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.

More Family Illness, and It’s Complicated

In the past year, we’ve lost a cousin in my age range and her mother, and last week my dad’s lady friend from his Sunday School class.  Actually, two were in the last few weeks (the visitations and funeral for two of them are this coming weekend).  Now, an uncle has been diagnosed with advanced cancer, and while things are still uncertain about his treatment recommendations and prognosis, it doesn’t sound all that great.  I still hope that there is something that the docs can offer him.

The first three people I described were wonderful, kind, beloved, compassionate parts of the family- whether actual family or ‘just’ a close friend.   The latter is not seen as a kind, compassionate person.  Yet I feel horrible that he is having to face all of this.  His wife died from cancer a few years ago (she was very much loved).  My cousins and their families are also having to deal with this.  I’ve only found out what a jerk he can be in the last 8 years or so.  I didn’t have to grow up with him.  I did have his older sister as a mother, and while she wasn’t known for being nasty, she wasn’t the same as a mom as how her students described her as a teacher (she taught for many years).  She was cold and distant at home.  As a kid, that’s all I understood.  I didn’t understand why I couldn’t have the warm, caring teacher as my mom.

I had to get to a place where I could try and see some reason for why my mom was the way she was.  I knew she loved me; that was never in question.  I didn’t, however, know if she liked me.  I knew that feeling from the time I was two years old. She wasn’t always nice to me.  I felt like I was in the way.  But as I got older, I got so tired of being resentful, that  I had to try and see her from an adult perspective, not a hurt kid, and make some attempt to understand her.  And when I did, I found out how broken she was. She had had two newborns who died within the first two weeks of life (two different pregnancies) just three years before adopting me.  She was terrified of losing me.  The attachment issues were from a place of pain, not because of anything to do with me. It would have been any kid…   Figuring that out released me from so much pain and resentment.  Her brokenness hurt me, but it had nothing to do with me.  That wasn’t the only issue, but it made sense regarding how she parented.  She wasn’t intentionally cold and distant… she was scared.  And she did ‘do’ a lot of things for me… I just never felt much of an emotional connection.   It’s really hard to explain.  She wasn’t a bad person by any means… she just didn’t know how to deal with her pain, and bond with a  new baby at the same time, with no frame of reference about how it’s ‘supposed to be done’…  nobody talked about feelings back then.

My mom’s and uncle’s  mother had been orphaned by the age of six- first her mother when she was less than four years old, and a couple of years later, her father died.  She had attachment issues (that she has discussed with me several times) because of that trauma (she was packed off to a new country with only one of her three brothers).  She told me she didn’t like to get close to people, though she always came across as ‘connected’ with my cousins and me, from what I can remember- but then I wasn’t raised by her either.  She was also ‘broken’.  And doing the best she could.  She couldn’t pass along what she didn’t have.

They do the best they can with what they have to work with, and sometimes that isn’t enough.  It just isn’t enough sometimes – but it’s all they have.

If I had any contact with my uncle, I’d want to  let him know how sorry I am that he’s going through all of this.  That wouldn’t excuse him from any of the emotional pain he’s caused, or the horrible things he’s said to/about me.  But if I stay bitter, that just hurts me.  I forgave him ages ago (that’s between me and God, not the uncle), but we have no basis for a continued relationship.  He hasn’t been a part of my life since he called me “human debris”, and said he was “ashamed to be my uncle” (fine, buddy, it’s done- you’re off the hook) after fabricating a nasty story about me that didn’t happen.  He’s a horrible bully, and is known for that character defect.  But he’s also facing some really rough stuff right now, and while I don’t want him in my life, I also don’t want to ignore the emotional torment he’s in right now.  I owe him nothing, but I owe it to myself to not be unkind in return.  I won’t like myself much if I respond that way- and I might not have a lot of time to let him know that I do care that he’s going through so much.

It’s  confusing in my head .   I don’t like this family member, and yet I can’t imagine how scared he is (and he’s still family).  He’s run off a lot of people, and it’s got to feel pretty lonely- especially compared to the way I’ve seen the other three who have been lost this year be surrounded by friends, family, co-workers, and loved ones to the point where  limits were placed on visiting/calls at times.  I don’t wish facing the end of life essentially alone (or at least not liked much) on anyone.   Yeah, people make their choices about how they treat people, and there are consequences with that.  Their ‘targets’  can only take so much crap before they have to cut ties to have their own lives not be toxic.

But I have to make my choices about how I respond, especially with something so serious.  I don’t want to have regrets in five years about how I responded.  I’ve given a message to a cousin who will relay it to him, offering my sadness at what he’s going through, and genuinely praying that whatever results from this, he doesn’t suffer (not my exact words, but the message is there).  If I could box his ears, I’d beg him to make some attempt to let his kids, and anyone else he’s hurt over the years, know whatever it is that he needs to take accountability for, and whatever amends he’s capable of.  It might not be what anybody needs, but it might be all he is able to offer.  Sometimes, that has to be enough… someone who is broken can’t give more than they have.  It hurts, but it’s not personal.

