Not the Doctor

The weekend finally came to a close and the hospital world started to move again. Monday brought some answers but also many more questions and confusion. Here is what we knew:
I had AML subtype M4
It may or may not have spread to my CSF (cerebral spinal fluid)
Bone Marrow biopsies at Loyola hurt like the devil because they do it bedside (no sedation)
Lumbar punctures are no fun either
I wasn’t going home in 2 weeks as previously thought. More like a month.
This wasn’t going to be quick and painless.

Here is what we didn’t yet know:
The genetic markers of the AML. Did I have favorable or unfavorable markers?
WOuld I need a stem cell transplant?
What treatment would get me into remission?

Now, let me explain something. If you’ve never had the experience of being in a “teaching hospital” (one associated with a university or medical training program), its totally different than a typical community hospital. There are so many people that come talk to you and so many of them will say that they are “not the doctor”. At some point, I wanted to say “then get the heck outta my room”! Every morning, the “doctors” start invading around 8am. First the interns. Happy shiny teenagers, ok...early 20’s, who are useless. They ask you all sorts of questions and give you an exam. Next come the Residents. Slightly older but still happy shiny useless non-doctors who just repeat all the same questions and same exam. Then finally the leader of the useless non doctors, the Attending, comes in and actually does something helpful. His or her minions, the residents and interns, have reported their findings to him or her and he or she now comes in to give you the actual answers to your questions and information that is accurate. Mind you, this is usually hours after you were first poked and prodded by the interns but they and the residents are in your room again now looking wide eyed at the Attending and nodding their heads in agreement of whatever he/she said. Bobble heads. Sometimes you’ll have a Fellow come by. A Fellow is helpful when they want to be. If they are particularly interested in your disease or condition then they are as good if not better than the Attending. Otherwise, they are just another doctor bothering your rest. Besides the doctors and non-doctors, you have the nurses, the aides, the housekeepers, the dietician, the chaplain, the social worker, the financial counselor, the transplant coordinator, the art therapist, the phlebotomist from the lab, the phlebotomist from the floor (when the lab one can’t find your vein), the respitory therapist and the psychologist. These people all come in and out whenever they need to. Oh, but don’t forget to rest! Ha!

Let me just say that Loyola has been overall wonderful. There have been some dingbats I’ve had to deal with, but overall I’ve been very happy. I do respect and appreciate the interns, residents, and fellows. I am an educator and I understand that learning is best done with hands on experience. It would be great though if they didn’t have to disturb the patient so often.

Finally we had a clear picture of what I had going on by mid week. I was FLT3 negative (yay), NPM1 positive (yay again) and the AML had spread to my CSF maybe. This put me in the intermediate risk category if the CSF was in fact infiltrated. If not, then I was in the Favorable risk category. Bottom line: I still had cancer. My life is forever changed. About whether the AML was actually in my CSF or not, that depended on which doctor or non-doctor you asked. Labs were never totally definiative but there was enough evidence there that I endured countless Lumbar Punctures over the next month in order to administer methotrexate directly into my spinal fluid. Before discharging me in late October, a neurosurgeon performed minor brain surgery to install a chemo pump under my scalp that has a tube that goes directly to the center of my brain. No more spinal taps. But...brain surgery...ICU stay and a frightening looking bubble on my head surrounded by 20 some stitches. Today, 3 years later, the pump is still in place and not noticeable under my wig. (What? Wig? Your hair didn’t return? Settle down. We’ll get to that story...). Thankfully, it hasn’t been used for 18 months. But its now a part of me since removing it is another brain surgery and more risky than just leaving it.

Speaking of new parts installed...I got a fancy schmancy PICC line. Basically its a long IV tube that goes in the upper arm and ends millimeters above your heart through your aorta. Cool huh? It can handle larger volumes of fluid than an IV and it has two lumens (lines) so I could get fluids and chemo or chemo and antibiotics or whatever combo at the same time. It’s also more permanent than an IV. My first one I had for well over 6 months. It had to be treated carefully. I couldn’t get it wet...just like Gizmo in Gremlins! Also, it had to be sterile since it was directly to my heart. I had a second one and then a Hickmann, but we’ll get to those later.

My treatment plan was Cytarabine and Idarubacin. I participated in a Phase III Clinical Trial and instead of the typical 7+3 regimen, I had Cytarabine round the clock for 4 days and Idarubicin once a day for 3 days. The treatment regimen was referred to as IA. Now, for those of you who aren’t familiar with all the treatment options for AML, I’ve probably bored you. I apologize. However, I want to be as helpful as I can to those who are experiencing AML and knowing what treatments other went though was something that I wanted to know.

The side effects were brutal. I’ll get into that more later. For now, it is time for bed.