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.

My Earthly Rock… Part One

The last couple of months have been heart wrenching.  My dad died.  He was 83 years young, and until the end, he was very active.  A couple of weeks before he went to the hospital, he drove from south Florida to northern Illinois in two days, covering the distance from south Georgia to home in one day to outrun a snow/ice storm.   He had always been my biggest ‘cheerleader’ from the time he and mom got me at 10 days old until he died.  But let me back up a bit.

My dad had always been pretty healthy.  He had the standard appendectomy and gallbladder surgeries.  He did have a bout with thyroid cancer a few years ago, that required surgery and radiation, but he was considered to be cancer free with the scans monitoring his situation.   This is a guy who didn’t even own a bottle of Tylenol for a long time, and when he started having some unexplained back pain several months ago, he finally gave in and got some Aleve.   When he called his primary doc about the back pain in November 2015, the doc ordered muscle relaxants over the phone- for a guy who had no history of chronic back pain, and did have a history of cancer.  I wasn’t (and still am not) very happy about that.  I feel he should have been seen in person.  Just as a matter of good care for something that wasn’t part of dad’s history.  Dad just sucked it up and dealt with it.

He felt good enough to go to Florida after Christmas with his female acquaintance, whose daughter and son-in-law have a condo overlooking the ocean.  During his time there, he had what was felt to be food poisoning, and did a two night stint in the hospital down there, staying an extra night when he got too dizzy in the elevator when leaving the first time for them to actually let him go.  He felt bad enough after that to want to get home as soon as possible,  to see his own doctor who finally ordered an x-ray when he got back.  X-rays really aren’t that great for back pain unless there is a fracture of some sort, or the discs are showing degenerative changes (which is the very basic place to start with diagnostic testing).  The x-ray didn’t show much besides some normal aging changes.  The doc also gave dad some pain meds, which did help a bit.  But dad got worse.

On March 1 (a Tuesday), dad asked me to go to see his doctor with him (being the family RN, dad liked it when I could explain things to him after appointments in language that made more sense to someone not in the medical field).  He was able to walk into the office and perform all of the tests with no difficulty aside from some pain with specific movements.  The pain was mostly to the left of his spinal column in the chest portion of his spine (in the back).   The doc ordered an MRI, which dad did NOT like, because of claustrophobia, but it was the best thing he could have ordered…. and would have been much more useful a few months earlier.

The next day, dad called me to say that he woke up with his legs feeling weird, like he couldn’t feel them very well, but it had eased over the course of the day.  He chalked it up to the muscle relaxant he’d taken before bed the night before, and decided not to take any more of them.  The next day, Thursday March 3, dad called me at 8:00 a.m.  Anybody who knows me knows that I’m a night owl normally, and getting up around noon was my usual routine.  Dad always respected that, so I knew that if he was calling, something was really wrong.   He said he couldn’t walk right.  He’d gotten to the bathroom, but needed me to get over there as soon as I could.  I asked him if I had time for a shower, and he said yes.  I had already figured that going to the ER was the only logical thing to do at that point, and was getting ready for a day at the hospital, minimum.  When I got there, dad was sitting on the bed.  He stood up, and it was like watching someone try to stand on an inner tube in a swimming pool.   I told him to sit down, and just let me know what he needed to get ready to go to the ER via 911- it was going to be the safest way to transport him, as well as avoid the waiting room.   After he shaved and had a bowl of cereal, we got a few things put into a bag in case they kept him (I couldn’t imagine them not keeping him since he lived alone, I’m disabled enough that caring for him would be not very logical no matter how much I wanted to, and he needed to know why this was all happening… he needed tests).  Then EMS came for him, and I followed the ambulance to the hospital.

The usual ER things were done (IV, labs, x-rays), and then they ordered an MRI.  Dad was not amused, and was very anxious about the whole thing.  He’d gotten some pain meds, anxiety meds, and nausea meds, along with a washcloth over his eyes, and by the time he went to the MRI I don’t think he would have cared if they put him in a coal mine shaft.  He said it wasn’t so bad.  The results weren’t so good.  They’d only done the lower spine in the ER, as they can only test for emergent problems- and there were some ‘suspicious’ lesions in his lower spine.  It was enough to admit him.   And enough to scare him.

