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 🙂 ).

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Mammograms and Menopause…

Boy howdy, did I have a good time today.  Should probably be illegal, and yet it’s required by the conscientious medical provider I have, to the point of getting actual mail, not only e-mail reminders.  I think the last time I got real mail from my doc, it was an order referring me to an oncologist because my entire blood count was next to nothing, beginning the odyssey of leukemia survival.  So, they scare the crap out of me to let me know it was time for the annual (or so they’d prefer) boob compressing.  It’s an exam undoubtedly devised by a man who never thought that there could come a time when a very ornery, hormonal, fed-up menopausal woman somewhere in the medical invention universe would come up with a testicle crushing machine to ID nut cancer.  If my personal physician wasn’t female, I’d probably find some internet conspiracy theories to make myself feel better about blowing off said mammogram.  But she is, so I went.

The first time I had a mammogram was about eight or nine years ago. I’d heard horrible things about the girls  being smashed so flat, they needed spatulas to scrape them off of the table thingie when the exam was over.   It had been compared to the labor pains of the woman’s northern hemisphere.  I went in terrified of having my boobs stretched and pressed so harshly that I’d need to roll them up in those old pink foam rollers to get them to stay in my bra afterwards.  But I went.  I followed all instructions to a tee, including the ‘no deodorant’ rule.  My first thought was that the technician would be wearing a gas mask, but not the case.  And the exam began…

Eh.  Not a big deal.  Yeah, so I wouldn’t want to be holed up in those positions for any longer, but it wasn’t horrific.  I’d survived, and the girls weren’t bruised or misshapen. Still faced different directions. Back to baseline.    There was, however, a problem.  I tend to be somewhat intolerant of nonporous surfaces, and I sweat when in contact with them.  I’m also very heat intolerant, so I sweat just thinking about being slightly warmish.  My boobs also inherited this condition.  The first one let go of the table without much fanfare.  Peeled ‘er off, and tucked ‘er back in the backwards ugly-gown.  The second one?  Nope.  Did. Not. Want. To. Go. Home.  She was flattened down, and gripping with a suction I didn’t know was possible from a boob.  She put some octopi to shame that day.  I had horrific images flashing in my head about finally getting her loose, only to have the recoil  slap up against my forehead, refusing to move.  I’d have to drive home with a boob over my left eye, hoping like crazy that I didn’t get pulled over for ANY reason.   The sweat would be creating humidity in the car that would make driving hazardous. Ferns would grow.  Finally, I got it loose, and hunched over as I ran into the dressing room, hoping I’d been able to dislodge it without the tech getting any glimpse of the power struggle going on from a stubborn ‘limp’ tit on her table.  I wasn’t letting that boob get any ‘lift’ from air as I moved, lest she go airborne, and become too unruly to shove back into my bra.  Scary having something seemingly operating independently of the rest of me 😮

I had another one the winter after I finished chemo for leukemia (APL). Once I got the OK, I had every crevice and loose bit of tissue  tested for any and all types of weirdness.  I wanted to know I was starting with a clean slate.  And so I did- and all came out OK.

Then, came today.  I had a routine oncology appointment today (is that an oxymoron?  ‘Routine’ and ‘oncology’ lumped together?) , so I scheduled the mammogram for after that.  That meant no deodorant for the oncology appointment (but I did mist the back of my shirt  with a bit of body spray).  Menopause has done some odd things with body odors.  I hadn’t anticipated that when it all started, but have come to understand that I smell really, really bad if I’m not layered up with whatever non-toxic odor neutralizers I can find.  I’ve been tempted to stuff dryer sheets in my bra.  As it is, when I get a whiff of my pits- which are connected to a sedentary body, creating no extra odor due to healthy activity- I  dash off (well, I limp, so ‘dashing’ probably isn’t accurate) to do a wipe down with witch hazel, as well as a moderate scrub with some old cheap washcloths with some texture to them.  A layer of non-toxic baby powder is also a good thing.  This is all when I’m at home, alone, with nobody to witness the tragedy of menopausal pits.

Anyway, I got through the oncology appointment and went to the mammogram appointment, and got in early, since it seems Tuesdays in Cancerville are fairly sedate, and I overestimated the time between appointments.  But, the boob squishing department was at a lull, and I got right in over there. Did I mention that the handicapped parking is down about 16 steps?  Anyway,  I was escorted to the changing room,  given the ugly-gown to change into, and then made my way to the exam room, where the tech had some questions.  Thus far, the pit stench wasn’t horrible.  Not my finest, but I didn’t think I’d kill anyone.  On to the exam.