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.

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.

Everyday Poisons… To Which EVERYONE Is Exposed

This month marks 4 years since I started the journey to surviving leukemia (acute promyelocytic leukemia – always fatal without treatment).  Since then, I’ve become much more interested in doing things to minimize risk of relapse, as well as other types of cancers. I’m not perfect at it, but I’m making progress 🙂   I’ve been surprised at the things that put all of us at risk, and even more surprised at the lack of concern by the Food and Drug Administration (FDA) about the safety of personal care products, cosmetics, and household cleaning items.  In the European Union, there are over 1,300 banned chemicals from such items.  In the USA, there are ten.  That’s it.  So, we’re left on our own to figure out what is safe and what isn’t. Skin is the largest organ of the body.  That’s right- skin is an organ.  It absorbs things.  The ingredients in whatever we touch end up in our bloodstreams, and then moves into  other organs.   I’ve known that skin is the largest organ since nursing school days in the early 1980s, but I just never thought about what all it’s exposed to until I learned about a company that focuses on just that…

I’ve recently been introduced to Ava Anderson Non Toxic products.  They are toxin-free, vegan, cruelty-free, and often organic products.  AANT has cosmetics, skin care, personal care (deodorant, shampoo, conditioner, lotion, etc), baby skin care, and household cleaning products (laundry, dishwasher detergent).  They even have essential oil combinations for toxin and alcohol free fragrances and candles.  The company was started by a teenager who was horrified to find out what was considered acceptable in her cosmetics and skin care products.

The following is from the AANT brochure ‘Did You Know?’  (I had trouble matching the font size… it goes to the other line of asterisks):

*****Read your labels and avoid the following chemicals: 


FRAGRANCE is a “trade secret” in the industry and
manufacturers can legally include hundreds of chemicals
in this one ingredient. More than 75% of the time if you have
fragrance, you have legally hidden phthalates (THAL ates),
known endocrine disruptors, that are linked with birth
defects, breast cancer, infertility, liver, cancer, diabetes,
obesity, and now with autism and ADHD in pregnancy
by Dr. Philip Landrigan, Mt Sinai, Children’s Environmental
Health Center. 

PARABENS: are preservatives linked to breast cancer,
endocrine disruption, reproductive toxicity, and
developmental defects. California Study (10/11) of BPA
and methyplaraben combination turned healthy cells into
cancer cells, and rendered tamoxifin ineffective.

TRICLOSAN: is the active ingredient in “anti-bacterial”
products, is registered with the government as a pesticide,
and is a known endocrine disruptor. Triclosan is believed
to disrupt thyroid function and contribute to liver and
inhalation toxicity.

OXYBENZONE and OCTINOXATE: (and other chemical
sunscreen “active ingredients”) are UV ray filters that are
known endocrine disruptors.

PETROLATUM & PETROLEUM INGREDIENTS: endocrine
disruptors and carcinogens.

IMPORTANT NOTE: ALL SIX OF THE ABOVE ARE “ENDOCRINE 
DISRUPTORS” which are important to avoid, because the endocrine 
system regulates ALL biological processes in the body: development 
of the brain and nervous system, growth and function of the 
reproduction system, metabolism and blood sugar levels, ovaries, 
testes, pituitary, thyroid and the adrenal glands. (Natural News) 

The World Health Organization and the UN recently released 
a report that called endocrine disruptors a “Global Threat.” Small 
amounts matter, especially to the developing fetus. 

PEG’s (polyethylene glycol) are petroleum byproducts. 
During manufacturing process carcinogenic 
contamination is created: 1,4-dioxane, which is a known 
human carcinogen, with liver and kidney effects. 

SODIUM LAURYL SULFATE (SLS) and SODIUM LAURETH SULFATE 
(SLES) are considered carcinogens. SLES is sometimes 
contaminated with 1,4-dioxane. You will never see 
1,4-dioxane on a label, as companies are not required 
to list carcinogenic contaminants. 

INGREDIENTS THAT END IN “-eth”: like ceteareth, 
triceteareth, etc., carry the contamination concern 
for 1,4-dioxane. 

IMPORTANT NOTE: all THREE of the above ingredients carry 
carcinogenic contaminant concerns created during manufacturing 
for 1,4-dioxane. The government allows 10 ppm (parts per million) in 
any one product, but no one is testing. 1,4-dioxane can be stripped 
for pennies, and must be done for any product exported to EU. 

