The Disaster That Was 2016

I’m not in a good mood.  This year has sucked rocks.  I won’t go through the myriad of shootings, public riots, celebrity deaths, cop shootings,  “unarmed” shootings, local crime rate, racial tension,   blah, blah, blah.  All that does is make me dislike humans more intensely (and with the racial stuff, it’s usually the arrogant white folks that piss me off the most).   Since my dad died in April of 2016, I have had few interactions that I really cared to be a part of.   They were ‘mandatory’ or required to be just social ‘enough’.   If I tried to escape  I’d turn on the TV  just to hear about how horrifically humans were treating each other, and it just made me grieve for civilization.   Thank God there were enough interactions with a  few people that at least kept my head above water enough to breathe.   I’m very grateful for them.

The presidential election process further lowered my respect for humans in general (a few exceptions helped me not lose all hope).  One relationship ended because of the rabid and incessant postings of negativity about Obama…. get the hell over it- he was elected nearly eight years ago… MOVE ON.  I can’t stand the constant and so ‘wing-nut right’ rants.     I didn’t much like any of the candidates this year, but the options in the end were  almost unbearably bleak… one much more  than the other (imho), and that’s who we’re stuck with now.  It does warm my heart that he didn’t win the popular vote.  There’s a glimmer of sunshine there. Doesn’t matter who specifically won the popular vote, as long as it wasn’t the sociopath.   I’m grateful for that bit of hope.

Back to my dad.   He died on April 4th at 12:50 a.m.  He wasn’t ‘expected’ to die during that period of illness, and like my mom, he had been blown off when he complained about pain/had symptoms.  Don’t go to rehab hospitals where they have such narrow focus.  They try to fit all symptoms into the disorder they are treating.  Dad’s former (very sweet) lady friend of eight years went to the same place, and she called me to ask what she should do since they weren’t dealing with the fluid accumulation in her abdomen (she had cancer).  I told her to ask to go to the ER for an evaluation.  She did, and ended up having to have multiple ‘drainings’ of the fluid. But the facility didn’t come up with the idea to send her in for evaluation on their own- she had to ask.    I wish I’d been more astute with dad’s pain.  He wasn’t great at describing pain, but I feel bad that I didn’t see more.  I am extremely relieved that I was with him during those last 19 hours.  To have missed that would have killed me.  I made sure he knew I wasn’t leaving him before he went into a coma.  I promised not to leave him, and I didn’t .    But as an RN since 1985 (regardless of being disabled, I keep my license), I have constant ‘brain drain’ about what I should have done to help him more.  He was a great dad.  He didn’t deserve that much pain.  He deserved to be listened to and believed by the people who were supposed to be caring for him.

There was another ‘lady friend’ ( “B”) that dad hung out with socially for about a year before he died, and who was around  like flies at a picnic during the last month of his life. She encouraged him to be dependent, and robbed him of whatever independent activities he could do… which weren’t many.   She turned into more of a nightmare after he died.  She obviously had some intense delusions about the type of relationship she had with dad.  Dad truly  liked the companionship (and her billionaire son in law fascinated him- only thing he mentioned if someone asked if he was seeing someone- never mentioned her by name).  She liked “possession” of him (and had a total hissy fit when I told another one of dad’s lady friends she could put photos on the photo table at the visitation; it was a pathological reaction- they were. not. married.  I included as many of his special lady friends as I could find photos of) .  She also hurt me intensely after the funeral, complaining that she wasn’t mentioned by name ‘enough’ during HIS funeral.  She said her church friends all noticed it and that the pastor who did the service had it in for her since she wasn’t a member of dad’s church… that pastor hadn’t even worked at that church for a while… “B” was clueless and so friggin’ insecure and paranoid.  She wanted to know why I hadn’t consulted her about financial matters (like it’s her business- she was fishing for info, imho).  She also told me (dad’s daughter) that SHE would miss dad the most.  Seriously?   He was my DAD.   She was a 1.2% part of his life. That’s it.  Barely existed (would you miss 1.2 cents from a buck?)  She told me that dad didn’t like the one  lady friend (with photos, who he’d known since high school), and I knew that wasn’t true.  That’s when I started to see “B”  more clearly.  She fabricated things to make her feel like his lifelong love… well, she missed that train when mom married him, and then the wonderful lady he saw for eight years after mom died.  I’d lost my dad, and she was ragging on about all sorts of stuff.  Sure, I knew she’d miss him.  But her degree of histrionics was exhausting and painful.  “B” was creepy- saying that she saw him looking back at her when she put his glasses on her kitchen table (she had a mild conniption at the visitation about when dad’s glasses were going to be taken off… I told her to take them just to shut her up).  I do hope she’s well ( and well away from me).  I pray that her macular degeneration is stable, and not getting worse.  And I want nothing to do with her.  I had to have the garage door opener codes changed because she refused to give me back the one she was last known to have.  I added keyless deadbolts.   When I think of her now, I wonder about her DSM-V diagnoses.   And I still wish her well.