As soon as my right (the first one done) arm was raised, the green mist appeared.  I was suddenly reminded of roadkill along the backroads of Texas in July, about two days after impact.  Buzzards were circling, and flies could be seen in cloud form.   I smelled like decomposition 😮    Oy.  Those poor techs.  Menopause was making me smell like a dead opossum. Or skunk. With a witness.   I was horrified.  I laughed it off, and the tech just said she didn’t smell anything.  That must be part of the job application- must pass one of two of the following:  outstanding liar or absolutely no sense of smell.  The woman today seemed trustworthy enough, so my guess is that the part of her brain that interprets smell was blown out at close range in a terrible crossbow accident that left her otherwise unharmed.

I got out of there, and made it home so I could get the Brillo pads out after my pits.  I got my appointment clothes off (still emitting a slight green fog), and got my natural deodorant.  I thought about applying it with a spackling knife, but decided that might be a little too looney.  I’m not the queen of persnickety hygiene, but I try not to be a community health hazard.  At home, it’s just me and the dog most of the time (and she seems quite happy, no matter how much I’m mortified by the changes of menopause).   I like it that way, with few exceptions.   I just hope that when this whole process of ovarian retirement is over, I go back to being just a little whiffy when it’s hot out.  NOT being so toxic that I need to wear hazmat signs when I leave home.

My condolences to the mammo-tech.

Sorting Through The Symptoms…

 I’m whining.  *** Warning *** I’m not chipper and smiley right now…

Read at your own risk 😉

This has been a weird few weeks.  Actually, things started to get worse with the dysautonomia during chemo for leukemia, which was fairly expected, but it’s getting worse.  Chemo messes with autonomic dysfunction, especially with diabetics, or those with previously diagnosed dysautonomia.  Add in some menopause, and changes in some medications/insulin- and the party just keeps getting better.  I’m tired of trying to figure out what is from what (fibromyalgia/chronic pain, chronic migraines, chronic headaches, reactions to foods, etc).

This past weekend (a few days after two epidural injections- one in my thoracic spine, and one in the lumbar spine), I had some horrific nights with severe leg spasms and cramping. Normally, I don’t have any type of reaction to the steroid injections, other than a day or so of higher than usual blood sugars, so I didn’t really think that was the cause.   I’ve had these  spasms before, but usually getting up once and forcing my feet into a ‘flat’ position, then walking around for a few minutes generally helps.  Friday night was like that.  Saturday night was a nightmare.  I was up every 45-60 minutes, with spasms that actually made the calf muscle (the ‘drumstick’ one) have an indentation in it (like a shallow dish) until I could get the muscle relaxed.  These types of muscle spasms are incredibly painful, and I find myself doing  sort of breathing that reminds me of someone giving birth on TV. Or acting like it.

I finally gave in and called my pain doc early Sunday morning – around 7:30 a.m.  He was very prompt in calling back, and heard me out when I  asked about serotonin syndrome- which he didn’t think was likely. That was good news (no need to go to the ER).   He did  tell me to not take the tramadol anymore, just in case.  I’ve been on methadone for pain for several months now, and had noticed that it wasn’t working as well with that original dose (which spooks me after watching people detox from methadone when I worked drug/alcohol detox.  It’s THE worst type of detox that I’ve ever seen -and I’ve seen lots of alcoholics, cocaine/speed addicts, heroin/opiate addicts, and benzodiazepine addicts- they have a ‘bonus’ 10-15 days after they stop taking the benzos, with another round of acute symptoms, etc).  I’ve been chicken about even taking methadone- but it’s a legit pain med, not expensive- AND, when used as prescribed, it’s safe. I use it as prescribed, and it still gives me the creeps.  I’m lucky to have found a pain doc who doesn’t just write prescriptions right and left.  There are ‘rules’ for being one of his patients.  I respect that.  At any rate, he told me to take a bit more methadone then and another muscle relaxant, and try to get some rest.   I did as I was told, and did get some sleep.  During the worst part of the spasms, it feels like the muscle is being torn from the bone- that has stopped, thank God.   Today has been one of fatigue- but no more spasms.

