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.

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. 

Mourning the Old Me

Disability of any kind is a thief.  It takes away being considered as valuable as other humans. It steals identities (my existence WAS being a nurse). It robs people of a sense of purpose and value.  It is a constant reminder of what was.  And, no matter how hard I try to figure out some way to still be that younger, healthier (though the health stuff started decades before my body finally pooped out), and active person, my body says ‘nope- can’t do it’.  I’ve had to adjust to a new normal- and I haven’t been that good at it. I have days when just getting from morning to bedtime is a struggle emotionally and physically.  I miss my old life.

I do realize that I’ve got a lot to be thankful for. My body is essentially intact (I’ve got all four limbs, and they operate moderately well). I can still think, though I do get a bit foggy at times. My sense of humor is intact. I have a decent home (apartment). I love my dog- crazy as she is ❤  I have my doll collection, gemstones, and books.  I’ve got a great computer, and a lot of cable TV channels.  But I’m not ‘whole’ when my body is broken down and examined.

I look relatively intact, which is great- but it also gives the impression that I’m ‘fine’.  What people don’t see are the endless days of chronic pain from fibromyalgia, degenerative disc disease (most of spine), bone spurs on my spine, osteoarthritis, and chronic headaches.  Methadone and Norco don’t give much relief.  I had a neck injection today (steroids and numbing medicine); it lasted an hour.  People don’t see the dysautonomia symptoms (though they might see my ice vest that I have to wear to avoid passing out in public when I get overheated- which happens in any environment over 55-60 degrees).  Indoors with the heat on is horrible- I can’t go to appointments or to anybody’s house without being packed in ice.  Nobody sees the nocturnal temporal lobe epilepsy, or the chewed up cheeks  and funky ‘hit by a truck’ feeling I get when I wake up after them.

Nobody sees the  struggle to just get basic chores done.  Going to the grocery store is agonizing, and I’m slow, so I go in the middle of the night. It’s cooler (still wear the ice vest), and fewer nasty people are there to sigh loudly, in what sounds like disgust, as they try to get around me. I stay over to the side as much as I can- but at night, I don’t have to deal with them.  Getting things in from the car to the kitchen is very painful. I’m done for the day after that.  I get paper goods and cleaning supplies mailed from Walmart.

People don’t see that getting dressed is a careful dance of getting the clothes on and not losing my balance.  I don’t ‘bend’ well.  Socks are a major problem.  Now, with this crazy thing going on with one of my neck discs, using my left arm is getting harder. And I can’t use it for moving or carrying things as well.

My apartment needs to be thoroughly cleaned, but it hurts way too much for me to get after it with any sort of real productivity. I can get a small area done here and there, but not what I ‘approve of’, and not like I used to get done.  My kitchen floor is disgusting by the baseboards.  I’ve decided I will do six inches of it at a time with a Mr. Clean Eraser.  I have things I’d like to get donated to charity, but I can’t move the boxes.  I need help, and am hoping that the people from a church who agreed to help will pan out.  I’m hoping.  A lot.

Looking at me, I look ‘abled’.  If I move, it doesn’t take long for someone to see that I’m definitely limited, and some things are just not possible anymore. It bothers me every day.  I want to be more useful. I want to be of value somewhere. I want to be missed if I don’t show up.  I want to have something someone else can benefit from (nursing skills).  I want my old life. It wasn’t perfect, but I was functioning at a level that kept me employed.  Knowing that the last place I worked at found me more of a liability than an asset  hurts (they had to call an ambulance at least 10 times in about 2 months at the end). They had nothing I could do within my limitations.  Being unconscious isn’t good for a resume’.  I had a good reputation as a nurse when I was in Texas.  When I moved back here, the dysautonomia and seizures got too bad.  I wasn’t worth anything as a nurse.  But I’ll always identify myself as being  a nurse. I keep my license current.  I got that license 27 years ago.  It’s still mine.

