Brain Dump… or Just Getting Weird

OK, for those who know me, the ‘getting weird’ part might be nothing newsworthy.  I go through times when I’m skating along fairly well with the medical stuff, and then something happens, which freaks me out because of the cancer history and neurological issues, and I get in a funk.  I’ve been having trouble swallowing consistently, and have finally asked for a referral to the ENT (should hear about an appointment time soon).  Raw carrots and medications get stuck regularly, and things like rice or dry chicken are sometimes downright scary.   I guess I’ll find out about that when I finally get to the appointment.

The continued atrophying of my thigh muscles is still an issue.  I do what I can to stretch, walk around the apartment, take out the trash, and do my own grocery shopping (very painful).  The days after my monthly grocery store trip are generally miserable- but I’m also not good at taking the pain meds.   I try to make them last, and since hydrocodone is now a Schedule II (and requires a paper prescription for each refill- no faxing from the pharmacy), it’s inconvenient and painful to go get them. But, I’m going to have to give up and just go get them.  My doc can give me two refills per trip- just all dated for different months – so have to be filled at spaced intervals.  And, I have to take them.  I’m meticulous with other meds- but the pain meds hit me the wrong way- like I just need to buck up and get a grip.  That doesn’t work well when I’m lightheaded from the pain.

My blood pressure is also shifting (going low), so that is a problem.  I’m adjusting the meds for that.   I’m requiring less insulin, which is good- but sort of trial and error as I readjust the dose.  None of these things are any big deal… but sometimes the pile-up of several things is exhausting.  I’ve also lost a little weight (about 25 pounds from highest chemo weight; 14 since March 1st )- so that’s good, but still trying to shed more.  But I bailed out of Nutrisystem.  It was getting too focused on numbers, and my history doesn’t bode well with compulsive number calculations.  I get back into thinking about how much easier it is to lose weight when I’m NOT following some relatively rigid rules.  I think it’s a good program, but NOT for someone with a history of eating disorders.  I could feel those old patterns swinging from the rafters of my brain.

Then I look at the world at large, and the horrible things people do to each other.  I’m not going to go into specifics, since I’ll just get upset.   When I see tragedy on TV, I just want to reach through the screen and wrap my arms around those who are suffering.  SO, I pick and choose what I watch anymore. Tonight I had the weather on, as we were having severe storms again, and more tornadoes hit the area.  We had an EF-4 come through on April 9th that really tore up one whole town, and heavily damaged another subdivision.  Tonight, a 6,200 ‘lot’ camping ground was hit.  They’re still looking for people as I write this.  The other towns hit in April haven’t got their lives back together, and now some folks 10-12 miles away are looking for their lives, that are scattered around the neighborhood.  As of now, they know of 5 who are injured, and trapped  by flood waters.  But they haven’t accounted for everyone yet.

The shooting in South Carolina was an abhorrent act- and the congregation of that church are amazing examples of how NOT to hate back.  Truly inspirational people, and all before a week has gone by since nine of their friends and family were mowed down.

My brain is tired.  My limited ability to DO anything to help is so frustrating  (I can’t be outside in this weather because of the heat intolerance).    And yet, I have SO MUCH to be thankful for- and I do realize that.  I’m very blessed in so many ways.    Today, I got something I’d wanted to try for a while – Mexican street tacos- they were outstanding, and a real treat since I don’t leave home more than 2-3 times a month for groceries and MD appointments.  This did make me happy today 🙂  They were so good.

Street Tacos with steak, pork, and beef tongue (which was like pot roast)

Street Tacos with steak, pork, and beef tongue (which was like pot roast)

Sometimes, I just need to blow off steam 🙂

Sometimes Being Homebound and Isolated is Really Hard

Considering what has gone on with three people who have been very important in my life this year (they died), I have to know that I’m very fortunate.  Two had battles with horrible cancers between 9 and 10 months long, and one had a sudden collapse with an aortic dissection, but lived two more days…. she had been over a few weeks earlier talking about limited time. Maybe she know something was up, or was just being realistic that at 89 years old, she wanted to get things in order.   We had a really nice visit that I’m so thankful for.  The one who had the 9 month battle with colon cancer is a cousin I had a lot of  phone and e-mail contact with during her horrific struggle.  The other was my dad’s lady friend from church;she and  his first cousin (with the aortic dissection) had services last week.  I wasn’t able to go to either, but did at least meet the lady friend’s family, who I’d heard about for years, and felt a need to pay respects to them; we’d all heard about each other for years. I couldn’t stay long, but at least I popped in after the service for a few minutes.  I will miss them especially during the holidays, but also in general, as they were either family, or just about, as she and dad were buddies for church dinners, going out with friends, etc.

