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.

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.

Inexperienced/New Nurses- Give Them A Break !

That old ‘nurses eat their young’ comment from less experienced nurses gets VERY old, but there is some truth to it, depending on where someone works.  I worked in Illinois and Texas, and I would hate to have been a new nurse in Illinois hospitals; being an experienced nurse in Illinois when I returned 17 years after leaving wasn’t so bad. Being a nurse in Texas was generally positive, as they’ve had REAL nursing shortages for a long time- not just a shortage of adequately educated new graduates– for a long time.  When I moved to Texas  in 1985, employers were very thankful to have a nurse- even a new grad- because new grads had to have the basic skills done before graduating nursing school (and even being eligible to take boards)…. there were no ‘internships’ to finish schooling.  Now, hospitals have to finish educating the new nurses, and they don’t like it. They have been put in the position of paying for the ‘internships’, or running out of new nurses. It’s expensive, and finding older nurses who want to ‘babysit’ isn’t always easy; that wasn’t part of nursing school- that is part of being a nursing instructor (who may be some relative newbie who mainlined their Master’s degree to avoid working on the floor- so she has no floor experience)  I don’t blame the hospitals for resenting what they’ve been left with, but it isn’t the newbie’s fault either.  Orientation in any new job used to be two weeks maximum… if the new employee hadn’t figured out enough to be cut loose on her own in that job (with the expectation she’d have questions along the way), she was let go.  End of story.

When I graduated in May of 1985, we had to finish a checklist of skills in each class. If we didn’t pass those skills checklists in each class, we repeated the class. Period. End of discussion.  We may not be experts by a longshot, but we could get the job done without damaging someone.  Like with anything, there are always many things to learn and improve on, but we had enough learned to be safe.  We weren’t told that ‘all hospitals have IV teams’ (which isn’t true- and if you work in long term care, you are ‘IT’… there is no IV team anywhere).  You don’t know where you’re going to end up working to pay the rent and pay back those freakish student loans.  You go where the money is- and that very well may not be what you dreamed of doing.  If you have tens of thousands of dollars in student loans (instead of going for an ADN at a relatively inexpensive community college,  and getting an employer to help with further education), you work where there is work- or you never leave your parents’ basement.

I went to nursing school to work peditrics. That didn’t happen for 17 years, and I ended up finding it extremely depressing with the abuse cases, and permanently damaged preemies that got older, but never got any more  developmentally advanced than  the day they left the NICU 15 years earlier. Very few generally healthy kids ever showed up; most were absolute train wrecks. But I was glad for the experience. By the time I got a job on a pediatric floor, I’d taken care of kids on other floors that were in hospitals that didn’t have specialized peds floors.  So I’d taken care of kids; that helped me get the pediatric job- as well as having had 17 years of honing various skills that are good for any job; I just needed to work on the specific things to pediatrics- which was challenging enough to keep me interested.  I’m glad I did it, and glad I got out.  All experience is experience in something that will be useful in any other nursing job. 

So what makes an experienced nurse?  Having actively worked for over 20 years in healthcare as an RN (and a few as a student nurse/CNA), and since being disabled, having watched nurses for 8 years as they took care of me or a family member or close friend, I’d have to say that a nurse is no longer ‘new’ after about 3-5 years- but  it depends on the nurse. It takes a lot of time to integrate the information in nursing school, which generally focuses on one body system at a time, to be able to take care of a 19 year old pregnant diabetic drug addict who is in the middle of a sickle cell crisis, and is a post-op appy.  Or an actively dying AIDS patient with pneumonia, a perforated bowel, and his Port-a-Cath has clogged past the point of being ‘clot busted’, that is intense pain and has no current orders for any pain med besides an IV delivery route.  Or an elderly nursing home patient  on dialysis, a tube feeding, a trach, and has diarrhea (first thought in that situation is fecal impaction) and a UTI.  It takes time to see the WHOLE patient- not just the parts assigned to you !  You’re assigned to all of them as a nurse- new or not !

New nurses are supposed to have questions (including nurses who may have experience, but are new to a  different specialty).  The quiet new nurse is the most dangerous and the most disliked on any unit/floor. There’s always the question that she may be too dim to know what she doesn’t know, OR that she is too meek to ask. Both are recipes for wrongful death, and no other nurse is going to want to be associated with that type of nurse for anything.  They ARE the plague. Those who talk as if they’ve been nurses for years aren’t far behind. If you’re new, ASK.  If you haven’t done something very many times (like at least a dozen), it’s GOOD to just run something past someone with more experience, until the skill is something that you do without even realizing that you’re doing it automatically.  You’re not stupid for asking; you’re stupid for thinking you have it all figured out when the ink on your license is still wet.

