Time Buffers… It Does Not Heal All Wounds

Four years ago this morning, my dad called me at around 8:00 a.m.  He knew I generally slept until noon (up all night), so I knew it was something different and serious before I answered the phone.  He told me he couldn’t walk right, and asked if I could come to the house and see what I thought (have been an RN since 1985, though disabled for the last 15 years- I keep up with medical stuff by keeping myself alive).  I asked him if I had time for a shower, anticipating we’d be going to the ER, and he said yes, but don’t take too long. Dad had been having back issues and some weird symptoms on and off since the November prior to March 3, 2016.  He needed a better work-up, and at this point, the ER was our best bet.

I took my shower and packed my meds/insulin figuring that I’d be away from home for hours.  Then I drove to the house.  I wasn’t really prepared for what I saw.  Dad stood up when I came down the hallway after letting myself in with the garage door opener I kept for checking his house when he was on vacations.  Dad was standing next to the bed, with ‘balance’ that looked like someone trying to stand on an inner tube in a pool.   He had no clue where his body was in space (proprioception problem).  I told him to sit down, and I’d get what he needed.  First order of business was breakfast, even though I suggested he wait because of any lab tests  that might be done, but if I didn’t feed him, he wasn’t going to the hospital.  OK… food first.  I don’t even remember what I got for him. I do know it was in a bowl, and doubt I made oatmeal, so likely cold cereal.

His lady friend (not going into detail about her, as she was a self-serving “care taker” who was handy on occasion) came over and got some of his belongings together to take in case he was admitted.  I wasn’t going to take him home in his condition, so started getting my speech ready for that conversation with the ER doc.   I got his electric shaver and warm washcloth, as well as his toothbrush- he wasn’t going anywhere ungroomed.  Then I told him I was calling 911, since I knew there was no way to get him in and out of the car safely with what I saw of his balance issues.   He didn’t argue.  I knew he was scared.

The ambulance took some time to get to the house, as his address was in the county (by one block), and the station responsible for sending emergency help was several miles away.  They came in and got him loaded up, and I told them in no uncertain terms that we were to go to a specific hospital that wasn’t the closest.  His vital signs were fine, and he was not in respiratory, cardiac, or any other distress physically.  They agreed.  I followed in my car (and lady friend took her car).

I told the folks at the ER that I needed to be back with dad, since he tended to downplay things to strangers.  They needed to know about the months of erratic symptoms.  They also needed to know that dad would not do anything medically unless he could ask ME if it was legit.  He used to say he was getting a return on his investment in sending me to nursing school.  They let me back as soon as they had him gowned up.  He was terrified.

As with any ER, it takes time to sort through everything and get testing done.  We were there for at least 9 hours, in which time he had several tests done, including an MRI that almost didn’t happen because of dad’s claustrophobia.  He almost changed his wishes for a traditional casket burial because of claustrophobia.  They sedated him (a Benadryl made him loopy for a couple of days, so the stuff they gave him IV really made him blotto, which is what he needed so the MRI could happen).  They found some strange lesions on his spine- not what we were expecting.  There was talk of sending him home (alone), and I pitched a semi-dignified fit.  They said that the ER was for finding problems – and not necessarily to admit people. I told them of his living situation, my disability in not being able to care for him adequately when he couldn’t transfer safely, and the other safety issues in sending him home.  They did admit him, and he never saw his home of 40 years again.

I’ll never forget that day, or the 19 hours on April 3-4, 2016, just a month after he was admitted, and going a rehab facility that repeatedly blew off his complaints of abdominal pain.  On April 4, 2016,  he died after a diverticula that hadn’t been diagnosed ruptured and caused catastrophic infections in his abdomen, extending into his bladder and  filling it with gas.  He was a great dad- and I’m so fortunate to have ‘landed’ with him when I was adopted at 10 days old.  He is still missed daily, though it’s easier to remember the good and goofy stuff.  My mom died in 2003, and I couldn’t anticipate the devastation of losing my last parent, and the one who was constantly looking out for me and my best interests starting from that first day in 1963. I didn’t grow  up with siblings.  My mom did things in her own way to show her love, but dad was more open about it. We had a great relationship when I became an adult, and I could tell him anything.  When I was younger, I didn’t appreciate his work stress, or the ways he made sure that all vacations included things just for me along with general sight-seeing.  He’d go out of his way to make sure I got something special out of each trip.

I now live in his house (was also my home for 9 years as a teenager through nursing school), and I’m so thankful.  I have him, and my mom, in every room of this house, whether it’s some trinket or photo, or memories of things that we did here.  I couldn’t live anywhere else.  It’s home.  It’s my family in a house.  It’s what I have left.

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.