And yet, I try to look at what I have. I’m not homeless (which I probably would be if I had to rely on Social Security alone).  I pay around $500/month (MONTH) in Medicare premiums and co-pays- but that’s better than nothing. (Medicare is not free by a long shot).  But, I don’t have much leftover for much ‘fun’ stuff.  This month, I got some good bread- and I’m so happy to have it.  I’d love to get more fresh produce on a regular basis, but it’s not possible. But I get by.  I’m not eligible for the $133.00/MONTH that food stamp recipients get… how are people supposed to eat ‘lean’ foods  on that?  Healthy stuff is expensive. I’m trying to get blood sugars straightened out after what chemo for leukemia did… So I do the best I can.

I miss what was.  I have days when accepting this ‘new’ normal is really hard, and I don’t do it well.  But, it’s what I have to accept- and I’ve got to figure out how to be of value in some other way.   I believe that God has a plan for all of this- I won’t pretend I ‘get it’ yet. But I do have faith that for some reason, my life is what it is- and that I can be used to help others. Or it would be in vain.  I won’t go there.  I’ve survived too much to just be some joke. I want to be able to help people who have been through or have similar stories. I want what I write about the rape I survived to be of some value to someone else who has been too scared to talk about what happened to her.

I have to really accept that I can’t do what I used to do, and just figure out ways to do what I can to continue living independently, and with relative quality of life.  I’ve got the dog- she helps a lot.  And I do have people who care about me. I really don’t have social contacts- though I’m rarely ‘ok’ enough to meet someone somewhere.  I do have much more to be thankful for than the ‘disasters’ that have come to be no big news when they occur.  I watch the news, and realize that I’m fortunate.  While it’s not a competition, my life is worth living, even though I’m not ‘intact’…my challenges are still valid reasons for frustration- but in the long run, I could be doing a lot worse.  Some days  I remember that more than others. ❤

 

The Wild Thing With Wrinkles

For a couple of years, I did MDSs (Minimum Data Set assessments in nursing homes/SNFs- mine were used to determine Medicare reimbursement rates and care plans for SNF-skilled nursing facility- patients who were generally there for rehab and then to return home; some did end up staying permanently) in a facility that was in a town with a couple of ‘sister’ facilities within the same corporation.  We were ‘separate but friendly’. They were still competition, but part of the same overall corporate bottom line.  One of those facilities had been going through a period where the DON (Director of Nurses) was the only RN in the building… ever. So she never had a day off, and was always on call. This went on for several months (I would have bailed, God bless her). One weekend, she had asked her administrator if one of us at the facility where I worked could take call for the weekend for her- meaning if there were problems requiring RN intervention- or at least notification- someone else would do it. She needed a break.  Because of health issues and medications, I didn’t take call at the facility where I worked  (and the need to do the MDSs 5 days/week; the deadlines didn’t allow for days off following having to work the floor if staff calling in sick needed someone to cover their shift), I agreed to take call. I felt bad for their DON, and could respect the need for some time off.  I didn’t know the staff or residents over there, but knew if I ran into something strange, I could notify my administrator who could contact their administrator.   I’d be on-call from 3 p.m. Friday through 7 a.m. Monday. I held my breath and went home.

At 5 p.m. on Friday, I got a call. Two hours in… this wasn’t good.  One of the nurses was upset that one of the male residents wanted to have a ‘conjugal visit’ with one of the female residents.  OK.  And the problem was???  She didn’t think they could do that. I asked if they were both cognitively intact, and had the physician statement saying they could act on their own rights. Yep. They both did.  In that case, they were aware of their actions, and were able to make those decisions. (Had one or both of them been cognitively impaired/demented, then that is a totally different situation… no diddling in the nursing home).  She double checked my answer- I told her that it was their home…they had the right to get busy as long as they both were capable of acting on their own rights.

The nurse was still uneasy about the whole thing. She asked about the roommate. I told her she needed to find a way to keep the roommate busy, and discretely ask her to allow her roommate some private time, or find a room where the two horny ones could have some privacy.  She needed to put a sign on the door that asked everybody to knock before entering (and wait for an answer !), and not act like anything was going on that required some sort of national security clearance. They were having sex, not discussing Pentagon secrets  (though in this day and time, those lines are blurry).  The nurse was still not comfortable with the whole thing.

