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.

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The Life of Cancer

When I was diagnosed with acute promyelocytic leukemia (APL) in late March 2010, I didn’t realize that cancer has a life of its own.  I expected to go through chemotherapy, have regular follow-up care, and move on. Done.  I’m already disabled, so I didn’t really think that cancer was going to be all that bad. I had been told that the  permanent remission rate for aggressively treated APL was upwards of %90.  I’d be fine.  My standard reply to many of the reactions to my having cancer was “this is the least of my problems; they can fix this”, and to some degree that is still true. But overall, I considered myself very fortunate.  There was a treatment that could really fix me. Not everyone with cancer is that fortunate.

I’ve been off of chemo for about 1.5 years (after 19 months of constant IV or oral chemotherapy, including 50 doses of arsenic IV… 2 25-dose cycles when I’d be in the hospital on a cardiac monitor during the infusion and then go home).  Chemo itself took a toll on my body and the other disorders I’ve got (diabetes- my blood sugars were absolutely nuts on chemo- much higher than usual; fibromyalgia- chemo has side effects involving muscle pain; dysautonomia- my heat intolerance got worse, and my heart rate and blood pressure have been more irritable).  I’ve had ‘chemo brain’ where I’m foggy sometimes, have trouble finding the right words to express myself when I’m speaking, and some memory issues.  Some of that has stuck around, and I’m not sure if it will improve. The blood sugar situation is getting much better, but the dysautonomia is still not good. My memory and word-finding are still not quite right.  But I’m alive. That’s good enough.  I can figure out how to deal with the rest.

I hadn’t expected the ongoing low grade anxiety about relapse and potential metastasis (yes, leukemia can spread).  A few months after stopping all chemo pills, I was scheduled for my annual girly exam. During that, my test to check for blood in my BM came back ‘somewhat’ positive, so I had to have a colonoscopy and upper endoscopy to check for any problems there.  While they were at it, they snatched me up for a mammogram (I’ve never been good at going in for those with any regularity), and because of worsening headaches, I ended up with an MRI of my head.  I also had a weird skin lesion that I needed to get biopsied, and had my first full body skin check by a dermatologist.  A lot of me was scoped, scanned, scraped, or squashed.  Fortunately, everything came out OK.  That was a huge relief.  I have never been all that paranoid about my health (I’m to the point of not reacting much to another diagnosis- I’ve had so many of them), but after a cancer diagnosis, things are different.  It has its own life, even when it’s not there.

I’m learning to relax a little bit, but I won’t ever feel like I’m really ‘safe’.  It’s coming up on three years since the oncologist told me I had leukemia. Had I not gone in for my annual diabetic lab work, I never would have known that my CBC (complete blood count) was absolutely trashed. It took two weeks to get in to see an oncologist, and he scheduled my bone marrow biopsy for a week after that; APL is generally fatal within a month of onset if not treated… and I was sort of put off, even though my lab work had been sent to the consulting oncologist.  As it was, I went to the ER with some shortness of breath the weekend before the scheduled bone marrow biopsy; with a history of  severe blood clots in my lungs, I’ve been instructed to always have anything ‘odd’ in my chest checked out immediately. Had I not gone to the ER,  I would have been another statistic of those who are diagnosed on autopsy, or literally days before death (I know of two people who had that happen last autumn…a 29 year old anchorwoman for the local NBC station, and an 11 year old kid; both were gone within 2 days of being diagnosed).  I’m lucky, and I do realize that.  And, I also know that early detection is the key to the best outcome… so I’m a bit on guard.

I also hadn’t realized how aggressive APL is when it’s not treated until the death of the local news anchor.  I was stunned that I was alive, and she had died just 2 days after she’d been diagnosed.  That was a mind-blower.  I had sort of coasted through chemo and not asked a lot of questions about how bad things were. Looking back, and knowing what my blood counts had dropped to (I got daily updated counts on a card in the hospital to keep track of things), and the purpura (little purple dots of bleeding under the skin), I now realize how ‘in trouble’ I was.   I now realize why there was a sense of urgency during those first days in the hospital (I was there for 6 weeks after going to the ER for the shortness of breath).  I understand why the ear infection was such a big deal, and why it was monitored so closely when it started to spread into my neck, and I had a  moderately high fever but very few white blood cells to fight infections. I was put on vancomycin and gentamycin for five weeks... That’s a long time for any antibiotic, and those two are heavy hitters.

So maybe I’ve gotten a little scared.  I might be a bit late in finally getting spooked, but it is what it is.  At the time, I was more focused on just getting through it.  Now, I’ve got the luxury of having things being stable enough (for my normal abnormal  self) to look at what had gone on.   I hope and pray that I’m in that %90+ that will never have a relapse.  I’ve learned to appreciate life a lot more, and not sweat the small stuff… and what is considered ‘small’ has been redefined many times.  As long as I can get through something, it’s not worth the energy to freak out over. The unknown is another matter.  And I have absolutely no control over that.

