Dad Went To The Oncologist Today

Over the past few months, my 80-year old dad has been dealing with some health scares, starting with an egg-sized mass in his neck. Several weeks after it was found, he had surgery to remove it on November 30, 2012.  Surgery was considered very successful, as the surgeon was confident that the edges were all well encapsulated, and the mass had been completely removed. But they needed to figure out what had caused this thing. He hadn’t had any symptoms- it was found when he’d gone in for a routine exam to get his thyroid medicine refilled.  He had had two biopsies prior to surgery, and then the pathologist had the entire mass to dissect and tear up, and there was still no definitive answer as to the type of cancer this thing was. They knew it was an extremely low grade cancerous tumor that had actually replaced his thyroid tissue on the right side. They felt very certain that it wasn’t going to have any impact on his lifespan…but they still were not sure exactly what it was.  It had all of the characteristics of a ‘good’ cancer- but that’s about all they knew.

So, he was referred for a PET scan (fancy CT scan) and to an oncologist (who just happens to be the same oncologist I see- and like). I’ve gone to every appointment with dad (until today), since he’s not up on all of the medical terminology.  I’m quite comfortable with medical stuff, being an RN since 1985 and though I have been on disability since 2004, my own medical issues and cancer have kept me somewhat up to date on many things. And, I know how to use the search engines online 😀   I’ve been looking up everything that the docs have said, and I’ve been just as confused as dad.  I wanted to hear what the docs said, since dad calls me with questions, and I wanted to have the info as accurate as possible.  Sometimes dad’s translation of medical terms is a bit iffy !

At the first oncology appointment, the doc was very straightforward. They needed to rule out multiple myeloma. This is a cancer that dad has been terrified of since his mom died of it in a long, dreadful 9-month death back in 1979 at the age of 74.  I remember it fairly well (I was protected from some of the more sordid details- but I was 15 years old, and knew she was very sick), and knew she had been on dialysis 3 times a week during those months, had a horrible ‘quality’ of life, and had coded twice during dialysis.  Back then, they didn’t offer people hospice care like they do now. They went for the maximum treatment, even if they knew it was essentially pointless. Grandma went through hell, and dad remembers that very well.

At that first appointment with the oncologist, dad was told he’d need a bone marrow biopsy, as well as some other lab work.  Dad was offered the choice of doing the bone marrow biopsy then, or scheduling it for another day. I piped up and said he needed to do it then. He did NOT need to spend days worrying about it and imagining the procedure in his head (as he asked me about it, since I’ve had five of them).  The procedure does sound dreadful.  They drill a hole in the back of the pelvic bone to suck out bone marrow.  But, these days it’s much easier than the one I saw during nursing school.  That was the only thing that nearly dropped me to the floor in a dead faint during all of nursing school.  I don’t ‘do’ bone noise. But having them done, I learned that they aren’t that bad. I drove myself to and from three of them (the first two were done when I was in the hospital). So, dad got himself on the exam table, took some deep breaths, and had it done. He did extremely well, however, he didn’t really convince the nurse of his ability to drive home when he answered her with “well, I guess we’ll find out”.  Good one, dad.  We all felt so safe with that answer.

The oncologist also said during that first appointment that his PET scan did not show the usual ‘holes’ in the bones that someone who had multiple myeloma would likely have. And, dad hadn’t had any symptoms. This whole thing was sort of found by accident.  That was all good news. But, the bone marrow biopsy would say one way or another if he had multiple myeloma or any other bone cancer.  SO, after that appointment, there were about two weeks of waiting. He saw his surgeon last week and he felt that the results didn’t show MM- and could possibly be something so rare that he might write an article to be published on dad’s case.  There’s a possibility that this thing actually started as a couple of very slow growing cells transferred to him while he was still in his mother’s womb.  That sort of rare.

Today, I couldn’t go to the follow-up appointment to get the bone marrow biopsy and other lab work results.  I’ve got a nasty cold, and nobody in an oncology office with lousy immune systems needed my germs floating through the air.  Dad promised that he’d call me as soon as he got home, and he did. NO multiple myeloma. No chemo. No chance of that sort of agonizing death (though treatments and chemo are far different now than they were in 1979).  He does have to have some radiation, more as ‘housekeeping’ to be sure that if there are some stray cells they get nuked (the oncologist had mentioned the possibility of this at the first appointment). Dad will have some lines drawn on his neck so they know where to aim the radiation- so it will be visible that something is going on. Until now, I’ve been sworn to secrecy (well, that hasn’t actually been revoked).  But this is good news, and those radiation lines will be visible. People will know ‘something’ is going on.  And here’s the bottom line: dad is going to be OK.  This will not kill him.  🙂

As much as I love Texas and the 17 years I lived there, I’m so thankful to be here now for my dad.  I’m also thankful for the last 10 years that I’ve had to spend time with him. Though face-to-face contact is not as much as I’d like because of my own health issues, we do talk daily, even if he’s on vacation (well, those cruises and other international trips were some blips of time without daily contact, but I didn’t hear that any boats sunk, so I was fairly certain he was safe). When I am able, we do go out and do things together. And he’s always got my back. No matter what, I know that he’s always had my best interests  in mind, and now I want to be there for him to help with medical language translations, and just ‘be’ there.

Time is something that no one can ever get back.  Once it’s gone, that’s it.  I’m trying not to waste what time is left- and that is the kicker- nobody knows when it’s going to be over.  I know that one day he will be gone, and I dread that thought.  I’ve learned during these 10 years back here, as an adult, that he is, and always has been, much wiser than I ever gave him credit for (I think that’s pretty normal- when I moved to Texas, I was 22 years old and still had that post-adolescent ‘all parents are a bit dim’ outlook).  I’ve learned much more about what makes him him, and have so much more respect for him. Being adopted, I could have landed in a lot of places.  I’m SO thankful that I was ‘given’ to the dad I got. While no parent is ever perfect, he did an amazing job as a dad.

