. I feel good that if you tell Dr. W. something, he will remember it later.
The medical oncologist that I met with today -- that I have decided I will *not* be working with -- will not be appearing enough in this narrative to earn a name.

It looks like Chemo and Radiation will begin on that same (5-hour) day, 8/23. This will be nearly a month after the recurrence was diagnosed , and I am painfully aware of the clock ticking away.


Eclector2 said...

Good luck with the CT Scan tomorrow. I plan to sleep until noon, but I'll still be thinking of you.

BTW: I have baked some zucchini bars for your weekend getaway, so don't forget to pick them up.

Cathy Crea said...

If it's helpful, I'm fairly sure your dumpy clinic next to a mall in northern Maplewood is about 7 minutes from my house or my work. Call or text me if you need anything, or just want someone there with you. I'm an excellent patient advocate. (651) 252-1565

M said...

@Mom, thanks for coming yesterday and I look forward to trying the bars! @Cathy, thanks I really appreciate it -- I will be doing 28 radiation treatments and I know that I'll have to drive myself to many of them, but some company would be nice for sure, especially on the Chemo days when I'm there all day long.

Anonymous said...

Hi, Michael - Good luck, and will be putting out good thoughts for you today. Dr. WC sounds really cool - wouldn't it be really weird if he actually memorized your chart before he met you - maybe the stress of being referred by Mayo is making him actually the only hyper-vigilant doctor in the Twin Cities. Now maybe you could have Mayo refer a new medical oncologist, and you could ask HIM, so why am I here to see you today? Would you please send me some zucchini bars (just kidding-or am I?)


M said...

Hey, Lsikora, actually he did memorize it before he met me, this was our very first meeting! And I think you are on to something: I think docs get a little stage fright when they're working with a patient that is referred from Mayo.

Anonymous said...

You DID say he actually memorized it didn't you....I guess I have the opposite problem of Dr. WC...(ADD instead of OCD) HA!....yeah, hard to tell if he's hyper-vigilant because of Mayo or just has a form of autism or OCD, or maybe he's just a caring MD......whatever works!

Anonymous said...

Too bad there isn't some form of backchannel info on doctors. Or is there?


Deborah in MN said...

Wow, this is a lot to take in. Your situation makes mine look like a walk in the park. I bet your clinic is next to Maplewood Mall. We go up there for a lot of medical things and also shop at Maplewood Mall a lot. It's not far from us. Let us know if we can help with anything or even just keep you company during chemo. My surgery is the 23rd, so I won't be able to be with you at first. What time is your chemo? Poor Mom - two kids with major medical issues at the same time. @Dad - I have come across a website rating doctors (by patients) in my recent medical research. I didn't book mark it tho.

marilyn h said...

Michael it may be that Dr. Notworthaname was using the "so why am I seeing you today" approach to gauge your understanding of your situation, rather than assuming 1) you don't have much comprehension, so he needs to dumb down his explanation which is highly insulting, or 2) you are fluent in medspeak, which is frustrating because you may leave feeling like you were listening to a foreign language. But really listen to your gut, you need to feel confident & comfortable with your doc. But you already know that. Best wishes to you from Lee & I.

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