I know that I’ve survived all of the stuff that has gone on in my life for some reason. I’m not sure I understand what that purpose is yet- but I’m working on it.  I see a fairly long future, even with the assorted medical issues I’ve got going on.  It’s not like I’m spending my days thinking I’ve got the cancer back again.  But, I do wonder about the life my cancer had…is it gone for good, or is it dormant and waiting to come back?  Some may see that as fatalistic.  For me, it’s just life after aggressive leukemia and the many months of chemotherapy.   I’ve heard others who have had all sorts of cancers have the same feelings of ‘what next?’… it helps that I’m not alone with that.  

Hold On To Hope, Or Face Possibilities

I’m waiting, along with many others, for news about a dear woman who went into cardiac arrest last week, and is in a coma as a result.  The day they warmed her back up from the induced hypothermia (used to minimize oxygen demands on the brain while healing from CPR), her reflexes were present. The next day, she was following commands to squeeze her husband’s hand, and raise her elbow off of the bed.  That sounded good.  Daily reports were coming in, and while nothing else major was happening, there was a hopeful tone to the reports. Then Sunday, there was no word on her condition. Monday, there was information that she was struggling, and last night, the neurologist had done a test and met with the family early this morning.  When the time is right, information will be shared about what that was about.  As an RN, I can’t think of a lot of ‘good’ since there had been little  positive news for a few days.  I remember working on a neuro floor, and when the docs met with the families, there were major, and permanent decisions to be made. Occasionally, there would be some other treatment option, but not usually.

As I’ve been mulling all of this over for the past week, I’ve had so many emotions. Anybody who was a camper or on staff at Timber-lee Christian Center in East Troy, WI would have been directly or indirectly impacted by this woman. That’s tens of thousands of kids and staff members over the decades she has worked there.  Her talent for developing fun programs to get through entire summers, each one different, is indescribable.  She also has a great sense of humor, and is one of those people who just makes people feel good. Her piano playing ability is remarkable, and even more so, since her left arm is weak- but nobody would ever know that from what she can get a piano to do.  She has been an example of what Christian woman can aspire to. There isn’t an ounce of phoniness in her. She’s the real deal.

As an 8 year old, I first met her. She was in charge of the programming for that first year as a camper. Her talents brought stories from the Bible, and how to live as a Christian to life and made them applicable. I remembered her every year I was there as a camper (7 summers), and then when I was on summer staff, she was someone familiar when I was meeting MANY new people.  I wasn’t always the easiest to have around, but she was always kind and compassionate.

This last July, I got to sit down with her and her husband at a reunion at the camp. I hadn’t been back there for decades, and while it had always been my ‘safe haven’, I hadn’t seen anybody from there since the mid-80s. I’m so glad I had the chance to talk with her, and also to have reconnected on FaceBook several months earlier. She is someone who exudes life.  And now she’s in a coma, and is struggling.  That’s not her.  Oh, she’s had struggles- but she made them work for good.

And yet, I believe in a God who is omniscient.  He knows everything- and His will is perfect for His plan.  Not my plan, or her plan- but His plan.  I don’t know what that is, or why this all has happened.  Physiologically, I understand why her heart stopped and she needed CPR.  That isn’t hard to comprehend. But what is hard to understand is how her being in a coma, and so critically ill, is helpful to God’s plan.  I have to have faith.  I know that one day, I’ll be able to ask God directly, and know His reasoning. I do believe that.  And I have to have faith in the meantime. Sometimes that faith uses a lot of kleenex.  Sometimes that faith can’t see through the tears.  But it’s still faith.  It doesn’t waver, but it also rests inside a very real person with very real feelings.

So, now the battle is this (at least for me- and I don’t believe I’m alone in this)… do I hold out for hope and God performing a miracle? Or do I get myself ready to face the real possibility that she will end her work here on earth, and join those who have gone before her in Heaven?  I have to rely on my nursing knowledge to look at where she is- and ‘she’ isn’t lying in a bed on life support. That’s the logical angle.  That isn’t how she lives. She is a very vibrant and amazing woman. I believe God can use anybody in any state to speak to others, and yet being in a bed isn’t how she has lived.  When I saw her in July of this year- just 2 1/2 months ago- she was racing around the camp in a golf cart, tending to the visitors on the grounds. Smiling. Serving, encouraging, and active.

I can’t imagine what her husband is going through today after the meeting with the doctor.  He is also a ‘lifer’ on staff at Timber-lee.  He forges iron into custom ironworks and horseshoes. Yes, there are still blacksmiths!  Now, he’s faced with an incomprehensible set of circumstances and potential outcomes to sort through. But he seeks God’s will as well.  He seeks the glory of God, regardless of the loss or changes he may also face.

In the end, those of us who believe the doctrines and Biblical principles that are an integral part of Timber-lee know that we will all see each other again, no matter what happens here in this earthly life. We have that promise and confidence in what Jesus did on the cross. That makes no sense to someone who choses not to believe in Christianity as described in the Bible- and God gives everyone the free will to decide that. He doesn’t force eternity- or Himself- down anybody’s throat. For me, it’s a comfort -though I still feel the loss of people I care about in a very human way; those concepts are not mutually exclusive.  Christianity really isn’t about either/or… it’s about more and more.  I’ll get more time with my friend. I’ll get eternity with her. That doesn’t mean that I wouldn’t miss her until then.