Furnishing a House And Keeping My Parents Living There With Me Through Memories and Decorative Items

The past few weeks since dad died have been the days I’ve been most dreading for quite a while (starting in earnest last summer when he was too tired to go on a private yacht for a week.  He claimed seasickness- that didn’t fly as he’d been in the navy and had a sailboat with two other couples.  Then it was too much fatigue- which was a huge change; this guy ran around ALL the time.   He was changing, and his mortality slapped me upside the head.  With both parents gone, I feel like I’m about 12 years old some days (and younger on other days, for bits of time) when nothing seems like it’s going to be OK, even though I know eventually the pain dulls, and the memories of good times will again get brighter.  Right now, it’s just a rat maze going through the paperwork things, keeping up with two ‘abodes’, and working to get the decisions made for what I want changed in the house without removing either of my folks from it.   I miss my daddy… haven’t called him that since about first grade.   Tonight I asked my uncle Russ if here was still a pair of shoes (or something ) that I could put with mom’s on a Welcome Mat inside the door.  I’ve got a pair of mom’s (with San Diego animal park shoelaces) that will work well- and Russ has a pair at the house in mind for dad’s.  ❤

My dad designed that house with his cousin (who is an amazing architect), and put a lot of time into it. I want to keep those special touches that remind me of him.  There are bricks from the streets of Chicago from the time of the Great Fire that make up the living room fireplace – 14 feet tall on one half of the ‘Great Room’ (remember Mrs.  O’Leary’s agitated cow?), a custom stained glass window in the gable of the vaulted ceiling in the kitchen, and an acre in the back of the house, with partially wild grass and trees- very private, and beautiful during seasonal changes- snow is gorgeous back there.  There are a lot of birds, squirrels, sometimes deer, wild turkeys, and other critters, which I love.

It was all put together by a family friend who is a great contractor (still in business), which has been HUGE in helping me get through the various updates I want to get done- the guy who built it has been out measuring, and his son and project manager have been walking me through all of it; they’ve been wonderful.  What they don’t do, they know someone who does that works with them often.   The carpet is the original stuff from 1976.  It’s gotta go- it’s got green tints where there were no drapes (on purpose).  Window treatments must be changed- the drapes are ‘nice’, and in good condition, but not my thing- I MUST have something that directs light away from me because of the dysautonomia and temperature regulation in my body.  The windows face east-west on either side of the house, so sauna material if I’m not careful.  The bathroom wallpaper is “disco era”, with foil.  It’s in outstanding condition, so for now, it stays.  I can live with that.

Dad and I had talked about things I liked and others I’d probably change long before he died.  His taste was “House Beautiful” (with antiques and high end collectibles- that  are  now at an auction house)… I’m more “House Standing”, with comfortable furniture and a casual vibe that I hope is inviting, as well as a place I’ll stay in as long as I’m still breathing air.  There were a couple of things that I hadn’t anticipated (isn’t that how it always goes?) that ate about a third of my original ‘goal’ budget… but I want to get it all done right, so it seemed like a no-brainer.  I found an alternate for a pantry that will work well, and saved me a few thousand bucks.

After getting a check from the first auction of dad’s belongings that I didn’t keep, I set off to a local mom and pop furniture store that has been in town for  a LONG time.  They’re having their grand opening of a store closer to me, which I hadn’t realized was still going on, so that was a nice surprise to know I’d get %20 off (roughly).   I’d set out for 2 green recliners  (only) that felt like sitting in a cloud, but had to swivel to either talk with guests or watch show falling/thunderstorms from the windows in the living room. If I can get the gas fireplace going, that’s another form of live entertainment.  Anyway, the chairs will be made to my preferences.   I hadn’t expected to be able to get a couch in a custom fabric for what I could afford, a beautiful Amish (simple design, well made) BED- the whole thing, headboard, frame, and foot board, and a great  buffet – all in my taste.  Very simple designs, sturdy, and fit into a contemporary house in the main part, with the Amish bed working with my quilt and a bit more retro/mild country vibe in there.  The kitchen will be a bit of an eclectic bouquet- but still keep the colors dad worked so hard to pick out for the counter overlay and bigger items.  There are a few cosmetic cabinet things that I need to get done – but all in due time.

This might not sound like an earth shattering event to a lot of people, but it’s the first  time I’ve been able to pick out everything I like !  I’m not refurnishing the whole place- I still have some nice pieces here, as well as some things I’m keeping at the house that dad had.  When dad found out that the reason I didn’t have much furniture in Texas (and nothing new) because of financial constraints, he sent me money if I’d find a second hand item in good condition.  He did buy me a new dinette set (was eating at a card table for over 20 years), as well as a group of end tables and coffee table, and a 32 inch TV when my 13 inch set that I got  in late high school  had lost so much horizontal hold that I got audio and about an inch of the “picture”, but it had lasted for about  20 years ! .   The ‘new’ TV even made it back to my hometown when I moved 1250 miles back to help take care of my mom (she died in 2003, which was unexpected), and was then graduated to the flat screen.   Now, I have at least 4 other TVs (dad had one in his bedroom, my old bedroom (his self-proclaimed den),  living room, and kitchen… I forget if one was in the downstairs living area  or not- it’s designed for visitors for the most part).

The dining room table was made for the house, and is a big, solid piece of table, covered in formica- doesn’t sound that exciting, but in the “Great Room”, it works very well.  Chairs from an old opera house from somewhere around here surround it.  Those stay.  🙂   Living in apartments for  30 years has been great in a lot of ways; I’ve moved a lot, maintenance was a phone call or e-mail away, etc.  But white walls (I will have those at the house  mostly,  except for the  wood paneling walls that are painted a shade of almond, and the disco wallpaper, which is fine- outstanding installation), the less expensive carpet in apartments, dinky refrigerators, some seriously funky linoleum over the years, and NO ‘right’ to do my own thing has been annoying.  Then there are the views.  One takes what one wants if the price, neighborhood, and location work.   For the last 13 years, I’ve had a nice apartment, but my view is of a parking lot and a tree. My second apartment in Austin,TX overlooked a relic car part lot… never saw so many Corsairs in various stages of decomposition.    I do have nice neighbors here at the apartment now- and I will miss them.  I spent time growing up at the “new” neighborhood, but don’t recognize the vast majority of the folks there.

