Reviewing Mortality

Per Wolters Kluwer… (and the technical stuff doesn’t last long). 

INTRODUCTION

Acute myeloid leukemia (AML) refers to a group of hematopoietic neoplasms involving cells committed to the myeloid lineage. Acute promyelocytic leukemia (APL) is a biologically and clinically distinct variant of AML. APL was classified as AML-M3 in the older French-American-British (FAB) classification system and is currently classified as acute promyelocytic leukemia with t(15;17)(q24.1;q21.1);PML-RARA in the WHO classification system [1]. (See “Molecular biology of acute promyelocytic leukemia”.)

Without treatment, APL is the most malignant form of AML with a median survival of less than one month [2].Registry data suggest that many patients die before reaching an experienced hematologist. Thus, those patients who enroll in prospective clinical trials may already be a selected subset. However, with modern therapy, APL is associated with the highest proportion of patients who are presumably cured of their disease. The treatment of APL is distinct from that of other types of AML and is comprised of several stages which, in total, may span one to two years of treatment (table 1) [3]:Remission induction
Consolidation
Maintenance

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Please pardon the uber-paragraph…for some reason, I can’t get paragraphs done on this post…

In the past few months- and especially the past few weeks since a local anchorwoman died from APL, I’ve been looking back at those first weeks when I found out I had the disease.  I’d gotten some routine lab work that showed some significant problems, and had to wait 2 weeks before I could see an oncologist.  He wanted to do a bone marrow biopsy the following week. For those who are counting, that’s 3 weeks of the expected month to survive if  the disease is untreated. I never made it to that scheduled bone marrow biopsy – I ended up in the ER the weekend before with some shortness of breath that I figured was due to the anemia (I’d seen the lab work; I was in trouble- just didn’t know what type at that time).  But, I’ve got a history of some significant blood clots in my lungs, and have been told to always get anything funky in my chest checked out.  Good thing I did.

So much more makes sense now, as far as why things seemed so ‘urgent’.  I’d been an RN since 1985, but never dealt with blood cancers much.  My mom had cancer in several sites, as did a dear cousin (of some sort- not sure the exact relation, but it’s not important).  I’d worked with cancer patients who needed surgery.  But I had a lot to learn when I got sick.

I had some complications- petechiae (tiny hemorrhages under the skin that can lead to systemic bleeding…and death) from low platelets, infections from my immune system being trashed, and anemia from the cancer itself. I had over 2 dozen transfusions of blood products (platelets and red blood cells).  My temp went to 103 with an ear infection and cellulitis into my chin and neck.  And I just sort of lied there in the bed not having much of a reaction to any of it.

I’d heard that APL has a very high cure rate, and that’s what I hung on to; I was going to be  fine.  Infections get fixed. Platelets get replaced. Anemia is treated. No problem. Right?  I guess that degree of denial and general ignorance was helpful at the time. I had very little anxiety.  I laughed a LOT at ‘America’s Funniest Videos’, and tried to stay upbeat.  Now, I realize how close I came to buying the farm. I was already circling the drain.  But I was fortunate. I got a chance to get well.  The anchorwoman in town had two days between diagnosis and death.  That was it.  Her friends and family were left with so many questions and a degree of shock that rips at the core.

I have to admit, I’m more skittish when something comes up that isn’t ‘right’. I wonder what my blood counts are when I’m feeling tired.  I wonder if various aches and pains ‘mean’ something (I’ve got fibromyalgia- I’ve always got aches and pains, and the only thing THAT means is a royal pain in the butt).  I wonder if I’ll relapse before that ‘magic’ five-year mark (April 2015). I wonder what the plan will be if I do.

I’m not generally a morbid person (a bit macabre sometimes with a typical nurses’ sense of humor). But I don’t think about dying much.  I’ve got a strong faith in God, and belief in Heaven, so death doesn’t scare me. That being said, I don’t want to die.  My dog needs her heart meds.  My dad is still around. I’ve got some dear family members I haven’t known that long and don’t want to ‘leave’.

I’ve become even more thankful for being diagnosed when I was.  I’m thankful that the oncologist I was assigned to (at random from the ER admission) was familiar with APL and the current treatments to get the best possible outcome.   I’m thankful I had a chance. 

Could You Just Call And Check On Me In The Morning?