Trying to figure out what is going on when I start having symptoms can be tricky.  I had e-mailed my primary doc about the symptoms on Friday evening, and she wants me to have some lab work done, which is a good thing.  As a diabetic, I’m a little on the paranoid side about my kidneys.  The chemo was hard on my blood sugars, and I’ve got them MUCH better- but still some wacky ones here and there.  I’ve had a lot of peripheral and autonomic neuropathy symptoms- so that’s sort of my ‘default’ assumption when something is weird.  I get flushed, my skin is hot- but I can feel cold (strange for me), I get blotchy areas on my chest, and in general don’t look OK….

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

It’s hard to know if muscle cramps could be from potassium, sodium, calcium, or magnesium deficiencies (and those can get really bad- as in don’t make plans for next weekend, since you could be six-foot under by then).  Bulimics are very prone to those- and electrolyte deficiencies are big in sudden deaths from eating disordered patients.  But I’m not in that category any longer, thank God.  The peripheral neuropathy (likely diabetes related) in my legs doesn’t help.  My thighs have deteriorated, and actually shrunk (posterior thighs)- so they tend to hurt faster than before, after doing anything.

My blood pressure has been crazy again (directly from dysautonomia changes), and I’m going to have to start a different form of propranolol (Inderal), as every Medicare part D (drug plan) formulary I checked has cut out the extended release from the generic list.  It’s been generic for a LONG time- but now it’s priced in the ‘preferred BRAND’ category.  I have too many meds to spend a $42 co-pay for 90 days for one med (well, actually two- they cut the extended release seizure meds as well- but I do OK on the regular release form of that).  I already have to pay out of pocket for insulin and syringes, since getting them would push me into the ‘coverage gap’ (donut hole) requiring ALL meds to be out of pocket- which is a map for going straight to non-compliance.  And a non-compliant patient is loathed by medical professionals.  Doesn’t matter WHY someone doesn’t take their meds. There are a LOT of us out here who have to juggle medical expenses to be sure there are funds for the entire year.   Medicare is not free.   Anyway, the symptoms are acting weird, and some days, it’s hard to get much of anything done.  BUT, I still have so much to be thankful for.  I can still think, and put together what I think is going on so I can tell my docs the information they need to know.

Menopause is a special little treat that makes the dysautonomia worse. I have had a few hot flashes- and thank GOD that they aren’t the same as my general heat intolerance.  They are brief, and feel like fire from inside… I adjust the air conditioner (had it on when it was 17 degrees Fahrenheit this winter), and ride it out.  I hadn’t expected the ‘morning sickness’ from the hormonal mayhem, so Phenergan and Zofran have become good friends.

Oh well, done venting 😉   It’s been unpleasant.  But, I’m still living indoors, and have the blog and other online interactions (though the public comments on most sites aren’t worth the nastiness).   I’ll get the blood test done this week.  Onward !

UPDATE:  The Propranolol LA 120mg (generic for many, many years) is actually $77 per MONTH out of pocket.  And I have to have it.  I tried the regular release and all I did was sleep, get up to take meds, and sleep some more.  My life is limited, but being awake is one of the perks I do look forward to.

When There’s a Death In The Family

On March 2, 2014, my fifty-five year old cousin died. She would have turned fifty-six in May.  She was only five and half years older than I am, and my closest cousin on that side of the family since we reconnected as adults.  While she lived about 80 miles away, we stayed in contact by e-mail, phone calls, and the yearly family Swedish Christmas Eve party.  I’m still sort of numb, though her death didn’t come out of the blue.  She had a particularly evil form of cancer.  But it’s hard to really accept that she’s gone. She’s the first in our generation of cousins to die, who lived past infancy or early childhood; there were some tragic deaths of infants and children in the family, including my cousin’s older brother at age seven, when she was eleven months old .   If anybody could have beaten this, it would have been her.  For a while, she seemed to be handling chemo relatively well (it’s NEVER easy).  The complications  from the cancer and chemo were another story.  My brain isn’t working that well in writing this, so I apologize ahead of time if it’s scattered.  It’s disjointed, and it’s really, really long…  (for my cousin, the textbook editor… always succinct and grammatically proper… oy).