She told me that the horny female resident was a double amputee (legs). I wasn’t sure how that mattered given what they were wanting to do. *scratching head*  I asked her what her concern was… the response: “She doesn’t have LEGS!”.  Last I knew, legs weren’t mandatory for doing the wild thing.  I told her to have the CNAs (certified nursing assistants) help the lady into bed, make sure she was safe, and leave.  Finally, I told her that if anybody had any problem with this come Monday, tell them I’d given the OK since both residents were able to make their own decisions, and that it was their home.  They had the right to intimate relationships… legs or not. I’d heard our social workers and consultants discuss various ‘rights’ many times. I was comfortable with my decision.  Let ’em have at it.

During this whole conversation I was thinking ‘it’s 5 p.m. on Friday, and I’ve got sixty-two more hours to go….’.   I was doomed. But, the rest of the weekend was eerily quiet. NO calls from the nursing home.  I hadn’t heard of any disasters on the news involving a Hill Country nursing home, and my administrator hadn’t called me  with any concerns from their administrator.  I had wondered during that phone call on Friday if they were yanking my chain to see how I’d respond, but sometime later, I think I remember hearing that the two residents involved in doing the wild thing were, in fact, a ‘couple’.

That next Monday, back at the nursing home where I worked, I was asked how being on call had gone, and told them about the wild sex questions. They all laughed.  It was funny, but more importantly, the residents weren’t stopped from being able to make decisions in an environment where nearly everything was decided for them.  The alert, cognitively intact residents of any facility can’t be ‘banned’ from living their lives as they so choose. If they are safe, it’s not up to me- and if they’re not safe, and can act on their own rights, I have to do what I can to make things safe for them.  I don’t have to agree with their decisions (no matter what they are- sex or otherwise), but I’m not permitted to impose my ‘rules’ if they are more restrictive (or permissive) than what the state guidelines permit. Nursing home residents have rights. The facility is their only home; it’s not like they can take off to the Holiday Inn for a few hours.  I found it rather sweet that those two had found each other in an institutionalized setting, and actually wanted some ‘privacy’.  And, their DON got some time off. 🙂

Dementia Wins By A Landslide !

I worked in various nursing homes during the years I worked as an RN, starting in 1985.  I worked as a ‘floor’ nurse, charge nurse, supervisor, and administrative (desk) nurse.  Nursing homes really are quite delightful places to work, and while nursing home nurses are often looked down upon by hospital nurses (I’ve done that kind of nursing too), the skill set required is extensive.  They have to have a bit of knowledge about all medical specialties (except obstetrics, though one gentleman did scream that he was giving birth to a calf in an emergent situation…my guess is that most people in a 3-4 block area knew of his distress; his doc felt that Haldol was a good ‘post-partum’ drug… I don’t like Haldol for the elderly; it was designed for schizophrenics- but it did quiet him down).  There are the medical issues that put people in nursing homes to begin with, and then there are those folks with dementia who can be so totally heartbreaking to watch…or a source of some humor. If we didn’t chuckle, we’d weep.  The following are from some decades ago… some of the rules were a bit ‘different’ back then, though nobody ever did anything to make the situation worse.

One woman I remember was very distinguished in her outward appearance. She was always ‘put together’ in how she dressed and in her appropriate greetings of people she met in the halls, but had no clue about hygiene or changing her clothes regularly.  Usually the certified nursing assistants (CNAs) could get almost every resident into the shower without too much hassle, but this lady was persistent in her refusal.  Nursing home residents have the right to be sloppy…when they are coherent enough to know the risk/benefit of their decisions.  When a green cloud follows them, and people fall like dominoes in their wake, something has to be done.  That’s when the administrative nurses have to jump in and figure something out.

