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.  ❤

I Hate Cancer…

Sounds pretty straight forward, but I don’t mean that I just hate cancer in general. I  don’t want to hear about it anymore.  I don’t want to see the photos of  bald kids I don’t know, or some pink ribbon logo plastered everywhere. I’m just so DONE with it.  And yet, I get it.  I know about wanting to support ‘the cause’.  But I really just want it completely out of my life.  Maybe that sounds crass. But it’s how I deal with it… to each our own, right?

But on the flip-side, I have a lot of empathy and compassion for people I know who are dealing with cancer. I want their days to be the best they can be.  I understand what it’s like to be a cancer survivor, and never know if  it’s going to come back or not. I know what it’s like to watch a parent deal with the aftermath of cancer radiation (and multiple surgeries/sites because of cancer), and have her mind destroyed by dementia from that radiation. The cure led to her decline…

I’m not some cold, uncaring jerk.  I just don’t want to hear about the grand general cancer cause.  It’s more personal than that.  Maybe that’s it.  I don’t like it being some token thing to climb on board its bandwagon.  It’s great that people want to advance research. But don’t send me the flyers.

When I was diagnosed with leukemia on March 30, 2010, I wasn’t all that surprised.  I’d seen the blood work that was done as part of my routine diabetic annual exam, and knew it was BAD- like ‘buy-a-shovel-and- hire-an-organist’ sort of bad.  But I was still kind of in shock.  I’ve had enough weird medical stuff go on in the past few years that nothing really cuts my world to pieces, but I was nervous about my recovery.  When my oncologist told me I had the best kind of leukemia in terms of survival rates, I sort of closed my mind to anything but being cured. That was that. Get on with it.

Chemotherapy wasn’t as bad as I thought it was going to be, when I was in the hospital. Yeah, I puked once and was extremely tired.  My hair fell out- except for a few strands in the front (the first time).  Dad called me from my apartment when he was looking in on Mandy (my dog), and asked where some scissors were so he could come and cut the stray hairs off.  I told him the kitchen, and he showed up with poultry shears…not what I had in mind, but it got the job done. Chicken scissors for my hair trimming – oh well; something to laugh about!

The nurse I had the most often during the day had ‘the talk’ about ‘what if’ things didn’t go well. What did I want done. I have advanced directives, and talked to dad and my cousin, Jane.  We were all on the same page.  I’ve had ‘the talk’ with countless numbers of patients and/or their families in the past. Being in the bed was not good. Nope. I didn’t like that part at all. But it was necessary.

I got an ear infection that swelled my right ear completely shut. I couldn’t hear squat. The ENT doc came in and had to pry it open to stick a ‘wick’ in for the antibiotic drops to seep down to the infected area. Then she came back a few days later and sucked out the gooey stuff with a little metal vacuum. That was an odd sensation. I asked her to please avoid going deep enough to slurp out gray matter. She agreed.   That  ear infection drifted into my neck, so I swelled up like some lopsided mumpy person. I was in isolation for about 5 of the 6 weeks. I could walk in the enclosed hallway with a mask, and I could walk around the room. I was attached to an IV for more than 5 weeks (nearly all of that on Vancomycin and Gentamycin for my friends who know what sort of antibiotics those are; if Vanc and Gent can’t kill something, it probably can’t get killed).  I don’t  think that thing was taken down until a day before I went home.  I was too tired to do much of anything; got a heel sore for my lack of oomph.  The day I wanted to go find chocolate in the gift shop was a big day !

I got 25 units of platelets and red blood cells combined. I might not be Swedish anymore (or Norwegian – my biological ethnicity).  I’d developed purple polka dots everywhere from mini-hemmhorages. My platelet level dropped to about 7. It should be  around 150-450 (actually measured in thousands, but nobody says ‘thousands’ when they talk about the counts).  So I had to have the platelets (13 units), or die.  I was at the point where a sneeze could have caused a stroke.  I was very anemic, so that’s why I got the 12 units of red cells. Not enough of those to carry oxygen around my body.  I think I’m finally understanding the phrase my oncologist used this last couple of weeks….I was ‘dead sick’. But I watched ‘Funniest Home Videos’ for 3 hours each afternoon and evening, and laughed as much as I could.

