In Memory of Madeline Spenrath, R.N.

I just found out on Thursday, April 25, 2013 that one of my favorite nursing supervisors had died.  I’d talked to her several times over the last few years when we were both going through various cancer diagnoses, but hadn’t talked to her in a while.  She had been through breast cancer, and thought she was doing well when she discovered she had bone cancer in her thigh and had to have an amputation at the hip (around 2010).  She went through that with a great deal of grace and dignity.  I’m told that she had recurrence of cancer in her lung and spine.  I can’t imagine what that was like for her. Getting used to her leg prosthesis and wheel chair were hard enough; the leg prosthesis drove her nuts.  She was incredibly independent, and needing help didn’t make her smile.  I can just hear her saying “when I go, just toss me out into the pasture with the horses”.  Down to earth, no frills, and knew SO much about nursing.  I will always have a great deal of respect for her.

Madeline  was a no- nonsense supervisor, but also had a heart of gold. I first met her in in  1991, and while there are many people who knew her much better than I did, she left a definite impact on me, for the better.  I worked at Sid Peterson Memorial Hospital in Kerrville, TX on and off for over 10 years.  Madeline had been there much, much longer, and was a ‘staple’ supervisor on the night shift.   She had her own way of getting report on every patient in the hospital for the next shift’s supervisor (or ‘Number 9’, as they were called at Sid Pete, at least at that time). Some supervisors wanted report from each nurse- Madeline wanted the charge nurse to give the run-down.  SO, I talked to her a lot.  She wanted ‘just the facts’, but also had a really good sense of humor, and if a patient needed something, and she could do it, she’d give it her all.

Madeline could get IVs in just about anybody.  Generally, if someone needed an IV started or restarted, the direct care nurse or charge nurses would get them in.  If that didn’t work- or if someone’s veins were just too puny to go poking around when it didn’t make sense, the charge nurses would call Madeline (or whoever was the supervisor that night).  Madeline could get an IV in the butt vein of a grasshopper. In motion.  She was just that experienced and had all of the tricks down pat.

Madeline used to have incredible BBQs for the night shift staff. They were annual and legendary.  I got to go to one in 1991. She had them in the summer, and would have one of her horses saddled up for anybody who wanted to go for a ride around the farm in Comfort.  I still have a photo of me on one of her palomino horses, in my tennis shoes and t-shirt…. I looked SO not ‘Texas’.  But it was fun 🙂

When Coca-Cola changed their formula back in the 80s, Madeline rode her horse to the town store, and brought home as much of the original formula as she could secure to that horse!  I never heard that she ever smoked or had other vices- but don’t mess with her classic Coke !! 🙂

One night, Madeline called me about a predicament with staffing on the telemetry floor.  Uh oh.  Madeline could get me to agree to a lot of things that I’d normally freak out about (like charging two floors on nights when there were simply no other nurses to cover one of the floors- they were back to back units – 4A and 4B- so I just ran between the two that night; one was my usual floor, and I knew the other staff well enough).  The regular charge nurse on the telly floor had some emergent health situation happen, and they really needed a charge nurse.  I really didn’t read telemetry strips !  I knew ‘OK, looks survivable’ and ‘uh oh’. She reassured me that the monitor techs knew the rhythms and there were standing medication orders that the nurses knew about- I’d be fine. They just needed an RN body to check off orders and be physically present.  Scared the snot out of me, but I went.  Everybody survived the shift 🙂

She hated taking bodies to the morgue in the basement of the old hospital. Madeline would do anything she could for anybody in the hospital, but once she was notified of a death, she’d show up like the wind and drop off the keys to the morgue.  She wasn’t a fearful person but that morgue gave her the willies. I have to admit, it was creepy- it was a ‘one occupant’ room, with shelves along all available wall space that had the specimens from various surgeries… there were gallbladders, appendixes, lungs, and just about anything that could be removed from a body bobbing along in preservative liquid in semi-opaque plastic buckets. You could still tell they were guts.  Named, dated, and labelled.  The first time I went down there, I was very distraught.  I was still shaking the next day, and actually had to leave when I got to work (major chicken-poo reaction). Madeline was on that night, and while she wasn’t amused at me falling apart, she never made me feel ashamed of my reaction. Once I knew what I’d be seeing, I was able to go if I had to help take a body there.

When I was diagnosed with diabetes in 1995, I had just started working at SPMH again (and was diagnosed with diabetes through general pre-employment screenings)… one night I said I felt a little funny, and Madeline went bounding off to the cafeteria to get me a pimento cheese sandwich, in case my blood sugar was getting too low; I was still very early on in being treated, and could sometimes have symptoms even when numbers were decent- my body was just used to having much higher blood sugars.  Being diabetic wasn’t seen as a liability, and I had a great deal of support from Madeline and others there at SPMH.