I’ve been contacted via greeting cards by two of my deceased mom’s siblings who made sure I was excluded as ‘family’ while they manipulated and dismantled my late grandmother’s trust (grandma was spineless when it came to standing up for what was fair… she got bullied and she folded) . It was mangled after my mom died, and the surviving siblings kept ensuring they profited off of their dead siblings each time one of them died.   Once someone writes me off, it’s over.   I don’t want to  be reminded of their existence with hypocritical cards.   Either I’m part of the family, or not.  Can’t have both.  They deleted me based on lies they KNEW were lies.  That’s what gets me the most.  Screw the money.  I’d settle for truth – but that bunch is incapable.  Leifheit Logic in that generation has been sketchy at best for decades.    My mom was in that generation, and her biggest ‘flaw’ in regards to logic was keeping her marriage vows and having strong faith… maybe they resented her for that… ?  .    Hard to tell with narcissists. I do know that I want nothing to do with them.   They ‘cancelled’ my family ‘membership’ – and that’s just fine.  But be done with it already.   GO AWAY, even via mail.   I am thankful that the six cousins I have from the other ‘discarded’ sibling understand that we’re worth nothing to the greed-mongers.  I didn’t even tell mom’s surviving siblings  when dad died; they found out on Facebook…  never occurred to me to consider them part of the family to notify.  They dumped me about 5 months earlier.  It wasn’t even an issue in my mind/life.

I’m going in to 2017 with a questionable mass on my neck.  I have a CT scan scheduled for a week from tomorrow.  The hope is that it’s just a lipoma (nothing major), but with my crazy medical history, including a LOT of chemo for leukemia, there is always a  question about more cancer.  Chemo can cause cancer (isn’t that special?) .    It has no doubt contributed to the increase in peripheral neuropathy (including the dysautonomia/POTS).  But without it, I would have been dead in 2010.  Pain is more intense now, including the degenerative disc and joint disease.   I see a new chiropractor next week to hopefully put my neck ‘back in place’.  But, I’m alive.  That is still worth it.

I know I have a lot to be thankful for.  That isn’t lost on me by a long shot.  But like anybody I still have my bad days, and today is a really lousy one.   Next year, I MUST lose weight.  I need to do all I can to avoid future joint replacements and minimize joint and disc pain.   I have to get more focused on keeping track of carbohydrates and insulin requirements.   Right now, my blood sugars are very unstable.  Stress isn’t helping that.   But I’ve got my dog.  She is always happy to be around me, and I’m so thankful for her.

Mostly, I’m thankful for God.  That is my ‘Constant’ and my Hope.  I don’t generally find organized religion to be satisfying, but I do love the Lord.  Call it what you want if you don’t believe… for me , my faith is the only thing that keeps me going.   I know that this life is temporary, and that after this earth, it’s all good.   I don’t like the politics of Christians.   I aim to be more compassionate than the judging and ‘dismissing’ of entire groups of people – and I’m not unaware that my feelings about that are also judging and dismissing (I’m working on that).  And, I still love God more than any human I’ve ever met.  Fortunately, I had a  great earthly father to show me a small example of what a Heavenly Father feels for His children.   When this earth and its people depress me, I remember God.  He has this all in control.   I don’t have to worry about any of the mess going on… in the end, good wins.   I don’t have to worry about what others do, or use them as political pawns.  I only answer for what I do.  When there’s nobody to talk to, God is always there.   No matter what, God is my refuge and joy.  He is what makes tolerating this earth bearable.   I know it’s all going to be OK one day.  Maybe not soon, or maybe tomorrow. It doesn’t matter when.    He wins every time.    And I know that HE  alone can help me see things in a way that is less painful.  HE can remind me of the good that is already here.   I don’t think I’d be able to function if I didn’t have that hope and assurance.

Feeling My Body Fail

This has been a rough six months on top of a weird twenty years.  I’d learned to deal with diabetes, fibromyalgia, chronic pain, degenerative disc disease, nocturnal seizures (left temporal), degenerative joint disease, GERD, and the temporary effects of acute disorders like multiple pulmonary emboli (all three lobes of my right lung and right pulmonary artery), and acute promyelocytic leukemia (APL), or acute myelocytic leukemia- subtype M-3.   The longterm effects of chemo have been rough and more noticeable  in the last few months, and the thought at this time is that much (not all)  of what has been going on recently is a combination of chemo effects, and  the progressive nature of diabetes (even with good control, though chemo totally ripped my blood sugars to shreds).  I had chemo DAILY for 20 months (ATRA – all trans retinoic acid, M6 mercaptopurine, arsenic, methotrexate, and initially daunarubicin, ara-C, and assorted meds for nausea, fluid retention, and protective eye drops.  I was also on gentamicin and vancomycin for most of six weeks.  I think that things are just catching up.