That leaves something for the older nurses to remember. We’ve all been new.  For those of us who graduated a few decades ago, we didn’t have the horrible situation of being turned loose after an incomplete education.  We didn’t pass boards by chance of getting 75 questions that we happened to know the answers to (we had 1000 questions over 2 days in 4 groupings of 250 questions; if we got less than 600 right, we weren’t nurses; we got two tries to get it right, and after that it was back to school). We’ve been able to adjust to things as they came along (and that’s something for the newbies to remember- the older nurses know how to do things in many different ways, including the old, new, and in between). The newbies have been cut loose having to deal with medical technology AND the alive and breathing patient.  That can be overwhelming.  Older nurses have to be role models and mentors, not antagonists. Or, expect those calls on your day off when someone calls in because you’ve run all of the newbies off.  But, if you know you don’t want to be a mentor or preceptor to a newbie, tell your manager !  Don’t get paired up with someone you have no interest in helping learn the ropes 🙂

For those nurses who went into nursing for the relative job security and decent pay, leave.  Nursing needs people who are doing the job for the patients.  Yes, everyone goes to college for the purpose of getting a job.  But those who are simply in nursing for a paycheck aren’t what the profession needs. If you can’t get into someone else’s shoes and learn to appreciate what they are going through (also known as empathy) you’re not much use.  Go be an accountant or electrician. The hours are better anyway 🙂

For those nurses who will do anything to get a nursing job, consider this:  I got an ADN. Nothing else. And I worked staff, charge, supervisory, and department head jobs.  I never needed a BS.  I got to teach CNAs (which was fun!).  I had desk jobs doing assessments and care plans. But I was also willing to go where the jobs were– meaning smaller, more rural communities.  I ended up in the Texas Hill Country, and that was wonderful. I loved my different jobs- and they were glad to have an RN who was glad to have the job.  XTXRN was born in those hills…. those who have been on a specific nursing social site will know what that means 🙂

So, old school nurses, remember what it’s like to be new… newbies, remember that those who have been doing this longer than you may have been alive know a lot more than you do. Learn from them.  Lose the superiority thing.  Explain what it is you are having trouble with, and it’s much easier to help you 🙂  Never be afraid to ‘look stupid’.  The nurses that are truly stupid don’t ask questions.  They may know a fair amount, but by not asking questions they limit their potential.  And nursing as a whole.

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.

The Psychotic State University School of Nursing

I must say that the vast majority of nurses I’ve worked with over the years have been wonderful.  Some were a bit on the side of displaced sorority sisters in need of a house (annoying and way too old to be stuck in an early 20-something mentality). And there were some that just left me with my jaw dropped through to the floor below me or backing away in fear.  The graduates of Psychotic State University’s School of Nursing. A frightening lot of the eternal mystery of  WHO LET THESE PEOPLE GRADUATE?  I understand someone needing to be at the bottom of the class, but puhleeze….

One of these miracles in self-survival worked with me on an acute neurology floor. Most of our patients were at least partially dependent for just about everything. Everybody helped each other out when moving these patients up in bed, cleaning them up, or transferring them to recliners or chairs.  One ‘special’ nurse (I’ll call ‘J’) was nothing short of mind-boggling.  I’d gone in to help her move her patient up in bed, and since we all had helped each other do this a bazillion times, there was an unspoken ‘dance’ in getting the job done. Put the side rails down, put the head of the bed down, move the patient up, put the head of the bed back where it had been, make the blanket look spiffy, get the side rails back up, get the call light within reach, and leave. Done.  Depending on how tall the bed was, we’d raise it to a ‘working’ height (to save our backs).  Anyway, I had started putting the head of the bed down (it was still moving) and noticed ‘J’ fiddling around on the other side of the bed, mumbling to herself.  I asked what she needed and she replied “I’m trying to put the head of the bed down.” 😮   I’m sure my eyes bugged a bit.  Another night, a bunch of us had decided to order burgers from a nearby place, and I asked ‘J’ if she wanted to order anything. Her reply:  “I don’t like Chinese food.”  Alrighty then….no Chinese burgers for ‘J’.  *shaking head* While she never smelled of a particular herbaciousness, there were suspicions.