Overall, I really do realize how fortunate I am, but I don’t have many perky days when all is sunny and wonderful. There are some times when I just get overwhelmed when I think about what I used to be like.  Other days, I do my best to get by, and I do still have a lot that I enjoy from home. I still get to help out family and friends with medical  questions/translations- and I’m very glad to do that.  It helps me feel useful in some way.  And I get rather nostalgic about the days when I was working 3 12-hour shifts a week as a charge nurse in some sort of facility (hospital, drug/alcohol rehab, adolescent psych), or the Monday-Friday desk jobs entering assessment data into the computer for Medicare reimbursement and/or care planning for skilled nursing facilities.  I also did some stints on neuro floors, head injury rehab, and pediatrics- so a greatly varied career that I miss.  A great thing about nursing, especially in Central, rural Texas between 1985 – 2002, is that when I’d get bored with something, I had no problem finding another job within days.  Sometimes the offers were waiting for me on my answering machine when I got home from the interview.  Being an ADN, and not having a 4-year degree was never an issue, either as a staff nurse, charge nurse, weekend supervisor (only RN in the building/facility), or department head.  I was lucky to graduate from nursing school in 1985 when we were expected to know how to do procedures and skills, or we didn’t graduate.

Then came disability in 2004.  I fought through 8 years (starting in Texas) of trying different medications to regulate the fainting and weird episodes where I turn beet red, then a bluish red, before becoming pale and cold like a corpse. For eight years, I muddled through, and even had several decent years after the neurologist down there wanted to try an off-label medication.  By the time I was told I was no longer OK to work (by my boss in IL in 2004), it crushed me.  My identity had always been as an RN.  I didn’t have a husband or kids, so no other roles.  My relationships were all with co-workers in Texas ( even though I’d moved back to Illinois, where I was basically thrown away- nobody returned calls, and one former coworker went out of her way to avoid me at the grocery store).  I’d gotten sick- I hadn’t embezzled anything !  I guess it’s a Yankee thing. :/

That started some very chaotic years of figuring out what meds would help with the worsening symptoms (fainting more often, with some injuries including a concussion, and torn meniscus on my right knee requiring a knee replacement, some very strange medication interactions that caused a small stroke, many blood clots in my right lung, and ultimately leukemia (AML, subtype 3, or APL) which required chemo that worsened the autonomic disorder with thigh atrophy and increased sensitivity to heat).  I was a ‘regular’ at one of the ERs early on, and they treated me like trash.  Had I not gone to a decent ER with the blood clots in my lungs, I likely would have died – they were numerous in all three lobes of my right lung and pulmonary artery, and in various acute, subacute, and chronic stages.  The apex of my heart had pressure against it from my lung pushing into it.  It was bad. I only went to the hospital because I thought I was having a heart attack.

I’ve been essentially homebound for ten years.  I’m not sure that many people really understand what that means when “friends” here (coworkers) disappeared as soon as I left the parking lot on my last day.  I do have my dad, and a couple of friends here- one in particular makes an effort to come over periodically, and has done a LOT of work helping me get things organized so that I can get “stuff” minimized around here. She has been incredibly helpful once we found each other again on FB a few years ago.  I have been invited to family holiday parties- which I can attend one of, after everyone eats, since hot food in close proximity to body heat of other people is a problem- so I go when I’m less likely to stick out as being totally weird.  I really like that family bunch, and I hope I don’t come across as not liking them.  I just can’t tolerate a room over 66 degrees.

There are days when I don’t hear another human voice other than my dad (who is 82 and healthy, so I’m very thankful for that). We try to do daily “attendance” checks with each other, and he is really a huge asset in my life for many reasons… he always has my back.  I know he will never give me bad advice.   I might not see another human more than once a week (again, dad) for a few weeks at a time.  The phone rarely rings… usually it’s dad, my birth mom, or a reminder for  a doctors’ appointment or test (this week it’s an abdominal/pelvic CT for some intense bloating likely related to the autonomic problem).  Facebook is my primary form of contact, and I’m incredibly grateful for that; prior to getting this laptop from my birth mom and cousin, I was even more alone… now I can at least keep up with people I’ve known for years, whether from work, family, or childhood.   I challenge anyone to unplug the phone, have nobody show up at their door, and not hear another live voice in person for days (and occasionally weeks) at a time. It takes getting used to- and even now, it’s still hard.