When Madeline brought a meal for a patient admitted later in the evening or night, she’d bring back  a tray full of food fit for a football player…. her theory- never trust a skinny chef, and make sure they get enough food if they’re hungry.  Never knew when someone sick would either lose their appetite, or have the need for some energy stores.

Madeline loved her horses and cats.  She retired from nursing several years ago, and while she was dealing with a lot of health issues, she always talked about how she was doing with taking care of the horses and cats on her farm. She was deeply saddened when that palomino died… it was one of her favorite horses.  She also volunteered at the local VA hospital, and loved going out there.  She had passion about many things, and when Madeline took to something, she did it with a great deal of satisfaction- and she was good at it.

Madeline was a ‘giver’. I never heard her ask for anything for herself, even when she was going through so many life changes with her health.  When she’d call me, she’d sound upbeat- and she had so many reasons to be bummed.  She’d send funny e-mails, and periodic notes- and never complained.

When Madeline would hear of something just not sounding fair in regards to how someone was being treated after some management changes at the hospital, she felt so badly for them.  Madeline believed in people being accountable- but she also knew that sometimes people got a really raw deal… and it hurt her when they hurt.  One other supervisor comes to mind in regards to that.  We both deeply respected that other person.  Madeline didn’t always wear her emotions on her sleeve, but she was an incredibly caring person who wanted the best for those around her.   Sometimes there might be someone (usually someone who didn’t last long) who drove her a little nuts- but she was always fair if anything came up that involved her input with that person.

I’ve worked with some great people in the years I worked as an RN.  Madeline Spenrath is someone who I will never forget, and am forever grateful for things she taught me.  I became a better nurse and person for having known her.

For those who knew Madeline, and would like to leave a comment about your memories of her, please feel free to do so, and I’ll get them added to the comment section 🙂

The End of Life As I Knew It

Nine years ago, on April 6, 2004, life as I knew it stopped.  It was my last day working as a full time registered nurse because of medical disability. I tried to go back to work a few months later, but it was a total failure, even though I was working back into full time hours slowly. My body was broken.  There was nothing to do to fix it.  I entered a world I didn’t really  understand- that of being useless and having no obvious purpose. My life since the age of 21 had been about being an RN (I graduated from nursing school in May 1985).  I had worked so many overtime hours and holidays because I enjoyed working.  And then it was gone.

I’m not sure when the medical problems ‘officially’ started, but I know when they got bad.  About 5 months after moving back to the midwest from Texas, and being subjected to indoor heat, the symptoms of my dysautonomia became severe enough to cause me to start having heart rate and blood pressure episodes that made working impossible at times. Then, over the next 10-11 months, it got to the point  of being totally unable to work.  I’d pass out if I got overheated, and that didn’t have to be all that warm- most people found themselves comfortable when I was turning beet red and feeling like I was going to faint.  Then there were the seizures.  Later, it was discovered that they are more likely to start at the beginning of sleep cycles…but that could be at the beginning of blood sugar fatigue, as well as the deep sleep I’d end up in after one of the dysautonomia episodes. It was a mess to sort out.  My boss and co-workers told me what they’d seen, which helped the doctors at the time.

My employer had started sending me to the emergency room by ambulance when I was found unconscious or seen seizing or collapsing. I was a liability.  It got to be a routine occurrence.  I was sent out more than the elderly residents at the nursing home where I worked (like a dozen times in the last 2 months I was there).  I remember none of the ambulance trips, but I do remember a lot of abusive ER nurses and docs when I would ‘come to’, who thought I was a low-life ‘frequent flyer’. They never stopped to realize that I hadn’t sent myself to the ER- I’d been sent.  ER personnel like to fix things. I couldn’t be fixed, so they took it out on me with name calling and general ‘disgust’ when they interacted with me. There was a rare ‘nice’ doctor or nurse, but I began to dread waking up in the ER.  It got worse before it got better (I found a different ER).

Those initial months and then years of not working were really difficult. In addition to the neurological disorders, I was having drug interactions that dropped my blood pressure low enough to cause small strokes.  It wasn’t uncommon to have a blood pressure in the 40-50/20-30 range.  I was usually still conscious but definitely feeling very unwell.  It was scary.  I eventually figured out a way to put a thin feeding tube in my own nose to put Gatorade through, in order to increase my blood pressure with fluid volume.  It beat going to the ER.  There were also the times when the dysautonomia kicked in and my pulse and blood pressure would go nuts on their own.  I was so frustrated that I couldn’t just ‘make myself’ do things that used to be so normal.  Like work.  Or go out in public, where the thermostats were out of my control. Now, I’m pretty much homebound, aside from monthly trips to the grocery store or MD appointments. I have as much as possible delivered.  It’s just too painful and risky to do much away from home.