At this same hospital (which really was a nice place to work- these examples were the flukes of nature that joined us for a period of time), there had been some budget cuts and an associated long term care portion in a free-standing building across town was being closed down permanently.  The staff nurses there were being dispersed throughout the hospital, ready or not.  Long term care nursing is its own animal.  I’ve worked it, and loved it- but it is NOT the same as acute care nursing.  The skill set is much different- and in some ways much more varied than the specialty floors set up in that hospital.  Well, our ‘gift’ from the defunked facility was nearly a fossil herself. She had to be older than many of the patients she took care of.  She was pleasant enough, and easy enough to get along with, which was always tricky in a group that had worked together for any period of time and knew each others’ strength and weaknesses’.  But she was a bit ‘thick’.  Normal conversation seemed to be a bit of a struggle for her. And her hearing was fine. Evidently normal nursing skills were also a bit difficult.  We had a policy that all insulin doses were double checked by another nurse.  One day she asked me to check the dose she’d drawn up.  No problem. Glad to help.  I nearly passed out when she showed me a 3-cc syringe with the insulin in it.  For those not in the medical loop, insulin is drawn up in very specific insulin syringes with 1-unit increments marked on the side of a ONE-cc syringe.  I was dumbfounded. I think part of my jaw may still be on that hospital floor.  I asked her how she knew how much insulin she had in that thing.  She had crickets and the deer-in-the-headlight thing all going on at the same time. She didn’t know.  And it didn’t seem to bother her that she was about to kill someone or leave them in a vegetative state. I’m not sure exactly what I was supposed to check, but I checked my butt on over to the charge nurse after taking the syringe away from Nurse d’Permanent Sleep.  Oy.   Needless to say, Einstein was sent for some ‘remedial’ education. We never saw her again.

At a drug/alcohol rehab place I worked at, many of the nurses were primarily psychiatric or chemical dependency rehab nurses. No problem since that’s what we dealt with %99 of the time, and the medical complications that came up were usually pretty specific to detox.  But…we had patients who had some ‘side effects’ to their years of drug usage that were emergency situations when they happened.  One weekend night nurse (a ‘traveling’ nurse- who were also good for the most part) was giving me report one morning about a new patient who had a high fever earlier in the shift (let’s say 103 degrees for some reference point).  This nurse was SO proud of herself that she’d been on top of things with Tylenol, and the guy’s temp was now hovering in the 97-degree range. That was NOT good news. When someone becomes septic, the body fights with a fever as a way to help heal itself; when the temp goes sub-normal it means the body can’t cope any longer and is decompensating. The train to dead has left the station.  I couldn’t get out of report fast enough to see if the guy was even conscious anymore.  He was, but looked BAD.  I got the OK to send him to the local ER to get labs done (and I couldn’t imagine them not admitting him to ICU). I was pretty sure he was in septic shock.  The local ER didn’t like drug patients, and sent him BACK to us after drawing the labwork.  Scared me to death.  I’m not sure what we did that day to keep him from dying, but the next morning I got a call from the hospital telling me his blood cultures were bad. Ya think?  He was an IV drug user with a massive infection around his heart.  The drug rehab doc arranged to send the guy back to the hospital where he stayed for a couple of weeks on IV antibiotics before returning to complete his drug rehab, with another 4 weeks of IV antibiotics every 3 hours (at a facility where the nurses weren’t used to giving IV meds, or dealing with a PICC line- I didn’t mind).  He was a great guy who got a second chance, no thanks to the Tylenol dispenser.  He should have been shipped out while his fever was high.  High fevers were not typical of what we used to see, and in an IV drug user should be a huge clue that something is wrong.

One of my nursing student compadres was ‘interesting’.  He reminded me of Waldo from ‘Where’s Waldo’ fame, sans striped clothes and beret.  Tall, skinny, huge glasses, and screamed “I’ve got uber-geek genes’. But he was very sweet. I got paired up with him to do a report on riboflavin during our Nutrition class. We had arranged to me AT the library at a specific time.  I got there a bit early, and waited.  The arranged time came and went.  OK, maybe he got hung up somewhere. SO I waited a bit longer. Nada.  I peeked inside of the library, and he wasn’t there. I wandered around, looking around the library and inside of the library, and never found him.  The next time we had class, I asked him why he hadn’t shown up. He looked baffled and said “I was there !  I was in the back in one of the cubicles.”   Really?  I was supposed to find him in the library’s equivalent of a cave?  I asked him if he crawled in the trunk when someone told him to meet him at the car…   I did my own report, and got an A. 🙂 This guy- sweet as he was- didn’t make it through the first class that newbie RN students take (Fundamentals of Nursing).  God looked kindly on patients everywhere.