I thank God that he is MY dad.  And I’m glad he’s going to be here for a while longer 🙂

Tis The Season…..

….to have all sorts of things churned up.  I don’t really get ”depressed’ over the holiday season, but more a vague sense of being overwhelmed since there are a lot of ‘anniversaries’ around this time.  This year added a new one with the death of my amazing, crazy companion- my miniature schnauzer Mandy, who died on December 27, 2012.

I’m still crying pretty much every day when I think about her, and especially about that last day.  I’m very thankful that that ‘end’ part was pretty fast.  And she was in my arms.  At first, she whimpered enough to alarm me, and from that point until she was actually gone, no more than 15 minutes went by.  After she  peed, and then froze in her tracks, she seemed confused, and not sure what to do, so I just held her and told her how wonderful she’d been.  Her breathing slowly stopped as I held her on my lap.  The ‘new normal’ of not hearing her come running when I mess with the dishwasher or clothes dryer (she had a thing for appliances), of her not leaving the room when I sneeze (or even said the word ‘sneeze’), or escorting me to the door when I got my keys to get the mail.  I didn’t have to say anything; she just knew.  I miss her more than words really can describe.  She was my only companion here in this city, for the past 10 years.  I talk to my dad every day; I saw my dog 24/7- especially since being on disability since April 2004.

Then there is the whole issue of being disabled.  It is somewhat worse in the winter months since everybody has the heat on. I don’t tolerate heat- to the point I shaved my head again (well, I had a professional do it; I wanted to avoid slicing my ears off).  With my ‘normal’ hair (mine is really, really thick), I can’t tolerate the heat it retains. Think dead animal on my scalp.  I also have to see a surgeon this next week about some (more) cysts on my scalp that are painful.  They need to go, so the poor doc has to be able to see my head.  The other issues with disability include being in more pain when it’s cold outside, and my joints just not liking getting in and out of the car.  Sounds wimpy.  Maybe it is.  All I know is that I have to manage it the best I can- so whatever I can get delivered to my door (Schwann’s frozen foods, Walmart for laundry and paper goods, Amazon for miscellaneous stuff, etc), I do.   It’s still very painful just grocery shopping for the dairy/fresh items, but it definitely helps to get stuff delivered when possible.  I’m thankful that those things are available.

Early January is rough for anniversaries.  January 7, 1978 my figure skating coach’s six kids were murdered by her then husband.  I was 14 years old, and it rocked me to the core. I can’t imagine how she has done.  I think about her often, and have always prayed that somehow she’s managed to have a life after that.  January 10, 1987, I was raped and ‘tortured’ (word the newspaper used- don’t want to sound overly dramatic on my own) for 6 hours when the uncle of a baby I took care of regularly lied his way into my apartment… he did things to me I’d never heard of, being very naive…and a virgin.  I’ve never let anybody get close to me since then.  I’d always thought I’d have a family of my own.  That day changed a lot- but I survived.  And I’m thankful for that.

In 1982, the semester that started in late January was a bad one.  I was in the midst of some serious eating disorder stuff, and the depression I only get when I’m starving and purging.  I ended up getting sent to a psych hospital (no eating disorder ‘treatment centers’ back then) for several months.  That was a bad year. I ended up attempting suicide the next semester when I returned to the university.  I was in a coma, and then shipped back to the psych hospital for many more months, once I woke up and was medically cleared.  Things weren’t done in a week to 10 days back then.  I spent about 8 months altogether at Forest Hospital (Des Plaines, IL) in 1982.  They were good to me; I did do better, but the eating disorders were on-again/off-again for decades.

This is the first winter since early 2010 (when I was diagnosed with acute promyelocytic leukemia) that I haven’t been on chemotherapy or waiting for the built up amounts of toxins to leave my body.  I’m still dealing with the weight gain and changes in my blood sugars and insulin doses, as chemo messed that all up.  The diabetes is getting better faster (great endocrinologist with a Joslin Diabetes Center affiliate here in town). I wasn’t on steroids long enough for that to be an issue- it’s ‘just’ the arsenic, tretinoin (ATRA), methotrexate, and M6Mercaptopurine.  They rearranged my chromosomes (literally…. they ‘re-translocated’ the arms of 15 and 17). I guess it will take some time to get my body back to ‘normal’.  I hate the weight.  I’ve had a long history of eating disorders, so can’t just do some crash diet and hope for the best- it could easily trigger a relapse that I just can’t afford.  But I’m going to turn 50 in late 2013; I don’t want to  look like this when I turn 50.  I didn’t want to look like this at all… but it was chemo or die.

And yet, I have a lot to be thankful for. I’m alive- that’s the big one; people with APL sometimes aren’t diagnosed until autopsy (and I know of 2 people just a few months ago who only had one and two days from the time they were told the diagnosis and the time they died; one was 11 years old).  I’ve survived being raped, and other stuff. And, with my health, I am glad to just have a day when I can get the basics done around here.  I’d like to be around people more, and am hoping to get to that Bible Study I’d mentioned in another post; last week (the first meeting of this topic- Ephesians) I wasn’t feeling well- that doesn’t mix well with indoor heat, even with my ice vest.  A childhood friend who I’ve reconnected with on FB came over one Saturday, and helped me with some generalized clutter (result of not being able to unpack after the last time I’d packed to move BACK to Texas), and is coming again- that has been a huge help.  I want to get this place puppy-proofed for the new puppy I hope to get this spring.  That helps, too.  I can’t imagine not having that hope for a new little companion to fill the dog-shaped hole in my heart.