I don’t know what will happen. I don’t know the private matters being discussed. I do know that the woman I know is vibrant, and unstoppable. Yet, now she’s suspended in time, in a very passive state. That’s not her.  I will still pray for healing. I will still pray for God’s will to be done (which might mean He takes her). But no matter what, I will never forget her impact decades ago, or even now as she triggers deeper thought about God, and why things happen the way they do… and in the end, she has once again strengthened my faith.

And those of us ‘watching’ can celebrate her life, no matter what.

It Was A Privilege, Sweet Lady, It Was A Privilege…

Before ending up on disability eight years ago, I was a full-time registered nurse for nineteen years.  I graduated in 1985,  back when hands on nursing was how nurses were taught, and if any of us hadn’t planned on getting our hands dirty, we were told on the first day of nursing school to leave and not come back.  Because of that way of teaching and thinking, I was prepared to really get in the middle of things even when I’d become a charge nurse  or shift supervisor (and many RNs in the region elevated themselves above actually touching a patient- Lord knows nobody else did!).

I remember many patients fondly  in the countless patients I saw over the nineteen years I worked.  Some of the names may have been lost to time and a memory full of patients, but I remember many  of their situations and some events/characteristics quite specifically. There are a few select patients that were a gift to know.  They weren’t  technically VIPs as the world sees people, but my life was better for having known them. I’m very thankful for each of them.

One of my favorites (and yes, I know I was  supposed to be impartial, but I’m human!) was a wonderful woman who was in and out of the hospital as she battled terminal cancer. She was an immigrant from Germany, and still had a delightful accent in her flawless English.  Even with the torment her body was going through, she had a wicked sense of humor, and if someone got to know her ‘well enough’, she could come up with some silly comments that totally masked her life as it was then.  She used to tell me I was like a bat. On the surface that doesn’t sound so sweet, but she’d have a sideways grin, explaining “You are up all night, and in the morning you want blood.”  She had a point !   I love bats now; they remind me of her in a fond way.

She was in her 70’s I think, and aside from the cancer that was killing her, was fit and mentally sharp. She also was from a generation that still believed in some modesty in personal matters, and was very unsettled when she had difficulty with control of  some bodily functions.  While I was in charge and didn’t have a direct care patient load, I would often answer her call light because she had expressed some mild uneasiness at the youthful  unawareness of some of the younger nurses who would help her get cleaned up. She was ashamed, and embarrassed.  The younger nurses didn’t mean anything by their quickness, though a few would come back to the nurses’ station stating that the odors were offensive to them (which was the place to express those things- we all did).  I told this patient that if she wanted me to come and help her, she could just tell her nurse that she wanted to talk to me, no reason need be given, and the nurse would not be in trouble. (They were all very sweet, and did a good job as young nurses, but the were young, and just didn’t have the experience to look at things as the patient might be seeing them- or how they would feel in the same situation).  She thanked me, and did call for me periodically.

This woman was no stranger to suffering, and yet she remained upbeat and pleasant. The ‘worst’ I ever saw from her was when she’d get a bit quiet. I’m sure she had to be exhausted. There was nothing left to do with the cancer except for comfort care.  Her husband would come to the hospital every day. I rarely saw him, since he’d go home before dark, and I worked the 7 p.m. – 7 a.m. shift.  But he was consistent, and her main support system.  What I heard about him from the day shift told me he adored her.

What really left an impression about this sweet lady was the tattoo on the inside of her left forearm. She was a concentration camp survivor. She had seen- and lived through– the absolute worst that humanity has seen (and done) and she hadn’t let that determine how she interacted with the world around her. It would have been so easy for her to be hostile, untrusting, and resentful, but she was the exact opposite. She was a true survivor, shedding the ‘victim’ label and mentality when it would have been more than understandable to let it define her.  She and I never discussed that tattoo, but she knew I’d seen it (she didn’t attempt to hide it, nor did she ‘show it off’- it just was). Maybe my  eye contact after first seeing it let her know that I acknowledged the indescribable hell she’d survived. I don’t know.  We talked about general things, and she seemed to feel comfortable with me, so I believe if she had wanted to discuss it, she would have. It wasn’t something I felt I had the right to bring up.  I had no frame of reference for the horrors she’d witnessed and lived through, and while I would have gladly listened to her, I didn’t want to seem intrusive into something that so few truly understand.

I was amazed by this sweet lady. I felt honored to have known her, even during a part of her life that was unpleasant and sometimes messy.  She embodied life even though she was dying.  She showed me what the human spirit is capable of, if chosen.  When I heard that she had died at home (with hospice care) I was sad, though also relieved that  she didn’t have to endure any more of the nastiness that cancer brings.  I knew she’d never leave my memories of nursing. She’d always be someone I thought of when anyone said ‘survivor’, even though she’d died.  She had enriched my life, though I was supposed to be the one making hers a little better.  She was a privilege to have known.