I miss seeing co-workers and patients.  I miss being able to just go out and do something social without having to deal with the logistics of cooling vest equipment, distance from home, how I’m going to get there, can I leave if I need to, etc.  There are no ‘going out to lunch’ days (who would I go with?).  My dad is the one I go places with on the days when I can go (and I know I’m the most undependable ‘date’ with frequent last minute cancellations because of symptoms of some sort).  He knows that when my cheeks turn a deep bluish-red that it’s time to go.  And he’s always willing to take me anywhere.

People don’t understand that I can’t unload the dishwasher and fold laundry in the same day, or I end up with spasms from the base of my skull to my lower back, and am useless for a day or two.  Chronic pain isn’t ‘seen’.  Fibromyalgia and degenerative disc disease are chronic and  the DDD, will get worse (degenerative is a clue)- so I pace what I do as much as possible.  I miss the days when I’d set my mind to doing something around my apartment, and not stop until it was done.  That’s long gone.  I ‘look OK’, so I’m not sure people understand that I really am doing the best I can.  I live independently (getting many things delivered to my apartment from Schwan’s- frozen foods, Amazon, and Walmart).  I go to the store about once a month… maybe twice if it’s a good week about halfway between disability checks.   I still want to do as much as I can myself, so I don’t lose any more muscle mass.  The initial chemo took up about 20 pounds of muscle, and then the neuropathy in my thighs took much more – while I gained weight on chemo (not easy for my head to deal with, or to get rid of the poundage).

I’ve written about the expenses of Medicare and medications not covered in other posts. Buying insulin from a part D plan guarantees that anyone on it will go into the dreaded ‘donut hole’ where meds are NOT covered by the Medicare drug plans.  Most diabetics are on several medications.  The donut hole is dangerous.   The ‘good’ insulin is upwards of $200 per vial….between the two types of insulin I use , if I got it from the part D company, that would be $600 a month just for that- minimum… Thank God for the  cheap stuff from Walmart; I’d be sunk without it.  I don’t understand why insulin (the better stuff ) – a drug that is absolutely necessary for many diabetics- is so  unattainable.   I worry about this sort of stuff…

But mostly, I miss the things that I used to take for granted… seeing coworkers, having daily contact with other humans, having a purpose that felt like ‘me’ (being an RN), and not having to plan for every contingency every time I leave the apartment, even if it’s only for an hour.   My short term memory and word-finding are still not back to normal after chemo.   Going to the store for fresh produce every week has been long gone.  I might figure out something with dad, to go with him a couple of times  a week to get fresh fruit and veggies.

I really do have a LOT to be thankful for.  I have survived a lot.  During my 55 year old cousin’s final weeks, she weakly asked why I was allowed to live and she wasn’t- not in a nasty way, but in a tone that just sounded like she was trying to make sense of things.   I don’t know.  I know I must have some reason to still be here.  I hope I can make a difference somehow.  The blog helps… I keep track of my stats, and more than 100 countries have hit more than 16, 000 times.  At least people know I’m still here… that and Facebook. And my dad and a couple of people I see every month or two.  That they take time out of their busy lives (and they are busy !!) means a lot.

I’ve got God, my dad, my birth mom, folks on FB, and my dog- who is my main companion and pretty good at it 🙂   So, even though I miss what my life was, I’m at least alive, and still able to live alone, and figure out how to get things I need.   I truly am thankful for that. I know that there are others out there who struggle a lot more.  I remember those people I used to take care of that were never going to live on their own again.  I don’t know where the dysautonomia, diabetes, degenerative disc disease, degenerative  joint disease, or lung scars from the clots are going to lead me… but I’m sure I’ll figure it out.  I always seem to land on my feet 😉

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.  ❤

Cancer’s New Normal

When I was going through the initial induction chemotherapy after being told I had AML/subtype M-3 or APL (acute promyelocytic leukemia), I just sort of went with the flow. My emotions were blunted- partly from fatigue, and partly from not really having the time to wrap my head around the idea of cancer before chemo started.  I was admitted from the ER after having some shortness of breath, and didn’t leave for 6 weeks.  I did have some warning that something was wrong, but I didn’t know what until I was admitted to the hospital oncology floor, and the bone marrow biopsy was done.  It was a whirlwind of life changing forever.  And yet, I’m very lucky.