The first thing to do was notify the family and get their permission to bathe Mrs. Cloud, even if she refused. They were the legal guardians since she couldn’t make decisions, so that wasn’t hard- they were thankful we were looking out for her (they were also out of town, so couldn’t be ‘hands-on’). The next thing to do was to figure out a plan.  The assistant director of nurses (ADON) and I were the ones who somehow got blessed with this task assignment, and thought we had a pretty good idea of how to get the job done. We got Mrs. Cloud into her private room, and carried on some generic, though tangential conversations as we got her overcoat off, and then talked about getting her clothes washed (that was usually less threatening than actually talking about showers up front).  OY.  We got the coat. We were doing pretty well with the dress, but getting down to her slip, and undies, we noticed that she had about 4 pairs of caked-on pantyhose. Each of those pantyhose required getting Mrs. Cloud back on her bed, ‘scootching’ the hose down, and then removing them…. x 4. Between each ‘scootch’, she’d bolt up and try to run off, so we’d have to get her seated again, then lying back on the bed so we could continue ‘scootching’.   The ADON and I were sweating by the time that was over.  The slip, bra, and undies were a piece of cake after the pantyhose circus.

So, we get Mrs. Cloud into her shower- after all, if we’re going to clean her clothes, why not get a nice warm shower (sounded like a good line)… she wasn’t happy, but went for it. We had the towels and washcloths ready. But…. oops. I forgot the body wash.  The  poor ADON was left wrangling Mrs. Cloud in the shower as I sped out of the room to find body wash.  I found what we needed, and we finished the shower from hell with no casualties.  A few minutes later, I saw Mrs. Cloud in the hallway, all fresh and sans cloud-o-funk, and she greeted me as if she’d never seen me before- very polite with a superficial smile. She remembered nothing. Crickets.

I also worked ‘the floor’ at night for a while.  One night, another confused little lady was wandering in a sort of frenzy, and was visibly tired. She had a sleeping pill ordered, so I offered her one. She wouldn’t take it.  I opened up the capsule, and mixed it with a tablespoon of orange juice in a one ounce plastic ‘shot glass’ medicine cup. I offered her a little nightcap, and she was so happy to take it.  I had poured some plain orange juice to get rid of any funky taste in her mouth, and she looked at me- dead serious- and said “Oh, Honey- I can only have one”.  She traipsed off to bed and finally got some sleep.

Another night, I was doing my routine work on the 11-7 shift, and one of the CNAs comes flying up the hallway off  one of the ‘pods’ (a grouping of rooms), calling my name as if she’d just witnessed Jack the Ripper field dressing a dozen deer in the back room.   I immediately went racing down to meet her, and follow her to the room in ‘distress’.  I stopped cold when I saw the elderly gentleman (also confused as all get out) sitting completely naked, bolt upright in his bed, grinning from ear to ear with his sheets and blankets all over the place. He was ‘splashing’ the gel from his gel mattress (as much as someone can splash something with the consistency of applesauce).  He had managed to puncture the mattress (used to protect skin), and had that gunk all over the place. It was hysterical.  I didn’t want to laugh at him, but it was hard to maintain anybody’s dignity at that moment. He was having a ball !  We got him cleaned up, and my only comment to the CNA was the need to differentiate between something that is life-threatening and something that is an inconvenience, but essentially harmless.  We didn’t need blood curdling screams in the middle of the night for a little  gunk on the floor (well, OK, it was a lot of gunk).

We also had a  hoarder.  The facility towels and washcloths, junk- didn’t matter. And she was possessive.  Anybody who went to clear out the stuff for laundry to rewash had to have someone else ‘stand lookout’, or the poor ‘lone’ retriever would be yelled at for a good 3-5 mintues, until the hoarder forgot why she was mad. One afternoon, one of the activity aides found a family of mice (mama and babies….LOTS of babies) living in a leftover popcorn bag (from movie and popcorn day), and a cake in a plastic bakery container that was so old that nobody could figure out the original flavor and/or color.

