Intervention and Treatment Memories

I gained a lot of weight during the time I was on chemo for leukemia.  It’s been very hard to get rid of it, as I’m also perimenopausal, and limited physically as far as what activity I can safely do.  Add a history of eating disorders, and the idea of losing weight is actually rather frightening at times.  I guess in some ways that’s good, since I don’t take for granted how bad things got the last time I relapsed in 1995-1996.  It took years to put my life back together so I could eat normally, and longer than that before I could accept my body without being disgusted by it.  My oncologist told me just to be thankful I’m alive (which I am), and don’t focus so much on the weight.   Easier said than done.

The last time I started to relapse coincided with being diagnosed as diabetic, and suddenly having to account for everything that passed by my lips. I lost about 50 pounds over several months prior to, and after being diagnosed (not noticeably abnormal ), and was holding my own without any eating disorder behaviors (purging- laxatives were my vice, restricting, excessive exercise, etc).  I ended up with pneumonia later that year (November 1995), and lost quite a bit of weight in a few days, and the sensation of being ’empty’ and seeing the scale numbers drop was enough to trigger the old eating disorder stuff that started when I was in my late teens and twenties (early 80s).  I’d been free of the anorexic end of things for many, many years.  It didn’t take long for being around food to cause anxiety, and for numbers on the scale, calorie books, and blood sugar meters to drive my entire life.  I lost another 50 pounds in about three months.  Other people noticed.

I worked at a drug and alcohol treatment center as a detox RN (and weekend charge nurse of sorts- if anything was wacky on campus, I had the last word if it was OK or not, though with serious stuff, I had plenty of folks to call for feedback and input) , so my coworkers were very aware of what addictive behavior looked like.  And denial.  And refusal to listen to rational feedback.  I coasted for a bit, but by the time a formal intervention was done, I was in bad shape.  Eating anything was excruciating.  Every night, I was asking God to just let me wake up in the morning.  And I literally crawled up the stairs to and inside my apartment.  Chunks of skin fell off of my heels.  Things weren’t good.

The day of the intervention was on the day after having worked a double shift.  I got off at 7 a.m. and went to rest for a while in one of the cabins my coworker had (she lived a few counties away and stayed on campus when she worked- we worked weekends and Mondays) while she went to do some discharge summaries, which I planned to do as well once I got some rest.  She came and got me at around noon, and asked me to come with her to get something to drink, and also drop off something in the Operations Director’s office.

I never saw it coming.  Inside the Operations Director’s office were my boss, her husband (who also worked there with the clinical staff), the medical director, day charge nurse, and several other people, including clinical staff who I worked with as well. There were 8-10 people there.  When I saw them all in the office, I knew what was going on.  I was terrified, but also wanted to stop fighting the wars in my head over something as ‘stupid’ as food.  It’s never about food, but that was what was going on mentally.  I was told of the plan to take me directly to my apartment to pack (supervised), then driven to the San Antonio International Airport to be put on a plane.  Someone would take care of my dog (that’s a whole different story), and my car could stay on campus where it could be monitored.  I’d fly to Houston, where an outreach employee would meet me, and be sure I got on the flight to Los Angeles.  That was the only way I’d be allowed to come back to work. What I hadn’t told them was that my primary doc had told me that I probably wouldn’t last a month, tops, if I continued as I was.  Their timing was perfect.  I wouldn’t have been ready before then.

So, off to Los Angeles I went.  Scared to death… I knew they made people EAT in eating disorder treatment.   But, I figured the sooner I got with the program, the sooner I’d get out of there.  So, in a feeble way, I’d begun to surrender on the plane.  By the time I got there, I was so exhausted from the double shift, then the intervention, traveling, etc, that the guy who picked me up thought I’d OD’d on something that made me semi-coherent.   I was just flat-out tired, and told him I was there for not eating (I never looked like I was starving as much as I was- curds of cottage cheese were something I worried about).  I was also exhausted from the battle fatigue from what had been going on in my head for months.  I’d been ‘confronted’ a couple of weeks earlier by a former coworker from another place I worked, about my weight (she was dropping off her child for treatment), and she asked if there was anything wrong with me.  I didn’t know how to answer.  It didn’t register that losing fifty pounds would be visible to anyone.  Seriously.  That jarred me a bit, but the intervention had the biggest impact.