I’ve written about Jeannie Hayes (the local NBC affiliate anchorwoman) who had 2 days between diagnosis and death. This week a friend of mine had a nephew who was OK on Thanksgiving, felt a little bad over the weekend, and then went from the local ER to being life-flighted to a children’s hospital; he was in a coma by the time he got there…and died the next morning. He was 11 years old.  The information I’ve got tells me it is the same thing… APL.  Nobody had a chance to even get used to the idea of cancer before they were making funeral arrangements.  That’s two families (and their friends) who had their lives changed forever from a disease they barely had time to learn how to pronounce.  Two people in the last month who died within 2 days of diagnosis, from the same thing that I survived.  It’s shaken me up a bit…. I feel so badly for those families, especially since APL is one of the most curable leukemias if its caught early enough.  Mine was caught purely by ‘accident’ with annual diabetic lab work.  I had no symptoms telling me to get checked out.

I never spent much time before now looking at how fortunate I really am.  It was simply what was happening, and I had to deal with it. But now, I’m gaining a whole different perspective on what very easily could have been the end of me.  The average survival from the onset of the disease and death (for those who are undiagnosed/untreated) is about a month.  Many people are diagnosed during autopsy. It’s that fast.  I didn’t get in to see an oncologist for 2 weeks after that bad lab work, and that was because someone else cancelled- I had originally been put off for over a month. I’d seen my lab work. I knew I needed to get seen, so I had my doc make a call and get me in sooner.  Then there was the delay of another week for the bone marrow biopsy.  I didn’t make it that long before I went to the ER with breathing problems.

My chemo lasted for a total of 19 months, with the IV stuff in the hospital, IV stuff (arsenic) as an outpatient on telemetry in the oncology unit, and then a year of ATRA  (all trans retinoic acid- think jacked up vitamin A), methotrexate, and M6 mercaptopurine- all pills. They have all had effects that have lasted longer than actually taking them.  My blood sugars are just now getting back into some decent range (I’ve been off of all chemo for 14 months). My weight is horrible (I gained a lot). And my skin is still kind of weird. BUT, I’ve been in remission since the end of induction.  NO relapses.  I’ve had a few annoying things (shingles, infected bug bites on my face- or that’s the guess, etc) that delayed things a few times. The muscle and joint pain towards the end of the year on oral meds was pretty brutal, but if it meant I’d survive, I could put up with it.  I actually got out of the whole thing fairly unscathed.

Now comes the rest of my life, when any little bump in the road health-wise has my cancer radar spinning like an EF-5 tornado.  I’ve got a bunch of other things going on with my health, so I’m never sure when I should pay attention to something, or when it’s just my life as I know it with a little hiccup. Last spring, I had a mammogram, MRI of my brain, colonoscopy, upper endoscopy (EGD), skin exam and biopsy, and yearly (ha !!) girly exams.  They all came out fine, for which I’m very thankful.  I’m waiting to feel relieved and like I’m really going to be OK for the long haul.  The official ‘5-year mark’ doesn’t hit until April of 2015.

And I’m not sure that’s going to make me feel really in the clear.  I watched my mom have bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- and then chemo and radiation. The radiation to the brain left her with dementia for most of the 17 years she lived without additional cancer.  Every time, they said they ‘got it all’… is that even possible to say with complete certainty?  I don’t mean to sound like a total buzz kill for those doing well- not at all.  I’m a nurse. I’ve taken care of metastatic cancer patients, and seen them go through hell.  I just need to work out in my own head when to have things checked out.  And how to feel it’s OK to expect a future (disabled as I was before the leukemia).  And when to relax a bit.

I don’t have anything that’s bugging me in a suspicious way- I’ve just never dealt with the cancer to begin with. I put on a smile, drove myself to every one of 50 doses of arsenic, and the weekend Neupogen/Neulasta shots (to boost white cells), showed up for my appointments on my own (even the bone marrow biopsies- drove myself home 20 minutes after they were done), and never really thought about how close I came to being six feet under.  I absolutely understand that my prognosis is excellent. My most recent genetic marker studies were perfect. NO sign of the translocation of chromosomes 15 and 17.  I’ve been rearranged back into the right genetic sequence (how weird is that? !).  I’m a survivor.  I’m doing well- I get it… and I understand cancer isn’t a predictable disease.  I feel a sense of responsibility to have my apartment set up as simply as possible, clear out some clutter, and be prepared for anything that I can, to ensure that I can live independently as long as possible.  That may be another 30 years with nothing else mucking things up.  That’s the ‘plan’…but cancer doesn’t respect plans.