2013 isn’t starting badly… just ‘complicated’ by past and present stuff mixing together.   There is still more good than bad.  I still have a lot of interests, and while I can’t physically do a lot, I do find things to keep me happy and make me laugh, especially online.  Blogging has been a great way to blow off steam, and some days that makes  a big difference.  🙂

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. 

Sad and Scary Magnet

Sometimes I’ve wondered if I’ve got a sign on my forehead that screams “ALL FREAKS, C’mon over” !  I’m sure that everybody has experienced the same sorts of people in different ways…and some days I’m not so sure.  Maybe some of it has to do with being a nurse. People see nurses as helpful and nurturing, when we’re just as weird as everybody else- we just get paid to take care of the lost and vulnerable. And then there are the folks who would fit nicely  on the side of ‘Criminal Minds’ that either gets shot or lengthy prison sentences. The spooky people.  Not all are dangerous to others, but the danger to self thing eeks in there. Regardless, they don’t fit well into a ‘normal’ life.

Let me start with a director of nurses (DON) who had been one in a line of them at a very nice nursing home after the ‘good’ DON had gone on maternity leave. He happened to come along during a time when a new administrator was also getting used to all of us.  Initially, he seemed a bit intense, but not pathological.  One of my duties when I was working on the weekends as the RN Supervisor was to log in the discontinued medications that did little but take up room in the storage cabinets in locked medication rooms. I counted each pill on each card of pills (packaged at the pharmacy for nursing home med carts), bottle of loose pills, or made sure injectable medication vials had a reasonable amount left for what the sign-out sheet said it should have.  Narcotics (or ‘scheduled’ drugs) had to be accounted for separately and documented on specific forms.  It was mundane, but necessary. At one point, the DON asked me for the keys to the file cabinet  in his office where we kept the ‘logged’ drugs.  He was the boss, so I handed them over- no problem.

A few weeks went by, and the nurses on the floors said that nobody had picked up the growing piles of discontinued cards and bottles of medication for a while; they wanted them out of the way. I asked the DON if he wanted me to log the meds in that coming weekend ( I think this was either a Thursday or Friday). He looked at me and closed the door behind me in his office.  Gulp.  He then pulled out a .44 semi-automatic handgun out of the desk. That alone was a huge, HUGE problem. Texas was pretty gun-friendly, but in 1994, guns and old folks weren’t a good pairing.  He pointed the barrel at me as I sat down (which I decided to do before I keeled over), and asked me if I was going to tell anybody about our little talk.  Nope. My lips were sealed. Everything was very cool (as I’m imagining my body being found after the weekend, ripe and smelling up the place).  He handed me the keys and told me to go ahead and log in the meds that were piling up.  NO problem. Happy to do so.  Can’t wait to get started. Did he want coffee with that?

But that weekend, I noticed that every last narcotic form I’d filled out had been rewritten in his handwriting, with no way to figure out what had been removed from the lists I’d been keeping. I had a very specific way of tying the bags when I was done, and how I kept the narcotic sheets separate.  It was a federal law that this all be done according to the rules. I liked following the rules 🙂   I didn’t like having my work screwed with by a gun-weilding nutjob of a boss.

I  didn’t like even knowing about the gun. But I was also initially scared enough that he would shoot me, run off with piles of drugs, and nobody know why I was found belly up until they start looking at the paperwork. By then, he’d be on some uncharted island in the South Pacific, in some hut powered by a bamboo bicycle generator and drinking coconut drinks. The new administrator didn’t know any of us that well, and I wasn’t super tight with the assistant DON, but I had to tell someone. The ADON ‘G’ was outside smoking late that next Monday afternoon after nearly everyone had gone home. I told her about the gun.   She knew me well enough to know I wouldn’t come up with some sordid story about someone.  We agreed that we’d both go to the new administrator in the morning, before the gunslinger got to work.  We did, and told the newbie administrator. By that time, the DON had turned in his resignation, and it was decided he need not complete the two-week notice. He was free as a bird.  I have no idea what else was done about reporting him to the board of nurses (not sure if mandatory reporting was in place at that time), but I was told (after he left)  that before he left, he’d taken it upon himself to just stop some lady’s order for morphine- pills and injectable- and they were never seen again.  That created a HUGE mess with calling the doctor and getting the stuff reordered from the pharmacy for the poor little lady who still needed the stuff. The floor nurses were going nuts counting everything that wasn’t nailed down, and making sure their names were clear (they were).  I’ll never forget the business end of that .44 charcoal gray gun ‘looking’ at me.  “Two in the chamber, ten in the clip”…. whatever that means, it didn’t sound good.

Another time at this same facility, there was a sweet certified nurses assistant who was noticeably quiet, but she got her work done and wasn’t an attendance issue. Those sorts tended to fly under the radar. She was probably in her early 20s, and a member of the ‘fashion isn’t my thing’ club (I also belonged to that club- no judgement from me). We all worse scrubs while working, so looked pretty much the same (in different colors and prints, depending on the department), but when she came to get her paycheck, she dressed ‘depressed’. That was my first clue. I’d talked to her several times, and we had a decent rapport. I could tell there were things going on, but didn’t have any reason to pry. Her work was acceptable. I was part of the nursing management bunch, but did patient assessments and staff training/infection control- not the hiring/firing/counseling stuff.  Anyway, I kept an eye on her.