RETINYL PALMITATE: in the presence of sunlight enhances 
skin cancer lesions by 21% (FDA, 2011 Report). It is in 
many sunscreens and moisturizers. 

NANOPARTICLES: can cross the cell barrier and drive into 
organs, including the brain in humans. There is no way 
of knowing particle size, unless stated on the label. EU 
manufacturers must list nanoparticles. 

ALUMINUM and metals: these are bio-accumulative, 
meaning they store in your fat cells and accumulate, 
and are very hard to get rid of. 

DIETHANOLOMINE (DEA) and COCAMIDE DEA, LAURAMIDE 
DEA: DEA reacts with other ingredients to become the 
extremely carcinogenic nitrosodiethanolamine. Beware 
of other ethanolamines like triethanolamine (TEA) and 
monoethamolamine (MEA). 

FORMALDEHYDE RELEASERS– DIAZOLIDINYL UREA, DMDM 
HYDANTOIN, QUATERNIUM: found in most personal care 
products. Formaldehyde can cause allergic reactions, 
dermatitis, joint pains and headaches, cancer and 
immune dysfunction. 

SYNTHETIC COLOR/DYES: made from coal tar, which is 
a mixture of many chemicals, derived from petroleum. 
These colors may be contaminated with low levels of 
heavy metals and some are combined with aluminum 
substrate. Aluminum compounds and many heavy 
metals are toxic to the brain. 

GLYCOL (propylene, butylenes, etc): is a synthetic 
petrochemical mix known to cause allergic and 
toxic reactions. Has been linked to cancer, developmental/
reproductive issues, neurotoxicity and 
endocrine disruption. 

MINERAL OIL: a petroleum ingredient that coats the 
skin like plastic wrap, disrupting the natural immune 
barrier, inhibiting its ability to breathe and absorb 
natural moisture and nutrition, and its ability to release 
toxins, which can promote acne and other disorders. 
The process slows down skin function and normal cell 
development causing premature aging. 

TALC: is in the same family as asbestos. Talc is dangerous to inhale and has been linked to ovarian cancer. 

SILOXANES: cyclomethicone and ingredients ending 
in “siloxane” (e.g., cyclopentasiloxane) are toxic, 
persistent, and have the potential to bioaccumulate. 
The EU classifies some as endocrine disruptors and 
possible reproductive toxicant that may impair fertility. 
Research shows some to cause uterine tumors and harm 
to the reproductive and immune systems. Some siloxanes 
can also influence neurotransmitters in the nervous 
system. Cyclomethicone is a mixture of three siloxanes.

*******

Now, that’s a mouthful, eh? The FDA doesn’t care that these ingredients are in our everyday products, or that we subject ourselves to toxins repeatedly. They don’t require labeling that such toxins are in the various personal care, cosmetic, and household products we use, thinking they are safe.

They don’t care that the BABY CARE products in this country contain many, many of the toxins in the above list.  They don’t care that newborns in this country have, on average, more than 275 synthetic chemicals in their cord blood at birth.  Do a search for ‘toxins in newborn cord blood’ and be ready to be appalled.  The ‘tearless, gentle’ shampoo contains many toxins.

One of the worst offenders is air freshener, which I’m guilty of using like it’s oxygen (hey, I have a paper-trained dog, and some intestinal issues… ).  Any product with ‘fragrance’ listed in the ingredients could have all sorts of toxins that are protected by trademark concoctions of smell-good stuff.  Organic essential oils and candles made with essential oils and organic beeswax, coconut oil, and lead-free wicks are better options.

Mascara is packed with poisons, legally. I’m glad I don’t wear make-up.  One less thing to figure out.   Lip balms often contain alcohols- which dries out lips !   What a great way to make sure you keep lubing up your lips !!  Shampoos are full of sulfates.  I stopped using those ages ago, as my scalp peels off in sheets from that stuff.  Antibacterial hand soap actually helps increase the problems of ‘antibiotic resistant’ bacteria.  It’s main ingredient  (usually triclosan) is actually registered as a pesticide…among other problems.  Other products contain ‘nano-particles’. I’m still figuring out what those go in- but I know if I get the Ava Anderson Non Toxic products, I don’t have to worry about it.  They’ve done all of the figuring out of stuff.  BUT, there are other companies that say ‘natural’, ‘organic’, and ‘pure’, which mean absolutely nothing unless you read the label.  There are NO regulations about putting those words on a label.  OR, something could have one organic item in it, but be swimming in other ingredients that are toxic waste.  Not OK.    There are some other good brands of toxin-free cosmetics, personal care items, and cleaners… but know what to look for on the ingredient label 😉

