Sunday, May 13, 2012

Doctors, Nurses and Scheduling.

Note: Some of the links below connect to another blog I maintain, that chronicles my activities with a medieval organisation called the SCA. You're welcome to read either blog, but for those of you who don't know me though the SCA, talk of "kingdoms" and "Heraldry" might prove a hair jarring. 

Wednesday was an interesting day, but in a good way.

I met my Oncologist, Dr Jaan. He's a slender man with light copper skin, and short gray hair with a hair line that had long ago reached the summit of his head and was on a slow but steady ride down the other side. The name and the accent pegged him as eastern meditation or middle eastern. His pencent for cramming three English words in one syllable didn't discourage my guesstimate either. 

The news was as interesting as it was startling. As it turns out, I have one of the most aggressive forms of Lymphoma, and also has it turns out, this is a good thing. If I had stopped to think about my high school biology, I probably would have understood that a little better in the moment. "Aggressive" cancer means that it is dividing constantly, scientifically, it's in a near constant state of mitosis, or cell division. Cells are particularly vulnerable to intervention in this state, which is why the most aggressive types of Lymphoma are also the most receptive to treatment. In short, the "other guy" was burning the candle at both ends to try and kill me, and in doing so, he was leaving himself open to a hell of a counter punch. 

The counter punch, in this case, would be a five-drug cocktail. One of which is supposed to be an extremely effective drug at reducing tumor sizes.... the only catch, it can also cause hepatitis, especially in people who already carry a dormant virus, like I do. So, guess what, we just included a hepatologist in on this little party. I haven't even heard the man's name yet, but at this point, what can I do, and what can he do? I know what we'll wide up doing, we'll wind up monitoring the hell out of me while I go through chemo. 

Then Dr Jaan got to learn a little about me. He said that we needed to schedule a port placement with a surgeon. I grinned and said back "Already on the books; Wednesday of next week." The older man started, obviously not used to being anticipated at that level. The fact of the mater was that the second my surgeon called me with the results of the biopsy, she made sure to schedule me for a port placement, knowing that it would be a critical step in getting me treatment. By the time the previous Monday had rolled around, she already had me written in, she just needed word from the oncologist's office that a port would be needed. I'm not even entirely sure she waited for that before calling me, but hay, I'll take proactive over lazy any day. 

Then I found out that PET scans are critical in Cancer treatment, and yes, I would be getting one next week. There went Tuesday and Wednesday of next week. 

Then, I got to stand up for myself yet again. Dr Jaan said they also need to do a bone marrow sample and that they can do it there in the clinic. I'll have to schedule a day off of work and the nurse can take the sample...

"Hold it!" I cut him off. "I'm going to be out cold and butt naked on the operating room table this time next week. How about you try drilling holes in me then?"

I wasn't expecting his reaction, but I wasn't displeased. The trim man smiled widely with a bit of astonishment in his eyes. "Hey, that's a great idea!"

"Yes, I think so too!" I agreed eagerly. "That's why I'm suggesting it."

"Outstanding, I'll call the surgeon right now and see if she can arrange that." 

And, ironically, that was the end of the meeting. 

When I got out of the office, I was intercepted by a nurse who calmly handed me my schedule for next week. Like a student being handed a class schedule, I was calmly informed that I would have Chemotherapy training on Monday, the Pet Scan on Tuesday, Chemo Therapy on Thursday, and an EKG on Friday. Add in the surgery on Wednesday, and everyone else had just volunteered 40 hours of my sick time, and taken a complete week of work. That idea wen't over like a lead balloon, and I wasn't shy about putting that sentiment to words. 

"Why is the chemo class on Monday?"

"We wanted to make sure your scheduled was clear so we set it then." 

"How long is it?"

"About an hour"... in the middle of the day, no less. 

"Lets move it to Tuesday. And the EKG test... lets move that as well. Also Tuesday."

"Um..." the nurse said blankly, "I'll... I'll have to call the hospital and ask them if they can do it." She kept staring at me, obviously expecting me to relent. 

I looked back with a mirthless expression as I pulled out my phone. "Would you like to dial them, or shall I?"

She blinked, then in a classic "light-bulb" moment, she realized that I wasn't kidding and I wasn't going to take "I said so" as authoritative, at least not here. She nodded and headed back to her office to make the phone call.

I wasn't about to wait for that phone call to finish to reclaim the rest of the week. I went back to the front desk and walked up to the scheduling CNA who sat behind the counter. We exchanged pleasantries, and I updated her on the my scheduling situation. "Now, how about this Chemo treatment... why are we scheduling it for Thursday? I'm already going to be here Wednesday and Tuesday."

"Yes," she agreed. "But you are going to need a clear schedule for this."

"How clear?" I countered. "I've already been told to write off five days of work, how about a reason why?"

"Well, we want you to have the whole day for the treatment."

"We want" was not the way to steer this conversation with me, and obviously this nurse hadn't gotten that memo on that.

"Duly noted. Now how about just telling me how long the treatment is." I have gone through major abdominal surgery before, and that only lasted 5 hours... I was seriously wondering how long it would take to apply a medication dosage."

"Typically, a treatment takes five to seven hours. We schedule it for seven and a half."

Now it was my turn to blink. "How in the hell much stuff are you pumping into me?" I blurted out.