One afternoon, I got a call from the next door emergency room. They had the CNA there. Her friend wanted to talk to me.  Seems this CNA had slit her wrists. I wasn’t sure why I was being called, but the friend asked if I could talk to the staffing nurse (ADON) and let her know that ‘L’ wasn’t going to be there for her next shift; ‘L’ didn’t want to talk to anybody. I asked where she was going when she was done at the ER (as in what psych facility is going to evaluate her?). She was being discharged home.  With sharp things. By herself.  I didn’t like that at all. I knew ‘L’ lived alone. She never mentioned any family or support system.  OK, not good.   When they left there, I needed to see ‘L’ with my own eyes, so asked them to come over to work, and I’d talk to her.  She agreed via her friend.

In the meantime, I tracked down the social worker (from hell, normally) who was still there; I needed help with this one. And she got nice about it all, which I was thankful for. She got on the phone and started making calls re: acute psychiatric facilities who would do an impromptu assessment as soon as we got ‘L’ over to their facility.  I don’t remember who the DON was at that time, but I think she was gone for the day (it wasn’t gun-boy).  ‘L’ got over to the nursing home in a little while (wrists wrapped in gauze), and agreed to go with the social worker and me to the psych hospital, just to see ‘what her options were’.  I was hoping they’d keep her for a few days, so she’d be safe.  She was worried about losing her job if she checked in to a psych facility, but I told her that being checked out, and getting help was going to help her keep her job. Our administrator (before the one with gun-boy) was very compassionate.  ‘L’  agreed, and the psych facility did decide to admit her. She was in and out of there over the next few months (once after I sent the police looking for her as she had uncharacteristically not shown up for work), and ended up getting shock treatments.  She came back to work eventually, and while a bit subdued, she was doing better.  I learned more about her past, and she had reason to feel overwhelmed and hopeless.  Everybody has a history…

Another coworker (an LVN at an acute care hospital working on the neuro floor) had some ‘issues’.  At work, she was fine.  Not employee-of-the-month, but she did OK when she was there. We were both fairly ‘young’ nurses- as far as time out of school, and also just plain young, in our early 20s.  ‘A’ had all sorts of respiratory problems- mostly asthma. She had some attendance issues as a result, and the hospital had a ruthless attendance policy. She could be admitted in the hospital on oxygen, and it counted against her attendance record.  Anyway, a few months after I’d been raped and beaten in a very publicized case, ‘A’ calls me and says she had been attacked overnight by a former boyfriend, and needed help getting her dog to the vet. Fido had been cut by the boyfriend’s knife per her report.  I immediately agreed and went to pick them up.  Something seemed ‘off’.  Fido was frisky and happy to see me (his  usual goofy, non-traumatized behavior). There was a tiny cut  on his paw (more worthy of a bandaid than a trip to the vet), and ‘A’ had some odd looking cuts on her neck…the depth wasn’t something I’d expect from someone who had been seriously sliced by a rabid ex-boyfriend, and the way it went from deeper to more shallow from left to right looked kinda self-inflicted to me (she was right handed). But I didn’t want to believe that.

‘A’ told me she’d been whacked in the head, and felt horrible, but after going to the vet, how about we go get some lunch and maybe do some shopping.  😮 Everyone deals with stress differently…but another piece of the puzzle wasn’t fitting well. But, I agreed.  We spent most of the day together, and during that time she told me that the police had asked her for this guy’s photo- but she didn’t feel like getting it for them. WHAT? Not helping to apprehend this guy?  I had no ability to understand that ‘reasoning’ at all.  I’d been held in my apartment for 6 hours, finally escaped and called 911, and police ended up shooting the guy in my bedroom when I’d been attacked less than 7 months earlier. Why was she doing this?

I decided I needed to get home, and she suddenly begins to have symptoms of a concussion.  Puking, head pounding, vision a bit blurry…. so she now needs a ride to the ER for a CT scan and neuro evaluation.  The day was getting so very long (and more and more weird). She ended up being cleared for any sort of head injury, and told that basically she was fine.  I dropped her off at her apartment, drove like a bat out of hell to get home, and turned my answering machine off when I got there. She could dial 911 in a real emergency when she was going to cooperate with an investigation.  I was done.  I was no longer working at the same hospital by that time, so rarely saw her… I’ll never think that she was telling me the whole story- OR stop wondering if the police had ever actually been notified of the ‘attack’.  What made me even more mad was that the dog had been involved.

I got much more jaded when crises came up with some coworkers.  I had my own stuff to deal with, and had also become much better at sorting through when someone needed  help that was appropriate for a friend or coworker to handle.  I had times when coworkers helped me through some lousy times, and most of that was when they offered; I didn’t seek them out.  I was always very thankful for their time.  But,  I got careful about that as well, as crises junkies also like to be on the ‘helper’ end, not just the ‘helpee’.  One in particular had been a huge support system during some eating disorder stuff that was pretty serious, but when I got better, she wanted nothing to do with me. That hurt a lot.  There are a lot of people out there who are taking care of people who need keepers themselves.  Or who help to fulfill their own self worth needs.  There’s nothing wrong with finding satisfaction with helping people (professionally or on a friendship level), as long as the needs of  those being helped are the first consideration- not some twisted need for being needed.  Sometimes it’s a fine line.

I can think of others… these just stood out tonight.  Stay tuned for the continued saga of the  wacky side of nursing, and whacked nurses. :/

Letter to My Oncologist

First of all, I can never express enough gratitude and appreciation for what you did to treat the leukemia I was diagnosed with in 2010.  I’m thankful to God for your skills and incredible knowledge that helped to save my life.  Your awareness of the latest treatments for acute promyelocytic leukemia is wonderful .  I’ll always be thankful for that.  I often wish I had the chance to find out more about Iran from you. I’m sure you could tell me things that I’d never know from a book or documentary.  Because of you, I’m more interested in TV shows that focus on Iran, as I have respect for you and your skill as an oncologist; I want to know more about where you’re from. 