Be aware that Burt’s Bees sold out to a major corporation recently, as did Tom’s of Maine (my OLD favorite toothpaste).  I checked out my old  Tom’s of Maine toothpaste box, and it now contains bad stuff (I don’t have a box from when I first started using the stuff- to be fair, maybe it’s always had something on the ‘avoid list’).  I’ve switched to Spry Xylitol toothpaste.  I also tried Earth Paste (great ingredients)… it looks like grout, but tastes OK, and has absolutely NO foam.  It was kind of weird… but it’s an option.  Check the ingredients 🙂

An option to talc is organic cornstarch (I avoid the regular cornstarch when I can, as it comes from GMO corn).  You can mix it with essential oils in one of those little blender thingies.  If you like the ‘cool’ feel of talc like Gold Bond medicated powder, some tea tree oil (organic if possible) will give you the same sensation, and tea tree oil is a  known antibacterial/antifungal.  Besides being linked to ovarian cancer, talc is bad for  the lungs if inhaled while applying it (so hold your breath the entire time… ).  It’s VERY bad for babies’ lungs.  I like using a 4×4 piece of woven cotton gauze as a powder ‘puff’.  It helps keep the cornstarch less airborne.  But talc should be avoided.  ‘Powders’ can be made from many things.

Whatever you do, be informed. Make decisions based on knowledge.  Don’t assume the FDA has approved or tested anything in the products you use on your body, or in your home.  Don’t assume that the companies that make these toxic products care about your health.  They want your money. Until there is a mass class-action lawsuit naming the products that have these toxins in them, nothing will change- so we all have to be our own detectives and decide what is worth the risk.  Some of these products can cost a bit more than the commonly found grocery store versions- but I can guarantee you, chemotherapy costs a lot more, both financially and physically, but also emotionally.  I figured up what my costs will be to change over to Ava Anderson Non Toxic products (for the items I normally use).  It will be less than $30/month.  I can do that !

Just So Lousy… Death Is An Ugly Business

I’ve been looking back on the last year and a half, and it has become mind-boggling how many of my friends (or their close family members), family, former co-workers, and people who were part of my everyday life are now dead.  I don’t really even know where to start.

Most people know that my cousin died on March 2, 2014, so almost two weeks (tomorrow).  She had a  horrendous fight with neuroendocrine colon cancer, with every complication known to nurse-kind.  I was her ‘go to’ person (as she described me) for bouncing around ideas of what might be going on, and getting my take on what the symptoms she was having could mean.  Being eighty miles away didn’t help, but I did what I could, and my standard line was “you probably need to go to the ER” or “It would be a good idea to call your doctor now and let him/her know what’s going on.”  I was glad to be of some use- and it was also hard to know she was going through so much.

During the last twelve to eighteen months, I’ve looked up former coworkers to see if we could reconnect, and ended up finding their obituaries.   I’ve also been informed about friends’ family members- and in the case of two particular children, it was really so incredibly sad.  One died at age eleven from the same leukemia I had- less than a day after being diagnosed. Another child (8 years old) in that same extended family died from brain cancer, less than a year after she was diagnosed.  She had the best treatment there is (St. Jude’s), and she still lost the fight.  Even though their names are available on public ‘search’ links, I won’t post their names because they were minors- and I don’t have the family’s permission to name them.  I remember some kids who died when I was a kid (friend’s brother had a brain hemorrhage, kid at school had a brain tumor, skating coach’s six kids were murdered by her husband)… but as an adult, with the experience of  pediatric nursing-  hearing the screams of the parents when an infant or child died back in the Pediatric Intensive Care Unit isn’t something I’ll ever forget.  It was the most guttural, primal PAINFUL sound I think I’ve ever heard.

I am going to name a few of  the people I’ve lost in the past few years, as I have nothing but good to say about them- and they too are easily found when looking their names up.  I hadn’t expected to find their obituaries, but ….

Madeline Spenrath, R.N. was one of my nursing supervisors in Kerrville, TX.  She was one of the best supervisors I ever had anywhere.  She maintained a bit of a strict ‘ship’…but she had a heart of gold.   I reconnected with  her after her breast cancer was found, and after she’d had to have her right hip removed from the socket (along with the whole leg), as the cancer had spread.  It continued to spread, and she eventually died at one of the nursing homes I used to work at (it helped to know she was getting good care).   Madeline was ‘good people’.   She was down to earth, very knowledgable, and could get an IV into a mosquito in motion.  She had amazing BBQs for the night shift crowd every year for a long time- those were great.  She had someone tend the pit, and everyone brought a dish to pass.  She was all about team work, and it was obvious she was an amazing team leader- and player. She wasn’t above getting her hands dirty.

