2012 in review- JillinoisRN

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 3,700 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 6 years to get that many views.

Click here to see the complete report.

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. 

When It’s Too Late To Fix Leukemia

This week, a local anchorwoman died of complications from leukemia. She was diagnosed on Tuesday and was dead Thursday night. Two days. That was it.  She had been working as scheduled  up until the day she called 911 for a worsening bladder infection, with severe pain and nausea. Then she got the devastating news she had leukemia. The next day she needed emergency brain surgery, and never woke up. She was 29 years old. Vibrant. Professional. Animal lover. Upbeat.

You can search:  Jeannie Hayes, WREX-TV 13, Rockford, IL and get more of the media reports.

Of course my first thoughts were with her family, friends, and coworkers. They had no time to really register what was going on.  One day, she was working, the next day she finds out she has cancer, and on the second day she died.  Scary stuff.  I’m sure they’re still in somewhat of a state of shock. Her viewing was today at a local church.  A week ago, their lives were ‘normal’.  They had no warning.

As a leukemia survivor (also with acute myelocytic leukemia, subtype M3, or acute promyelocytic leukemia), it hits really close to home. I don’t know what subtype Jeannie had.  I found out about mine through a standard CBC (complete blood count) that was part of my annual diabetic assessment. My lab work was BAD. As an RN since 1985, I didn’t necessarily know what flavor of ‘bad’ I had, but I knew it wasn’t good- I had a bit of warning.  I had been scheduled for a bone marrow biopsy, but didn’t make it to that appointment before the shortness of breath led me to a 911 call. I have a history of blood clots in my lungs, and have been told to always get anything ‘funky’ checked out. I knew what my lab work looked like. And I knew that the shortness of breath was likely due to anemia. But I never know…

So, I’m in the ER for hours (crazy night there), and got admitted when the doc told me she didn’t know what was going on, but my labs had dropped by half in a couple of weeks (there wasn’t much room for them to drop). She was really concerned. The next morning I met my oncologist and within 10 minutes they were doing the bone marrow biopsy.  The morning after that, I got the diagnosis, was moved to a room in an area set aside for those who must have as minimal exposure to infection as possible, and started on chemotherapy pills.  I also got a PICC line inserted, even though my platelets were horrible; I had to have vein access for the IV chemo that started the following day.  I soon developed purpura on my legs and abdomen (tiny purple hemorrhages from low platelets)… not a good sign. Thirteen units of packed red blood cells (blood transfusion) and twelve units of platelets were needed during my stay… THANK YOU, blood donors.

Had I not gone for the annual diabetic lab work, I wouldn’t have lived. My oncologist told me that I was in really bad shape.  He called it ‘dead sick’ in his Iranian accent.  And I remember being too sick to care what they were doing. I had some infections set in, and was on vancomycin and gentamycin for about 5 weeks. For those who know what those are, they know that they’re strong antibiotics. I also was given 2 ‘protective’ eye drop antibiotics and steroids.  The ear infection and cellulitis into my neck and jaw were pretty bad.  The ENT doc had to pry my ear open to put in a ‘wick’ for the ear antibiotic drops to seep into- there was no opening in my right ear from the swelling. None…it was ‘slammed’ shut with edema and infection. The ENT also had to suck out the pus from my ear.  My temp was over 103.  For someone with no immune system to speak of, that’s not good.  I got very lucky.

If I hadn’t had that routine CBC, I wouldn’t have gotten any follow up, or known what was going on.  I’m so used to having something go wrong medically, I blow off a lot.  Note to self: don’t blow stuff off.  My ‘vision’ of my demise is me just going to bed, and not waking up.  My dad may have found out I was dead after not hearing from me for a couple of days. I hate to think if he would have come over and used his key to get in, finding me on his own… and my dog wandering around confused (we talk nearly daily as ‘attendance checks’- he’s 80 years old, and I’m a train wreck- we try to keep track of each other).

I’m so grateful I found out in time to get help.  I’m expected to be OK. I went into remission during that first 6 weeks in the hospital (April-part of May, 2010).  In April 2015, pending no relapses, I will be considered cured.  I’m one of the lucky ones. It was hell going through chemotherapy for 19 months, including 50 doses of arsenic infusions (IV), and 11 months of tretinoin, methotrexate, and M6mercaptopurine.  My body went through a lot. But, I got a chance to live.  APL is one of the most curable forms of leukemia, when it’s detected and treatment started immediately.

How I wish Jeannie would have had that same chance.  Even ‘just’ a chance to say goodbye, and have some time to do what she needed to do before ‘just’ not being here anymore.  I wish that for everyone.  IF someone ends up with cancer (or anything terminal), I wish them the chance to see their loved ones and for them all to have the opportunity to let go of each other, hard as that is.  I wish them the chance to ‘finish’ things. My understanding via the tribute on her news channel (WREX-TV 13), is that her family got there when she was in a coma after the emergency brain surgery. They came as fast as they could, but the cancer was faster.

I later read that the average time someone lives without treatment after the onset of the disease (with minimal symptoms) is 30 days.  Many people are diagnosed at autopsy.  The biggest ‘tip’ I could give anybody- if you feel something isn’t right, get it checked until you get an answer that makes sense.  Not everybody can be fixed.  But everybody deserves a chance.

For everyone else, it’s probably a good idea to know what you want to say to people, and do it.  Get things put together.  None of us are guaranteed tomorrow.

EDIT- 11/21/2012- Today, WREX gave info about the specific type of leukemia that Jeannie Hayes had. She had acute promyelocytic leukemia (APL).  This is the same type of leukemia I had- and makes it even more sad, since it’s one of the most curable when it’s caught in time.  Like Jeannie,  I had no specific symptoms to suspect cancer. I had routine lab work done.  Jeannie had the bladder infection, and it was ‘caught’ when she went to the ER for that.  I also had some bleeding issues- but was in the hospital, and because I was already being treated, I was able to recover.    My thoughts and prayers go out to Jeannie’s family and friends.  There was no time to say goodbye.  ❤