It took many years to work through the shock of being unable to work.  I kept thinking I just had to ‘make’ myself well enough.  But I was having trouble doing basic things around home.  My world shrunk to that of my apartment and the monthly trip to the grocery store, or doctors’ appointments.  At the time, I had nobody to socialize with; I had no friends here.  I also didn’t have online access to most people I’d known in Texas, and none with people here.  I had my dog- and she was so important. I also had regular contact with my dad. But nothing with anybody who understood being a nurse, or being disabled.

Things are getting progressively worse when it comes to ‘normal’ activities. I just took the trash to the dumpster (about 12-15 yards away), and am now in considerable pain.  Pain is a trigger for the dysautonomia (along with heat), so I need to get more comfortable to prevent my blood pressure from crashing.  It’s very frustrating to feel like such a ‘wimp’  with normal activities.  Making lunch is also painful.  I have ‘grab and go’ foods as much as possible.   When I have ‘good’ days, I’ll make tuna salad- and then hurt.  I keep trying to do things, and it’s harder and harder.  I don’t know what sort of future I’ll have.  I am trying to find ways just to  make things work here, so I don’t end up needing assisted living anytime soon.  I want to be independent. It’s hard to accept help.  I don’t want to be a ‘whiner’ or not do as much as I can… but when I do, I always end up in a lot of pain, and often pre-syncopal.  I turned the air conditioner on about a week ago, when the night temps were in the 20s, but daytime temps were over 40.  It’s a matter of just being able to survive being at home.

I think about my old life a lot.  I miss working as a nurse. I keep my license active so I don’t have to say I ‘was’ a nurse.  I still am a nurse- unable to work as one, but I’m still a ‘real’ nurse.  Many things have changed in the nine years I’ve been disabled. But there are core nursing things that I still remember. I remember some of the patients  I took care of, and many of the other nurses and personnel I worked with. Those are good memories.  I’m glad I have them.

To those who think it can never happen to them…. you never know what life is going to hand you, or what challenges may come  your way.  Get disability insurance whenever you can.  It can make the difference between living in a decent place, or barely making it at all.  Take time to enjoy things, and don’t work ALL the time.  Jump on all opportunities to experience all you can.  Don’t create regrets.  Do make time to nurture friendships that will last.  Don’t let horrible experiences create limitations that don’t have to be there.  Live as much as you can !

Dad Went To The Oncologist Today

Over the past few months, my 80-year old dad has been dealing with some health scares, starting with an egg-sized mass in his neck. Several weeks after it was found, he had surgery to remove it on November 30, 2012.  Surgery was considered very successful, as the surgeon was confident that the edges were all well encapsulated, and the mass had been completely removed. But they needed to figure out what had caused this thing. He hadn’t had any symptoms- it was found when he’d gone in for a routine exam to get his thyroid medicine refilled.  He had had two biopsies prior to surgery, and then the pathologist had the entire mass to dissect and tear up, and there was still no definitive answer as to the type of cancer this thing was. They knew it was an extremely low grade cancerous tumor that had actually replaced his thyroid tissue on the right side. They felt very certain that it wasn’t going to have any impact on his lifespan…but they still were not sure exactly what it was.  It had all of the characteristics of a ‘good’ cancer- but that’s about all they knew.

So, he was referred for a PET scan (fancy CT scan) and to an oncologist (who just happens to be the same oncologist I see- and like). I’ve gone to every appointment with dad (until today), since he’s not up on all of the medical terminology.  I’m quite comfortable with medical stuff, being an RN since 1985 and though I have been on disability since 2004, my own medical issues and cancer have kept me somewhat up to date on many things. And, I know how to use the search engines online 😀   I’ve been looking up everything that the docs have said, and I’ve been just as confused as dad.  I wanted to hear what the docs said, since dad calls me with questions, and I wanted to have the info as accurate as possible.  Sometimes dad’s translation of medical terms is a bit iffy !

At the first oncology appointment, the doc was very straightforward. They needed to rule out multiple myeloma. This is a cancer that dad has been terrified of since his mom died of it in a long, dreadful 9-month death back in 1979 at the age of 74.  I remember it fairly well (I was protected from some of the more sordid details- but I was 15 years old, and knew she was very sick), and knew she had been on dialysis 3 times a week during those months, had a horrible ‘quality’ of life, and had coded twice during dialysis.  Back then, they didn’t offer people hospice care like they do now. They went for the maximum treatment, even if they knew it was essentially pointless. Grandma went through hell, and dad remembers that very well.