I had started looking for the mom and godfather of a baby I took care of for most of the first 18 months of his life when his mom worked.  I worked 2-12 hour night shifts on the weekends, and his mom worked 3-11 shifts Monday through Friday, so it was perfect.  The first 3-4 months I had him 5 days a week (had the car seat so I could get errands done), then cut back to 3 days a week so I had some time off.  But he was my little angel bug.  He’s about 25 years old now- last time I saw him he was twelve !   Anyway, when I looked up Jae Arkeen and Dana Coy, I found their obituaries.  It stunned me when I later found out that Jae had relapsed into addiction, and had elevated levels of drugs in his system that he wouldn’t have touched when I knew him.  That broke my heart. He had been SO solid in recovery.  It reinforced that ANYONE can relapse and die with drugs and alcohol.  I really don’t think he’d mind me saying that, because he’d know it could possibly reach someone who is rocky in recovery, thinking they’re invincible with their 12-Step Program.  He was the kindest, most caring guy, and thought that his godson hung the moon. He was so funny, and great to work with.  He later worked in a very intense area of counseling, and I’m sure that, along with what seems like some serious instability in his addiction recovery, was very difficult.  I had contact with  someone who had been very close to him (that I didn’t know), via e-mail, and she let me know what happened.  While it was horribly sad, there was some partial comfort in knowing it was fast- at least at the end.  I’m sure there were some painful times emotionally for him to get to that place.  I worked with him on an adolescent psych unit… he was great with those kids before he moved into a much more specialized area that is polarizing, and very difficult. He was outstanding with those kids.

Dana Coy (RN in several psych units over the years) had a very brief obituary.  brief battle with cancer.  She had been divorced from her adopted-at- birth son’s dad for years, though the son kept in contact with him- so after losing two people who were so close, I’m sure it helped to have his dad there with a long history together.  Dana and I didn’t work shifts together… but we saw each other nearly every day when she dropped the baby off (starting at 9 days old since he was adopted, so not much time off for ‘maternity’ leave), and when she’d pick him up, or I’d take him to work to do a ‘hand off’ if I was working an 11-7 during the week.  I liked Dana.  She was very easy to interact with when I took care of her son… not high strung about things, and also appreciative of having an R.N. for a regular babysitter.   I loved the baby as if he were my own.  She knew that- and also knew that I knew my boundaries as ‘the babysitter’… I always asked her before doing anything with him.  Whether it was a trip to the store, or just going to the apartment complex swimming pool, I made sure she was OK with it.

Another shock was finding out that Tricia Heath, the administrator (and an RN) at a really nice nursing home I worked at in Round Rock, TX back in the early ’90s had died. She was so supportive when I was dealing  some personal things, and was just a kind, compassionate person, who wanted the residents in that facility to have the best possible life they could in an institution.   I really cared about her, and when she and her family moved to Memphis, TN for a job her husband was offered, it was so sad to see her go.  As often happens, people say they’ll keep in touch once they get settled, and then life happens, and they’re in the wind.  Back then, there were no internet search engines for finding people, and it was all basically just luck if phone numbers were in the 411 for a particular city.  Tricia was a great administrator- she kept the place in line for state requirements, but she also had a heart.  I had a lot of respect for her.

Madeline, Jae, Dana, Tricia, and Kathy were parts of my life for a long time. Madeline, Jae, Dana, and Tricia were people I saw every day I worked, depending on the schedule I was on. I wonder how all of their families are doing.  When Facebook and other internet ‘reconnection’ things were available, it was like we’d never been away from each other. I got to catch up with Madeline the most… Jae, only once with a postcard from somewhere, and Dana only briefly when her son was twelve, and I was in Austin for a week for my work; they came up to the hotel to see me one evening when there weren’t any seminars scheduled. But it was great to see her, and how much M had grown !      Tricia was harder to track down since she’d moved back to TX.   I could have paid to find out where she was, but there was information on that thing that was really too invasive for just trying to send a ‘hi, how are ya?” kind of note.  And then they were gone.

I stopped looking for people.  I sort of don’t want to know who else is gone. If more people pop up via Facebook, or whatever, that’s great.  But I think I’m done looking.   It hurts.

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.

The Lull in Posts Over the Past Year

It’s certainly not for lack of material.  Or being too busy (well, having a new puppy has been interesting over this last 11+ months).  In many ways, it’s because I have too much rattling around in my brain, and trying to figure out what to write about (in a coherent fashion) has been more of a problem.

The last year has been wild.  In January of 2013, I was grieving the loss of my beloved Mandy- the miniature schnauzer I’d had since the summer of 2001.  She was my heart, my life, and my only consistent companion.  I knew the day would come, but it’s never easy.   I was really alone for a couple of months, and it hurt.  As in ‘boohoo’ type crying on and off for weeks.

Mandy Bluebonnet Tumbleweed Mar. 28, 2001- Dec. 27, 2012 This was her last photo… ever.