Our grandmothers were sisters who came to the US via Ellis Island from Nordmaling, Sweden (WAY up on the northeast coastal area, Lapland, reindeer, midnight sun) in the 1920s. They came over on the ship called the ‘Drottningholm’, leaving from Göteborg, Sweden when they were in their late teens and early 20s.  There were 13 siblings in all, and most of them came here, settling in the same general area in the Midwest, in and around Chicago. Nobody spoke English before they got here. They left everything they knew to start a new life .  Eventually, many moved all over the country as their families grew, and jobs took them away from the Chicago area.  Our parents are first cousins (at 81 and 89 years old)- both still very much alive and running around.

When we were kids, that five and a half year difference in age was huge, and I was in the ‘little kids’ group of cousins when we got together for family parties.  The big  yearly family  party was the Swedish Christmas Eve  shindig , and it was THE family party to look forward to  (crazy, crazy fun party !!). There is still a smaller version, that is equally anticipated and keeps that Swedish heritage alive, which is such a treasure.  Whenever possible, family came from all over to attend that party.  I’ve blogged about that elsewhere 🙂   I adored my cousin. She was ‘cool’, and always nice to us younger kids.  I was also the recipient of some of her outgrown toys when I was a little kid, which I still remember (really nice doll buggy, and a whole set of ‘Little Kiddles’ – little 3″ tall child dolls who had their own house that doubled as a carrying case !!).  We lived in the same city for many years, which not all of the cousins did, so I’d see her more often than many of the others of that generation. It was still only a few times a year, yet it was often enough to really like her and enjoy the times I did see her ( there were two of the boy cousins closer to my age that I saw regularly throughout the time I lived at home, before moving to Texas after nursing school in late 1985).  This cousin was someone I looked up to as a kid, and was so glad to reconnect with her when I moved back to my childhood hometown in late 2002.  I moved back a few weeks before Christmas Eve, so we saw each other  for the first time in many years at the now smaller Swedish family party.  We quickly became as much friends as  we are cousins.

When this all started last June 2013 (thereabouts), she called me a few times about some troubling symptoms, and her intense feeling of being discounted by the first gastroenterologist she saw (I later suggested she send her first full colostomy bag to his office).   I’ve been an RN since 1985, and she had some questions, and wanted to know what I thought about this guy saying  she was fine except for a minor problem (for which she was given some topical medication), and did that sounded ‘right’. Though disabled, I still keep my license, and need the 29 years of knowledge and experience to deal with my own medical issues- and am always more than willing to be a sounding board or ‘medical translator’ for family and friends.  This is a cousin who called me in the past for some of her family and  own questions when medical issues came up, and I knew that she knew her own ‘normal’ very well; she needed to listen to her ‘gut, in my opinion.  She’d been in France a few  weeks earlier, and had some vague symptoms there, and they were getting worse.   I told her that if she felt that something wasn’t being addressed, she might contact her primary doctor for a referral to another specialist.  And she did.  She was able to take a scheduled ‘fun’ trip to California after the initial specialist appointment, before seeing the new specialist.  While I was glad she was able to travel at the time, I’m even more thankful now that she was able to have two great vacations before her 9 months of hell began. 

She had an appointment for additional testing, but before she got there had a severe episode of rectal bleeding while at work, and was immediately driven to the ER at a nearby hospital.  She got the preliminary diagnosis (from a tactless ER doc) that she had a rectal mass.  She had known something wasn’t right.  She was admitted for more tests, and long story short, she was diagnosed with a neuroendocrine colon cancer after surgery and the full biopsy, which surrounded her rectum about %75 the way around it (basically like a fist around the end of her colon), and needed a permanent colostomy.  Surgery  took a little over week to actually get done, and in the meantime, she was in intense, constant pain.  She had a moderately ‘normal’ recovery from the surgery, and had to get used to the colostomy, and some decent pain management.  From there, she spent some time in a rehab facility to regain her strength before going home. I remember there was more going on (I still have some brain fog post-chemo), but she was looking forward to getting on with treatment. At that time, the plan was to treat it, and her plan was to do what was needed to  recover, and keep the part of the tumor that couldn’t’ be removed in check.