It is fun to pick out new things, but it’s also really important to me to keep my parents’ presence in that house.  They are what made it a home.  The scuff marks at the top of the stairs from dad’s shoes will stay.  Mom’s wheelchair marks on the bedroom door will also be untouched.  There are some things that nobody but me will appreciate, and that’s fine. Dad left me a wonderful home and “yard” (more than an acre, WITH his lawn guy staying on for the weekly trims).  It gets harder to know he won’t be coming back.. it’s only been  a month and a half since he died (time gets so warped).  I was pretty sick with bronchitis for a couple of weeks after going gangbusters with “getting it done” (I’d ‘house sat’ for dad whenever he was out of town, so knew what as in the house, and what I didn’t want to keep).    I’ve slowed down a bit, but still moving forward.

But I really miss him.  Fifty-two years, I was blessed enough to call that man my dad. ❤

My Earthly Rock…. Part Two

This is the hard part… it’s hard to write these memories, that are so fresh.

Dad was transferred to the rehab hospital on March 24, 2016,  three weeks after being admitted to the hospital.   He was very nervous about the rehab hospital not wanting to take him because of various symptoms associated with the spinal cord pressure from the lesion that was still not identified after several biopsies (the spinal cord lesions, bone marrow biopsy- nothing was ever identified as cancer).  I reassured him (or tried to) that those issues were why they were in business.   Dad was willing to give it all he had.  He was weak after three weeks in bed.  During his time in acute care, all transfers were done with lifts or passive movement (mostly to avoid the hospital staff getting back injuries).  He hadn’t been up on his feet for those three weeks.  For each day in bed, %3 of muscle strength is lost.  That’s why it’s so important to be up as much as possible when someone is sick and/or in the hospital.  But sometimes, it’s unavoidable.

The first day dad had physical therapy at the rehab  hospital,  I wanted to be there to get an idea of how he was starting out.   With two therapy staff, putting their shoes in front and back of dad’s shoed feet, and him pushing up from the elevated therapy mat, he was able to stand up absolutely perfectly… but he couldn’t tell he was vertical, and he felt like he was falling.  He knew he was up, but had no idea where he was in space (proprioception issue).   He had a look of terror in his eyes, but he was doing everything they asked him to do.  Everything.   I was actually very encouraged by what I saw, and it brought tears to my eyes.  It really looked like he had a good chance at getting strong enough to go home.  He had to be able to transfer with one assist (one person) in order to go home, and if the first day had him ‘up’, I was thinking that a few weeks would have him that much stronger.  I  kept telling him “you’re doing SO good!”.  And I meant it.

During the initial acute care hospitalization, and continuing in varying degrees, dad had been having stomach pain (he’d also been hospitalized in Florida for stomach issues that were thought to be food poisoning).  It was thought to be from the way the nerves worked coming from the area of the spinal cord with the most pressure on it.   I questioned why nobody was trying to figure out how to help that, and I was sort of dismissed as just not understanding that it was from the spinal cord pressure.   I had worked neuro when I got out of nursing school, as well as various types of rehab during the 20 years I was able to work as an RN.  I understood the obvious symptoms, but knowing my DAD, I also knew that nobody was even considering that something else could be causing a problem.   Being out of an acute hospital sort of narrows focus.  Nobody was looking for any other problem.   And that was a huge omission.  I don’t know if anything could have been done, but nobody was looking.

The stomach pain continued to be a problem in regards to general comfort (progressing to suffering), ability to eat, and his general feeling of not going to be OK.   Come to find out, dad was right.  There was something going on that nobody knew about.  He’d been telling me specific things he wanted done if he died.  He had me write them down.  There were four things he wanted done specifically with three paintings and a  small Steiff teddy bear.  I wrote them down, but never thought that he was not going to get through rehab.

On April 3, at 5:20  that Sunday morning, I got a call from the rehab hospital to tell me that dad was having more intense abdominal pain, and his blood pressure had dropped when they got him up to use the bedside commode; he needed to go to the ER.  I jumped out of bed and grabbed what I might need (my medications) for the day, and took off to try to catch the ambulance to make sure we got to the hospital where dad had been prior to rehab.  I understood that they HAVE to go to the closest one if someone’s vital signs are too unstable, but thankfully they went to the hospital with his more current records about the current situation.  I wasn’t prepared for what I saw when I got back to the room to see dad.