But I feel so misunderstood by you when it comes to losing the weight I gained during chemo.  Every single appointment revolves around my weight, and I’m really sick of it.  I’ve told you about my history with eating disorders, and while I’m aware that you don’t specialize in them, you must be aware of the nature of EDs.  The only time you backed off was when I was in tears trying to explain that I KNOW I need to lose weight. Nobody beats me up more than I do over my weight.  It is painful to hear it from someone who doesn’t know me aside from the leukemia.

Did you have to openly chastise me in front of the med student?  Up until then YOU had said that the weight gain was a side effect of the chemo. When I said ‘chemo weight’ and you told me “don’t you blame the weight on the chemo” when the med student was there, it was confusing and shaming. Was that for the med student’s benefit?

When you thought I was depressed, as in clinically depressed, you backed off. I’m FRUSTRATED.  You backed off that day when you saw I was upset.  But yesterday, when I had no outward signs of being bummed out, you started in again. I’m not going to keep showing up to hear about my weight  from a doctor who doesn’t deal with weight issues.  Not gonna happen. You deal with the cancer. Period.

You suggested I go to the YWCA to swim. Do you understand that heated pools trigger the dysautonomia?  I wear an ice vest to appointments, and that didn’t occur to you?  Well, I guess that’s understandable since you don’t treat dysautonomia.  You don’t know enough about me to know that I can’t walk unsupported for very far. I do OK in my apartment, but if I go to the store, I need the cart for support.  I was using a walker IN my apartment up until the day I was admitted to the hospital for that first admission when the leukemia was diagnosed. I had a partially torn ACL and medial meniscus in my left knee; you didn’t know that. It never got fixed, and I’m not sure how well it healed since it still hurts now and then. I was supposed to get a knee replacement done.

You asked about specific high calorie snack foods yesterday.  Do you have any idea how long it’s been since I had chips, cookies, cake, or candy in my apartment?  No?  I don’t either.  I don’t buy them.  The biggest treats I have are freeze dried apple slices that pack in a whopping 38 calories per bag.  Oh, that’s right- you told me to quit eating fruit.  Really?  Unsweetened fruit is a very basic food.  It’s on the diabetic meal plan I have that was set up by a registered dietician. I’m sure she got more nutrition education than physicians do (or her job wouldn’t exist). I’ve read about the basic nutrition classes that US med schools require. I’m not convinced that Iranian med schools demand much more with instructions to not eat unsweetened fruit.

I don’t need anybody to tell me I need to lose weight. Do you think I’m blind, or stupid? Or maybe you just think I don’t care and sit around eating bon bons all day. How insulting.  There hasn’t been a day in over 35 years when I haven’t considered my weight.  Are you even 35 years old?   I was badgered by my mom about my weight from the time I was six years old.  Then I took over, and equated my weight with my self worth for decades. It has been something that has haunted me for years, and I’ve worked hard to keep from letting it destroy my life. I don’t need (OR WANT) you to keep harping on me about my weight.  I know it needs to come off.

I’ve been an RN for 27 years, and a diabetic for 17 years. I know how being overweight is hard on a body.  I get it !  I’ve seen my regular doctor about it, and will see an endocrinologist next week. My blood sugars were never the same after chemo.  Is that my fault also?  I know that insulin is a problem when someone gains weight, and insulin stores fat.  I can’t not take it.  You don’t realize that I was 40 pounds lighter when I started on insulin; I wasn’t ‘fat’… somewhat overweight, but more than 100 pounds less than my highest weight. You don’t know about that, because you don’t do anything but tell me to lose weight over and over and over again.  You don’t know my whole medical history, or the daily struggles because of being disabled (I do pretty damn well, considering). You see fat and cancer.  Well, I’m in remission; maybe it’s time to have someone else follow me until the five year mark when I’m considered cancer free.  Someone else can do the yearly bone marrow biopsies.

Do you get after your obese staff members in the oncology office like you do patients?  Is that why nurses no longer go over the medication lists with me when I first get there, and why I found 16 errors on my list when I went over it today? Did the nurses leave?  Or are there techs in place of nurses now to save money?  I know that isn’t something you can control, but look around.  Don’t talk to me like I’m the fattest person you’ve ever seen.  I’ve been in your office and in the hospital enough to know that isn’t true.

I feel like less of a person every day because of my weight.  I know that’s not right, but it’s the truth. You aren’t helping that. You only let up one time (when I was in tears) because YOU had done so much to keep me alive and didn’t want me to be depressed.  It’s not about you.  I appreciate what you DID.  But what you’re doing is damaging.  I hate coming to appointments, and will continue to refuse being weighed at your office if I keep coming at all.  You did a great job with the leukemia while I was still being treated, but now, it feels a whole lot more like harassment.  Continuing to tell me repeatedly that I need to lose weight is so counterproductive I can’t even explain it.  It drives home even deeper that my weight is more important than anything else.  That is a great way to trigger something I never want to go through again. And something you really don’t know much about in my history.

I have to make a decision about whether or not I’m coming back.  I know my primary doctor can refer me to another oncologist.  I don’t want to keep seeing you three times a year just to be lectured about the obvious in a way that is demeaning and shameful.  Thank you for the incredible job dealing with the leukemia. But get back when it comes to the continued lectures about my weight.  I’m not going to do it.  When appointments are more of a sense of dread than they are productive, it’s time to hit the road.