Now, I get mixed up as to what happened when, but over the next 9 months (give or take a week or two), she had non-stop hospitalizations and  complications with chemo and the cancer.   They were unable to completely remove the tumor because of how it was positioned and the nearby blood vessels, so lymph nodes in that area and additional tumors (spread from the main one) in her liver began to be an issue, growing and causing pressure.  She was given  various types of chemo (including a clinical trial ‘cocktail’ of already approved meds used for a different type of cancer, that was being looked at for neuroendocrine tumors), and I really felt that if anybody would be in the ‘survivor’ percentages, it would be her.  She was in otherwise  good health, and she was young, especially for this type of cancer.  But, neuroendocrine tumors are absolute bastards in the tumor world.  When I was looking up information when she was first diagnosed, I was horrified at the statistics… but I still thought that she had a chance.  It’s never over until it’s over. (Valerie Harper was diagnosed with a brain tumor and given three months to live; that was fifteen months ago, and she has said “Don’t go to your funeral until you’re dead”, and did ‘Dancing With The Stars’.  I love that. 🙂  )  And those statistics never differentiate between ages, other health issues, or actual cause of death. If someone dies crossing the street on the way to their appointment, they are included in the deaths from whatever disease is being studied and reported.  SO, someone who is 85 years old, with multiple chronic diseases, who is hit by a bus going to the store is still included in the cancer death rate because they died during some particular study.  So statistics are iffy- they are a reference point worth considering, but not the be-all, end-all ‘rules’ of survival/death.  I was looking at the possibility that a 55 year old female in otherwise good health could be in the small percentage of survivors- why NOT her?.  I couldn’t see it any other way… but I knew it would be a hard battle.

In the months she was being actively treated, she had a kidney stent (she called me about some nagging and increasing flank pain- and she was right; something was wrong– there was pressure on her ureter from the mass of lymph nodes, cutting off the flow to the bladder from the kidney- so her kidney couldn’t empty out, causing a lot of pressure and pain), low potassium and magnesium, constant vomiting (which can be a cause AND symptom of low potassium- ‘nice’ vicious cycle there),  an infection that I’m foggy about,  multiple fractures in her sacrum, blood clots in her legs, fluid around her lungs, a LOT of pain, multiple adjustments in her medications, a port placed (for giving chemo and drawing blood to avoid multiple IV sticks), medications to deal with medications, a new kidney stent, a lump in her neck from lymph nodes-which caused arm pain from the lump pressing on nerves, and on and on. And during it all, she was mentally going on as if she was sure she would be fine in the end.

I have over 700 e-mails between the two of us from the time just before she was diagnosed until January 2014, when I noticed things were changing because of the change in communication.  She wasn’t answering e-mails or posting as much on the support site for friends and family.  That was different. Something wasn’t right.  I didn’t call her much.  I knew she needed rest (and she had friends who were visiting her, which was SO wonderful), and if she didn’t answer e-mails, she wasn’t online, or up to ‘talking’/communicating. I understood that, and we had  an  arrangement that if she wanted to call, she could- and if she were at a facility, I’d call her back on the room phone so she didn’t have to use her cellphone minutes.  If she was home, she called from her landline.  I waited to hear what was going on from the site set up for family and friends as well.

I saw her at Christmas, and she was in ‘new’ pain (I was SO glad to finally SEE her after all of the  e-mails and phone calls !).  That would turn out to be the fractures in her sacrum, which she had to have glued back together.  She had her bones glued. Back. Together.    She never got a break during the entire 9 months.  There was always something else she had to deal with and/or get treated.    I cried a lot, as I knew that each time she called with something ‘not right’, it meant that the cancer was not giving up to the chemo.  In February, it became official.  The clinical trial meds weren’t working (and those aren’t given when there are ‘known’ medications that work) so that was already a sign that things weren’t going well at all… but someone has to make it, right?  There was nothing left to do. It was a matter of time, and not that much of it.

She called me in mid-February after being discharged from another rehab facility to help her get stronger after the hospitalization for blood clots, fluid around her lungs, neck nodes,  and getting her bones glued.  She  told me the doctors had no more  options for additional treatment. I’d already been told that her prognosis wasn’t good (from dad, via uncle, then e-mailing her mom, who called me back) , but I asked her if she’d been given any time frame and she said she didn’t want to think about time limits. She also said she didn’t feel like she was dying.  I’d learned a long time ago that patients do have some feeling of when their body is not going to recover.  My answer was  “then don’t” !  (Real clinical and technical, I know…).  I didn’t say anything about the time prognosis I’d talked about with her mom.  She didn’t need me to have some sort of mental countdown going on… so I blew that off as best I could.   She said she wanted to check out some alternative healing options and knew of a Chinese medicine doctor  nearby, and I told her she had nothing to lose, and who knows?  Something might help her at least feel better.  So much of Western medicine comes from natural sources (plants, animals, etc).  Why not?  I encouraged her to do whatever she felt was right for her.  She didn’t have anything to lose, and only something to gain.   She wasn’t ever able to find alternatives… she ended up on Hospice shortly after that phone call.