He was delirious from pain as well as sepsis (which was discovered through the ER blood testing).   He was unable to give the right year, and wasn’t cooperating with the nurses as they tried to get an IV in to give him pain medications.   Normally, dad would joke around with those trying to help him, but he kept telling us all to “shut up” (not a phrase he used), “get my overcoat”, and “goodnight, goodnight, goodnight”  (wanted to be left alone). He was also doing these weird biting gestures towards his female friend when she got there.  I got  up near his head to talk to him (and wiping his mouth after he vomited), and explaining that everything that was going on was to help him.  He’d acknowledge that he’d heard me, but was still erratic and ‘not right’.  Eventually, the nurses got an IV in to give him pain meds (and nausea meds), which did help him settle down.   I’d never seen dad like he was that morning, and it scared me, but I had to stay in ‘nurse mode’.   I knew that I’d just become responsible for decisions regarding his care.  He was no longer capable of making rational decisions about his health.  The POAH (Power of Attorney for Healthcare) had just kicked in.  That made me so sad.  Dad had always been able to make good decisions, and his mind had always been so sharp, with a great sense of humor.

Dad was sent for an abdominal CT scan, to find a source for the pain.   When the ER doc pulled me out of the room to tell me what was going on, I was completely caught off guard.  Even the ER docs and radiologist weren’t expecting what they found on that scan. There was a ‘diverticula’ (small pocket that extends from the intestinal wall) that had ruptured.  Dad had never been diagnosed with diverticulosis (the outpouchings) or diverticulitis (inflammation of the outpouchings).  The contents of dad’s bowel had been spilling into his abdominal cavity, causing extreme infection to the point that his system wasn’t able to fight it off (peritonitis with sepsis/septic shock).  The bacteria had also spilled into his bloodstream causing the sepsis and septic shock (what  made his blood pressure drop).  The sepsis was so severe that it was producing gas in his abdominal cavity and bladder.   Four specialists that were contacted, and nobody could fix it. Only one came in to see him (urology guy), and he said that the catheter was the only fix for gas in the bladder (which had already been inserted when he got there).  A general surgeon, urologist, infectious disease doc, and internal medicine doc- and the ER folks- all said that dad was going to die, more by what they didn’t do than what they said.   I knew what they were saying, and yet it didn’t seem possible that this vibrant man who had driven home from south Florida just weeks earlier was going to die very soon.  And that I was responsible for any decisions until that happened.

Dad and I had discussed end of life care many times, and I knew what he wanted.  He didn’t want anything heroic or that would prolong the inevitable.  The disease process was making all of the decisions for him for the most part, I just had to sign off on not doing anything active, other than whatever it took for comfort.   I knew that he didn’t want to be a full code- he had made himself a “no code” when he was initially hospitalized in March.  But signing that “Do Not Resuscitate” paper broke my heart.  I felt like I was giving up on him, and yet I knew that keeping him in a state of intense suffering would have been cruel and selfish. The ER doctor and nurse practitioner made sure I understood what was going on, as well as the inability to offer any hope besides comfort care.  When  I told them that I’d been an RN since 1985,  they sort of relaxed a bit.

I had gone back in to talk to dad, telling him that they knew why he was so sick, and that they couldn’t fix it.  He nodded enough to let me know that he heard me.  When I asked him if he was ready for comfort care only, he nodded (not that we really had a choice).  When I asked if he was ready to see mom, he nodded again.   I had promised him that first day he was in the hospital (March 3) that I’d be honest with him about anything I knew, and I felt that I needed to keep my end of things regarding what the CT scan had shown.  That was one of the hardest things I’ve ever had to do.  He had a right to know.  He almost seemed relieved.  He’d been in so much pain, and was facing dependency in a nursing home if he couldn’t transfer with only one person.  That wasn’t my dad.  My dad was the guy who got up at 7:00 a.m. to go stand in line at estate sales, or drive crazy distances while traveling.  He wanted to live as long as possible, so when he nodded that he was ‘ready’, I knew that he needed the ultimate relief of being healed by the Great Physician.  He was ready to see God.

They offered a bed in ICU, which would have driven dad nuts with all of the bells and alarms, and it wouldn’t have fixed anything.  Dad hated any extraneous noises, so I knew he just wanted a private room where it was quiet.  With any admission, he’d beg me (literally) to make sure he got a private room.  I had to tell him those times that I’d do what I could, but hospitals have to reserve some private rooms for people who are admitted with infections that would put others at risk.  But with palliative care (end of life), private rooms are generally available.  So that’s where we went… to a room on the cancer floor where they were used to handling patients who were there for comfort care only, until the inevitable happened.

I had called one of dad’s close friends earlier that day while dad was in the ER, and let him know what was going on.  He had been able to get to dad’s Sunday School class and let them know  en masse, which was incredibly helpful (one of dad’s lifelong friends was also in that class, and he came up when dad was still in the ER).  Those two friends were able to come and visit, and another friend had dad’s brother’s phone number (he was in Florida) so I could let him know as soon as I got it.  My uncle called dad’s local cousins, who were able to see dad later that afternoon, after dad had lost consciousness.  But they were there, and able to spend time with dad once he got to the room.  I firmly believe that it’s important to let people know that they aren’t alone, even if they can’t respond.  It was important that those friends and family be able to see dad before he died.   The friend that I first called (I had his phone number, as he was my ‘go to’ guy while dad was in Florida) arrived after dad was in the room, and I went out to tell him that dad was dying… I’ll never forget the look on his face. Nobody was expecting things to change so drastically.  Both of those friends had seen dad the day before, when he seemed to be doing better.  Looking back, it’s likely that the diverticula had already ruptured, and the pressure was relieved, so he felt better- but that started the cascade of toxins in his system, that ultimately caused the septic shock which is what killed him.