That’s really all I’d gone over to ask my neighbor.  Thank goodness she could tell something was wrong that couldn’t wait until morning.  I had been having a lot of low blood pressure episodes, but this felt very strange, and I was a bit afraid of going to bed and not have someone check to see if I was OK in the morning.  I’m an RN. I’ve lived alone for decades.  I’m glad I knew my neighbor well enough to ask her to call me.  But she could see something was really wrong.  And that’s the last thing I knew until…

…I woke up in the Emergency Room approximately 4 hours later.  Lisa worked late, and got home around 9:00 p.m. , maybe 9:30 p.m. I’d gone over there around the time she got home so I wouldn’t bug her later.  I woke up in the ER and the clock said 1:30 a.m. I’d been unconscious for around four hours.  The dysautonomia was one part of what was going on, I think. Many years later, I realized that a medication interaction was also involved.  Anyway, the first thing I saw off to my right was the doctor counting my medications.  I had a bad habit of adding the last of an old prescription into a bottle I’d recently gotten, to minimize the number of bottles around. They were medications I took routinely, so I knew I’d use them within a short period of time.  The doctor wasn’t amused at my space-saving maneuver as he couldn’t determine if I’d OD’d (no) and on what (nothing).  Once I woke up, he just asked me; I answered him, and he stopped counting.

The next thing I remembered was being told that they needed a urine specimen.  OK, no problem, just let me up and I’ll go pee.  They told me that with my blood pressure being what it was, they weren’t going to let me go anywhere.  That’s the first I’d heard about my blood pressure.  It had taken 4 liters of fluids to get my systolic BP to the upper 70s, and a random 80mm/Hg.  It should have been at least 100 without fluids, and with roughly a gallon of saline, I should have been well into the upper normal range.  It wasn’t happening.  They were sending me to ICU for dopamine if my BP didn’t stay near 80.  If I ‘hovered’ enough at 80, and continued to make sense, they’d hold the dopamine. That’s a resuscitative drug.  I didn’t like the sound of that  whole situation.  But I wasn’t in any condition to argue- they’d stuck a catheter into my bladder (blowing up the balloon on my internal sphincter which HURT-  one should always make sure to push the thing in before blowing up the balloon).  One hose in (IV), and one hose out (Foley).  I was stuck.  I was also more than a bit spooked that I’d  just lost consciousness at my neighbor’s apartment with no warning. I never felt like I was going ‘out’.  I just wasn’t ‘there’ anymore.  I think I kinda know what it feels like to die, until checking into the afterlife (for me that’s Heaven; I’m one of those born-again people).

So, off to ICU for the night.  I was in a bed  in a room with a camera so the nurses’ station could see every move.  Lovely.  Like were was I going?   I kept looking to see what my blood pressure was on the monitor behind me (took some scootching around in the bed), until one of the nurses told me that if I kept watching it, she’d put a towel over the monitor.  Hmmph.  I just wanted to see that I was moving in the right direction. I did not want dopamine.  More plain fluids were running.  I probably should have been thankful for the catheter by the time my kidneys caught up with the volume of IVs pumped into me in a relatively short period of time.  Even though my urine test and blood work showed no abnormal amounts/types of medications in my system, they treated my like an overdose.  Guilty until proven innocent?

My regular doc came by on  morning rounds, and corrected the OD diagnosis.  She knew me well enough to know that ODing wasn’t something I’d be doing. At 41 years old, and not in great health, I was more interested in staying alive.   I didn’t ‘do’ drugs, and had enough medications to take  on a routine basis that I resisted taking prescribed medications that weren’t ‘scheduled’ meds- I didn’t like ‘as needed’ meds at all.  But I didn’t know that two of my medications had been making my life hell, and were likely the cause of my blood pressure dropping to the point of unconsciousness in my neighbor’s living room.  I’d taken the muscle relaxant  Zanaflex for years and had no problems with it (NOT Xanax, the anxiety pill- one physician I saw – once- didn’t know the difference; she now works in the Botox/spa medicine field).  I’d also taken Benadryl as needed for years for allergies.  Well, the two cause really bad hypotension, at least for me.  I had my list of medications and prn OTC meds on a piece of paper in my wallet, and nobody caught it.  I’d been in the ER before for low BP, and all I got was a bunch of nasty attitudes from the nurses, and one doctor in particular. I figured it out later, after changing to a different muscle relaxant because of cost.  All of a sudden, no more severe low blood pressure (I’d actually had mini-strokes from hypotension).  I still had the dysautonomia blood pressure issues- which felt totally different.

Anyway, I got cut loose that morning. I’d been offered another night’s stay in a regular room, but wanted out of there. Had it been a weekend in the Caribbean, I might have reconsidered.  The ICU nurses were actually quite nice.  That ER was known for being nasty and sometimes cruel; I guess the balloon being blown up too soon could have been an accident, but who knows.  I just hope they aren’t that nasty now; I go to a different ER when I need to, which has proven to save my life twice.

I owe my neighbor more than thanks. She literally saved my life.  She also avoided having to have a body removed from her living room (unsightly and deteriorates quickly).  I’ve lost contact with her, as she moved years ago.  I know I thanked her, but I’m not sure I really ‘got’ the extent of what she did at the time.     So thanks, Lisa 🙂