That was the last conversation we had about getting well.  She called me  a few more times, and each time she sounded weaker and more tired, sometimes a little foggy.  She wanted to know about how hospice decides when to do things, and when not to, and if palliative care was better (she wanted to be at home, so that pretty much answered that).  The last time we talked was within a few days of her death, and by then she sounded almost deflated and she told me she was tired of ‘all of it’. She was still denying any feeling of  ‘actively dying’, yet also sort of saying she was ready for it to be done.  She also asked me why I was able to get well (from the leukemia I had diagnosed in late March 2010, and had 19 months of daily chemo to treat, including 50 infusions of arsenic trioxide).  It wasn’t in an angry way, or in any way ‘upset’ with me  for surviving… it was almost a childlike tone, just wanting to understand the incomprehensible. I really didn’t have an answer, except that she got a meaner cancer than I did.    I told her I had just gotten extremely lucky to have been diagnosed while there was time to treat it.  Many people with what I had are diagnosed at autopsy; I know of two people, one a child, who were gone within two days of diagnosis.  I also told her to do this next phase of her life (the last days) however she needed to do them.  I guess it was how we said good-bye.  I didn’t know how soon ‘it’ would be, until I got word from the support site posts that she was sleeping most of the time, and rarely woke up…then I read she had a brief period of awareness and drank some juice.  That is common very close to ‘the end’, and I knew any calls I got from family would be to tell me she had died.   And that’s what happened.

Cancer is a mean, nasty disease, and there are various forms of cruelty that it can throw out to torment people.  She got one of the worst I’ve ever seen in the 20+ years I was working in various areas of nursing, and with other friends and family (my mom had breast cancer, second breast with suspicious cells, lung cancer, and brain cancer and all of the treatments and surgeries with those… and then dementia from the brain radiation, and lived for another 17 years cancer free).  My cousin never got a moment’s reprieve from agonizing pain, or if the pain was doing better something else would go wrong.  It was SO unfair.  It’s never ‘fair’, but she went through more in nine months than most people go through in a lifetime.  It’s not really fair to compare people’s diseases , since whoever is going through something like cancer is feeling pretty scared, and having their own journey with their disease, but from an objective standpoint with nurse eyes, she had it really, really bad.

One thing that she was so consistent with (even before the cancer)… she always knew when something wasn’t right.  She knew when there was something brewing or just outright wrong .  She knew her body- even with all of the ‘new normals’ she had to get used to- and she got things taken care of when she knew things weren’t right.  Everyone needs to do that.  She’d call me and ask what something might mean… and if she should call her doctor then, go to the ER, or wait until office hours (depending on what was going on).  Sometimes she needed an explanation about something, and sometimes I encouraged her to call one of her doctors (we’d figure out which one to start with since she ended up with several).  Other times, I encouraged her to get checked out as soon as she could.

I will miss her so much.  I already do.  And yet I’m glad she isn’t being tormented by that nasty tumor and it’s offshoots and chaos any longer.  She went through all of this with such grace and dignity, and never gave up the idea that she was going to be OK, until the very end.  And then, she went peacefully in her sleep with her mother and housemate at her side.   I’m not going to be able to go to her Life Celebration because of my own medical issues (and the logistics of getting there with various equipment).  I’m upset that I can’t be there.  I know she’d understand, since she knew I couldn’t attend but a couple of hours of the Christmas parties, after dinner was over.  I’m just really sad.  I wish I could hear more about her from the people who are going to be there.   I’d like to be there for her mom, and her  brothers (who have had to say goodbye to two children/siblings now) and their families.  So instead, I write to clear my own head, and in some very small way, pay tribute to my cousin.  There are a lot of things I’ve thought about during this past nine months, and how my cousin made my life better just by being herself.  As adults, we had a great relationship, and I found her to be   a kind, compassionate woman, with a great sense of humor and an amazing work ethic.  She was never judgmental.  She looked for the good in everything we ever discussed.  She was loyal, and able to help me out with her own perspective on a difficult situation. She knew how to have a conversation without injecting drama.  She let me be there for her, when I often feel like I’m not useful for a whole lot anymore.  I just wish it had been for something that left her here (I’ve never had a ‘nurse call’  be for anything good 😦  ).  It’s always hard to say goodbye to someone, and someone in my generation in the family is just plain scary.   Especially someone I really cared about, not just because we’re related, but because she was a person who added so much good simply by being.