During the time in the room, the nurses were fantastic about watching dad’s comfort level. Even when someone can’t verbalize how they feel, it’s easy to watch restlessness, picking at blankets or clothing (dad kept trying to remove his gown, so I just took it off and kept him covered with the sheet and blanket),  moans, etc.   I was there from the time he got to the ER that morning, and  alone with him after 9:00 p.m. or so, when the others went home.   I wanted that time alone with him, knowing that those were going to be the last hours I’d ever have with my dad.

The nurses would come in periodically, and ask if I wanted certain things done (blood pressure, blood sugar, catheter, etc).  I agreed to anything that was for comfort (the catheter helped decompress the gas that had built up in his bladder, but there was already no urine being produced).  Nothing was going to be fixed by having his arm squeezed for a blood pressure reading (but I did agree to them doing it if they needed it for paperwork; they didn’t).  His blood sugar wasn’t going to get better (he’d been on steroids for the spinal cord pressure, which are known to elevate blood sugar, as can infection).   I’d had to make the same decisions when my mom died.  Dad had deferred to me once he knew that mom wasn’t going to recover from her sepsis caused by a urinary tract infection that was blown off at a hospital in Sun City West, AZ (not Mayo).  It was a horrible repeat of her death in many ways.

For almost four hours, I was alone with dad.  I’d sort of flip flop between ‘daughter’ and ‘nurse’ mode.   Sometimes, I’d sit in the recliner by his bed and just listen to his breathing, never wanting it to stop, but knowing that he needed to get some perfect peace.  Other times, I’d  sit on the bed, and hold his hand or stroke his cheek with the back of my hand, telling him how lucky I’d been to have him for a dad.   I reassured him that I’d be OK, but that I’d miss him.  I let him know that I knew he’d been working so hard to go home, but if he was ready to rest, it was OK  (it’s important to let people know that if they die, loved ones will be OK).  The nurse medicated him a couple of times when his breathing indicated that he was likely uncomfortable.  And, I’d  cry, knowing that ‘it’ was going to ‘happen’ soon.  Those hours were both precious and excruciating.

Finally, his breathing eased into a gentle rhythm.  There was no struggle.  He just slowed somewhat, and then his breathing gradually and gently slowed to a stop.  I was sitting on the bed with him when he went to be with the Lord.  There was a single facial ‘contortion’, and then ultimate peace and healing.  He was reunited with mom (they’d been together for 46 years), and his love after mom had died (Marilyn- 8 years).  He got to see his two sons who had died as newborns, within a few days, after their birth separated by 2 years.  He was reunited with many friends and family.  And, most importantly, he was finally free of the pain and fear that had gripped him for many weeks.

It’s only been a little over a month since dad left this earth.  I will always be so thankful for the 52 years I had him.  He was my biggest ‘cheerleader’, and always had my best interests in mind.   I miss him.  A lot.  But with hope in the promises of the God I believe in, I know I’ll see him again.

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.

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.

If I Could…

...I would fix everything, and walk you back to your normal life.  I would take the pain and nausea and put it in a box,  and throw them  into a volcano, permanently removed.  I’d take the fear and confusion, and surround you with nothing but gentle hugs, a warm blanket, and a feeling of safety.  I’d take the frustration and slap it upside the head, and then help you find something to make it all right.  I’d look for something silly to show you how you can still smile, and how you really are still you in the middle of all of the chaos. (You really do have a great smile and laugh).   I’d take away that feeling like you’re dying, and remind you that this is all temporary, and that you are the best candidate to survive all of this.  Cancer doesn’t define you; it shows how strong you are.  And you really are.  But you are not cancer.  You are so much more.

If I could, I’d figure out some way for you to know what is and isn’t normal in an abnormal situation you’ve never been exposed to.  I’d give you all of the information you need to understand what is happening (that I know of), so you know that you have  a solid chance at beating this.  You’re strong, and you dwell in the positive when you’re you, in your normal life.  I wonder if some of the pain is the grief of the life you’ve had to set aside for a while.  I wonder if anybody has sat down and taken your hand and told you that it’s more than OK to feel that this level of vulnerability is terrifying, and affirm that  it’s not going to last forever.  And being terrified, and grieving isn’t going to change who you are. It will create another depth of character you didn’t know you had.  I wish you never had to deal with all of this- but you will come out stronger.

I’d look you square in the face, and tell you that the drowsy feeling with pain meds is normal, and often gets better as your body adjusts to both the pain relief and the medication in your system.  I’d let you know that you’re not going crazy. But I understand how it can feel that way (people who are truly going nuts don’t worry about it  🙂 ). Any bonafide goofy person I worked with  wasn’t concerned in the least.

If I could, I’d stand on my head if I thought it would make you well (and if you can get a visual of me on my head, well…. that should be worth a giggle. I’d probably pass out half way up, and then what?  A  ‘fluffy’ middle aged door stop).  But I’d do it if it meant you’d feel better ❤

You have an amazing support system with your friends/coworkers/family.  It awes me that one person has so many people around for support.   They will help you heal as I’m sure they already have.  Just one more minute of pain, just one more hour of uncertainty, just one more day of STILL being here and fighting this beast that has turned your world upside-down.  Take it in small increments. You’re stronger than a beast who was only brave enough to go in the back door !  You have a life that is waiting for you to get through this.  And that will happen. I wish I could make the journey easier, and speed up the process, but one thing about cancer- you want the treatment that gives you the best longterm odds.  Keep thinking about how mad the beast must be !  😀

You are already a survivor, did you know that?  Seriously, they consider anybody who gets diagnosed to be a survivor- unless you die of shock when you get the diagnosis and fall over stone-cold on the floor.  But you got through that  and stayed conscious !  So, you are surviving.  There’s some work to do on the ‘thriving’ end of things, but you can’t get there all at once.  Chemo is a direct assault on your entire body just to kill the beast.  And, from what I hear, it’s helping. 🙂   You. Are. Winning.