This summer, a lot started to happen at once.  The GERD (reflux) got really bad, so I was sent to a gastroenterologist (GI) for some testing.  Most of those tests turned out relatively OK (to a cancer survivor, that means nothing malignant… something could be rotting and ready to fall off of my body, but if it’s not cancer, it’s pretty much OK).  I have chronic gastritis (so no more NSAIDs – or ibuprofen type meds which is a bummer for pain management), and some irritation in my esophagus, and I was supposed to have a gastric emptying test (related to gastroparesis- a diabetes complication, but because of pain, I can’t lie on my back as long as is required…. and if I burp yesterday’s lunch in the morning, that tells me something isn’t moving).  I tried to have the esophageal manometry test done last week, but SURPRISE !!!  I couldn’t swallow the tube !   I’m being tested for swallowing problems.  Now, I have to be knocked out, and have the tube put in under anesthesia, woken up, then swallow water 10-12 times, then have the tube pulled out).   I’ve had to eliminate a few foods/food groups, but that’s OK.   Marinara sauce, chili, fried foods, ‘high volume’ foods (like full meals), and some other things are out of the picture for the GERD. I cheat once in a while, but have to have Tums and Gas-X available.   For the swallowing issues, dry foods, meat without ‘lube’ (sauce, gravy, stewed), celery, hard breads, rice without some type of moisture, etc are out.  I literally have to pull the food out of my throat before inhaling when something gets stuck.  I keep 8-inch curved hemostats next to where I eat. It’s rather scary.

The pain.  Oy.  I don’t remember ‘pain free’.  I’d gotten used to just dealing with it, but this summer, the neuropathic pain got very noticeable, and the burning pain along my right outer thigh got really bad at night.  Now both of my feet burn at night- though neither of them are every night.  The sensation during the day along my right leg is weird.  If I stand too long, I feel like my leg will give out.  I got a wheelchair last week, and the one time I have used it so far (only need it away from home at this point) has been very helpful.  I’m going to have to use the scooter at the grocery store from now on, and not have a three-day recovery period every month when I go to do my main shopping. I’ve got a few volunteers who have agreed/offered to come with me to push the larger cart.  It’s just too much now to do monthly shopping.  The pain management  doctor (board certified in pain management, and ‘legit’… no lines around the block, no shady characters in the waiting room, and lots of rules about how he does things that I respect) said that if the methadone doesn’t work, then the next step is a peripheral nerve stimulator… kind of like  a pacemaker device implanted under my skin that sends out little zings to trick how my body perceives pain. (BTW, methadone is a legitimate pain med, not just used for exchanging it for heroin in drug addicts).    I am usually pretty tough during diagnostic tests, and have had many, many MRIs over the years, but this summer I had to bail before the “with” contrast part was done.  I was in tears just getting the “without” part done.

I did get through the EMG (done at my neurologist’s office, by her), which clarified that it’s a progressive sensory peripheral neuropathy… it’s gonna get worse.  The implications are kind of scary. I’m already noticing some altered sensation in my hands- so being in the kitchen is a little dicey (pun intended).  And, if I lose sensation in my right foot, driving will be out of the question.  Right now, I have enough sensation- and I don’t drive much, so it’s OK for now.   A couple of weeks ago, I was opening a box of stuff I’d ordered (monthly Amazon or Walmart supplies) and I didn’t feel the inner angle of the scissors ‘catching’ part of the ‘pad’ of  my right thumb… and it got cut off (about the size of a pencil eraser- and completely cut off about 1mm deep).  :/   That was pretty sore for a while.  It’s still not completely healed, but much better.  I’m going to have to pay much more attention to hands and feet.  The decrease in sensation means that I could whack something off, get an infection, and end up with an amputation (pretty common in diabetics).   ‘Help’ aids for opening jars, buying pre-cut veggies at the store, etc are going to be things to consider.  I got one jar opening thingie, and it was useless…. it fit around the tops of many sized jars, but without the strength to hold the jar in my left hand, it’s pointless.   I can still do the vacuum release move with an old cheesy can opener, and then get the lids off- at least for now.

My blood sugars were also getting wonky again so it was back to the endocrinologist. She wanted me to try a new type of long-acting insulin- but as usual, I had to check my Medicare plan D formulary to see if it was covered, and at what ‘tier’ for copay purposes… this year, it’s not good; next year I can get it !!  I’m so excited to be able to get a type of insulin that wasn’t popular in the 70s !!  She got me enough samples to get through until January 1st, which brought me to tears.  The short acting insulin is also going to be doable next year- and she got me samples of those as well !!    It requires me to pay three times more for my monthly premium next year, but it’s SO worth it for no deductible, full donut-hole coverage, and good monthly copays for each medication (I’m on something like 15 prescription meds and many over the counter meds that are always out of pocket).

Then there are the changes in the symptoms with the autonomic neuropathy /dysautonomia.  I was sent to a cardiologist (I’ve been trying to cut down on the number of docs I see, and that plan isn’t working well).  Because of multiple medication changes for my blood pressure meds (which is actually used to keep my blood pressure UP in a paradoxical way), and my blood pressure going down far enough for long enough to decrease blood flow to my kidneys ( that was ‘fixed’ with medication changes and more deliberate fluid intake), I needed someone to take a look at what is going on.  Dialysis has always been ‘the’ diabetic complication that I’m not sure I’d get treatment for; a machine 3 times a week indefinitely doesn’t sound like quality of life to me.  Anyway, the cardiologist sent me for a simple ultrasound of my heart (ECHO) and did a simple EKG.  No results on the ECHO yet.  She adjusted a couple of meds, and the next step is to add another med, which I do NOT want.   I’ve had a LOT of episodes of near syncope and increased heart rate (not necessarily at the same time, but if my heart rate stays up, I generally pass out because it will suddenly drop; I have to get home and get my feet up or just go to bed – which usually takes care of it).