Update: My primary doc is sending a referral request to another oncologist 🙂

Riding The Scale: The Eating Disorder Roller Coaster

Eating disorders don’t always fit into nice little diagnostic criteria.  There are as many variations of anorexia, bulimia, binge eating disorder/compulsive overeating, and combinations of those as there are people with eating disorders.  The diagnostic criteria give guidelines for when to apply a specific diagnosis, but they are often very limited in their scope.  If someone starts out quite overweight, but loses a significant percentage of that original weight, and has the behavioral characteristics of a ‘pure’ anorexic, they are anorexic for treatment purposes. But, the diagnostic criteria is often limiting, and the person doesn’t get the proper treatment. They are viewed as not ‘sick enough’. I’ve also heard of 78 pound adults who didn’t have ‘enough’ of the behavioral characteristics to qualify for help. It’s crazy.  Restricting bulimics may have generally normal eating patterns between binges, but then starve afterwards or overexercise  and not purge by vomiting or laxatives- and they are misdiagnosed.  It’s about the overall picture, not just the individual behaviors.

From the time I was eleven years old, I was a compulsive eater when I could get to the store on my bike and buy food. My food intake at home was restricted by my mom beginning at age 7 (she didn’t want me to be fat- as she perceived me to be). I was hungry.  So, when I started babysitting (which I did for neighbors at an early age), I’d save my babysitting money to go buy fruit roll ups and a cinnamon roll at the bakery next to the grocery store.  I’d eat the cinnamon roll on the way home, and sneak the rest into my bedroom by cramming the fruit rollups into my socks.  As I got older, and had more babysitting money, I’d get more stuff. I’d also bought a bigger bike with a bag on the back that held more than my socks did.  I was sneaking food before 7th grade.

 

When the imposed food restriction began, at around age 7.... not fat !

When the imposed food restriction began, at around age 7…. not fat !

During high school, I often joined in on diet contests, where I’d lose up to 14 pounds in a couple of weeks, usually ‘winning’.  Between high school and my freshmen year at the University of Illinois, I became anorexic over the summer when I was working at a church camp.  By the time that first semester started at the U of I, I was ‘hooked’.  My life was never the same.  At that time (1981), the ‘Feighner’ criteria was used for diagnosing anorexia, and was based on a percentage of the original weight being lost, along with behavioral characteristics. Then a ‘refusal to maintain minimum weight’ was instituted, so the criteria eliminated people from  for treatment eligibility.  BMI wasn’t around yet, so  specific weight wasn’t required for diagnosis until then.  That made even more people ineligible for help.

Bulimia is generally diagnosed on a person’s self-reporting, or the observations of close friends and relatives- not weight.  Other telltale signs are the calloused fingers/knuckles, eroding teeth, weight fluctuations, presence of laxatives and/or diuretics, and compulsive exercising.  Those can also be seen in anorexics who are of the ‘bingeing’ subtype.  Compulsive overeaters are generally thought to be obese, but that isn’t always the case.  Much depends on the frequency and activity level of the compulsive overeater/binge eater.

These diagnostic criteria are used for insurance purposes- not for any true benefit for the sufferer.  The insurance forms require a code in order for the treating therapist or treatment center to be reimbursed. It’s as simple as that. Money.  It’s not known how many people die from eating disorders that aren’t correctly diagnosed, because the criteria is so narrow and often weight biased.  That seems so hypocritical when the treating staff then tells the patient that it’s not about weight  (which it’s not- but the diagnostic criteria often depends on it).  But money will always win out over what is best for the patient.

I spent years in treatment for anorexia, and after one outpatient treatment center’s rules about no diet soda or food, my weight blew up to 300 pounds. I learned nothing about portion control (their model was to eat when hungry, stop when full; when someone starts out with abnormal eating habits, like having food restricted for them, the hunger/satiety signals don’t work).  Most people who know me from my hometown never saw me like that.  At some point, I lost over 100 pounds from a combination of undiagnosed diabetes, and then a bad relapse into anorexia.  Since I was overweight, I wasn’t diagnosed as anorexic, even though I’d refuse to eat more than 300 calories per day, used laxatives,  and walked like a maniac for miles at a time.  I was sent to treatment, and even though my ‘eating disorder inventory’ was purely anorexic, the treatment center basically lied to insurance and said I was bulimic  in order to get paid (I did use laxatives, but never binged during that time).  I wasn’t ‘thin enough’. But I’d lost 50 pounds in three months, and panicked around food.

I managed to get myself out of that last relapse after that ‘treatment center from hell’ did little but give me access to a good dietician (the only staff member of any use). She did help me start eating somewhat better (nowhere to go but up at that point).  After that, I read every book I could find on eating disorder recovery (professional books), and applied the principles and techniques to myself.  It took years, but I got better.  My weight settled out still in the moderately overweight range, but considering where I’d been, I was about 90-110 pounds below my highest weight.  I could live with myself.

Life went on, and I ended up with gastro-esophageal reflux disease (GERD), which was very uncomfortable before being diagnosed, and I lost about 30 pounds unintentionally. It was ‘good’ weight loss, but it was because of a disease process, and thus ‘abnormal’.  The GERD got treated, and my weight went up a bit, but by that time, I’d gotten used to eating one average meal over the entire day.  That was my new ‘normal’, and while it wasn’t good, it wasn’t based on any eating disorder behaviors. I was even putting a tube from my nose into my stomach every night to supplement with diluted liquid nutritional drinks to get more protein and fluids into my body; I never would have done that during active eating disorder relapses.  My doctor knew what I was doing, and initially she wasn’t that thrilled with it (she also knew I was an RN and knew the safety measures to take, so didn’t ‘ban’ me from doing it- which would been pointless; I was trying to keep from relapsing, and would do whatever I had to in order to avoid another round with anorexia).