This all sounds so much more depressing than I really feel- to me it’s just reality.  I need to be as prepared as I can be, while not being tied to a diagnosis that has pretty well been treated. Relapse can still happen, but my new oncologist is checking genetic markers often.  He encourages patients to get things checked out if there’s any question.  He ‘gets’ the emotional component of having the ‘big C’ and knowing that it’s a mind warp for a while.

The news anchor and now the 11 year old have opened my eyes up to how blessed I am to still be here to even be a bit freaked out by their deaths.  I can’t imagine the pain their families’ are going through. No warning.  My prayers go out to them.

I need to figure out how to live better within my physical limitations. I’m still very fortunate.  Now just to stop being a bit scared.  A lot.

A Summary Of High School

I’ve been thinking about this on and off, and I’m sure there’s more rattling around in my thick skull than I can fit in one ‘basic’ length blog, so I’ll start with the basics !  I went to a school that was, at the time, a school where over %70 of the kids went on to college. (Now it’s a pit, from what I’ve heard). There were many opportunities for advanced placement classes, and because of the number of kids in school, a very long 10-period day to ensure all kids had the chance to get the minimum 5 classes in each day- at least during my first two years- then I think it dropped to 8 periods in a day and I was expected to keep busy in all of them to get ahead. My dad was the principal of that high school. That wasn’t so bad on some levels (ride to school each day, didn’t have to carry my books home on foot, there if I needed lunch money), but on the other hand, I never knew who actually wanted to be my friend, or just wanted to get some message to my dad. I’ve got yearbook signings that tell me to “tell your dad….”.  That was never received well. My suggestion to those folks was to go talk to him themselves.

My freshmen year, a couple of things stand out.  I started that year when I was 13 years old. I was always younger, as my birthday is in November. I was used to that. The second thing that happened that year was the murder of my figure skating coaches’ six children by her husband on January 7, 1978 (Google: Simon Peter Nelson).  I had no way of knowing how to cope, and the overall message of that whole thing was if parents get mad at each other, kids can die.  I’ve never stopped wondering how my coach managed to carry on with life. I saw her a few times after that when she returned to the rink; then she sort of disappeared months later. Word had it that she’d changed her name and moved away.  I could understand her needing to leave, but I was a young teenager, and really felt connected to this coach. She’d call me when I was babysitting one of my ‘regular’ kids to see if I was ok. On the ice, she’d joke around and show me adult attention that my mom wasn’t capable of doing. She was a role model. I missed her deeply. I had absolutely no life skills to help me cope with all of that, and didn’t know where to go for help.

Another part of my freshmen year involved the residual effects of a couple of bad concussions I’d gotten in eighth grade. I’d fallen off of the uneven parallel bars early in the year, and in the spring, during rehearsal for a skating show, I landed hard on the ice…that one was bad. I’d landed directly on my head- no ‘butt’ hitting first, from what I was told. My folks were in Brazil, and I refused to give the people at the rink my grandparents’ phone number (grandma would have been hysterical worrying).  Anyway, I’d begun having some nasty headaches, and what have since been diagnosed as complex partial seizures. But at the time, the testing available didn’t show anything wrong, so I was told to quit complaining. So I just shut up, but still hurt, and I was still having times when I felt spacey.  I felt completely misunderstood. And alone.

My sophomore year was relatively mellow.  I did meet the first guy I dated for any length of time, and had a lot of fun when I was out with him. We spent time on the phone in the evenings, and most of our dates involved doing outdoor sports. He also taught me to drive his Audi Fox in his church parking lot.  We’re still in contact, thanks to reconnecting on FaceBook. My grades that year weren’t too bad.  I had started dabbling with over the counter cold medications to numb the pain from the murders, and my chronic headaches.  If I looked spacey, chances are I was taking very legal, unsuspected drugs. I had also been told  I no longer liked skating…really?  I LOVED skating- but that was the way I was told that lessons were over.  I later found out that my coach and another person at the rink had approached my mom about intensifying training to get into the national competition circuit.  I would have moved into the rink if someone would have allowed it.  Another loss.

Junior year was a train wreck.  I was taking over the counter medications fairly regularly. Babysitting money bought them, and since they were legal, nobody thought to ask about them. Plus, I was known as a ‘good’ kid.  I was still not doing well in dealing with the murders, and then my grandmother died in October. She’d been sick for about nine months, and happened to die when my folks were in Florida looking for a winter condo. My other grandparents were staying with me when I got the call at school  to call my uncle at my grandfather’s house before I left school. That was kind of weird, but I complied, and was given the news over the phone in my dad’s office. The assistant principal (and a friend of dad’s) saw me, and drove me home.  I got on my bike and took off for a while. I just wanted to be away from pretty much everyone. This was the grandma that I’d stayed with for 1-2 weekend nights each month since I was a baby, and most Christmas and Easter vacations when my folks travelled during elementary and junior high school years.  My grades weren’t good after that, and since dad got my report cards before I did, there was no minimizing the damage. I was miserable.