Mandy Bluebonnet Tumbleweed
Mar. 28, 2001- Dec. 27, 2012
This was her last photo… ever.

Then, I got my new miniature schnauzer puppy at the end of February.  She was a day short of 9 weeks old when I brought her home.  She wouldn’t get near me in her crate on the car seat until about 2 hours into the 2.5 hour drive home from where she was born (longest drive I’ve made in over 10 years, and my left knee still hurts).  Then she scooted to the wire door, and at least was close enough to see… she was so cute !  And the games began !!  She was  a crazy little thing, after being seen as the ‘shy, reserved little girl’ in the litter of three pups, two of which were males.   She got over that in a hurry !!  Just NUTS !!  But not a mean bone in her- she was just active, and always on the go.  It took quite a while for her to listen to my commands- which wasn’t about ‘dominating’ her, but making sure she was safe.  I had to get a shock collar, which broke my heart- but the little zap (about the same as when you rub your socks together on the carpet and touch someone, or something) was enough to catch her attention.  Now, I just have to ask her if she needs her collar. 😮

Shelby in one  of her toy bins :)  About 9 weeks old.

Shelby in one of her toy bins 🙂 About 9 weeks old.

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

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

Growing up !  About 10 months old in this photo…

Growing up ! About 9 months old in this photo…

Now, she is still active, and very much a young dog, but is such a sweetheart, and really understands a lot of what I tell her.  “Stay” needs some work, but otherwise, she knows the difference between the types of her toys, different rooms, and when she is NOT supposed to bark or whine at someone outside – I mean seriously, the mailman doesn’t require daily announcing !

My biological mom visited a couple of times, and it’s always great to see her 🙂   I’ve thought more and more about ‘biological bonds’ and how that never is severed by adoption- if anything it’s more intense.  Having my biological mom in my life has been such an amazing gift.  That’s something for a few blog posts.  My biological paternal uncle also visited- the first time I’ve met someone from my biological dad’s side of the family.  That was great !   I honestly enjoy both of them (as well as others I’ve met through my biological family tree- that is more like a group of trees).  Neat, really nice people.

This summer, my cousin was diagnosed with cancer.  It’s a tough kind of cancer, and she hasn’t  ever been really sick before, which makes all of the procedures, sensations, and inability to just do what she sets her mind out to do that much more difficult.   She has had so many side effects and complications- it’s been so hard for her (as it would be for anybody).  Since I’m the family ‘go-to’ for deciphering medical information, we talked and e-mailed a lot.  We still do.  I’m glad to be of some use to her (and other family members who know I’ve been an RN for nearly 29 years, even if I’m now disabled- which has increased my knowledge about a  lot of the little things with my own personal medical journey- it helps me find some ‘good’ in the bad I’ve been through).  She is SO strong mentally, and has such an amazing support system with friends and co-workers.  I told her how in awe I am, since the people around here (co-workers) dropped me like a hot rock when I had to leave work in 2004.  She is blessed with an employer who still sees what she can do, and co-workers who are really there for her.  It’s amazing how well she’s doing in such a truly lousy situation.

Last (early) summer, I started on a weight-loss plan, and did lose 35 pounds that have stayed off- but I had to stop the Nutrisystem products for the artificial sweeteners.  I had about 3 solid months of migraines… no days off. I might have some time during the day when my head didn’t hurt, but there were no days with no head pain (I’m never free of muscle pain, and that’s been for the last 19 years).  SO, I had to give in and start taking daily pain meds along with some ‘as needed’ migraine meds.  I’ve been avoiding regularly scheduled pain meds for years.  But, my quality of life is going down the tubes.  With the pain meds, I’m now able to do more around the apartment in short spurts, which has been good- though I’m in no way able to do ‘normal’ amounts of housework.

The dysautonomia is also getting considerably worse- so any activity has become incredibly painful and leads to problems with my heat intolerance, blood pressure and heart rate.  The chemo I was on for leukemia from early 2010 through the latter parts of 2011  is known to cause peripheral neuropathy (as are many types of chemo)- so with an already existent neuropathy, it makes sense that it doesn’t do it any favors.  The heat intolerance is much worse, and even though the ice vest helps considerably, I have the air conditioner on when it’s  less than 20 degrees outside because I’m over-heated inside, if I do any sort of activity that causes my internal thermostat to go whacky.  It’s miserable.