So, I’ve seen my primary care doc, gastroenterologist, pain management doc, neurologist, endocrinologist, and cardiologist since this summer.  I do not like doctors’ appointments.  Leaving home is painful.  They usually want to order tests, which means more time away from home.   I appreciate their help (though the GI situation is horrible to get anything done; right now, I’m waiting to get the anesthesia assisted tube placement to measure esophageal spasms -achalasia is suspected-, and they have a very blasé attitude, even when I’m pulling food out of my throat because it won’t go down).   I need to get things treated to the point of maintaining independence as much as possible.  And, I’m going to have to suck it up and ask for help when needed.   That is hard, since most of my friends are 1200 miles away… or have lives/families/jobs/etc.   And I don’t like to be ‘dependent’.

I know I have a lot to be thankful for.  I’m still in my own apartment.  I still have my dog.  My dad is around (he’s 83, and has a full life; he’d help but the ongoing commentary at the grocery store for a full month’s shopping would be too much- he doesn’t shop for more than a few days since he eats out a lot), and he is a huge part of my life.  I have a lot of online friends and family.   I’ve got family in other states that I’m in contact with.  There’s a lot of good.   But it’s hard to see things changing.  Fortunately, as an RN- disabled, but still have my license- I know what to look for, and know what types of ‘help’ devices are out there.   I know when to ask my doc for things like the wheelchair.    I’ve got some word-finding issues, but my brain seems to be mostly intact- LOL.  😀   Always stuff to be thankful for 🙂

 

I’m SO Sick of Pink Cancer Ribbons… Hear Me Out, Please !!

We’re all pretty well aware of cancer.  The pink ribbons are really marketing tools- and that’s fine.  But it really chaps my hide to see the pink ones so prominently.  Like it’s the “most important” cancer… what about prostate, lung, thyroid, pancreatic, liver, bone, colon, testicular, brain, pediatric, blood, skin, and other cancers?  Any cell in the body can become cancerous.   We need PLAID ribbons.  (The rainbow has been taken).  Let everybody have equal showing in the cancer awareness campaigns.  I’d wear a ribbon that represented all cancer struggles.

I don’t have anything “against” breast cancer (my mom had bilateral mastectomies, along with lung and brain metastasis).  But what about all of the other folks out there?  Just last year, my cousin Kathy died after a 10 month hellish fight with neuroendocrine colon cancer, my dad’s friend Marilyn died after a 9 month horrible battle with ovarian cancer, and my uncle Lee died from esophageal cancer just weeks after diagnosis.  In the past, my biological father (Phil) died from brain cancer (metastasized from his kidney, dead at age 49; we never met because of cancer), a cousin’s wife (Pat) had kidney cancer that went to her liver (was also in her bladder), my dad  (adoptive guy I grew up with from the time I was 10 days old) had thyroid cancer 3 years ago, two cousins’ wives had blood cancers , I’ve had leukemia, another cousin’s husband  had prostate cancer, another aunt with breast cancer,  another one who had to deal with knowing she had genetic predisposition to breast cancer,  and there are many other relatives that I’m forgetting (or can’t remember the actual site) that matter.   Then there are the friends – several with stage 4 cancers (lung, colon, and colon going to lung and liver) who are still fighting or have done well .  And some who lost that fight.  They all deserve to be recognized for their battles.  I’m just one person who knows this many people who have or had cancer.  I’m not naming the ones who are still alive.

I have been an RN for 30 years.  While I’m disabled now, I took care of a LOT of cancer patients (mostly on a surgical floor- and we also did ‘end of life’ palliative care; we couldn’t fix them, just ease their last weeks and days).  Four stand out.  One was a Holocaust survivor with terminal colon cancer (the sweetest lady, who had more than her share of hell on earth).  Then there was the 40 year old construction worker who had just had a melanoma removed (still had sutures) when he started having headaches.  After 3 trips to the ER, they did a CT scan of his brain, and found multiple sites. He was admitted (I was the admitting nurse), and found that he had lung, bone, and liver metastasis as well…. he lived for a month. I pronounced him dead and watched the funeral home take him away.  There was the lady who had just had a baby and was having trouble breast feeding; ends up that stage 4 breast cancer was blocking her milk ducts.  She’d never see that baby grow up.  There was the lady with pancreatic cancer, who was ‘Big Bird yellow’ and looked like someone had strapped a basketball to her belly because of fluid accumulation; she had a miserable last few weeks.  There were dozens, if not hundreds, besides those four that I took care of (mostly as a charge nurse- so not direct care in some cases).   When I worked neuro, as a direct bedside care nurse, there were a LOT of brain tumor patients.  The malignant ones never ended well.  Glioblastoma multiformae (GBM) – stage 4 = grim prognosis.  The tumor has ‘tendrils’ that bore into the surrounding brain tissue to never be fully removable.  Though stage 4 in some sites is more and more treatable- much more than when I was still working- it is still generally felt that stage 4 means that is what the person will die from.  But there are never any accurate timelines; more people are living longer WITH  stage 4 cancer than ever before.