That year, I’d started with 8 full periods of classes because of drivers’ ed (no lunch break- my mom always thought that missing meals wouldn’t kill me).  One of the English teachers who had hall patrol on the hall where my locker was knew I didn’t look good, and did a depression screening. I flunked. She went to my guidance counsellor, who went to dad.   I was allowed to drop physics, since I had to get my drivers’ license, and had my science requirements done.  I got in trouble for complaining to the teacher… I hadn’t approached her. She had approached me.  I knew to keep my mouth shut about how I felt about anything. That had been made very clear.  I didn’t have anything dreadful to say, but  I was told that because of dad’s job, things could be taken out of context, and that could be bad. So, I shut up as best I could. The depression didn’t really go away, but at least having a lunch break helped with the exhaustion, which did help overall.  Since I had to drop physics in order to be able to function that year, the plan to graduate a year early was screwed up. I’d taken US History (gag) during summer school to get it out of the way- now it was just a wasted summer.

Senior ‘year’ was just more time to be served before getting released early for good behavior.  I finally got out of there at the end of that first semester.  A week later, I was sitting in classes at the community college.  They were basically time-killing classes- philosophy and more of the hated US History. I was headed to the University of Illinois in the fall; the credits would transfer.   I also worked part time at a dollhouse and gift store- that was fun.  I’d given up the over the counter medications. They hadn’t done anything for me, and I was too chicken to try the ‘real’ stuff. I was doing better, but not enjoying much.

During the time in high school, I’d been involved in various clubs- creative writing, American Field Services (foreign exchange student sponsors), track for a brief time until I was asked to run during a meet- I was afraid I’d fail, so quit, and I think that’s it.  I was involved in any foreign language trips that were offered (usually to the Milwaukee -Wisconsin- annual ethnic festival…those were fun)…otherwise, my time was spent babysitting, and going to church activities and choir practices.  I did have a few friends from school with whom I did some things outside of school, but most of my ‘social’ friends were from church.

I did NOT want to go to the graduation ceremony, but wasn’t given a choice. I hadn’t been in class for 4 1/2 months, and life had moved on, but I had to go. My dad handed me my diploma, which was sweet, and there were a lot of cheers and clapping during that moment (now, I appreciate that much more than I did then). At the time, I was just glad it was over.  I think that the murders and my grandma’s death probably had a whole lot to do with why I was so NOT amused by high school.  Nobody really gave me a bad time about being the principal’s kid (aside from the message requests, and those were from people who wrote them in my  yearbook, not talking to me face-to-face). The teachers were OK- nobody treated me any differently, which would have been a nightmare.  I’m still in contact with my Algebra and Geometry teacher.  We’ve stayed in contact over the years.

I hear about how high school is supposed to be the best years of someone’s life.  I hated it.  I’m liking each ‘new’ decade much more than the last one. I’m so glad there isn’t some high school equivalent later in life. I’d drop out.  I’m not a social person. I hate the fake interactions.  I much preferred working my butt off as an RN for the 20 years I was able to work.  Doing something for someone who is going through a rotten time is much more fulfilling than anything in high school was. At least in my experience. I’m glad there are folks out there who enjoyed their high school years.  God blessed you 🙂

Driving Ms. Hazy

Very bad memories of nearly passing out in the drivers seat. While the car was moving. Limitations with sitting upright (and not moving around) for any length of time. Abnormal heart rates as a result of being in one position. Being confined to a sitting position with no chance to take ‘vertical’ breaks. Many, many episodes of actually losing consciousness because of the dysautonomia (dysfunction of the part of my brain that regulates involuntary bodily responses- blood pressure, heart rate, breathing, temperature control, etc.). While I’ve never passed out in the car, the times I’ve bitten the floor on solid ground are literally too many to count. (I don’t count well when I’m not conscious).  Having driven myself more than 5 miles one-way only one time in over 6 years.  Not exactly great associations with driving my car.