I went to the treatment center in California (they no longer ‘do’  eating disorder treatment, thank God), and it was horrible.  The facilities were pleasant, and the food was really good (which amazed me, since I didn’t like much of anything, but all of the fresh produce ALL THE TIME was great) !  A few of the staff were decent, but eating disorder treatment it was not.  And the primary ‘assigned’ therapist I had was bad news… I was not allowed to speak about some things that seemed therapy-worthy to me. The ED patients had a table segregated from other patients in the dining room (and we were often like an exhibit in a zoo for the other patients who wanted to see if we ate), and one OA meeting a week (otherwise we went to AA).  That was the ED program. They may have been great for chemical dependency and/or dual diagnosis, but I was a generic eating disorder NOS (not otherwise specified) patient.  They didn’t get that right either.

When I first got there, I was so weak that when I went on the ‘beach walk’, I could barely make it.  Walking in the sand was exhausting, and I was having a lot of trouble even keeping a visual on the rest of the bunch who opted to do that activity.  My jeans were falling off, so they gave me a trash bag to tie two belt loops together, then trimmed the excess so it didn’t violate the safety rules about plastic bags.

The day before I was sent there, I’d packed up a detox patient to go there for more dual diagnosis issues than we generally dealt with at our facility, and then I showed up as a patient. Surprised her !   We sort of stuck like glue together, trying to make sense of the place.  Then another patient, AND person who worked where I worked showed up… They were both dumbfounded about the detox and treatment  process (so had a lot of questions), but come to find out one hadn’t told them all of the things she’d been taking. I told her she needed to fess up for her own safety.  They’d come to me (their former nurse) before talking to the staff there.  I wasn’t licensed in CA, and I was off the clock out there- but I was glad to be of some support.  We all needed each other out there.

There were a few of us ED patients, and we stuck together between groups, wondering where the ED services in the brochure were.  But, I managed to survive 36 days out there. The last 10 days, I had a virus of some sort, and wasn’t allowed to participate in any groups or meetings (but wasn’t sent home). They’d taken me to an ER, where they had me pee in a cup, and then decided I had a BLOOD virus- from a pee test…  The group would literally come to my room at the end of the session to say hello.  I could go outside and sit in the sun (or smoke), but no activities anyone else was doing. I could go to the dining room with everyone else, so it wasn’t like they were worried about me giving bugs to someone… but whatever.   I had a few roommates, some ED and one alcoholic,  (at different times) who were nice enough.  But I left there feeling totally unprepared for going home and making it OK.  I had no aftercare.  I was more scared leaving than when I got there.  But it was a great motivator to not want to ever end up in another situation like that was.

One really funny thing happened one evening, during my ‘banishment’ from groups, when I was outside  smoking.   One of the techs (fondly called the ‘clipboard jockeys’) came running around the corner asking if I’d seen the REST OF THE PATIENTS.  All of them !  😮  I told him no, and he was sure I must know something, even though I wasn’t allowed in groups. I really didn’t know. Come to find out that the rest of the patients were doing the evening community group, and after the tech checked everybody off of his clipboard, they went to another room to mess with him, and hide.  Eventually, all showed up, and the tech laughed, but I can imagine the thoughts going through his head about how he’d lost the entire lot of patients, except the puny one not allowed to go to groups.   That would have been a serious pile of incident reports and phone calls.