I’ll think of more ‘special’ nurses to write about.  I learned something from each of them, and wondered how they ever got through the nursing schools they went to, or hadn’t been reported to the nursing board for being dangerous (even if unintentionally- they weren’t ‘killer nurses’, they were idiots).  I was scared for their previous patients; maybe they were no longer able to complain about the nurses in question… 😮

Yo, Doc…I Don’t Worship You

I went to see a surgeon about getting rid of some cysts that I get on my scalp. I wait until I have a ‘crop’ of them before bothering with them, but eventually they do get infected, so I prefer that they are gone.  This isn’t anything new. I hadn’t anticipated any problems.  This same surgeon had inserted and removed my Hickman catheter for chemotherapy. He’d been pretty decent to deal with.

So,  I go to the appointment, and he’s deciding what he wants to do, and we both agree that doing it under a local anesthetic would be fine. I’d prefer to not get knocked out; anesthesia doesn’t sit well with me and I’ve had some nasty complications.  Then he tells me he’s going to do it in a small town about 15 miles from here. There are three good sized hospitals (250-350 beds) and an ambulatory surgery center here in town. In the little town, they have a ‘branch’ hospital of one of the larger hospitals. If something unexpected happens, I’m either stuck in that dinky hospital, or I’ve got to be transferred.  And why should I have to go out of town to a smaller place?  The nurse said that the doc thinks it’s quieter over there. Really?  I’m being inconvenienced for his convenience?  I didn’t see him walk on water. I’m not impressed. I think he may live there, and it would let him sleep in later instead of driving here early in the morning. But that’s pure speculation.

Then I tell him that the driving distance is an issue. So he tells me that I’d have to have someone drive me here in town even for a local anesthetic, so just find someone. At that point I hadn’t brought my dad into the picture (the one who does the driving in these situations).  I am always within a cab ride or bus ride away from home no matter where I go for medical stuff; I always want a backup plan even if dad is going to drive me. There is no bus between that little town and home, and a cab would be more expensive than the surgery.  I told the doc I don’t have anybody to ask, and he insists that I can come up with someone. I told him I’d have to ‘rent’ someone (which will be the case when the time comes that my dad isn’t available).

That made me mad. When I say that I don’t have a lineup of people to drag me through two counties, I mean it  (well, dad is willing to take me there, but that wasn’t the point).  Not everybody has a list of people who will be available to help them at the drop of a hat.  Not everybody has friends that they’re in contact with regularly- or even in the same state.  I’ve got one friend here who just had some significant complications after one surgery, that required another surgery, and she’s still recovering. She also has a toddler, and works part time when she’s not recovering from surgeries. We’ve talked, and had FaceBook contact, but I haven’t seen her for 27 years. I know she’d help if she could.  I know a very few other people who also work, and I haven’t seen them since 1985 either; it’s all FaceBook contact. 

I don’t go out of my way to be difficult, and I’m not obligated to go into every reason why I want something done closer to home. If that little town had some medical center of the universe, I might think differently (but probably not for some stupid scalp cysts), but it doesn’t. To me, it’s like ‘The Podunk Urgent Care and Taxidermy Shop’…not really fair, since it’s associated with a good hospital (actually my preferred facility IN TOWN). I have to have the local anesthetic without epinephrine, which will increase blood loss- but the epinephrine would make the dysautonomia go crazy, and there’s a considerable risk of ending up in ICU. I’m not just being stubborn. I need to be closer to home, in a decent sized facility, or even the ambulatory care center, where they deal with emergency transfers if needed.  Then I got to thinking that maybe something was wrong with the doc being banned from the hospitals here, but the info online didn’t show any problems.  It was purely for his convenience or preference.  Yeah, well buddy? I’ve got some preferences as well, that revolve around safety and getting this done without any medical mayhem happening because of being somewhere that isn’t as equipped to deal with blood loss and/or the dysautonomia. And yes, he knows about the dysautonomia.

So, I got the call from the nurse at his office thinking she’s going to schedule the procedure out there in the back forty, and I told her I’m not going to be going there. She then asks “So I should cancel it?”, and my unpleasant, sarcastic self is thinking, ‘Why no ! Let’s just let him show up to NOBODY, and he can see my list of people who can drag me around the state -right there in front of him’. But I was nice. Sorta. I just said that would be fine. End of conversation.

I’ll see my regular doc on Monday, and ask her for a referral to someone who doesn’t do cross-country surgery. I’m sure there are plenty to choose from. And dad will be happy to lug me around here in town whenever it’s scheduled. 🙂

Why I Didn’t Die During Nursing School…

I was 19 years old when I started RN school.  And a very young nineteen.  I’d grown up in a conservative church, and was an only child.  I really wanted to be a nurse, and was determined to get through it, but I’m not sure how that actually ended up happening.  I was horribly shy when it came to dealing with the patients when I was a student.  My first semester of clinical classes began in September 1983.  A lot has changed since then…

My first several patients during clinicals were hemorrhoidectomy  patients.  There I was, never  having seen a naked person, and I had to look at their butts.  WAY into their butts.  Uh huh.  I’m sure nothing about me exuded confidence, so starting with the butt was probably a safe place to put me, but I was mortified, especially since most of them were men.  Butts and balls to a naive nineteen year old was almost the death of me.  I finally had a chat with my instructor (a very nice instructor, but she was also intimidating with her knowledge).   I needed a different view.