His oncologist (he requested) has been a family friend for decades, as well as my mom’s and my oncologist at times (mom died in 2003 after 17 years cancer free).   The good doc came up that evening, and suspected that dad had multiple myeloma based on the type of tumor he’d had in his thyroid gland a few years earlier, and the looks of the initial MRI.  He also said that they needed to get an MRI of the rest of his spine, since the area where dad had the most pain was higher up.  Dad has always been terrified of hearing ‘multiple myeloma’ since his mom died from that (with amyloidosis complicating things the most) in 1979.  SO much has changed in treating MM since then, and “Bob” (oncologist- not real name) said that if it was MM, that dad could have a good quality of life with chemotherapy pills.   But first,  more testing with the MRI being the one dad was most nervous about.

It took a couple of days to get dad through the MRI, but when they got it, they saw a lesion pressing ON dad’s spinal cord at T-7, causing the pain, as well as inability to feel where his feet were when he was trying to walk.  He could move his legs, and had good strength when pressing or pulling against the doc’s (or my) hands.  The pain at this point was the worst, but only really bad if he had to move.  I’d never seen him in so much pain, and in 20 years of working as an RN, I don’t know if I’d seen too many other people with that level of pain.  Even my chronic pain (which is a different beast altogether) paled in comparison (and I don’t condone comparing pain, as everybody feels it differently in accordance with their own very personal frame of reference).  But dad turned pale, and grimaced to the point of not recognizing him if I hadn’t been there when it happened.  He was immediately scheduled to start radiation to shrink the mass within a couple of hours of the MRI being done and read.   Biopsies were done of various areas in the spine and bone marrow, and the hope was still that dad was going to be able to go to the rehab hospital, and eventually return home.   At least that was what we were aiming for, and “Bob” was optimistic at that point.

Dad was in the hospital for about three weeks before being sent to the rehab hospital (NOT a nursing home with physical and occupational therapy, which are fine for many things, but not intensive rehab).   He was still very understandably terrified, but gave it his all once he knew that the rehab hospital would  only work with him if he could do three hours of therapy a day (broken up into four sessions between PT and OT).   He didn’t believe he’d be OK, but knew he had to work as if he believed if he wanted any chance at going home (with help if needed), and not a nursing home.   So, he worked as hard as he could, and was transferred to Van Matre Rehab Hospital for the next stage in his excruciating journey.

…. on to Part Two.

I Just Need To Write…

It’s been a weird few weeks in a lot of ways, and I’ve been exhausted.  Today when I woke up, I got the message from one of my cousins that her dad (my late mother’s brother) had passed away.  He’d been sick for a relatively short period of time (well, that we know of- he hadn’t been to a doctor in almost 60 years), and was diagnosed with end stage esophageal cancer.  He was getting it treated, and long story short, they found him very early this morning just before his heart stopped.

I have so many emotions going through my mind.  First, I feel for my cousins, their spouses, and assorted grandkids and great-grandkids.  Their dad had never been easy to deal with, but he was the only dad/in-law/grandfather on that side that they’d known.  It’s a loss, regardless of how close they’d been, or what he’d been like to them over the years.  There is no chance for  additional healing at this point, with him directly.  They can only fish through their own memories and pain, and figure out how to remember him over the long run.  It might be easier to deal with anger now, but there will still be some degree of the type of pain that comes from a little kid who lost their daddy- even if it comes out sideways. The only dad they knew is gone.

I feel sad for my uncle, that he created his world in the way that he did.  He and my mom were siblings.  My mom also had multiple sites of cancer, and while she beat it, the radiation to her brain left her demented for the last 10 years of her life.  She wasn’t mean or unkind (most of the time), but before her cancer, when I was a kid, she  was hard to ‘read’ – and that was very hard as a kid to figure out. I didn’t know if she liked me, and sometimes she was unkind (though I don’t think she always meant it to be that way), and it took until my 30s to figure out that it had nothing to do with me… she was wounded in some ways that I knew about, and undoubtedly in ways I had no clue about.  Their mom was orphaned at age 6, and she had her issues with attachment (that she talked to me about- not just me speculating), which didn’t help with being a mom to her four kids- though her issues were more with ‘omission’ than ‘commission’…she was afraid to lose more people, and didn’t want to get too close.  She turned 100 years old two days ago… and today she will find out that she’s outlived a second ‘child’.