But I want to go to a celebration of a friend’s life at the end of this month. I want to be there. She died one week ago today, and the celebration is going to be about all of the good she contributed to the lives of thousands of kids and adults during her ministry at several places. For me, it’s mostly about a wonderful camp I attended as a kid, and then worked at during the summers of 1980, 1981, and half of 1982.  She was a major part of the camp being my spiritual home, then and now.  I want to be with others who are going to celebrate her life. It’s going to be a wonderfully positive gathering.

Yet I’m  quite nervous about driving the 50 miles, give or take, one-way, in order to be there.  I know that I have enough ‘warning’ when my body starts to act in weird ways that signal I’m in trouble and need to pull over. I know that the worst thing that can happen is that I’ll need to put the car seat back, so I can get the blood moving into  my head. I know that I’ve got my cell phone if I should get into major trouble. I know I’ve got my ‘as needed’ medications for many possible problems,  and assorted equipment to prevent getting overheated.  I know that I generally pack enough stuff to prevent or take care of  just about any medical condition known to exist, for the entire population of a small third world country.  I know that I’ve survived up to this point, and that the vast majority of things people worry about never happen.  In my head I know these things…my heart hasn’t caught up.

I know that God won’t abandon me, and that there is comfort in His presence. I know that this celebration is mostly gratitude about how He used this wonderful woman to extend His love for more than 40 years to so many kids. I know that I can do all things through Christ, who gives me strength (Philippians 4:13).  I do believe that, and so I will go.  And I will still  be prepared for anything that could come up. That’s not a lack of faith, that’s common sense and being responsible. And I will ask God to knock a knot in my head when I get panicky, and bring me back to reality.

Sometimes I need to remember that I drove a 17 foot U-Haul  (total of 23 feet of truck including the cab) from deep in the heart of Texas back to my childhood home near Chicago, with only my dog- so no relief driver.  I had been diagnosed with the dysautonomia prior to that trip, and while I was much more stable then, there were still  risks, but I  made it in two days with no disasters.  Well, I did wipe out part of a McDonald’s drive-thru sign somewhere in Oklahoma, but the insurance took care of that- at least on the truck. 🙂  I need to remember all of the ‘day trips’ around central Texas that I used to take, with my camera and a ‘let’s go’ attitude.  Granted, I was healthier, but my driving skills are solid, and actually a little bit of ‘old fart’ in their adventurousness. Even my 80 year old dad will pull out on the road before I will if making a left turn onto a street without traffic lights.  I’m not a risky driver.  I’m a wuss.  So, I should be just fine.

Between now and then, I’ll get my stuff ready- ice vest, ice vest inserts, ice bandana ice packs, diabetic supply kit with insulin, any ‘as needed’ medicines for a variety of potential issues, a couple of bottles of water, a bottle of Coca Cola for any potential low blood sugar problems, insulated bag and ice packs for all of the cold stuff, wheeled walker with the seat, ad nauseum… I figure the car can serve as a tent if I get stuck somewhere, but I’ve also got a gizmo that will jump my battery if it dies out, so I’ve got that covered, too.   I have to get home in time for  my dog’s heart failure medicine; motivation to make this all go smoothly.

I’ll be so glad I decided to go to the celebration of her life.  She continues to be a role model for reaching out and grabbing opportunities to ‘be able’, and not live in a disabled world.  She continues to encourage me with my memories of her life.  The least I can do is show up to celebrate her. ❤

 

Fragility and Resilience

There are just some people in life that ‘stick’ in memories.  Even after decades of no contact, and then with a reconnection on FaceBook, they bring back all of the good stuff that they’re associated with. Not just a fun afternoon, but the totality of the experience they were a part of years ago.  For me, that was an incredible experience as a camper and then a summer staff member for a total of 10 years at Timber-lee Christian Center in East Troy, Wisconsin (USA). Even though I went to a ‘solid’ church as a kid, Timber-lee has always been my spiritual foundation. People there live what they believe. It’s not lip service, and it’s not ‘on’ when people are watching only to be turned off when the kids leave. It’s legit.  It was 24/7 immersion in Christianity that was good.  Not the negative stuff that can be associated with Christians, but an authenticity that is hard to find. I couldn’t get enough of the place, and wanted to live there permanently (they didn’t have any openings for full-time campers…).

One of the people I first met when I was 8 years old became very ill this week, and her heart stopped. She was somewhere that provided her with near immediate CPR, and EMS was called. They got her heart restarted, and the ER she was taken to figured out the problem and opted for induced hypothermia (dropping her body temperature) and a coma to minimize any neurological complications (that nobody hears about with CPR). It’s assumed by most non-medical people that when the heart is restarted, all is well. That is the outcome in a very few cases.  Recovery is a process- not an event.