My thighs have begun to shrink.  As in visibly smaller, and not in the good way from weight loss, but in an abnormal way.  SO I had to have an EMG (electromyelogram).  That showed more neuropathy.  I was sent to physical therapy (PT) for exercises- which will be an ongoing thing to avoid ending up needing a walker (at best) or wheelchair (at worst) for just getting around my apartment.  That is scary.  Since last spring (or maybe before then- the time gets away from me), a childhood friend of mine has been volunteering to help me get my apartment straightened out and drag stuff off to the thrift store at one of the churches here.  That has been SUCH incredible help.  She will also go to the grocery store if I need something picked up, and we’ve made a sort of contingency plan if I can’t do much at the store  at all, where I ride the scooter and she pushes a cart.  My guess is that we’d spend a fair amount of time laughing with that arrangement, but it’s so nice to know she’s around.   Another junior/senior high school friend has also moved back to this area recently, and has also offered to help out – so I really do feel blessed to have two people (and my dad) who I trust, that are willing to help me out.   There are days when I feel like that’s the only way I’m going to be able to live outside of some type of facility- and having no longterm care insurance, I would have to go to some state run ‘pit’.

Last week, I went to the store for my monthly fresh food/dairy stuff.  I had my ice vest on, and when I got home, I was still in trouble.  I had to drag out my ‘arsenal’ of thigh squeezes, leaning over the counter, etc. to keep from passing out.  I am so thankful for days when nothing is so bad as to need some sort of quick ‘first aid’ maneuvers to stay conscious.  Or headaches that are bad enough to land me in bed.  Or muscle pain that causes me to be essentially immobile.   I’m getting more and more thankful for days that other people would consider to be very boring- but keep me from having to contact one of my doctors.

The first week and a half of January is rough every year because of two very painful anniversaries… the January 7, 1978 murders of my figure skating coach’s six children (by her husband)- and wondering how she has been all of these years. I miss her, even now.   And, the January 10, 1987  six-hour rape I went through by the uncle of a baby I took care of up to six days a week for about 6 months (back when 6 months of my life was a much bigger portion of my overall existence).

I’m not sure anybody ever ‘gets over’ things like either of those.  While I wasn’t physically hurt by the murders, it was one of the most traumatic things I’ve ever been through, and at age 14, I was miserably unprepared for how to ‘get through’ something so horrific. I knew the older girl a bit from the rink- which made it all hit so much closer to home.  She was a year younger than I was… and it was all so impossible to understand.  I was 23 at the time of the rape- and while I managed to keep myself alive, it was also something beyond my level of coping skills emotionally.  There isn’t a year that has gone by, or even a day or week since either of those events that I haven’t thought about the overall impact they have had in my life- and wondering how my skating coach has been.  Every few years, I have to deal with parole protest letters for the guy who raped me.  I’ve written other blogs about both of those.

So, I’ve had plenty to write about.  But sometimes, it’s just too much to try and put thought to writing.  Many things are rattling around in my thick skull… and writing about them does help me.  I feel ‘heard’ – even if the majority of things I write about won’t be seen by people I know- it still helps that ‘someone’ out there will have seen what I have to say.   Thank you for stopping by to ‘hear’ me.

*Ann, if you are out there… please comment.  I see a lot of people who look up information about that day.  If you are one of them – or know how she is… please let me know 🙂

 

 

What NOT To Say To Someone Who Is Disabled or Dealing With a Serious Illness

I think most people are trying to be helpful or supportive when they make comments to someone about their health and/or treatments, but there are some things that  those who have not experienced the situation should just stay quiet about.  Some things are just not helpful, and some are ‘enough’ to ruin a relationship.  These are some of my ‘just don’t say it’ things:

1.  “You look OK.”… to me, that means “there must not be anything wrong with her- she’s just a wimp and making a big deal out of nothing”.  You spend a day in my body, and get back to me.  Diabetes, seizures, neuropathy, chronic pain, migraines, degenerative joint and disc disease, and a multitude of other disorders have no outward symptoms that scream out their identity.  There is a fine line between “You look OK.” and “You look good”.  When “You look good” is said following a long fight with an illness or its treatments, and someone is ‘coming back’ to their ‘usual’ self, I never found that offensive.  It’s a totally different situation.  But “You look OK” = “buck up and get with the program, you sloth.”   Trust me.  I’ve tried the best I can, and managed to get 8 years more to work with the initial medications (once the right ones were figured out). Going on disability was NOT my idea.  My employer at the time told me they couldn’t have me around (go figure, I was passing out all the time).