Then there are  the two little relatives of a friend of mine, just a couple of years ago-Cole and Sadie (nephew and niece) – diagnosed within weeks of each other, who both died… an 11 year old and 8 year old.  One had the same type of leukemia I had, and went to the ER on the Sunday after Thanksgiving, not feeling well since the day before; he went into a coma on the helicopter transport to a larger hospital, and was gone the next morning.  Never saw it coming.  No symptoms that were red flags.   The 8 year old survived less than a year after a diagnosis of  GBM Stage 4… St. Jude’s did what they could… but glios are notoriously tough to treat.  Then there were the kids when I was a kid- one who had brain cancer when I was in 3rd grade (he was in 4th grade- his name was Mark), a friend’s 8 year old ‘big’  brother (I was in first grade when he died- I still remember hearing about him dying.  His name was Thor.)…  Facebook is full of kids with cancer.  I can’t handle that type of grief, even if I don’t know them… what their families and friends go through is just heartbreaking.  I’ve heard parents make that guttural, primal  scream of that ultimate loss when I worked pediatrics (our PICU was connected by a narrow hall, and those sounds travelled).  The pain they feel is palpable.

I had acute promyelocytic leukemia- the most lethal leukemia if not treated (many folks diagnosed at autopsy after some type of ‘bleed’ or hemorrhage ), and the best outcome if treated- per  my oncologist.  The average survival without treatment after onset is ONE month.   I was very lucky (or more like God was looking out for me).  I had no specific symptoms- I’m disabled with a bunch of diagnoses, so I never feel “good”.  I just happened to get my annual lab work for my diabetes, and it showed a BAD ‘complete blood count’ (CBC).  Like really bad.  It took 2 weeks to get an appointment with the oncologist, and he scheduled a bone marrow biopsy for the next week.  That was 3 1/2 weeks of my month ( I didn’t know that then).  The weekend before that, I felt bad. I went to the ER, and stayed for 6 weeks, starting induction chemo.  I then had 50 dose (2 25-dose cycles of Monday-Friday for 5 weeks x 2 cycles) of ARSENIC (Trisenox- look it up 😉 ).  Then another year of maintenance chemo.  My body has never been the same.  No eyebrows or eyelashes aren’t that big of a deal- but the increasing neuropathy and weird weight gain has been rough.

So, I’m not cold or indifferent to cancer.   I’m just tired of the boobs getting the press above the others.  This month, the NFL will have their players in pink shoes and other accessories (they look ridiculous).  Go figure… the boobs win out as to who gets their public support.   It’s kind of a kick in the face for those with other cancer struggles, wins, and losses.  They are ALL important.  All of the survivors and lost fighters are important.  They all deserve some undeniable recognition.  If someone sees an orange ribbon (leukemia) or yellow ribbon (pediatric cancer), do they know what those are for?   So, I suggest plaid.  Get everybody in there.  Weave them all together, since so many cancers spread.  Maybe finish them with the color of the cancer a specific person has.  But acknowledge them all.  They all matter.  Nobody struggles more than anyone else.  Everybody needs funding for research.

I will very rarely ‘share’ Facebook posts about any cancer.   I feel for those struggling with it, and for those who have lost family and friends to cancer.  It’s not because I don’t care.  It’s because I’m sick of SO many being affected.  And only the pink ribbons being ‘iconic’. Everybody with cancer matters, and deserves to have money funded into research for their type of cancer… not just the boobs.

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 🙂 ).

Goodbye, Kathy….

My cousin’s Life Celebration event is happening next Saturday (3-29-2104).  She died from neuroendocrine colon cancer on March 2, 2014, after a horrendous eight plus month battle.  She fought hard.  She had so many complications from the cancer, as well as the expected miseries of chemotherapy (which nobody really anticipates, because any prior frame of reference is just far too inadequate).  She wasn’t able to catch a break during that whole time, from a month or so before she was diagnosed until she died.   But her support system was amazing !  Her mom and brothers (and their entire families) were there as much as possible. I am still in awe of her co-workers and friends who never stopped caring, or offering some type of transportation, meals, or other ‘actions’ of support.  I was so thankful she had that. I wish I could have done more.  I wish I could be at the Life Celebration to meet so many of her close friends and co-workers.  My own medical issues prevent me from doing an all-day-away-from-home thing with the equipment I have to have.  So, I’ll have to be there in spirit only.  SO, I write, and hope that I don’t dishonor my amazing ‘editor-of-textbooks’ cousin with inconsistent verb tenses and other grammatical horrors 🙂   Emotions and tears are messing up my self-editing a bit.

When I moved back to my hometown in very late 2002, we reconnected at the legendary family Swedish Christmas Eve party.  That was the beginning of us becoming good friends, as well as cousins.   We e-mailed and talked on the phone periodically, and it was always as if we’d just been in contact the day before.  We reminisced about past Christmases and various relatives, and laughed a lot. She was always so supportive about the myriad of medical issues I’ve gone through, eventually ending up disabled.  As an RN,   I was able to help out when there were things going on medically  with family members (including Max, her cat), as well as herself.  I’d try and explain the crazy confusing medical things.  And then came May 2013.