Neupogen/Neulasta…the shots to increase my white count were worse than any injection I’ve ever had- including spinal taps. The pain from inside the bone was indescribable. Dilaudid didn’t fix it.  I got those shots every weekend for about 3-4 months during the arsenic, as well as a few in the hospital during that first 6 weeks when I was first diagnosed. I didn’t know what was causing it at first, and didn’t want to be a wimp, so when the tears came, I didn’t press the call light. I didn’t want to be one of those patients.  When my nurse came in and saw me crying, she told me that she’d call and get some pain meds ordered- and to not just sit and hurt. IV Dilaudid. It dulled the pain, but nothing fixes that sort of pain. When I saw the ad for it in a cancer magazine in my oncologist’s office, and it suggested using Tylenol for that pain, I was offended at their lack of awareness of their product.

Then I was told I’d be getting arsenic infusions. Arsenic. The stuff that is normally discussed on forensic shows, ending with someone getting a life sentence.  Seems that arsenic fixes the subtype of acute myeloid leukemia that I had.  That and some stuff that is like accutane on steroids- ATRA for short. The combination (along with two other pills) reconstructs chromosomes that cause the leukemia. I ended up going into remission about 3-4 weeks into the first hospital stay.  That amazed me. More reason to not get all bent out of shape.  The process wasn’t pleasant- but no need to get all worked up.  SO I got 2 25-dose cycles of arsenic. I had to be on a heart monitor, so drove to the hospital 50 times for those infusions.  I drove there on Saturdays and Sundays for the bone-crushing  shots to increase my white cell count every weekend while on the arsenic.  And at home, I was like a blob. The Monday that began the very last week of the arsenic, I got shingles. On my butt and crotch. That wasn’t very nice.  But it wasn’t the horrible pain I’d heard about. The shot side effects were much worse. But the shingles were quite annoying. Mostly because they prolonged the end of the arsenic.

Next was a brief course of  ‘the red stuff’ and the anti-puke infusion that went along with it. In the middle of all of that, I had a MUGA scan (heart function test), that showed my heart was on the edge of failing…so no more of the red stuff.  But my hair fell out again… leaving a sideways Mohawk from ear to ear. THAT had to go… I think that’s when dad bought me a new hair clipper, and came over and got rid of that (he did the trimming, and took the clippers back home with him in case I got some wild idea to mow my own hair, and end up slicing up my head). It looked like I had a dead animal lying across my scalp.  I never minded being bald- but the quasi-PETA poster look had to go.  After that, my hair grew back slowly, and straight UP for about 3 inches before it finally fell over and looked like hair. Before that, it was like a porcupine and chinchilla did the wild thing and left their offspring on my head.  Bah.

After the arsenic and red stuff, I had to take three different pills (ATRA, M6Mercaptopurine, and methotrexate) in various doses for one year.  I made it about 11 months.  I hadn’t expected the muscle and joint pain from those medications. I’m not one to read up on every side effect known to man when I’m taking a medication.  Even as a nurse, I figure if I know the really bad stuff that can happen, I can live with the rest. Just get enough information to not end up dead.  Inconveniences in order to survive seemed a reasonable trade off.  I thought I’d torn my right rotator cuff- my shoulder hurt that much.  My back and legs felt like I’d been flayed with a serrated machete, and rocks pressed into my bones.  I told my doctor I’d tough it out; the hydrocodone was a joke, but if hurting meant staying alive, I’d put up with it. He said I’d had enough.  He’d been right about everything else, so I’m trusting that it won’t matter that I didn’t have that last month’s worth of those 3 pills.

So I guess that’s why I hate cancer.  The memories aren’t good! I’m still in the first year of monitoring post-chemo, and will have routine bone marrow biopsies and lab work for the rest of my life- though the frequency will diminish. In April 2015 I will be considered cured. I do have some days when I wonder if I’ll be lucky enough to not be re-hospitalized for relapse.  There’s always that ‘is it really gone?’ in the back of my now hairy head.

And yet, I’m so incredibly fortunate and blessed to have been diagnosed with a cancer that can be ‘fixed’.  I’m not unaware of that.  My outcome is expected to be excellent, and I’m very aware that I could have been long gone had it been a different subtype of the same leukemia.  I don’t take anything related to my treatment for granted.  I know people may find my anger unjustified… but we all deal with cancer in our own ways. I can’t stand hearing about it in a vague, disconnected sense. But when I know someone, I want to be a support for them, because I DO get it.  I just find it too personal to tolerate the ‘poster people’ for cancer. I wish them ALL the best… but just not in my face.  Maybe this is offensive.  Fine.  But it’s honest, and it’s mine.