I was fairly stable for a while. Then I ended up with leukemia in 2010.  The initial induction chemo caused ‘bad’ weight loss (even though I was technically overweight), and muscle mass loss.  When I got done with that, my eating was still strange, but I gained back the weight I’d lost in the hospital. Then I started arsenic (treatment for the type of leukemia I’ve got; in remission now), and after that, a year of 3 different pills. The chemo caused weight gain; I remember that first week on arsenic when I was in the hospital, and overnight my ring didn’t fit from fluid weight gain. The pills also had weight gain listed as a side effect.  My blood sugars went nuts (I’d been diagnosed as diabetic in 1995), and I was needing MUCH larger doses of insulin to keep from requiring hospitalization for high blood sugars. Insulin causes weight gain.  Chemo ended, and even a year after the last dose, I’m still holding onto the weight even though I’ve tried to lose it.  Calorie counting, high protein, meal planning, etc.  It’s not working.  Oh, and did I mention I’m pre-menopausal?

So, I’m in a position now of needing to lose the weight I gained, but not get triggered back into unhealthy habits from the past.  I’m very limited physically now, so exercising is a major struggle.  Doing laundry hurts.  I haven’t been pain free since 1996 when I was diagnosed with fibromyalgia.  I also have dysautonomia which is made much worse by elevated temperatures (including increased activity- messing with the car battery yesterday had me getting to the point of ‘low’ symptoms; much more of that, and I would have been ‘out’ for the rest of the day). I’ve got several bone spurs on my spine, and degenerative joint disease. My right lung has scars from many, many pulmonary emboli in 2007.    It’s a major problem.  At this point in my life, I’m obese by the numbers, and when I see photos of myself, I see the face of one of those orangutans with the huge ‘chin-neck’.  Physically, losing weight is very important.  I love jewelry (rings and earrings, not so much the other stuff), and want to fit into my rings again.  I want to be healthier.

I just need to be very careful not to end up back in negative territory.  I’ve been up and down the eating disorder roller coaster repeatedly.  I’m not ‘eating disordered’ at this point- the weight had a start point during chemo- not because of overeating. My dad comments that I eat vicariously through the Food Network shows and eat ice (which is NOT how I eat- LOL), but he notices that I’m not overeating, and is a bit bummed that I don’t have better snacks around when he comes over.  Thirty-eight calorie freeze-dried apple chips aren’t his bag 🙂

I’ve been somewhat browbeaten by my oncologist about the weight loss, and I’ve explained my history of eating disorders.  I don’t think he gets it at all.  But I’ve got to protect myself from anything that leads me down that familiar, dangerous path.  I see my regular doctor, and will be seeing an endocrinologist for the crazy blood sugars. Something happened to make those crazy even before I gained the weight during the entirety of the chemo; the added pounds now make insulin work less effectively, so I need more insulin.  It’s a vicious cycle.

I’m doing what I can, emotionally and physically.  I have to focus on health, not numbers.  Medicine likes numbers.  For someone with an eating disorder past, numbers are hell.  They have hooks that snag me back into that dangerous area of seduction.  I have to be vigilant, but still get the job done.  Most of the time, I feel incredibly misunderstood.  Like I’m hanging onto this weight for the heck of it.  I’m not.  😦  I want to feel better, and not like I’m lugging around a 40 pound bag of rock salt everywhere I go.  I want to fit into my older shirts, and not look at my legs and see tree trunks.  I have motivation- to stay healthy, but still get rid of this weight.

I’m tired of explaining that I am actively trying to lose weight to my oncologist. I no longer agree to be weighed there. I won’t discuss it with him; it’s not his job to keep harping at me about it. But he keeps bringing it up, and spends the majority of the appointment talking about how much I need to lose weight.  I’m not stupid.  He’s kept me alive with the chemo for the leukemia; job done.  This has to be done carefully, and with the doctors who can really help me, not just keep telling me I’m fat (not in those words, but it means the same). I KNOW I’m fat.  I’m not blind.  And I’ve got a history that could be repeated if I’m not careful.  That is my job, and I won’t let up in efforts to lose the weight in a healthy manner.  There is nothing that is worth going back into relapse mode.  Once ‘it’ kicks in, it’s not a matter of turning it off when I hit my desired weight.  It’s insidious, and I’m not sure I’d survive another relapse. I’m not a teenager, or in my 20s anymore.  I don’t ‘bounce back’ anymore- stuff just adds up.  I have to go slowly, so I can be around to enjoy being at a more healthy weight.

Moving to Texas

All during nursing school I knew I needed to move away from my home town once I graduated and had my RN license.   I needed a chance to get out on my own and find out my own personal likes and dislikes, and just learn who I really was beyond what was either overtly or covertly expected of me.  I needed my own life.  I decided to move to Austin, Texas since I had biological relatives there. I didn’t know them well, but had met them and been writing to them for over a year.  I really liked them, and was glad to have someone to help me figure out a new home 1200+ miles from where I’d grown up.  They were wonderful to me, and helped me in many ways as I adjusted to living in the Lone Star State.

My mom drove me to Austin from the Midwest.  The car was loaded , and I’d mailed 25+ boxes via the USPS.  I’d  partially moved by mail.  Mom and I had a weird relationship, but we had a great time during the three days it took to get to Austin. We weren’t driving to make exceptional time, and did some things just to goof off on the way down there.  We also discovered some of the wonderful foods of the South that I was clueless about.  Fried okra?  I’d never seen regular okra!  Biscuits?  I’d only ever had toast or rolls for a ‘bread’ at a meal.   We also stopped at a wildlife drive-through park in Missouri, and laughed our heads off as a llama insisted on pursing its lips through the partially rolled down car window.  We had some of the animal feed that was sold at the entrance, and that llama wasn’t letting us go by without getting a few bites. I’ve got photos of that goofy llama somewhere. I’ll edit them in if I find them 🙂

We puttered around in Dallas with a friend of mine who lived there with her husband.  She was about 30 seconds from delivering her first baby when we were there, but she gave us the tour of Dallas, and it was wonderful to see her.  I got photos of the baby a couple of weeks later.  Then we hit the final leg to Austin… I-35 South.  I was only  a few hours away from my new home.