She called me before her trip to San Francisco, telling me of some troubling symptoms, and asked me what I thought, as she’d seen one doctor who just wasn’t giving her the idea he really heard her.   I had my usual “piss on him” reply, since doctors work for the patient, and if it’s not a good fit, the doc is the one who needs to get the boot.  I suggested she ask her primary doc for a referral before the San Fran trip to get an appointment scheduled, which she told me she planned to do.  My memory of what happened when is blurry from that point on, since Kathy began having intense pain, with frightening changes in symptoms not that long after her first appointment with the new doctor.

When she finally got the diagnosis, I suggested she send her first full colostomy bag to the jerk doctor that blew her off (she cracked up at that one 🙂 ).  Then, I started looking things up on the internet about neuroendocrine tumors.  I’ve worked in many different areas as an RN, but not specifically on any oncology floors (where the chemo and cancer-specific care takes place).   I can take care of post-op (surgical) cancer patients in my sleep… but when I saw the information online, I just cried.  I had to reboot myself, so I could be more useful for her.  The statistics were grim, but very few things in medicine are absolute, and with her otherwise good health and age, I really hoped she’d be able to beat this, and be one of those in that very low percentage of survivors.  She was offered some treatment options.  Kathy never had any other intentions.  LIVING was the only option she considered.  We never discussed anything about her dying, aside from a few statements and questions at the very end.

Something really important began to happen over and over again during her battle.  Whenever she felt something wasn’t quite right, or the explanations given by the doctor just didn’t seem to fit, she’d call me because she knew something wasn’t right.  I noticed  how incredibly well she knew her own body, when she was having to get used to SO many ‘new normals’.  She just knew when things weren’t right.  AND, she did something about them.  She didn’t wait for something to completely fall apart before finding out what could be done to fix it, or at least figure it out. If what the doctors were saying just didn’t feel like what she was experiencing, she found one of them who could explain what was going on in terms that made sense. Doctors can be so good at blowing through explanations that sound like Greek dipped in Latin, leaving patients more confused or just unsure; add chemo-fog to that, and it gets even worse.  More people need to follow her  example- keep asking until you know.  I told her that I was going to blog about that at some point, and she was fine with it.  I also promised not to throw her identity out into the universe in the blog (as well as not name too many others’  names). Thankfully, she was given a name that still allows me to recognize her, while honoring her wish for anonymity.  Those who know her will know that this is about her.  And her amazing fight.  And ongoing strength in the midst of hellish situations.

I was SO glad to finally see Kathy last Christmas, at the family Swedish Christmas Eve party.  I’d seen photos of her, looking quite well for someone going through so much.  But I had to SEE her for myself.  We took a bunch of photos (most of which have people looking off in various directions at a LOT of different cameras 😀  I’m so glad we all have those photos… ).    We talked.  And she was hurting.  It was  new pain, which worried me.   When she got home, she had it checked out, and that pretty much started the beginning of the end, as I saw it.

In early January, I noticed she wasn’t replying to e-mails, which was not like her at all (I have hundreds of e-mails between us during her cancer battle), or writing much on CaringBridge herself.  She called a few times, telling me what was going on, and what else she had to have done TO her.  And then, she was told there was nothing left to do.  I was in contact with her mom and brother during this time as well.  I knew things weren’t good before she was ready to tell me herself.  I never wanted her to think I’d given up, or to bring something up that she wasn’t ready to talk about .  She never wanted to know that living and surviving weren’t an option… but at some point, it has to be acknowledged and dealt with.  It’s not something that is ‘wanted’ information… but it is necessary for the best possible care to  be made available.  I’m thankful that she had someone looking out for those painfully hard things.  She had to deal with it in her own time.

That started the last of our phone calls.  During the earlier ones after treatment stopped, she said she didn’t feel like she was dying.    She wanted to find some alternative options, and why not?  She was still in ‘fight mode’.  She told me that if she just wasn’t so tired, she thought she could do some work from home like she’d planned.  In the next few weeks, she sounded more and more tired. And then we had  the heartbreaking phone call when she asked me what she had done wrong that she wasn’t going to be able to live.  I told her that she had gotten a really mean, cruel cancer, and nothing she had or hadn’t done caused it. Then, in an almost childlike tone  the last time we spoke, she very gently asked me why I’d been able to survive the cancer I had (a very lethal form of leukemia unless treatment is started very quickly; it has a 30-day survival rate if no treatment is done).  There was no bitterness in her voice, but what sounded like a painfully desperate attempt to understand the incomprehensible. She knew she could ask me anything.   I told her I’d just been very lucky, and agreed when she said she felt like she’d been dealt a really harsh hand.  And we both said “I love you.”.

Shortly after that phone call, I talked to her mom and found out that hospice was  in the picture.   Her brother and sister-in-law called me the night she slipped away.  I knew from the caller ID who it was, and what they were going to say.  I think I just bawled and sounded like an idiot. I knew it was coming, and it still hurt like hell.  I can’t imagine what this has been like for those who have been right there since the day she was born, or spent the better part of the last decades knowing her.

It’s been three weeks today, and it’s still hard to believe she’s gone, and on the other hand, it feels like she has been gone for so long, maybe because life as she  knew it stopped last summer.   I feel so privileged to have had Kathy in my life, and as family !  I’m humbled by her courage and strength during some indescribably difficult situations.  She personified so much good.   She always looked for the things to smile at, and had a laugh that I can still hear when I remember good times.  When I found individually packaged slices of Spam on Amazon, I had to pause and remember that I had nobody to send it to… that she wouldn’t be able to laugh at that.