At that first appointment with the oncologist, dad was told he’d need a bone marrow biopsy, as well as some other lab work.  Dad was offered the choice of doing the bone marrow biopsy then, or scheduling it for another day. I piped up and said he needed to do it then. He did NOT need to spend days worrying about it and imagining the procedure in his head (as he asked me about it, since I’ve had five of them).  The procedure does sound dreadful.  They drill a hole in the back of the pelvic bone to suck out bone marrow.  But, these days it’s much easier than the one I saw during nursing school.  That was the only thing that nearly dropped me to the floor in a dead faint during all of nursing school.  I don’t ‘do’ bone noise. But having them done, I learned that they aren’t that bad. I drove myself to and from three of them (the first two were done when I was in the hospital). So, dad got himself on the exam table, took some deep breaths, and had it done. He did extremely well, however, he didn’t really convince the nurse of his ability to drive home when he answered her with “well, I guess we’ll find out”.  Good one, dad.  We all felt so safe with that answer.

The oncologist also said during that first appointment that his PET scan did not show the usual ‘holes’ in the bones that someone who had multiple myeloma would likely have. And, dad hadn’t had any symptoms. This whole thing was sort of found by accident.  That was all good news. But, the bone marrow biopsy would say one way or another if he had multiple myeloma or any other bone cancer.  SO, after that appointment, there were about two weeks of waiting. He saw his surgeon last week and he felt that the results didn’t show MM- and could possibly be something so rare that he might write an article to be published on dad’s case.  There’s a possibility that this thing actually started as a couple of very slow growing cells transferred to him while he was still in his mother’s womb.  That sort of rare.

Today, I couldn’t go to the follow-up appointment to get the bone marrow biopsy and other lab work results.  I’ve got a nasty cold, and nobody in an oncology office with lousy immune systems needed my germs floating through the air.  Dad promised that he’d call me as soon as he got home, and he did. NO multiple myeloma. No chemo. No chance of that sort of agonizing death (though treatments and chemo are far different now than they were in 1979).  He does have to have some radiation, more as ‘housekeeping’ to be sure that if there are some stray cells they get nuked (the oncologist had mentioned the possibility of this at the first appointment). Dad will have some lines drawn on his neck so they know where to aim the radiation- so it will be visible that something is going on. Until now, I’ve been sworn to secrecy (well, that hasn’t actually been revoked).  But this is good news, and those radiation lines will be visible. People will know ‘something’ is going on.  And here’s the bottom line: dad is going to be OK.  This will not kill him.  🙂

As much as I love Texas and the 17 years I lived there, I’m so thankful to be here now for my dad.  I’m also thankful for the last 10 years that I’ve had to spend time with him. Though face-to-face contact is not as much as I’d like because of my own health issues, we do talk daily, even if he’s on vacation (well, those cruises and other international trips were some blips of time without daily contact, but I didn’t hear that any boats sunk, so I was fairly certain he was safe). When I am able, we do go out and do things together. And he’s always got my back. No matter what, I know that he’s always had my best interests  in mind, and now I want to be there for him to help with medical language translations, and just ‘be’ there.

Time is something that no one can ever get back.  Once it’s gone, that’s it.  I’m trying not to waste what time is left- and that is the kicker- nobody knows when it’s going to be over.  I know that one day he will be gone, and I dread that thought.  I’ve learned during these 10 years back here, as an adult, that he is, and always has been, much wiser than I ever gave him credit for (I think that’s pretty normal- when I moved to Texas, I was 22 years old and still had that post-adolescent ‘all parents are a bit dim’ outlook).  I’ve learned much more about what makes him him, and have so much more respect for him. Being adopted, I could have landed in a lot of places.  I’m SO thankful that I was ‘given’ to the dad I got. While no parent is ever perfect, he did an amazing job as a dad.

I thank God that he is MY dad.  And I’m glad he’s going to be here for a while longer 🙂

Gotta Lose This Weight

I’ve carried on about my frustrations with my weight gain following chemotherapy for leukemia (APL).  It’s no secret that I’ve got a history of eating disorders (just about all of them).  I’ve got to admit, I’m nervous about doing much restricting, as I don’t want to trigger that hell of anorexia again. I was told the last time around (1996) that I probably wouldn’t live through another relapse. As it is, some of my medical diagnoses weren’t identified until after that last relapse, and they’ve disabled me.

But I’m getting desperate.  I’ve got some diet journals to start using on January first… I’m not much into New Year’s Resolutions, but I do want to have this weight gone by my 50th birthday in November.  I hope I can lose the weight without losing my mind.  I have severe intolerance to heart rate or heat increases, so exercising isn’t really an option that will be of any major benefit.  I can stretch. That’s about it.   If the dysautonomia wasn’t an issue, the disc and joint disease is.  Sounds like excuses… it’s my life. I used to walk like a maniac, and loved it. I’d love it again if I could take my MP3 and hit the sidewalks.  No dice. I’d end up laid out on the side of the road.

So, I’ve got to cut back on calories considerably.  I have to be diligent. But I can’t go crazy with it.  I really just want to be more healthy- not ‘skinny’.  I don’t know how this is going to work.  But I’ve got to do something.