Feeling like you’re never going to get through this is pretty normal.  There is nothing like chemo that I can think of in 30 years of nursing that compares. ( nursing school -2 yrs , working as an RN -20 yrs , and the last 8+ as a patient on disability -I still keep my license to keep my own butt going).  I’ve had a lot of medical stuff, over decades.  And chemo is the hands-down winner for “WTH just happened to me?”.  😮   There are no clear ways to explain how it’s going to feel (and it’s different for everyone).  But,’ lousy’ would be a vast improvement much of the time.  And you can get through this.  Your body can handle this treatment.  You will feel better.

In the meantime, look out of the window (or find one that has a view), and just look at  the trees and birds, the clouds and sky, the people walking around, and the ones taking care of you.  Watch something goofy on TV (I lived on ‘Funniest Home Videos during the first 6 weeks of being in isolation for the leukemia- and I’m sure the nurses thought I was a bit ‘touched’ when howls of laughter would come out of my room).  Find things that make you happy in the moment.  No need to be elaborate- just what makes you happy right. This. Second.  Tomorrow will take care of itself.  Yesterday is gone (though those were some great GF almond cookies Carol made last Christmas Eve !!).

Take a deep breath- and remember you’re still here right now.  And you’ll have the last laugh in the end.  But until then, feel free to cry, grieve, be depressed, miss being at work (that was a really hard one when I ended up on disability- it’s not like retiring when you PLAN on not working, but it’s like it’s TAKEN from you by some rude disease), laugh at silly stuff, and  deal with whatever else is going on.  There are no wrong ways to do this- other than to just get through it.  And it’s all temporary.   Overwhelming, but temporary.

You can do this, dear cousin.  I’m in your corner %110.   And I know there are so many who are there in person and spirit that wish nothing but the best for you. You are loved.  ❤

Remembering Peeps and Mom

Mom loved Peeps

Mom loved Peeps

This week will mark the 10th anniversary of my mom’s death.  It really was a miracle that she lived as long as she did, considering bilateral breast cancer (one side was actually ‘pre-cancerous’ but required a simple mastectomy, but the other side required a radical mastectomy), metastasis to her right lung, and metastasis to the right side of her brain.  Those are ‘just’ the cancer sites…she also had other cancer-related diagnoses including seizures that started well after her cancer treatment and dementia as a result of brain radiation.  The dementia was the hardest to watch. On March 13, 2003, she died after becoming septic from a urinary tract infection. She couldn’t verbalize symptoms very well, so dad didn’t know how sick she was until she began to have increased seizures and became unconscious during their winter away in Arizona. She had been ‘fine’ the day before, and had been with him at an art gallery.   Mismanagement (neglect) by the emergency room where she had been taken by ambulance (unconscious) took away any chance she may have had (they sent her home when she needed IV antibiotics- not pills and an elderly husband as her only caregiver more than 2000 miles from home)…but dad and I have to look at it this way: at least she didn’t end up in a facility not knowing anybody, and being impossible to care for at home. She survived 17 years after her last cancer diagnosis… I don’t know many people who have survived the all of the various cancers she had, especially back then.  If I remember right, her first breast cancer diagnosis was in 1981.  Things have changed a lot.

My mom and I were never all that close. For decades, I knew she loved me, but didn’t have a clue if she actually liked me. It was a hard way to grow up, especially when I was little.  As I got older (as an adult) and was able to imagine things from a point of view of someone in her situation (she had two newborn baby boys die within two weeks of their birth about 2 years apart  by the time she was about 25 years old), it made more sense that she couldn’t allow herself the luxury of being  vulnerable to more loss.  She was able to convey warmth to her students during the years she taught 2nd grade and later 4th grade and in the resource room at Rockford Christian Elementary School; they weren’t hers to lose; she could risk more of herself… but I never saw that degree of warmth.  I get it now.  She wanted me. She loved me. And she was terrified of losing me (confirmed by her mother).  It’s heartbreaking to look back at what she went through.  As a kid, I didn’t get it.  I just felt like she wanted me out of her way. I’m glad I was able to get past that as an adult, and feel compassion towards her.  She did the best she could most of the time.  I may not understand her reasons for some things, but I think most people do the best with what they are equipped to handle.  Add the loss of two newborns before her brain was even done growing, and more makes sense. That in and of itself would change her brain chemistry.