I know I’m not alone when I say that my life was better having known Kathy.

Crazy Few Months…

I’m tired.  The last few months have been fairly miserable.  I’ve been on Nutrisystem since the latter part of May of this year.  That was all going well with more than 30 pounds lost and kept off even through the crazy stuff.  Then, sometime in late July (I think) I started having daily headaches with nausea. So it was hard to keep up with the eating like I should.  I gained back a few pounds (nothing disastrous), and just tried to get through the days.  Of course, with a history of cancer, horrible things come to mind when anything is different, so I felt I needed to get things checked out… one doc at a time. I had up-coming appointments (regular follow-up stuff) with most of my docs- so other than rescheduling one of them, I was already going to be seen.  It took me a while to get the energy to even get to the doctors’ offices, and timing the appointments in the afternoon, so if I woke up with the headaches and nausea I had some time to take something and get it better ‘enough’ to get to their offices.

The oncologist saw the muscle wasting in my thighs, and felt it was more of a ‘job’ for my neurologist.  He sent off another vial of blood for the genetic testing that detects changes in my DNA that would be consistent with a relapse of acute promyelocytic leukemia.  I haven’t gotten any calls saying it turned out badly, so that’s good.  He reminded me that chemo is hard on the peripheral nervous system, and since I already have dysautonomia, it could hit it harder. But, he still wasn’t the best  specialist to handle that.  I appreciate a doctor who knows when to turf someone to someone else 🙂

So, in the meantime, I had to see my endocrinologist.  Since being on Nutrisystem, my cholesterol is now normal, my AIC is %5.5 (from %5.8- I’ve had pretty good numbers since I was diagnosed in 1995- %10.2 then; the worst it got on chemo was %6.8- which is not acceptable to me, even though some diabetic references aim for under %7). My kidneys look good, and while my triglycerides are still high, they’re down by 100 !   That appointment went well.  A couple of weeks later, I found out that I was in the Medicare Part D (prescription coverage) ‘donut hole’ where there is no coverage until out of pocket reaches another dollar number.  I have a part D plan that covers many generics in the donut hole, but insulin is considered a ‘biological’ medication, so the patent never wears out, and there is no generic.  Walmart has partnered up with a big insulin company and offers the ‘older’ types of insulin for $25 per vial… that’s down from over $200 per vial for Lantus (and even NPH if not from Walmart and their ‘deal’).  Today, I’m switching over to NPH- so I’m watching my blood sugar more closely.  I had steroid injections yesterday (more on that later), so my blood sugar has been predictably higher. I’m a little nervous about the switching since NPH has an onset, peak, and duration that are much different than Lantus (which essentially stays at a steady level).  There’s more risk of hypoglycemia- so I have to eat (not great with nausea).  Anyway, I’m thankful for the Walmart insulin… I can’t afford the $300/month co-pay (the insulin companies offer a break in the donut hole- but it’s still more than I can afford).  Medicare is expensive !!

On to the neurologist.  She asked me a bunch of questions, saw my thighs (I wore shorts- partly because of the heat intolerance and mostly because I wanted her to see the difference).  She decided I needed an EMG test (electromyelogram).  It’s a test that sounds horrible, but wasn’t any big deal.  First she put prong thingies over various nerves  and zapped a little electricity in them to see what reaction showed up on the screen (and how my foot/leg twitched !!).  Then she put  thin needles in my muscles and applied pressure, then none, to see what that reaction was on the screen. It wasn’t a bad test at all.  Neuropathy is the diagnosis.  No big surprise there. She thinks it’s from the diabetes (and chemo making the neuropathy I already had worse), and that even with good numbers for YEARS in the diabetes department, it’s still possible to have damage.  Bummer.  I thought that’s why I was being careful with my blood sugars. 😦   She also ordered some lab work which got drawn yesterday, and I’ll return to see her in a couple of weeks to go over that.  I know I don’t have syphilis (ha !! 😀 ), and my thyroid has always tested OK.  I’m not sure about my sed rate (inflammation marker), B-12, or serum protein electrophoresis numbers.  She’s just being thorough… OK.  On to the next one.

I saw my pain guy yesterday after a horrible weekend of left shoulder and trapezius muscle pain (trap is between the shoulder and neck).  It was almost ER-worthy, but going to the ER when you have chronic pain AND a pain management doctor is never a good thing. You automatically get categorized as a ‘drug seeker’ and your credibility as a human being in general hits the toilet and swirls there.  So I stuck it out, taking the over the counter and prescription stuff I’ve got, as well as using Salonpas patches (like BenGay or Theragesic on tape), Absorbine Jr, and trying to stretch sore muscles out. Because of the dysautonomia, I can’t use heat packs. As it was, the pain was causing a lot of autonomic symptoms (severe flushing mostly on my left cheek, major heat issues- the outdoor temp was in the 40s (F) and I had the air conditioner on- and general ‘yuck’ feeling).  SO I punted.  It’s the pits to know if I went for help I’d be ridiculed and discounted.  It’s sad to not be able to get help because there are people who do nothing but beg for medications for their addiction, not for legitimate pain.  It’s hard to be lumped into the same category as those folks, when those judging don’t know me.

