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.

Honoring Abusive Parents… Does God Want Us To Throw Ourselves Under Their Toxic Bus?

I pray that God gives me wisdom especially as I write this post…

I’m very fortunate to have a dad who has my back, is fun to be around, and with whom I can talk about anything.  Having a relationship with him as an adult has been a lot of fun.    If/when he gets upset about something, he says what he says, and it’s over.  He doesn’t hold grudges, and generally forgets he was ever upset.  He doesn’t hold my emotions hostage. He doesn’t guilt me into anything.  I do often feel badly that I can’t spend more time doing things away from home, due to the dysautonomia, but he understands that I will do things when I can- and we enjoy those times.  Even when I was a kid, he never did anything that wasn’t in my best interest.  I didn’t always like discipline, but it was swift, to the point, and never left a feeling of shame.

My mom wasn’t so pleasant when I was growing up.  She wasn’t really ‘mean’, but she was broken. There were some things that were done that were most decidedly unpleasant, and if I had kids, I would not have repeated them.  But mostly she was broken.  She had some intense losses (two newborn sons, two years apart, just three years before adopting me). She was terrified of doing something wrong, and of losing me, so some of her ability to ‘attach’ or bond was damaged.  It wasn’t personal, though as a child, it felt that way.

It wasn’t until my mid 30s that I figured out that all of that was her ‘stuff’.  It wasn’t about me- even though it had a huge impact on me. Her mom was orphaned at the age of six, and had her own issues with attachment (she discussed this with me several times), and she deliberately didn’t allow for much closeness, so I wonder if my mom had any frame of reference for how to parent.  No kid comes with instructions, and not all parents have much insight into their own ‘stuff’.  I do know my mom loved me, and she did many things with and for me… but verbally, there wasn’t much clue that she liked me.   Basically, she did the best she could, with her own ‘stuff’ coloring her emotions and interactions.  I gained a lot of compassion and love for her, by understanding that whatever was going on wasn’t about me.

Being a Christian, it can be very frustrating and confusing to deal with abusive/neglectful/hurtful parents when so much is said about honoring one’s parents.  But does that include overtly abusive parents?  From what I’ve found, the answer is both yes and no…  We aren’t expected to obey demands that go against what God’s Will is for us (He doesn’t want us to be continuously damaged and tormented).  But there is a difference between our expectations as children and that of the adult child/parent relationship.   If a parent is acting within God’s expectations of a solid, loving parent, there probably isn’t an issue about honor, respect, and love.  But for the parent who isn’t able to understand that demeaning, demanding, and destroying their children’s emotions, and the relationship in general, I don’t believe things are so clear.   That abusiveness isn’t from God’s instructions on how to parent (Ephesians 6:2).

Here are links that help with Bible verses, regarding abusive parents, and adult children (remember, that these apply to the abusers as well as anyone who is a parent):

http://www.luke173ministries.org/537996

http://bible.knowing-jesus.com/topics/Abusive-Parents

http://www.gotquestions.org/honor-abusive-parents.html

Looking at the word ‘honor’, here is what Merriam-Webster has to say :

1. respect that is given to someone who is admired

2. good reputation; good quality or character as judged by other people.

3.  high moral standards of behavior

There’s nothing about throwing ourselves under the toxic family bus.

 

www.merriam-webster.com/dictionary/honor 

When there is a toxic relationship, we can’t control what the other person does.  We can only manage our own  responses and behaviors, and decide how honorable we want to be.   God will take care of the ultimate judgement on hurtful parents.  I don’t think we’re expected to put ourselves in harms way with abusive parents.  I do think we can protect ourselves, even via distance and refusing to participate in an abusive parents’ tirades and ongoing unrealistic demands, and outright lies.   Illness and stress are not excuses for abuse.  Even those with dementia are given boundaries.  Those with sound minds are entirely accountable.  If they have such severe reactions to something, they need a professional to help them- not unload in unhealthy ways on their family.

But what CAN we do?  We can focus on our own relationship with Christ. It’s hard to have a full-on relationship with our Lord when we are being torn down by an earthy parent.  We need to give that relationship to God.  We can forgive.  Forgiveness doesn’t mean condoning someone’s behavior- but it is an act of obedience to God.  It’s a freeing up of mental space for more positive content. It relates to our relationship with God… much more so than with humans  (Matthew 7 is good for this). We can show compassion without being subjected to continued and repeated abuse.  Sometimes people have to be loved from a distance.  Sometimes we have to just do what we can, and let the abuser stew in their own anger.

If a parent is not showing the love of God to their own kids,  there is something wrong with the parent (intentional or otherwise).  I’m not saying they have to be perfect, that’s impossible- but (if they claim to be a Christian) they should be compassionate, loving, forgiving, not demanding, not haughty, etc (I Corinthians 13).  LOVE isn’t rude, not self-seeking, isn’t easily angered, keeps no records of wrongs, isn’t proud, is kind, and is patient…  Parents are supposed to show their children those qualities.   And adult children can demonstrate these TO an abusive parent, but still not be subjected to 24/7 abuse.  Interactions can be brief, but still show love as God describes it (sometimes less is more).  Sometimes the honorable part has to be how we interact- not how we hope they interact with us.  My mom ended up with dementia before I was able to see her as someone who needed compassion; there was no reciprocation- but that was OK; I’d fixed my own perspective when I figured out it wasn’t really about me.  Not all abusive parents fit into that category, but we can decide how we want to be viewed in how we interact… we decide OUR legacy- not that of the parent.  The parent will have to answer to God one day, as will we- and He knows our hearts.  He knows about the hurt and damage done to the tender hearts we had as kids… and He can give us strength and wisdom to do what’s right as adults.