"Enough that you'll need to be here for seven and a half hours." She didn't press the point, but left it where it stood. There is only so much point in arguing with specialists, and this argument was quickly amounting to a loosing one.

Some time later, the first nurse returned saying that she had scheduled the EKG for Tuesday, but she still would feel better if I came in on Monday for the class. Something about needing to have a day free of distractions. Considering that I managed to graduate from a four year engineering college, I was totally perplexed at what could happen to me that would cause me to forget an hour long class. I also really had to wonder how low an opinion she had on my information retention capabilities.

"Duly noted," I said calmly. "I'll see you on Tuesday." And then turned and walked out before she could argue with me any more.

My next stop of the day was my Surgeon, Dr Pentz. This is the same woman who had called me the Friday before, terrified that she was going to leave me in  a depressive tail spin. I don't know how old she is, the mannerisms, and the attitude mark her as my generation. On top of that, she's currently walking with the slightest bit of a waddle, the after effect of delivering her third child. In fact, when I had to call and talk to her the Saturday before, our conversation was marked with her turning and shouting "would you two sit down and shut up", obviously trying to keep her older two polite. She apologized to me twice before I laughed and said "I'm a parent, Dr. I completely understand."

Today would be just a hair different. I was sneaking in off the books, a momentary visit to huddle and plan things, to catch up, and to talk. I would be at the mercy of her schedule, but I was glad to wait as long as it took. As it happens, the wait wasn't long, and a moment later Dr Pentz, clad in surgical scrubs, hustled into the room, her nurse in tow, proclaiming she had a grand total of seven seconds to talk to me.

Her words were stern, but her face said that she was glad for the opportunity to coordinate. I raced through the oncologist's visit, highlighting the facts. When we got the part about the cancer being aggressive, but highly receptive to treatment, she gave me a high five.

At the time, I don't know why that stuck with me like it did, but in retrospect, I understand now that I have never had a doctor engage me as an equal. There is always something aloof, and distant about the profession, even when I was a child. Pentz was different from the word go. When she first saw me three weeks before, I was still carrying the memories of my last encounter with surgeons, and was none too happy with them. I openly chastised her by saying "Let me just make this clear up front. You advise, I decide, and you don't make any decision for me. If that's a problem, say so now and I'll find another doctor."

And to my shock at the time, she clapped her hands together, smiled and said "Oh, good! Finally a patient who understands how this is supposed to work. I think we're going to get along just great."

In that moment we'd forged the beginnings of the respect that some others in her skill set had evidently not bothered to prioritize. She knew I would want answers and not placation, explanations and not patrimony. I wasn't to be talked down to, or talked around. I was not to be left out of the loop, but would be brought in, educated, and consulted on all decisions. Mine was to be an educated, active role in my medical situation, at least with her, and that I am still forever greatful for.

Once I had brought her up to speed, we briefly outlined the game plan for Wednesday's surgery. Gladly, we were both on the same page, but for me it was good to state the obvious, I have too many "misunderstandings" in my background with it comes to medical decisions.

The last thing I did before departing was to tell Pentz, in no uncertain terms, that her decision to tell me about the lab results on Friday was the best thing that could have happened. By telling me, I was giving the opportunity to tell a large swath of my friends many of whom face to face, about the news. I was given the chance to face this thing with my friends and family rallied around me  supporting me, and ready. No better decision could have been made, and I told her that her call was the right one for all those reasons and more.

I walked out of the office, glad for the huddle, glad for the confirmation that things were what they seemed.

I still had a busy week ahead of me;

Monday, I was going to work, and having a coworker shave my head. For me. You see, if I'm going to loose my hair, then I'm going to do it on my terms. I won't have my son watching me shed in a sickly and drawn out fashion. This way, I am in control, I call at least that shot.

Tuesday would be the PET scan, an EGK and my Chemo class.

Wednesday would be surgery, where I would have my port put in and a bone marrow sample taken.

Thursday... Chemotherapy... all day.

Friday... back to work. I can't tell you how many people have told me "Oh no, you'll call in sick on Friday. No one wants to work after a day of Chemotherapy."

And all I say to them is "We shall see."


  1. Good luck, Cisco. You're strong.

  2. All this happening in Stillwater? Please call if you need anything - Floyd

  3. Way to go!! An interesting point that having the more aggressive form is the easier one to treat. So while I'd rather this had never happened, I *am* glad to hear that the chances for treatment are on the higher end of the scale.

    Had to laugh a bit in parts of this, just because I can *totally* see you talking like that to them! Awesome!! Keep it up! Better that you do things on your terms than only react to what's happening.

    If there's anything I can do (besides thinking the happy/positive thoughts that I already am), please let me know!

  4. Go get Ivo! We're all rooting for you! Get better fast so I can hear the creaking castle story again. :) Much love and prayers for you.


  5. Resting is an important part of helping your system help you. Listen to your body, and if you're tired, then don't macho through work on Friday with a reason more important than pride.

    Praying for you. :)

  6. That cancer doesn't know anything about aggressive. Keep kickin ass and taking names Cisco. In my book, you've already beaten this thing, it just doesn't know it yet.

  7. I approve of you being assertive and taking charge of your own care. Go on your own terms, and do your own research to go with the information that you're being given, so you can make your own informed decisions.