When I called on Monday to get the appointment, I was told the earliest was next week… I asked to be put on the cancellation list, and what do you know… I got a call 10 minutes later saying I could get in yesterday (Tuesday).  One o’clock p.m.   I’d be there come hell or high water (we had snow forecast, but that wasn’t a problem- and never materialized).

I got to the appointment a bit early to fill out the little person diagram showing where I was hurting and telling how much the pain had been helped since the last time I’d been there.  The last time, I got injections in my left jaw (TMJ- which could have been ‘helping’ the left neck and shoulder pain) and lower back epidural.  They helped.  The neck injections have never helped me, but those two did.  I wanted that again !

I also told him that the ‘as needed’ Norco 10/325 wasn’t doing anything (never really had), the Ultram was only marginally helpful (better than nothing), and I was ready to cry uncle and go back on the methadone.  I’ve been terrified of that stuff ever since watching people detox from it when I worked drug and alcohol rehab.  It is hands down THE worst med to detox from (this is from an objective view- I’m sure people coming off of other stuff thought theirs was bad enough !). But, it’s also a very ‘legit’ pain med, and has the perk of not having much of the ‘high’ feeling sought after by addicts.  Even though I’ve never had a drug abuse problem, I’m uber-careful with narcotics.  He ordered the methadone to be taken regularly instead of ‘as needed’ to get the maximum benefit- and it’s a relatively low dose, so I’m not as spazzed out as I was a few months ago, even thinking about methadone.  I need some relief.  It’s time to suck it up and use the bigger guns.  The other option was the fentanyl patch- which is probably in my future (I’ve been on them before).  There’s room to fiddle with the methadone dose (when instructed to) to get the best results, so I’m OK with taking it- and I know I’ve gotten ‘off’ of it before with no horrible symptoms, by tapering it.  I have to have some time when the pain isn’t there ALL the time, regardless of activity (or lack of activity) level.

I also got some low dose sumatriptan (active ingredient in Imitrex) to use with Aleve (naproxen sodium) and ‘make’ a sort of version of Treximet- which isn’t covered on the prescription thingie… I’d had samples of the Treximet before for the headaches, and it did have a noticeable impact on the pain, though it made me tired- when it gets to the point of needing meds, tired isn’t a bad trade-off.  I can still use the Ultram for breakthrough pain.

Then on to the injections, done by flouroscopy, or ‘moving’ x-ray.  The jaw injection does hurt enough to call it pain (and leaves a bump for a few hours until the meds are absorbed), but it has a lasting benefit, so it’s worth it to me.  The one in my lower spine doesn’t really hurt going in- there’s  a bit of a sting with the local anesthetic, but then it’s just a bit of pressure.  The steroids do have an impact on blood sugar (not the greatest timing when switching to a new insulin, but I had to get some relief).  I was glad to have them done.  The lumbar epidural will also help with the physical therapy exercises (more on that … NOW !).

That gave me just enough time to get to the physical therapy appointment (I was at the pain guy’s place for 2 1/2 hours ! ).  Now I’m rarely away from home for more than the time it takes to grocery shop.  I had the ice vest on (since the weather is cooling off, people turn on their heaters- so no break with the seasons), which helped, but it was starting to have a more ‘neutral’ feel to it.  The physical therapist was very pleasant and showed me exercises to do at HOME !   I told her that I’m horrible with appointments because of the headaches, nausea, and pain.  I can do stuff at home.  I also told her about the dysautonomia, and how heat, pain, and heart rate elevations can lead to me passing out cold.  Neither of us want that.  So, she showed me the exercises and gave me written instructions and a band thingie to tie around my knees for one of the exercises.   She also told me how to rig similar straps and things to squeeze between my knees, but I got home and ordered the same stuff she used from Amazon.  They weren’t that expensive, and I can see having to use them for a while…

I had to go to the pharmacy to get the prescriptions filled (one is not something that can be called or faxed).  While that was going on, I got some apples and Pecorino Romano cheese, and a couple of other things. I got home 4+ hours after leaving home.  I was exhausted.  But, glad to have it all ‘done’.

Today, I’m back to eating the Nutrisystem food  as it’s supposed to be eaten.  During the months of nausea, I was eating NS food when I could, but mostly not eating enough.  I had more carbs than I had been since they are often bland enough to tolerate.  My stomach has been ‘enough’ better to go back to meals.  I also got my nausea meds changed, and that has helped.  The stuff I’ve used for years just isn’t cutting it any longer.

So, that’s the last few months in a nutshell.  It helps that I’ve been an RN for 28 years. Keeping myself running, even on disability, is a job in itself.

Shelby (puppy) is doing well, and I was contacted this week by a dog treat company about using her photos in a video of still photos of various ‘fans’ of their product, so I’m excited about that!

Just a happy puppy kind of day !   Shelby- 4 months.

Just a happy puppy kind of day ! Shelby- 4 months.

 

Shelby !  Future 'movie' star :D

Shelby ! Future ‘movie’ star 😀

Growing up !

Growing up !