I will love you always, K.P.A.

What If It’s Bad News?

My dad turned 80 years old a few months ago. He’s active, takes care of himself, has a lot of friends, and has never really had to handle serious medical problems of his own. He saw my mom through four cancer surgeries, radiation, chemotherapy, dementia from radiation, and many other surgeries and hospitalizations. He’s seen my disabilities and inability to work as an RN over the last few years.

He’s got an amazing social life, and solid church community that is a big part of his circle of friends.  He goes out walking nearly every day, whether at the mall or a nearby walking path.  Most nights he has something to do and somewhere to go.  He drives all over the place, and is safe driving.  His mind is intact, and he enjoys so many things.

Last week he had a biopsy done on a mass on his neck.  It’s a good sized mass for being on his neck- about 2.5 x 1 x 1.5 inches (not centimeters).   I’ve felt it, and it’s substantial.  Any neck mass can become very complicated because of all of the other structures in that area- windpipe, esophagus, arteries, veins, muscles, nerves… it’s a crowded area for an abnormal mass.  This isn’t really on his thyroid.  It’s more ‘vertical’, and along the trachea- but a bit over to the right.

Today at church his doctor said that there were ‘suspicious cells’ in the biopsy report.  If the test had been ‘OK’, he would have said so.  There is only so much he could say in the middle of the church lobby; to me that isn’t good.  I have no idea what sort of cells they found- and it is possible that whatever is there is very treatable, and not life-threatening.  ‘Suspicious’ doesn’t necessarily mean cancer- but it could.  I’m the sort that thinks about the worst case scenario, and then is pleasantly relieved when it’s good (or better) news.  So my mind is going all over the place.  I’ve seen too much since 1985 when I became an RN.

Mostly, I’m scared for my dad.  IF it turns out to be cancer, there will be decisions about how much to treat it. Tomorrow, Dad is expecting a call from his doctor’s office about a referral to a surgeon; the mass has to go. That has been decided.  After that, I worry about chemotherapy (I finished 19 months of chemo for leukemia a bit over a year ago).  It’s brutal, and not meant for someone with an active life who has never been sick to any extent in 80 years.  I think about radiation- and the  possible side effects. My mom ended up with dementia after radiation to her brain for cancer. Granted the neck isn’t the brain…but I can’t help but think about it.

I’m afraid I won’t be enough help because of my own limitations.  I drove myself to all of my own chemotherapy appointments (more than 50 of them for the IV infusions), but I’m not sure Dad will want to go alone.  I’ll figure it out, with the medical equipment/supplies I’d need.  We’ll get through it.  I just want to do enough.  I want him to know I support him.  I want him not to be any more afraid than he ‘has’ to be.

As a nurse since 1985, I’ve seen a lot.  I know what can happen with neck surgeries, and also what happens when people just want to try anything and everything ‘in case’ something works. I ‘get it’.  It’s human nature to want to live. I’ve seen so many slow deaths from cancer. If this is cancer, there will be a lot of decisions he has to make.  I don’t want him to have to deal with any of that.  I want this to be some cut and dry ‘surgical fix’, and not months of being tied to chemo and/or radiation appointments.  I’ll be supportive of whatever he decides; I just hope that he finds quality in the rest of his life and that this is a temporary bump in the road.  He’s been so active and healthy; something prolonged would be very hard for him.

Tomorrow he will know more, and I’ve asked that the doctor’s office also call me, so I can hear from them what is going on.  I’ve never asked him to have them call me before.  But I’ve never had him tell me that the doctor said he had ‘suspicious cells’ in an abnormal mass.  It’s my dad.  My mom is gone, and he has been my rock.  We talk daily to make sure the other is ‘ok’.  When I’ve been in the hospital, he’s the only one I’ve had to make sure my dog is OK (and that is a huge relief when I’m holed up).  Hopefully, I’m just being an overly worried nurse who knows what ‘suspicious cells’ can mean.  Hopefully, the surgery will be simple and fix a benign problem.   Hopefully, my Dad won’t have to make decisions about quality vs. quantity of life.  Hopefully, I’ll be able to be ‘enough’ help and support for him.  Hopefully, it’s not ‘worse’ bad news. ❤

Diabetes After Chemo

I woke up this morning with a blood sugar of 205mg/dl.  Very NOT OK.  Before chemo it was between 65-85 mg/dl nearly every day, and rarely over 100 mg/dl (where it’s still tolerable).  After getting off of all chemo, it’s been around 140; sometimes lower.  I don’t know what’s going on this morning.