As mom’s dementia progressed, she had fewer and fewer things that she remembered and gave her some degree of pleasure. She watched the same movies over and over again, since she remembered them (and do NOT call  her while she was watching them, or she’d hang up on  you- something she’d never do in her ‘normal’ years).  She loved sweet stuff, which I’m told isn’t how she was when she was younger. I do remember her liking ‘Fifth Avenue’ candy bars when we went grocery shopping when I was a kid. She also was quite willing to take my Halloween candy leftovers (I didn’t like Baby Ruths, peanut butter taffy, or most marshmallow candy).  All I had to do was sort it, and give her my rejects- and she loved them.  During her dementia years, spice drops (gum drops) and Peeps were favorites. I made sure she had gum drops when she and dad visited me in Texas.

Peeps began making their marshmallow candies for holidays other than Easter, so I’d go to the store the day after holidays and buy mom a bunch of Peeps when they were half-price. They hardly weighed anything, so I’d mail them to her in Illinois from where I was in Texas.  She loved getting those ‘care packages’. Dad, however, was not all that amused by having to police them, since she’d eat them all at once if left alone with them.  This is the guy who would go all over town in July looking for pumpkin pie since mom thought it was Thanksgiving.  With the Peeps, he’d hear “I want some Peeps” multiple times a day until they were gone.  She remembered they were there…

Whenever I see Peeps, I think of her and the simple things that made her happy during her last several years.  As hard as it was to watch her slip away and become someone who was so unlike the ‘normal’ her, it was also so easy to make her happy.  I never felt I could do things ‘good enough’ as a kid- it may sound sappy, but I wanted to do something to make her happy when she had so little of her real self left.  For dad, it was hunting for pumpkin pie (and other goodies) during the off-season for whatever she had in her head that she had to have. For me, especially before I moved back home to help dad take care of her, it was gum drops when they visited, and Peeps to mail to her.  I don’t like Peeps at all.  But they do make me smile when I think of how happy they made her .  🙂

Peeps remind me of my mom

Peeps remind me of my mom

January 7, 1978… The Nelson Murders, Rockford, IL

EDIT:   This post is my most viewed post.  I’d like to know who is searching for this, and why (my guess is that it’s more “kids” who remember the Nelsons).  Please leave a comment.  🙂

January 7, 1978…. it was a clear, cold winter Saturday when my grandmother (and grandfather) walked into our house and asked me if it was my figure skating coach whose 6 children had been murdered, and found earlier that morning.  I froze.  I was just 14 years old (by a couple of months), and had no frame of reference to figure out how to wrap my head around what she had just asked.  It couldn’t be true, could it?  Ann’s kids had to be OK.  I knew  her oldest daughter, Jennifer, who was 13 years old. We saw each other at the skating rink on occasion.  We knew each other well enough to know where we knew each other from- and if we’d been thrown together with strangers we would have stuck together… so we weren’t close friends by any means. But I knew her.  I didn’t know her other siblings.  But I knew Ann. I adored Ann.

Ann Nelson had been my skating coach for a few years on and off, and more recently had become my coach for private lessons.  She was compassionate (something I didn’t feel much from my own mom, though as the years went by I learned so much more about how much she DID love me- in the only ways she knew how). Ann took the time out of her evenings to call me when I was babysitting to see if I was OK.  She stayed behind from a coaching and rink staff party when I fell and hit my head pretty hard during the Spring Ice Show rehearsals in 1977.  My folks were out of the country and I wouldn’t give anybody the phone number of the grandparents I was staying with (grandma would have freaked if she knew I got hurt on her watch- same grandma who broke ‘the news’ to me), so she made sure I was doing well enough to go home when  it was time for me to be picked up. She’d already called for any available physicians that happened to be at the rink that night to come and see me in the back room where they’d carried me (I’d been knocked out cold), and there was one there- so I’d been seen by a doctor. She also was a role model.  I adored her, and looked up to just about anything she did. She had been an alternate in ice dance on one of the mid-late 1960s  US skating teams.  I still have a photo of her and myself on my dresser from 1978.

After my head reattached to my body when my grandmother asked me if the kids who were murdered were my coach’s kids, I went into my bedroom and turned on the local radio station.  That’s all that was on.  It was true. Ann’s kids were all dead, and her husband, Simon Peter Nelson, had bludgeoned them with a rubber mallet and hunting knife.  Over and over, I heard about Jennifer-13, Simon-11, Andrew-8, Matthew-7, Rosie-5, and David-3  being dead.  At first nobody knew anything about Ann, or they weren’t talking about it, so I had no idea what had happened to  her.  I was terrified she was also dead.  Being only 14, I hadn’t had a lot of experience with losing anybody I cared about, and really didn’t know how to handle it all.  But I couldn’t stop crying.

The next morning was a Sunday, so the newspaper would be a bigger edition, and my best chance of finding out what information was available.  I found out that Ann had been in Milwaukee, WI after telling Simon Peter Nelson that she wanted a divorce. Evidently, he snapped and killed all of the children, and the family dog- a dachshund named Pretzel.  He then drove to the hotel where Ann was staying, and threatened to kill her, but told her about the kids. At some point, Ann called the police and told them that her husband had told her he’d killed all six of their kids, and they needed to get over to their home.  Reports that were going around  said that in order to identify some of the boys, they needed the footprints taken at their births to confirm who was who, they were so mangled from what their father had done…. what their f a t h e r  had done.  The idea that a parent could do such a thing was unthinkable. This was the late 70s. There was no 24/7 news coverage of family atrocities.  These things just weren’t heard of unless they made national news- and those situations were rare, and not in MY city. To people I knew.