I asked if I could possibly have a different type of patient.  She said sure. No problem. So when I picked up my next assignment to prepare my careplan, I saw the words ‘esophageal varices’ in an elderly woman.  That meant that blood vessels in her esophagus had ‘blown’ and she’d likely been critically sick from blood loss.  I was sure my mere presence in the room would have her spewing forth all that kept her alive, and I’d kill her within minutes, even if indirectly.  I was terrified.  I asked my neighbor (a pediatric cardiologist) about said varices. He told me that it was possible she could bleed to death in minutes if they reopened.  Not helpful.  I got busy with my careplan,  and  every horrible thing I’d already heard or read was confirmed.  The woman was doomed.

The morning came for me to actually go talk to this lady (this was back  in the day when we did all care for the morning for our assigned patient- not following someone  else around while they did it).  I stood in the doorway trying not to pass out.  My instructor came up behind me and physically pushed me into the room, whispering “You actually have to talk to them”…. I was thinking ‘ just shoot me now’.

What I found was a very alert, sweet woman who was cooperative, and didn’t have any signs of getting ready to exsanguinate in front of me.  I said hello, and she didn’t die.  I did my nursing student assessment, and the woman didn’t seem to suffer any ill effects.  Huh.  So I’d been a bit more freaked out than necessary.  I had the same lady three different days. I even ended up washing and rolling her hair- which she loved.  Anybody who knows me is rolling over in hysterical laughter at the thought of me doing anything positive for someone’s hair. I can barely keep mine brushed.

The next horrifying event was bathing a comatose MAN.  I’d have to TOUCH him.  My instructor seemed to sense my incomprehensible stupidity (inexperience?) and was in the room during the whole process. I didn’t kill him either.  The familiar lightheadedness was with ME the whole time, but most importantly the patient didn’t get worse.  OK. Check that off the list.

On to the big stuff.  I had to give an enema. The ‘serious’  kind with the little soap packet and the big bag that got hung on an IV pole.  My instructor was in on this as well.  I got the soap into the bag, and was getting the water to the right temperature before I filled said bag. I had the clamp on, so nothing would leak before it was supposed to find its way into the lady’s back door.  I put the little packet of lube on the  business end of the tubing.  Gee, this was going well !

Then my instructor suggested it might be more comfortable for the patient  if I let the air out of the tubing before I brought it out to the patient.  Well, that sure seemed like a good idea- no point in giving the woman gas. SO, I unclamped the clamp on the tubing, and waited for the air to exit.  What I didn’t expect was the lube packet being shot across the room from the force of an entire length of tubing full of air.  It was like sniper training in its force and trajectory.  I don’t know where that packet ended up, but I know I was ready to die.  My instructor was very professional, but I think I remember a slight grin. The patient looked a bit nervous, along with slightly relieved to know that everything was being supervised, and this nineteen year old pre-rookie wasn’t being turned loose on anyone.  I got more lube, and the enema went in, and came out, just fine.

I got through my fundamentals class  without killing anyone.  THAT is why I didn’t die in nursing school.  Nobody got worse as a result of my care.  I started out with a negative confidence score, and got to the point where I didn’t anticipate disaster.  That was the biggest perk in getting through fundies.  I had a shot at becoming competent !  All nursing school really teaches is how not to kill someone on purpose.  The experience and finesse come later.  I was at least on track !  I’d gotten through the checklist of skills, and passed tests with solid grades (anything below %85 was a D; I was usually in the %90s).

In the 20 years I worked as an RN before becoming disabled, I got past the shyness fairly quickly.  I just didn’t have time for it.  I needed to get in, get information, give care, and get out.  On to the next patient.  Asking about the color and consistency of someone’s poop was as much a part of my day as parking the car.  I had entered an ‘intimate’ profession.  I had to know things about the patients that they didn’t tell anyone but their closest friends and relatives- and some things that they didn’t even (or especially) tell them.  I had the book knowledge, and I fairly quickly got through the ‘people skills’ that make nursing work.  Without them, there’s no chance at giving good care.  Without getting up in someone’s business, I couldn’t know what they needed.  That trumped my insecurities EVERY time.  🙂