Ever since being on chemo, my blood sugar control has been totally nuts. There has been no control, but oddly, my A1C in February was 6.7, or around there. I was amazed. I expected it to be over 7 for sure. Usually it’s well below 6.  I’ve had great control, with a fair amount of effort.  My body is still figuring out it’s new normal since the leukemia.  The blood sugars (and need for more insulin) don’t help the weight loss issue.  Insulin stores fat. I need to lose the forty pounds I gained while on chemo.

I have to admit, my carb counting has been ‘fair’.  I know the carb counts of most things, and do look at labels, but I’m not doing the extensive counting that I did before. I need to get back to doing that.   I don’t want to go blind, lose a leg, or have kidney failure.  Nope.  Don’t want those on top of what’s already wrong with me; I’d end up in assisted living before I’m 50 years old.

I took the usual amount of NovoLog insulin this morning, and added a bit because of the psycho fasting blood sugar.  Now (2 hours later), my blood sugar is 135mg/dl.  I’m glad it’s going down, but not sure I’d planned for it to drop that fast.  It still needs to get considerably lower before it’s a problem.  I’ll be sticking my fingers a lot today.  It’s sort of a ‘sick day’, except I can’t figure out what is ‘sick’…

Chemo changed a lot of what had been controlled: my weight, my blood sugars, and my insulin dose.  I’ve been off of chemo for nearly a year (11 months).  I’m going to have to go back to the rigid counting and figure out the new insulin:carb ratios.  My I:C ratios had been so steady before.   It’s been nearly 2 1/2 years since the initial diagnosis.  I have to remember my ‘old normal’ way of dealing with the diabetes, and apply it again to this ‘new normal’… which isn’t normal at all.  It’s a lot like starting from square one.

My physical situation is such that sitting exercises are all I can do.  If I walk more than the distances inside my apartment, I have to use a walker. Or shopping cart.  My balance gets iffy. So exercising is a problem.  I’d love to walk around the neighborhood on cooler days.   That IS my ‘old normal’ and ‘usual decrepit’ – LOL.  That is back to ‘normal’, which hasn’t been ‘normal’ for a long time.  I’d torn my left ACL and meniscus (mildly) the summer before the leukemia diagnosis, and because of beginning to feel lousy (thinking I was just being a slug) I postponed the knee replacement that was recommended.  When those big ball players roll around whimpering or screaming on the field after their knees go out, they aren’t being weenies- that HURTS. I’d been using a walker in my apartment up until the morning I was admitted to the hospital when I was diagnosed with leukemia.  Being physically limited is nothing new.  Anyway, I’d like to exercise more, but it isn’t generally safe.

So, I’ve got to buckle down and get these blood sugars under control.   I’ve got to lose weight. And I’ve got to get it done without triggering old eating disorder habits.  Sometimes it seems overwhelming.  Sigh.  But I’ve got to do something.

ChemoHairapy

Losing the hair was one thing. The odd assortment of characteristics it had growing back was quite another.

The first time it grew back it was fuzzy and thin.  Kinda nice, actually.  I’ve always had really thick hair, and with an intolerance to heat from an autonomic nervous system disorder, that wasn’t a great thing.  That first new sprouting was sort of like a chinchilla’s butt, in texture and color.  Not bad !

Then I lost my hair again, and what grew back was very, very strange.  First was the color- it changed with the angle.  It was either dark brown (normal) or a navy ship gray- depending on how I was facing someone.  I was probably very nauseating to look at when I shook my head. The second issue was its defiance of gravity.  It grew straight UP for about three inches, at which time it lilted over.  Eventually it had to lie down, but it didn’t go down without a fight.  Drove me nuts. It was like a chinchilla and porcupine got busy and dumped their mutant offspring off on my head.

Now, it still gets to some length and starts to bend.  It’s not curly. It’s bent.  The part in front of my ears just goes nuts, and looks like glue-on sideburns. That shake. And grow forward. Uh huh. Nobody told me about all of this.  I knew it would be different.  I wasn’t expecting it to have a life of its own.