2. “Your doctors sound like idiots.” (opinion usually based on the online ‘research’ that is mostly from sites that are trying to sell a product– and have an 800 number at the bottom of the page, and/or ‘proven’ by someone with a plumbing or agriculture background).   Many times, this is ‘pushing’ some sort of Eastern or alternative medicine instead of the treatments that have been researched and gone through trials, with proven success rates that are better than not having that particular medication or treatment for that specific problem.  I have no issue with alternative medications, and use homeopathic headache medication as well as herbs and supplements for headache prevention/ minimization … but I have run those past my doctors before taking them. I also use Western medications for the same problem.  While I was on chemo, I took NOTHING that my oncologist didn’t approve.  There were very specific things I couldn’t have because of the type of chemo I was on.  There was  a massage/aromatherapy person who came by every day I was in the hospital, so some alternative things were offered.  I’ve been offered various products/ideas to replace medications by well-meaning friends.  Here’s the thing- it’s my body.  I trust who I trust, and it’s not someone online I’ve never met.  It’s not someone who has never seen me or my test results.  It’s not someone who has no interest in me if I don’t buy their products. When I have decided to switch doctors, it was MY decision based on how I felt about the care I was getting.  And, I never trust anybody who has credit card acceptance comments and images at the bottom of their ‘professional’ page.

I must admit, I have been annoyed by doctors I’ve heard about and gone off the rails with my responses- but once discussing the situation with the person- and I more fully understood what was going on, all was well- and bottom line, I respected their gut feeling about what was going on.  🙂 But, nobody needs to hear that their doctors are idiots… they’re depending on those doctors to be sure they’re still going to have a normal lifespan.

3.  “You should/shouldn’t eat X, Y, or Z.”  During chemo, it could have been lethal to eat fresh fruits and vegetables that someone else didn’t peel, because of the microbes that can still be on them even after washing. Because of the immune system ‘attacks’ from chemo (and in the case of the leukemia I had, the cancer itself long before the chemo kicked in), there are times when an otherwise harmless ‘bug’ could cause a fatal infection. Produce is covered in ‘normal’ bacteria, fungi, spores, and viruses- a normal immune system handles them with no problem (they can’t all be washed off).   And when my absolute neutrophil count (ANC) was below a specific number, I couldn’t have any fresh unpeeled produce around (and wasn’t given permission to peel them myself even with a mask and gloves– the risk was just too great).  I’d already had a couple of nasty infections from otherwise puny things that caused delays in chemo and/or the need for extremely potent IV antibiotics for 5 straight weeks, or antivirals for 3 weeks (BAD ear/neck infection,  and shingles during the first year).  Normally, fresh produce is felt to help prevent certain cancers… but with chemo and the effects on the immune system, it is critical to not violate the food rules !  It’s all temporary.  Better to go with what is likely not to cause more problems !  When it’s not potentially lethal, then of course- fresh foods are the way to go 🙂  There was also a very strict ‘don’t eat’ on things with a lot of Vitamin A, since one of my primary chemo medications (ATRA) was essentially a form of Vitamin A in mega form.  Vitamin A is fat soluble, and can become toxic in the body since it builds up (so can E, D, and K).   I had very specific instructions about not eating Vitamin A ‘heavy’ foods (carrots were a particular ‘loss’).

4. “Oh, disability must be just like an early retirement!”  Seriously?  People think this is some sort of ‘perk’ ?  My life was taken from me in terms of everything I knew to be my normal life.  I still grieve the loss of being a  working RN.  I’m having to make 2/3 of my income ‘work’.  I can’t leave home without medical equipment.  I have 32 pills to take on a ‘good day’ when I don’t have to take anything for an ‘as needed’ situation.  I’ve had to deal with Medicaid (a joke- they don’t help much at all, and it’s humiliating to need it), Medicare (very expensive to be on), the Part D prescription plan (which limits my access to the best insulins due to cost), the legal system, with bankruptcy prior to Medicare (extremely shameful to have to do that), etc.  It’s been hell.  Yes, I have many things to be thankful for- but this is no picnic.  I’d much rather be doing 40 hours a week and being useful. Now, it hurts to make a sandwich or empty the dishwasher.

5.  “Well, when you finally feel like it, we can ______.”  Don’t hold your breath, sister !   “Chronic” and “disability” don’t mean this will run its course, and I’ll be fine.  How I wish !   “Degenerative” means I’m going to decline.  I’m the one who should be having more trouble accepting that- why is it that others just can’t grasp the concept that some things can’t be fixed?   Don’t make it sound like it’s somehow up to me for this to all go away.  Don’t make it sound like I’m just not trying hard enough. Don’t make it feel like this is my CHOICE !  When someone says ‘finally’ it implies that there’s something voluntary about all of this.  If there were, I’d be in a way different place, working, and living a ‘normal’ life.

I’m doing the best I can.  If I were physically able to do more than I can, I’d be doing it.  I feel fortunate to be able to take out the trash and not need 2 hours to recover.  I’m always glad when I get home from the grocery store, and didn’t have to stop unloading the car because I felt like I was going to pass out.   I’m adjusting the best way I know how, which is to try and be thankful for what I have left that I enjoy, and am glad that no matter what happens to me, I still have God.  Some people don’t understand that.  For me, He’s a lifeline. ❤

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 !