One of my favorite little ladies was superficially appropriate, but 2-3 minutes into a conversation there was no doubt that some bulbs were dimming. She was generally cheerful, and had a buddy she hung out with. She also was not fond of showers or combing her hair (think Einstein plugged in to a household outlet), but would let me check her skin weekly (per required protocols everyone got weekly skin checks- head to toe). The CNAs and I got into a routine of doing the skin checks in the shower room, and since I needed to see ALL of her skin, she’d agree for the CNAs to ‘hold’ her clothing…funny how the shower would get turned on, and she’d get nice and clean- she was always very agreeable once she felt the warm water. One day before getting showered, she walked past one of the mirrors, and saw herself. She literally gasped loudly and stepped back from her own reflection… she looked at me and asked about a hairbrush.  At least she still knew it was her own reflection- some lost that.

Nursing homes get bad reputations, but there are so many nice ones. I had the chance to work at two that I really liked, each for about 2.5 years.  The residents become like extended family, and some of their families also became part of the daily routine.  I’ve worked with CNAs who have been at the same facility for over 30 years…when offered promotions, they refused, not wanting to leave ‘their’ people. ❤  I’m incredibly thankful for the coworkers and residents I met when I was working at those facilities. 🙂

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.  ❤

The Psychotic State University School of Nursing

I must say that the vast majority of nurses I’ve worked with over the years have been wonderful.  Some were a bit on the side of displaced sorority sisters in need of a house (annoying and way too old to be stuck in an early 20-something mentality). And there were some that just left me with my jaw dropped through to the floor below me or backing away in fear.  The graduates of Psychotic State University’s School of Nursing. A frightening lot of the eternal mystery of  WHO LET THESE PEOPLE GRADUATE?  I understand someone needing to be at the bottom of the class, but puhleeze….

One of these miracles in self-survival worked with me on an acute neurology floor. Most of our patients were at least partially dependent for just about everything. Everybody helped each other out when moving these patients up in bed, cleaning them up, or transferring them to recliners or chairs.  One ‘special’ nurse (I’ll call ‘J’) was nothing short of mind-boggling.  I’d gone in to help her move her patient up in bed, and since we all had helped each other do this a bazillion times, there was an unspoken ‘dance’ in getting the job done. Put the side rails down, put the head of the bed down, move the patient up, put the head of the bed back where it had been, make the blanket look spiffy, get the side rails back up, get the call light within reach, and leave. Done.  Depending on how tall the bed was, we’d raise it to a ‘working’ height (to save our backs).  Anyway, I had started putting the head of the bed down (it was still moving) and noticed ‘J’ fiddling around on the other side of the bed, mumbling to herself.  I asked what she needed and she replied “I’m trying to put the head of the bed down.” 😮   I’m sure my eyes bugged a bit.  Another night, a bunch of us had decided to order burgers from a nearby place, and I asked ‘J’ if she wanted to order anything. Her reply:  “I don’t like Chinese food.”  Alrighty then….no Chinese burgers for ‘J’.  *shaking head* While she never smelled of a particular herbaciousness, there were suspicions.

At this same hospital (which really was a nice place to work- these examples were the flukes of nature that joined us for a period of time), there had been some budget cuts and an associated long term care portion in a free-standing building across town was being closed down permanently.  The staff nurses there were being dispersed throughout the hospital, ready or not.  Long term care nursing is its own animal.  I’ve worked it, and loved it- but it is NOT the same as acute care nursing.  The skill set is much different- and in some ways much more varied than the specialty floors set up in that hospital.  Well, our ‘gift’ from the defunked facility was nearly a fossil herself. She had to be older than many of the patients she took care of.  She was pleasant enough, and easy enough to get along with, which was always tricky in a group that had worked together for any period of time and knew each others’ strength and weaknesses’.  But she was a bit ‘thick’.  Normal conversation seemed to be a bit of a struggle for her. And her hearing was fine. Evidently normal nursing skills were also a bit difficult.  We had a policy that all insulin doses were double checked by another nurse.  One day she asked me to check the dose she’d drawn up.  No problem. Glad to help.  I nearly passed out when she showed me a 3-cc syringe with the insulin in it.  For those not in the medical loop, insulin is drawn up in very specific insulin syringes with 1-unit increments marked on the side of a ONE-cc syringe.  I was dumbfounded. I think part of my jaw may still be on that hospital floor.  I asked her how she knew how much insulin she had in that thing.  She had crickets and the deer-in-the-headlight thing all going on at the same time. She didn’t know.  And it didn’t seem to bother her that she was about to kill someone or leave them in a vegetative state. I’m not sure exactly what I was supposed to check, but I checked my butt on over to the charge nurse after taking the syringe away from Nurse d’Permanent Sleep.  Oy.   Needless to say, Einstein was sent for some ‘remedial’ education. We never saw her again.