It was night when we got to Austin and made it to my aunt and uncle’s house.  I’d been there on a spring vacation train trip a year and a half earlier, and was glad to see their familiar faces and home.  That first night was generally just getting there, talking for a brief time, and then going to bed.  I planned to get a job and apartment the next day, and I did.  The second night, I was in my own apartment (a furnished,modified efficiency unit on the bus route).  The manager lived on-site, and knew I was a 22 year old kid just out on my own.  She kept an eye out for me.

My first job was at a terrible nursing home (I worked at two amazing ones in Texas later on); I lasted 3 weeks there.  During that 3 weeks, I met more of my biological family (I’d been adopted at 10 days old, and had done a search when I was around 19 or 20 years old to find my biological mom, and did).  We had a great time seeing some of the sites around Austin and Fredricksburg.  I really liked the chance to meet and spend time with my ‘new’ cousins, and hit it off especially well with one of my cousins. She’s one of my best friends to this day.

I got a job at a local hospital and started out my hospital nursing career on a neurology/ neurosurgery floor on the night shift. I loved it.  I met some great people there, and while it was a lousy time in my life (I was raped), I learned a lot as a new nurse.  I’m still in contact with one of my co-workers from there.  I didn’t generally become  ‘friends’ with co-workers, but highly valued the ‘friendly co-worker’ relationships I developed through the years.  I didn’t see someone as a ‘friend’ if our only reason for knowing each other was being paid to be in the same place at the same time for the same reason. But some people stayed in my life.

I worked at some great places in Texas (Austin and Kerrville). Texas has had a legitimate nursing shortage for decades, especially in the smaller rural healthcare facilities (like being the only RN for 27 beds in a hospital, with 3-4 LVNs doing the direct care).  And the people were so much more friendly than where I’d grown up.  It was such a joy to meet new co-workers, and much of the time work was actually pleasant. It was hard work, but the vast majority of the people made it so much easier, even on the crazy shifts.  I’m still in contact with many Texas co-workers since I’ve been back in my hometown (moved back for family reasons), and they are really the only co-workers I’ve ever wanted to be in contact with. They are from the best years of my life, and I want that connection.  They remind me of memories I’ll always be thankful for.

Learning about barbeque was mandatory in Texas!  In the Midwest, during the time I lived there as a kid and before leaving home, BBQ was a soggy mess of stringy pork in sweet sauce that was really only good for putting on a bun. It came in a jar.  I hated it.  Grilling outdoors was called BBQ, but that’s grilling. Grilled steaks are really good, but it’s not BBQ, which is ‘low and slow’.  One bite of the real thing, and I was hooked.  There is nothing better than a Texas brisket or order of ribs. The smoking process is what does it. Sauce isn’t really a part of Texas BBQ; it’s available, but not what adds the flavor.  There is no BBQ without smoke. There needs to be a ‘smoke ring’ on the meat.  And no Texas BBQ pitmaster is worth his/her salt without a big smoke-darkened pit, where the magic happens.  I’ve got the phone number to Buzzie’s BBQ in Kerrville, TX to get my ‘fix’ one of these days; they will ship the real deal to me in Illinois !   My mouth waters at the thought.  No ‘bbq’ (small letters intentional) around here compares. Most of it is baked, and if smoke is used, it usually comes from a bottle of liquid smoke, or a quick trip through a smoker.  That’s just not right !  I’m now called a ‘rib snob’ because I’m so picky, and that’s fine 🙂

Spring in Texas, especially the Hill Country which is west and southwest of Austin, is amazing. The landscape explodes in color as the wildflowers start to bloom, starting with the state flower, the Bluebonnet.  The fields can look so blue it seems that perfect blue water just appeared where there had been grass.  Then come the red Indian Paintbrush,red and yellow Indian Blankets, pink primrose, and other flowers in a succession that tells the folks around there how far into spring they are.  Visiting Texas in the spring is amazing. Living there was even better.

Living in the Hill Country was a totally different experience than Austin.  I love Austin a lot, but the time-warp in the Hill Country was delightful.  Simple things are still appreciated, and there was a sense that I’d been accepted as one of their own.  When I first got to Kerrville in 1991, pay phones were still 10 cents for local calls!  That was unheard of!  There was (and still is, as far as I know) a daily Bible verse in the local paper, and nobody squawks about it.  “Howdy” was the way people greeted each other, and on the road, when someone came up from behind, it was common courtesy for the car ahead to move off to the right so the person behind could pass.  As they passed, both drivers nodded and waved.

There are so many more things that I love about Texas.  Since being disabled my dreams of moving back there are pretty well trashed.  I’m so thankful that I had 17 years there.  I got to know the reasons that  Texans love Texas. It’s not some empty pride- there’s a humility about the privilege of living there, but also a deeply rooted appreciation at the quality of life, friendliness of the people, incredible land, and wide open spaces.  The stars are big at night.  The sunrises are beautiful, especially during the spring and fall when the fog and mist make the sun a big red-orange ball.  People who haven’t lived there understandably don’t ‘get it’.  I’m not sure how they could.

Texas isn’t just a place, it’s an experience.  It’s where I spent the best years of my life, and met people I’m still in contact with, 10 years after leaving.  In Texas, I felt I was accepted, warts and all.

Texas is a place, but it’s also a state of mind.  My heart is still there. ❤