Cancer’s New Normal

When I was going through the initial induction chemotherapy after being told I had AML/subtype M-3 or APL (acute promyelocytic leukemia), I just sort of went with the flow. My emotions were blunted- partly from fatigue, and partly from not really having the time to wrap my head around the idea of cancer before chemo started.  I was admitted from the ER after having some shortness of breath, and didn’t leave for 6 weeks.  I did have some warning that something was wrong, but I didn’t know what until I was admitted to the hospital oncology floor, and the bone marrow biopsy was done.  It was a whirlwind of life changing forever.  And yet, I’m very lucky.

I’ve written about Jeannie Hayes (the local NBC affiliate anchorwoman) who had 2 days between diagnosis and death. This week a friend of mine had a nephew who was OK on Thanksgiving, felt a little bad over the weekend, and then went from the local ER to being life-flighted to a children’s hospital; he was in a coma by the time he got there…and died the next morning. He was 11 years old.  The information I’ve got tells me it is the same thing… APL.  Nobody had a chance to even get used to the idea of cancer before they were making funeral arrangements.  That’s two families (and their friends) who had their lives changed forever from a disease they barely had time to learn how to pronounce.  Two people in the last month who died within 2 days of diagnosis, from the same thing that I survived.  It’s shaken me up a bit…. I feel so badly for those families, especially since APL is one of the most curable leukemias if its caught early enough.  Mine was caught purely by ‘accident’ with annual diabetic lab work.  I had no symptoms telling me to get checked out.

I never spent much time before now looking at how fortunate I really am.  It was simply what was happening, and I had to deal with it. But now, I’m gaining a whole different perspective on what very easily could have been the end of me.  The average survival from the onset of the disease and death (for those who are undiagnosed/untreated) is about a month.  Many people are diagnosed during autopsy. It’s that fast.  I didn’t get in to see an oncologist for 2 weeks after that bad lab work, and that was because someone else cancelled- I had originally been put off for over a month. I’d seen my lab work. I knew I needed to get seen, so I had my doc make a call and get me in sooner.  Then there was the delay of another week for the bone marrow biopsy.  I didn’t make it that long before I went to the ER with breathing problems.

My chemo lasted for a total of 19 months, with the IV stuff in the hospital, IV stuff (arsenic) as an outpatient on telemetry in the oncology unit, and then a year of ATRA  (all trans retinoic acid- think jacked up vitamin A), methotrexate, and M6 mercaptopurine- all pills. They have all had effects that have lasted longer than actually taking them.  My blood sugars are just now getting back into some decent range (I’ve been off of all chemo for 14 months). My weight is horrible (I gained a lot). And my skin is still kind of weird. BUT, I’ve been in remission since the end of induction.  NO relapses.  I’ve had a few annoying things (shingles, infected bug bites on my face- or that’s the guess, etc) that delayed things a few times. The muscle and joint pain towards the end of the year on oral meds was pretty brutal, but if it meant I’d survive, I could put up with it.  I actually got out of the whole thing fairly unscathed.

Now comes the rest of my life, when any little bump in the road health-wise has my cancer radar spinning like an EF-5 tornado.  I’ve got a bunch of other things going on with my health, so I’m never sure when I should pay attention to something, or when it’s just my life as I know it with a little hiccup. Last spring, I had a mammogram, MRI of my brain, colonoscopy, upper endoscopy (EGD), skin exam and biopsy, and yearly (ha !!) girly exams.  They all came out fine, for which I’m very thankful.  I’m waiting to feel relieved and like I’m really going to be OK for the long haul.  The official ‘5-year mark’ doesn’t hit until April of 2015.

And I’m not sure that’s going to make me feel really in the clear.  I watched my mom have bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- and then chemo and radiation. The radiation to the brain left her with dementia for most of the 17 years she lived without additional cancer.  Every time, they said they ‘got it all’… is that even possible to say with complete certainty?  I don’t mean to sound like a total buzz kill for those doing well- not at all.  I’m a nurse. I’ve taken care of metastatic cancer patients, and seen them go through hell.  I just need to work out in my own head when to have things checked out.  And how to feel it’s OK to expect a future (disabled as I was before the leukemia).  And when to relax a bit.

I don’t have anything that’s bugging me in a suspicious way- I’ve just never dealt with the cancer to begin with. I put on a smile, drove myself to every one of 50 doses of arsenic, and the weekend Neupogen/Neulasta shots (to boost white cells), showed up for my appointments on my own (even the bone marrow biopsies- drove myself home 20 minutes after they were done), and never really thought about how close I came to being six feet under.  I absolutely understand that my prognosis is excellent. My most recent genetic marker studies were perfect. NO sign of the translocation of chromosomes 15 and 17.  I’ve been rearranged back into the right genetic sequence (how weird is that? !).  I’m a survivor.  I’m doing well- I get it… and I understand cancer isn’t a predictable disease.  I feel a sense of responsibility to have my apartment set up as simply as possible, clear out some clutter, and be prepared for anything that I can, to ensure that I can live independently as long as possible.  That may be another 30 years with nothing else mucking things up.  That’s the ‘plan’…but cancer doesn’t respect plans.

This all sounds so much more depressing than I really feel- to me it’s just reality.  I need to be as prepared as I can be, while not being tied to a diagnosis that has pretty well been treated. Relapse can still happen, but my new oncologist is checking genetic markers often.  He encourages patients to get things checked out if there’s any question.  He ‘gets’ the emotional component of having the ‘big C’ and knowing that it’s a mind warp for a while.

The news anchor and now the 11 year old have opened my eyes up to how blessed I am to still be here to even be a bit freaked out by their deaths.  I can’t imagine the pain their families’ are going through. No warning.  My prayers go out to them.

I need to figure out how to live better within my physical limitations. I’m still very fortunate.  Now just to stop being a bit scared.  A lot.

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.  ❤