At a drug/alcohol rehab place I worked at, many of the nurses were primarily psychiatric or chemical dependency rehab nurses. No problem since that’s what we dealt with %99 of the time, and the medical complications that came up were usually pretty specific to detox.  But…we had patients who had some ‘side effects’ to their years of drug usage that were emergency situations when they happened.  One weekend night nurse (a ‘traveling’ nurse- who were also good for the most part) was giving me report one morning about a new patient who had a high fever earlier in the shift (let’s say 103 degrees for some reference point).  This nurse was SO proud of herself that she’d been on top of things with Tylenol, and the guy’s temp was now hovering in the 97-degree range. That was NOT good news. When someone becomes septic, the body fights with a fever as a way to help heal itself; when the temp goes sub-normal it means the body can’t cope any longer and is decompensating. The train to dead has left the station.  I couldn’t get out of report fast enough to see if the guy was even conscious anymore.  He was, but looked BAD.  I got the OK to send him to the local ER to get labs done (and I couldn’t imagine them not admitting him to ICU). I was pretty sure he was in septic shock.  The local ER didn’t like drug patients, and sent him BACK to us after drawing the labwork.  Scared me to death.  I’m not sure what we did that day to keep him from dying, but the next morning I got a call from the hospital telling me his blood cultures were bad. Ya think?  He was an IV drug user with a massive infection around his heart.  The drug rehab doc arranged to send the guy back to the hospital where he stayed for a couple of weeks on IV antibiotics before returning to complete his drug rehab, with another 4 weeks of IV antibiotics every 3 hours (at a facility where the nurses weren’t used to giving IV meds, or dealing with a PICC line- I didn’t mind).  He was a great guy who got a second chance, no thanks to the Tylenol dispenser.  He should have been shipped out while his fever was high.  High fevers were not typical of what we used to see, and in an IV drug user should be a huge clue that something is wrong.

One of my nursing student compadres was ‘interesting’.  He reminded me of Waldo from ‘Where’s Waldo’ fame, sans striped clothes and beret.  Tall, skinny, huge glasses, and screamed “I’ve got uber-geek genes’. But he was very sweet. I got paired up with him to do a report on riboflavin during our Nutrition class. We had arranged to me AT the library at a specific time.  I got there a bit early, and waited.  The arranged time came and went.  OK, maybe he got hung up somewhere. SO I waited a bit longer. Nada.  I peeked inside of the library, and he wasn’t there. I wandered around, looking around the library and inside of the library, and never found him.  The next time we had class, I asked him why he hadn’t shown up. He looked baffled and said “I was there !  I was in the back in one of the cubicles.”   Really?  I was supposed to find him in the library’s equivalent of a cave?  I asked him if he crawled in the trunk when someone told him to meet him at the car…   I did my own report, and got an A. 🙂 This guy- sweet as he was- didn’t make it through the first class that newbie RN students take (Fundamentals of Nursing).  God looked kindly on patients everywhere.

I’ll think of more ‘special’ nurses to write about.  I learned something from each of them, and wondered how they ever got through the nursing schools they went to, or hadn’t been reported to the nursing board for being dangerous (even if unintentionally- they weren’t ‘killer nurses’, they were idiots).  I was scared for their previous patients; maybe they were no longer able to complain about the nurses in question… 😮