I’ve thought about Ann so many times over the years.  I’ve wondered if she’s ever had some sort of peace to continue any quality of life. I’ve wondered if she did end up getting married, as it had been said months after the murders, around the rink.  I had taken lessons from her throughout the time up to and somewhat beyond the trial and conviction.  She had seemed like herself, but I can’t imagine the agony and heartache she must have felt.  The rink had to be sort of a bittersweet place; she was in a familiar place with people who cared about her, but her daughter- a promising ice dance skater- wasn’t there.  Jennifer’s ice dance partner was there, and seeing him had to be hard.  Yet, maybe the familiarity and kids who didn’t ask questions (or some of the younger ones didn’t really understand what had happened) were of some comfort.

It was during this time that I was being ‘groomed’ for ice dance.  My mom told me years later  that Ann had called her and explained that I could be on a national competition circuit path, but it would involve a lot more skating time, much more expensive skates, and that a parent be available to travel with me. Things were different back then.  Now, the coach is considered to be the acceptable adult to accompany the kid.  Back then, it had to be a parent or relative…and my folks both worked, so that wasn’t possible.  It broke my heart to not be able to spend more time skating, but it was what it was, and I survived …but I’ve never stopped wondering how Ann is doing. Where she is. If she’s been as OK as someone could be who had survived the extermination of  her kids.  As I’ve gotten older, I’ve been able to understand the magnitude of what happened much better, and really don’t comprehend such a loss.

When I was 14, I’d already been exposed to the kidnapping and murder of an adolescent boy in our city. About a year earlier… Joey Didier was on his paper route when he was abducted, and later found dead at a Boy Scout camp about 25 miles away- he was found while I was staying with my grandparents who lived relatively close to the camp. I remember it being dark when the news told of his body being discovered, and being out in the country  near that camp.  Then the Nelson Murders (as they came to be called) happened.  In my adolescent brain, that meant that adults either snatched kids and killed them, or that parents can get mad and kill their kids.  It left a huge impression on me as well as most of the kids in Rockford, IL.   Around here, it’s one of those ‘where were you when?’ events to those in the skating community, or who were of the same ages as those who whose lives were stolen.

My folks didn’t really seem to understand why I was so upset- but I think it was more that nobody knew how to deal with that sort of thing.   It’s just  not in the Parenting 101 Manual- ‘How to Help Your Kid Deal With Parental Murders’ isn’t in the index.  I’d heard of murders among adults- but never anything where a parent wiped out the whole family of kids.  It was scary, as well as incredibly confusing.  Add to that the loss of my coach, when she eventually moved away after the trial (understandably), and I was upset for several years, though I learned to shut up about it.  But it never went away.  I still remember it every year, 34 years later.  Since moving back here, and having access to online petitions, I sign all  protest petitions that I know about when Simon Peter Nelson comes up for parole.  The city still reports those parole dates on the evening news.

I don’t know if Ann Nelson (or what she changed her name to, though it was rumored that she became ‘Elizabeth Johnson’, marrying the man she’d been divorcing Simon Peter for) is still alive. She’d be about 72 years old now, as she was 38 at the time of the murders and trial.  It’s very possible she’s still out there.  Unless her heart physically broke.  I’ve always wanted to tell her how much of a positive influence she’d been when I was younger, and how much I appreciated the time she spent with me, helping me out when I got hurt, and also  being encouraging when I was going through adolescent ‘stuff’.  I wanted to let her know that I’d thought about her, and prayed for whatever sort of healing one can get to in that sort of incomprehensible loss.  I wanted to let her know that the lousy, hurtful things that were said about her (like why did she leave the kids with ‘him’- as if she had any remote inkling that he was capable of such devastation) weren’t representative of everybody, or even most people.  Mostly, I’d want to let her know how indescribably sorry I was she had to go through that horror, and reach out to her- now that I’m an adult.

It’s been 35 years tomorrow.  I still remember how I found out as if it were yesterday.  I still have the newspaper articles somewhere, and that beloved photo on my dresser.   I don’t know how to ‘put this away’ for good- or if that’s even possible.  I do know that I wish the best for Ann,  wherever she is, and whatever her name is now…and that those lovely eternal kids have been able to rest in peace.

For those doing the searches about this, please leave a comment … I’d like to know where all of the searches are from, and what the connection and/or interest is.  I have more searches for the murders and Ann than any other blog topic I’ve written about.

Update:   Simon Peter Nelson died on June 18, 2017, awaiting the decision on his 19th parole request.   He died in St. John’s Hospital in Springfield, IL, having been moved there  5 days before his death.  The initial cause was “natural causes”.   I cried when I found out.   He caused SO much collateral damage when he CHOSE to kill his own children.  Every kid old enough to understand what had happened was afraid that mad parents kill kids.  I’ve thought of Ann so many times, and have had the photo of her and myself on my dresser for 39 years (and have no intention of moving it).   My prayers are with her tonight.   As they have been many nights over the decades.   I hope this gives her some type of ‘release’.  ❤ 

UPDATE:   I recently found out that Ann passed away from ovarian cancer in 2014.  She was still married to the same man- so for about 36 years, she was with someone she loved, from all info I have received.   I’m glad she was able to have some stability after such a horrifically chaotic event in 1978.   May she RIP.  ❤