In the meantime I’d been told that I would NOT be allowed back to work where I’d been working at the time of the intervention until the director of nurses OK’d it (she had some serious boundary issues, and was also a neighbor of mine who had been in contact with my therapist in the treatment center- acting like some sort of information verifier.  The treatment center wouldn’t let me talk about being raped until my boss had reported to them that it had actually happened when she found the info and news clippings in my apartment when I was gone). Anyway,   I really liked that job, so that was a huge loss until I showed I was doing well enough to come back.   Eventually, I did get to go back, and stayed another couple of years until things started feeling unsafe with a huge increase in census, and no changes in detox/nursing staffing for several months.    But I’ll always be incredibly thankful that I got to work in that facility.  I learned a lot, and am a better nurse for my experiences there.  I still am in contact with several people I worked with there.

The intervention likely saved my butt, even though I had a lot of work to do ON MY OWN when I got back.  I got every professional book on EDs I could find, and did an ‘as if’ thing.   I looked at what I needed to do ‘as if’ I were carrying out orders for one of my patients.  I had to detach for a while.  Eventually, I was able to make it about me, and feel like I was doing OK. (The one OA meeting/group in town was ‘lead’ by someone who brought specific diets to show to the group- nothing 12-step about it, so I passed).  Whenever I see the show ‘Intervention’ or someone getting nailed on Dr. Phil, it brings back a lot.  Interventions are terrifying, but there was also a huge sense of relief at not having to go it alone any longer.

For those who think it might happen to them, just go with it.  Let everybody talk, and then be thankful that you don’t have to get well by yourself, and it doesn’t have to be perfect.  One step at a time, even if they’re baby steps.  A slip doesn’t have to become a relapse.  It beats being tied to an addiction that wants to kill you !  Things can get better, IF you are willing to let someone nudge you on your way (feels like an emotional sledge hammer, but in retrospect, it’s more of a send-off to the rest of your life 🙂 ).


Just One of Those Months

For the past week and a half, I’ve had some moderately severe jaw pain on the same side where I broke a tooth, and had said tooth repaired, requiring me to open my mouth wide enough to swallow the Hindenburg.  It hurt.  But a few shots of novocaine, and I blew it off.  Until the novocaine wore off.  I’ve been hoping it would just get better on its own, but it isn’t, so I read up on some causes of jaw pain, and ended up going to an urgent care place this afternoon HOPING to get it checked out for being a fractured jaw bone.  The nurse practitioner was pleasant enough, but I’d never seen him, he didn’t know me, and as is common with weekend visits, I got the impression that they figured I wanted pain meds. I have pain meds. I want this fixed !  The intake people asked what pharmacy I wanted (since it’s Sunday), and I told them I  wouldn’t need any prescriptions (I tend to have ONLY my pain management doc deal with my pain prescriptions- keeps things much neater). The nurse practitioner informed me that ibuprofen or naproxen was the best option- which I agreed to without any issues- if this is TMJ- which he determined without feeling my jaw or doing an x-ray.  I felt dismissed.  I don’t go to urgent care places unless I’m pretty dang uncomfortable and need to at least get an x-ray done.  Waste of time.

It’s been a weird few weeks.  I fell about 3 weeks ago, dodging my puppy. It wasn’t her fault- she is just non-stop motion and can turn on a dime.  Fortunately, I landed ‘slowly’ and was able to sort of ease down to the floor, leaving my left side (same side as my jaw pain) the only thing bungled up, and even that was relatively benign considering what could have happened.  I didn’t even drop my microwave entree in my right hand !  But I was sore for a few days.  Maybe I jarred my tooth and jaw.

A week or so after that, one of my teeth (bottom LEFT) broke. I hadn’t noticed it being an issue before- it was simply not there when I was chewing a gum drop.  I found it by gingerly nibbling at the gum drop (too soft to cause a tooth to break), and made arrangements to get it checked- to at least file down the razor edge that was making my tongue hurt like crazy.  Then I got the tooth filled- which is where I had to open my mouth far beyond anything I’d done for decades, if ever.  I felt ‘something’, but didn’t say anything since I wanted the tooth fixed and then out of there.  The dentist is a decent guy- was a former neighbor when I was about 12 years old.  He got the tooth fixed, and I flew like dandelion seeds in the wind. I’m waiting until my dental insurance goes into effect on June 1st for anything major. I finally found a policy (Medicare doesn’t care about teeth) that I can afford and has decent coverage.

