Tuesday, September 15, 2015

Observations from the Road

A few observations from our “week” on the road:
  1. Towns called Pintlala, Tickfaw, and Lobdell exist . . . oh, and Flomaton.
  2. The fastest drivers on the road consistently have Texas plates.
  3. Vast amounts of Louisiana’s highways seem to have been constructed entirely of speed bumps.
  4. Happiness can be found at a casino in Lake Charles, Louisiana. (No, really . . . hundreds of billboards told us so, so it must be true, right?)
  5. Out of the dozens, maybe hundreds of casinos between Atlanta and Houston, there appears to be only one smoke-free one on the gulf coast, and it is in Biloxi, MS.
  6. If you’ve been looking for Chubby Checker, we found him. He’s at a casino in Biloxi, along with all of your favorite 80s musicians.
  7. The casino industry is as concerned about your potential addiction to gambling as the smoking industry is about your potential tobacco addiction. There’s a helpful phone number that is almost legible underneath each gigantic casino billboard ad.
  8. Texas is entirely too wide. We stopped at exit 880 as we entered the state.
  9.  MD Anderson’s cancer center appears to be about the size of the city of Columbia, SC.
  10. Just because you are at arguably the best cancer center in the world doesn’t mean you’re going to like your doctor. :-(

We have also
 discovered over the past six months that treating cancer is as much an art as it is a science. Here is what I mean:
  • Mayo Doctor in Jacksonville – recommended typical RCHOP treatment
  • MUSC Doctor – recommended RCHOP plus Methotrexate
  • Emory Doctor – would have likely recommended RCHOP plus stem cell transplant
  • MD Anderson Doctor – would have done tests others didn’t do, would have likely done EPOCH rather than RCHOP, and only would do stem cell transplant if I have double-hit lymphoma, which we will know only after they get the pathology results from the extra test they are doing on my original biopsy.

The MD Anderson experience started out on a positive note. All the staff were kind, helpful, and efficient. Unfortunately, when we met the doctor, our experience changed. I am certain the doctor is one of the best in the nation, but when he walked in, he didn’t bother introducing himself and just started rattling off information that we didn’t understand. It was as if we had walked in to the middle of a medical class where the professor was lecturing, but we had no context for anything. 

He spouted off jargon about cellular and genetic information and test names and acronyms we’d never heard of as if we were supposed to know what he was talking about. He huffed when we tried to ask clarifying questions, once he finally looked up from his computer and took a breath. In trying to understand him, if we incorrectly repeated something he had said, he was very condescending in his tone towards us, and when I apologized for not understanding but told him that most of the things he was saying were Greek to me, he responded with a smirk on his face that that was what I had come there for, wasn’t it?

How did he know? He didn’t bother to ask us what we had come for! He had not really bothered looking at the information they insisted they needed before my first appointment. They absolutely had to have my scans at my first appointment, but he hadn’t looked at them. He said he doesn’t look at scans. That’s what radiologists do, but their radiologists wouldn’t even look at them unless we did new ones at MDA, because they don’t get paid to look at them, since we’ve already had them read by someone else who has already gotten paid for that. If we did new ones at MDA, the radiologists would look at the old ones to compare, since they’d be getting paid to look at the new ones.

He talked about what he would have done differently but really had no insight into what treatment was actually done, (because he didn’t bother to look!). It appeared that he had no interest in helping us as a second opinion. He might have been a great doctor had we gone to him for the initial diagnosis and treatment, because he’s got great ratings and is known as one of or even “the” best lymphoma doctor there. Perhaps he had an off day, but we decided this was not what we had been expecting or hoping for from our experience after a 14-hour one-way drive.

While he said he could do some testing and maybe get me in to see a radiotherapist who he was certain would have administered radiation as part of my original treatment even though it was touching my brain, if MDA had treated me instead of other doctors, “because it’s easy for the docs at MDA.” We asked what they would radiate now, since the original area seemed to be clear, and he seemed to think they’d find something they could still radiate. However, since ordering the tests and scheduling this other appointment seemed like it was mostly just because he assumed we wanted that, we decided to leave and drive home. We both agreed that we had no interest in his being my doctor. Brilliant or not, we did not feel like we received “care” from our doctor at MD Anderson.

While we were emotionally stunned and disappointed, after hours of debriefing, Eric and I do think something useful came out of the information we sort of translated from all of the gibberish we heard. Here’s what we came away with (summarized by Eric after looking up more information on the internet):

My prognosis comes down to two tests. The MDA pathologist ordered an additional test on my original biopsy to determine if it shows something called MYC translocation (pronounced “mick”). This would be indicative of what they call double hit lymphoma, which is not good news, and would cause the MDA doctor to recommend the stem cell transplant. Otherwise, he would not. The transplant carries a 1-2% chance of killing the patient, is tough to go through, and is expensive. Additionally, the data is mixed on whether it actually helps or not.

The other outstanding test is the PET scan. My original doctors recommended waiting 6-8 weeks after the final chemo treatment before doing the scan because the chemo continues to work for some time after it's given. The MDA doc scoffed at that and said I should have gotten it within two weeks of the final treatment. In any case, if the PET is negative, and the MYC test is negative, he recommended doing nothing and is expecting a good outcome. If the PET is positive, we would need to biopsy anything showing hypermetabolic activity to confirm, then we'd be looking at more chemo before even talking about stem cell transplant.

The MDA doc goes solely by the pathology to determine stem cell transplant, where the Emory doc seemed to be basing it more on the location within the body. We're glad to hear the additional test was ordered and curious to know why my previous doctors at MUSC seemingly hadn't ordered it (probably because some of this is new information from recent studies). However, it was good to hear that the MDA recommendation sounded pretty much the same as the original MUSC recommendation (a negative PET scan means do nothing but monitor), unless the MYC is positive.

We decided to go ahead and have the PET scan done at Emory as originally planned. By that time we should have the MYC test results back and will have a better picture of what comes next.

So, we will take the MYC test results to my Emory doctor and hope it means something to him. We will get all of my tests done at Emory from now on, and we will just pray and rest in the care I receive from the doctors there, ultimately trusting in God’s sovereignty. The only hesitation I have with this route is that my MRI and PET scans will now be done next week instead of this week, and my appointment at Emory to find out the results is not until October 9th. :-( Hopefully, the MYC result will be in by then (praying for a negative result), and my Emory doctor will get it and know what to do with it.

Thank you to all who have prayed and helped out for our week (that turned into three days of mostly driving). While it was disappointing in many aspects, it did give us a bit of new information. Hopefully, it will be helpful in our decision-making for the next steps on this roller coaster ride we are on. In the meantime, I’ll just focus on growing more gray peach fuzz for at least a few more weeks and trying to make a few more observations from the road. :-)

1 comment:

  1. Wow! It is just overwhelming to read much less for you to go through. I was praying for clarity and it was clear to you that he was not your doctor but, ugh...didn't ask for that package...

    Love you friend. Thanks for the update.