It’s sad that my uncle  pushed people away by bullying them (that was when he was being kind).  And at other times, he was very generous in hosting family reunions that were no easy or inexpensive tasks.  There were a lot of us roaming, eating, and talking through a full weekend.  Sure, some of it was to show off his home (which is very nice), but he didn’t have to do it.   I ended contact with him when he lied about a conversation that was deeply hurtful, and he called me ‘human debris’, and said he was ashamed to be my uncle.  Fine.  No more relationship.  End of story; I won’t stay through that sort of thing  (and that was a drop in the bucket compared to being raised by him),  though I did e-mail him when I found out about his illness to let him know I’d be praying for him, and if he had any questions I could help with as an RN, I was available.  I’m not sure if he answered back, or someone else did, but I got a reply.   I know I can feel OK in that I reached out.  But I’m still really sad that he died.  Mostly because he left so much unfinished business with his kids and surviving siblings.  I feel so badly for them.  None of them ever did anything to warrant the way he treated them.

In general, to folks who have pushed people away by being abusive jerks, fix it before your time is up (which could be anytime, we are never guaranteed a tomorrow).  Understand that your interactions mean something, and leave lasting impressions and scars.  The world isn’t all about you, but how you either add to it, or make things worse for others.  For those who are afraid to lose someone, so you keep people at an arm’s distance, know that you also have an impact on those around you, especially if you have kids.

For those who have been hurt by someone close, especially as a kid, know that it wasn’t about you.  It was the one who caused pain who had the problem.  You may have gotten the brunt of their character defects, but it  shows that they are damaged- it would have been anyone there at the same time if it wasn’t you.  Yeah, it hurts, is maddening, and feels very personal… but for someone who is incapable of functional, healthy relationships, it’s all they can pull off in life, and that is pathetic.  I’m not saying to not feel what you feel… I’m saying it’s not about you.   I had to figure that out before I moved back to my home town to help take care of my mom.  IF I hadn’t figured that out, I’d still be living 1250 miles away (where I’d been for 17 years).  In the years I’ve been an RN (since 1985, though disabled in the last several years), I’ve seen a lot of families’ pain that really stemmed from the hurtful one not being able to give what the others needed.  There were some who were outright sociopaths, but most were situations where the damaged ones didn’t know any other ways to interact.  It was the best they could do, and/or had no clue on how they were hurting people.  Absolutely no insight about their impact on others. It was their normal.

My uncle is dead.  My cousins are having to deal with whatever ways they grieve.  My grandmother lost another child.  My surviving aunt and uncle lost a brother- another sibling.  But, I think saddest of all, the chance for reconciliation and building good memories is gone for all of them.  I’m still reeling from three very significant deaths this year in my family (on the other side), and while my relationship with this uncle was purposely estranged to not get any more of his crap, I still feel badly.  I remember him  when I was a kid, when we got together (and I’m guessing he was on his best behavior), and it was good.   His wife/my aunt (who passed away several years ago) was  a bright part of my life.  It’s hard to explain, but it’s kind of like him dying takes away more of her.

I’m rambling… just be decent to each other, and don’t let relationships erode because of ego or general apathy about how interactions can be so deeply scaring.  Reach out, and try to make things right.  Don’t be someone who others want to stay away from.  Know that at the end of the day, you didn’t do anything to hurt another person.  Especially family.  Truly be able to rest in peace whenever your time is up.

If my uncle were here, I’d say “I wish we’d had a better relationship during these last several years, but I’d never wish anything bad on you.  Nobody deserves to have a painful death, or to have to deal with cancer.  I just wish I knew what made you OK with treating people how you did.  I have a feeling I’d be more sympathetic than angry, since you and my mom came from the same family.  Regardless of anything else, you were still my uncle.” 

To my cousins, aunt, and uncle (grandma isn’t online)…. I’m SO sorry.  I’m sure his death hurts in a lot of ways.

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.

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.  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.  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.  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.  That wasn’t what I noticed nearly as much as 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.

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.  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.

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.