But since then, my jaw has been bumming me out, so I got it checked.  I am not pleased with the lack of diagnostics to make sure it’s not broken.  One x-ray would shut me up- I may call my regular doc tomorrow to see about it- she knows me and listens.  I just saw her last week for my disability paperwork review (pain in the butt paperwork for the insurance company).  I’ve declined over the last year.  She thinks that the chemo for the leukemia has pretty much trashed my body- but what was the option? If I didn’t take the 19 months of various IV and oral drugs, I would have been dead within  a week of diagnosis; I’d already had the bad lab work for about 3 weeks, and with APL, people are generally dead within a month if treatment isn’t started.  I had to do it.

We talked about the dysautonomia, and the probability that it’s from diabetes. My blood sugars were outrageous when I was diagnosed (like 389mg/dl for a random check, and an A1C of 10.2).  Nobody knows how long I had been undiagnosed. I was diagnosed with dysautonomia about a year after the diabetes diagnosis, so there’s a really good chance I had the diabetes a long time before it was confirmed.  I’d talked to my neurologist about what else could be done (since it’s a neurological disorder and all), but she didn’t know the cause (and didn’t seem too interested in finding out).  Now, I’m not sure if I should take it up with my endocrinologist, primary doc, or who.  I get tired of all of them, even though they’re all quite kind.  My oncologist tells me to just be thankful I’m alive- and I am. But I do have bummer times when I fell overwhelmed.

Since I’m not working as an RN, I feel so useless.  I have so many physical limitations, even though my brain functions pretty well most of the time. I have brain farts and some memory blips.  Sometimes my word-finding isn’t so great, and I can get emotional over stupid stuff.  And God forbid anybody have the thermostat over 65 degrees, or I panic because I know that I’ll pass out.  I wear the ice vest most of the time when I leave home.  Or, I shop at 2 a.m. to avoid the heat of the day.  I worked nights for years, so being awake isn’t hard.  It’s also nice to not have crowds who are impatient because I’m slow. I get tired of the heavy sighs behind me; I try to stay out of the way- but there’s always some grouch.  Why can’t people just be thankful it’s not them?

Sometimes I get worn out about my spine collapsing (degenerative disc disease), fibromyalgia, arthritis, degenerative joint disease (one knee already replaced- one with a partially torn ACL and medial meniscus that never got fixed because of that pesky leukemia), blah, blah, blah. My primary doc feels that some of the leg pain is from collapsed discs in my lower spine.  If I have ‘known’ collapsed discs in my neck and upper spine, there’s no reason to think they aren’t also in my lower back.  I haven’t had a pain free day since around 1995.  I don’t have that frame of reference anymore. When someone asks me to do one of those pain scales, it’s a joke.  A 5-6 is my normal.  That’s a good day.  I have to make something up to fit their paperwork.

But, I know I have a lot to be thankful for.  Yes- I’m declining. I am having trouble getting normal things done at home.   But, I’m still in my own apartment.  I am not captive to the schedules of some nursing home or assisted living place with employees that would rather work in a landfill.  My mind is still intact (or so I tell myself 😀 ) .  I have doctors that don’t judge me (now that I changed oncologists).  I have a puppy, who is really quite adorable, though she’s going through the ‘el destructo’ phase right now with teething.  But she’s a great little companion, and even though she’s only been here for 2 months, she’s got a place in my heart that isn’t going anywhere.  But some days are just the pits.

So, today I’m whining.  My body hurts.  I feel like a mutant.  A useless mutant.  And yet it could be so much worse.

Loves to play ALL. DAY. LONG.  4 months old now !

Loves to play ALL. DAY. LONG. 4 months old now !

Big girl haircut !!

Big girl haircut !!


Reviewing Mortality

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


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

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.