A couple of things have stood out in the four days since this happened.  First, I have learned an entirely different level of prayer.  I’ve prayed as long as I can remember, but I’m not sure that I’ve ever had someone come to mind as often as this incredible woman has, or that I’ve actually pleaded to God on behalf of someone else. I’ve prayed for healing for other people, but this has been different.   My sincerity in the past has been just as strong, and I’m not sure that I can really describe how this is different. It just is.

Second, I’m realizing how important those years at Timber-lee have been.  I’ve always been so thankful for the experiences I had there- whether the week long  sessions as a camper, or the 3 month sessions on the summer staff for 2 1/2 summers.  The people I met there are entwined with the experience.  They can’t be separated, and that’s  wonderful.  When I think of one, I’m flooded with the memories of the other.  It’s a package deal.  The feelings of safety, love, fellowship, and acceptance have never been replicated. Ever.

The fragility of life smacked me in the face four days ago (as it did much more so for those who are closer- her husband, and friends and family).  The experiences at camp have been my ‘go to’ memories to ferret out good days when I was going through rough times.  This week, there is part of that whole picture that is in trouble.  The reports come in daily, and I can’t get to them fast enough. I spread them to other pages where people are waiting for news. And we’re all praying.  There is hope.

I’m not sure I’m explaining myself all that well.  I’m  a bit overwhelmed, and in some ways I don’t feel entitled to that level of emotion, as we didn’t have contact for so long.  But it’s Timber-lee and one of the handful of people that has had an impact on me since 1972.  I even wrote a ‘report’ about my first week at camp when I was 8 years old, and she is in that ‘report’.  I got to see her in July, and it was so great to be back at the camp and see people who made it what it has been in my life.  And now she’s in a coma.

As a nurse, I know the possible outcomes. I worked in a coma stimulation unit at a brain injury rehab center many years ago. I saw some horribly sad situations. But I also saw some amazing stories and recoveries.  The people I took care of had been in comas for many weeks to months before they started showing signs of improvement, and the injuries were often because of external trauma (accidents). The damage had been more extensive, and intense. They started out in much worse shape, at least structurally; many had parts of their brains or skulls removed because of the damage.   My friend has already been reacting well to commands, and her reflexes are good. That gives me much hope for her outcome. Yet, I also know that there are no guarantees.  SO, while I’m thrilled every day with the updates, I hold back because of what I know and have seen. And yet, to the part of me that is still seeing Timber-lee as only existing with the people I knew there still like they were, I can’t allow myself to accept anything less than a full  recovery.  And that’s what I pray for, as do many, many others.  This woman is cherished.

I guess when I remember Timber-lee, I’m transported in time to the age I was then, and the feelings I remember when I was there.  It’s technically just a ‘place’…but it was much more than that to me.  I saw how Christians live in a way that I wanted to emulate.  When I’ve been in situations that were literally life-threatening, my first thoughts  often go back to something from camp.  That’s my feel-good place. It’s where I felt the most freedom to be who I really was during that time in my life.  And, I learned so much from the people I met there- either as a camper or on staff.  It also played a role in why I became an RN.

My friend who is sick is one of those examples of being a Christian that has been a role model, even in the 30 years we had no contact.  Her life has had an impact on tens of thousands of lives as she’s worked at the camp for decades. When I’ve thought of her over the years, I smiled.  When I hear music that she taught the music groups, or camp songs we sang, I smile.  When we’ve had FaceBook contact, I smile.  She’s a ‘feel good’ person.  That’s a quality I respect and admire so much. And she’s a very solid Christian, in ways that encourage and inspire- not judge or demean.

So, this is a hodgepodge of words that may not make sense.  That’s OK.  I just needed to write this.  I’m praying that her recovery exceeds expectations, and she can resume her life with this being just a blip in the totality of her life.  I can’t express what Timber-lee and the people I associate with it really mean to me. It goes beyond just a ‘place’.  The experiences were  heaven-blessed.  So many times the good I got from there helped  get me through some really lousy stuff. I can’t really explain that either, except to say that I felt that the God I saw in the people I met there was more real to me because of having been there.  Maybe that’s it- they showed me God.  They made Him more real.  I knew about God from the time I was very young, and believed in Jesus as a young elementary school kid…but I met Him at Timber-lee, through people like this friend who now needs Him to surround her with healing and restoration.

This one’s for you, MK.