The ones who abuse are the ones with the problem, and in my opinion, it’s more of a spiritual and unresolved emotional issues that can’t be fixed until the person has some reason to change, and make amends.  It’s not about the kids (adult or otherwise).  It causes damage in the relationship, but it’s not ‘personal’. All anyone can do in an adult child/parent relationship is show the parent some healthy boundaries,  pray for them, and  be kind without being a victim again.  Sometimes distance is needed because the situation is so toxic.  I don’t think that goes against the Bible.  I don’t think we’re supposed to be slaves or sacrifices for the  abuser.  We’re to be ambassadors for Christ- with unbroken spirits.  And I don’t think that guilt and shame are ever part of a healthy relationship.

Our ultimate responsibility is to God, and following what He wants for us (Jeremiah 29:11)…. if an earthly parent isn’t following that same concept, they are not honor-able.

 

 

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.

Tears From Cold Water

August 1, 2000.  That was the day my half-brother died.  I’d never met him, but since I’d learned about him in 1982, his 5th grade photo always had a prominent place  on my dresser (along with that of his younger brother, a half-brother I have met, though we don’t ‘do fractions’ very well… he’s my brother, and I’m “Hey, Sis.”).  Those photos are  still there. I remember looking at my e-mail at work for the last time  that day, and seeing the message from my cousin. (I didn’t have a computer at home).  She let me know that he was gone, and what we knew of the details at that time.  He’d drowned.  He was  a competitive swimmer as a child, and I couldn’t make sense of it.  I cried.  I went  up to the front office where the accounts person was still working.  I told her what I’d found out, and just sat there, numb, for a few minutes.  I stayed numb about much of his death for years.

My thoughts  immediately went to my birthmother.  She’d been through a lot in her life, and then her eldest son was gone.  I wanted to write to her, but I didn’t want to seem like I was being opportunistic in getting in contact with her during an unimaginably painful time.  I wanted her to know how much I was thinking about her, and that I wished I could do something.  What, I’m wasn’t sure.  But, I was horrified that she was having to go through the death of a child.  He was closing in on 30 years old, but as a nurse, I’d seen many parents face the deaths of their much-older children, and it was always a kind of grief that is unmatched.  But during that time, my bio-mom and I weren’t in contact.   I heard about her through other biological relatives, but it was a complicated situation.

Then I thought about the ‘what ifs’.  What if my bio-mom and I got back in contact, and the chance came about that I might meet my half-brothers?  I’d never know that with A.  What if I ended up with a relationship with my half-brothers, whatever it might be?   I’d never have that with A.  Had he known about me?  I later found out that he had.  But at the time of his death, all I knew was that possibility was gone in ever knowing A, face to face.  My hopes of some sort of  contact died that day.  It’s not a tangible loss.  It’s the loss of a dream.

In 2010, I ended up with leukemia.  I was expected to do well, but in case things ended poorly, I wanted to let my bio-mom know what was going on, and not just find out I’d died, if that should happen.  We hadn’t been on ‘bad terms’ by any means, it was just very complicated, and time was needed since our first contact by mail in 1982.  She did want to reconnect in 2010 and had been trying to find me (my name is pretty nondescript, and I’d moved from the last place she knew I’d been), and we’ve had an incredible relationship since then.

While I still have trouble talking about him, she told me what happened to A.  It was an incredibly hot day, and he’d gone out to the river to swim.  What he didn’t know was that the dam upstream had been released the day before, and much colder water than usual was flowing down the river.  When his body hit the water, that was so much colder than his core temperature, his heart just stopped.  Done.  Over. A life ended.  From cold water on a hot day.  He’d been used to going to the river.  He knew about water safety, and was an incredibly strong swimmer.  None of that mattered.

In some ways, that helped in easing some of the horrible images I had in my head of his last moments.  It’s unlikely he struggled, or couldn’t get his breath. He didn’t fight underwater.  He hadn’t suffered.  He may have felt an odd chest sensation for a few moments, not really long enough to register anything, but then…nothing.   That has been somewhat  comforting, to know that he wouldn’t have felt pain or the panic of final minutes.

But I still cry.  I have some CDs of his music sessions with friends, and it’s very hard to listen to them.  I’ve managed to at least hear his voice on a few songs, and I’m so thankful I have those CDs.  I’m sure I’ll get to the point that I can listen to them. But now, I still just cry when I think about the day I got that e-mail.   I can talk to my birth mom and brother about A.  I love hearing about when my two brothers were kids.  I have a bunch of photos of all of them, which are treasures, and I’ve got some of my bio-mom, brother, and myself together, which I’m also so thankful to have.  I think the three of us ‘kids’ could have been a nightmare together, in a good way 😉

When I see stories about drownings, I always think about A.  When I see those looney ‘polar bear’ ice water swims in the winter, or jumps into ice water after saunas,  I cringe.  When I think about how easy it is for life to be done, I am thankful for the days I have, and wish with indescribable intensity that A had had ‘his share’ of time on earth.  It took me about 12 years to be able to wash my face in the shower. I didn’t want to have to hold my breath in water when I thought my brother had drowned.  (I finally got the bright idea to look down when I rinse my face, so there was no need to hold my breath… :/ ).   Even though I never knew A personally, he was a part of my life for the 18 years prior to his death, in the form of ‘what ifs’, trying to guess what he looked like ,  and those precious photos on my dresser.   Now, I do have contact with my bio-mom and brother, and I’m  so incredibly thankful for the relationships with them. They really are special parts of my life, and knowing them has helped me know myself better.   I still think about A, though.

He’ll always be part of my life.

Goodbye, Kathy….

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

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

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

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

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

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

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

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

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

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

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

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.