When There’s a Death In The Family

On March 2, 2014, my fifty-five year old cousin died. She would have turned fifty-six in May.  She was only five and half years older than I am, and my closest cousin on that side of the family since we reconnected as adults.  While she lived about 80 miles away, we stayed in contact by e-mail, phone calls, and the yearly family Swedish Christmas Eve party.  I’m still sort of numb, though her death didn’t come out of the blue.  She had a particularly evil form of cancer.  But it’s hard to really accept that she’s gone. She’s the first in our generation of cousins to die, who lived past infancy or early childhood; there were some tragic deaths of infants and children in the family, including my cousin’s older brother at age seven, when she was eleven months old .   If anybody could have beaten this, it would have been her.  For a while, she seemed to be handling chemo relatively well (it’s NEVER easy).  The complications  from the cancer and chemo were another story.  My brain isn’t working that well in writing this, so I apologize ahead of time if it’s scattered.  It’s disjointed, and it’s really, really long…  (for my cousin, the textbook editor… always succinct and grammatically proper… oy).

Our grandmothers were sisters who came to the US via Ellis Island from Nordmaling, Sweden (WAY up on the northeast coastal area, Lapland, reindeer, midnight sun) in the 1920s. They came over on the ship called the ‘Drottningholm’, leaving from Göteborg, Sweden when they were in their late teens and early 20s.  There were 13 siblings in all, and most of them came here, settling in the same general area in the Midwest, in and around Chicago. Nobody spoke English before they got here. They left everything they knew to start a new life .  Eventually, many moved all over the country as their families grew, and jobs took them away from the Chicago area.  Our parents are first cousins (at 81 and 89 years old)- both still very much alive and running around.

When we were kids, that five and a half year difference in age was huge, and I was in the ‘little kids’ group of cousins when we got together for family parties.  The big  yearly family  party was the Swedish Christmas Eve  shindig , and it was THE family party to look forward to  (crazy, crazy fun party !!). There is still a smaller version, that is equally anticipated and keeps that Swedish heritage alive, which is such a treasure.  Whenever possible, family came from all over to attend that party.  I’ve blogged about that elsewhere 🙂   I adored my cousin. She was ‘cool’, and always nice to us younger kids.  I was also the recipient of some of her outgrown toys when I was a little kid, which I still remember (really nice doll buggy, and a whole set of ‘Little Kiddles’ – little 3″ tall child dolls who had their own house that doubled as a carrying case !!).  We lived in the same city for many years, which not all of the cousins did, so I’d see her more often than many of the others of that generation. It was still only a few times a year, yet it was often enough to really like her and enjoy the times I did see her ( there were two of the boy cousins closer to my age that I saw regularly throughout the time I lived at home, before moving to Texas after nursing school in late 1985).  This cousin was someone I looked up to as a kid, and was so glad to reconnect with her when I moved back to my childhood hometown in late 2002.  I moved back a few weeks before Christmas Eve, so we saw each other  for the first time in many years at the now smaller Swedish family party.  We quickly became as much friends as  we are cousins.

When this all started last June 2013 (thereabouts), she called me a few times about some troubling symptoms, and her intense feeling of being discounted by the first gastroenterologist she saw (I later suggested she send her first full colostomy bag to his office).   I’ve been an RN since 1985, and she had some questions, and wanted to know what I thought about this guy saying  she was fine except for a minor problem (for which she was given some topical medication), and did that sounded ‘right’. Though disabled, I still keep my license, and need the 29 years of knowledge and experience to deal with my own medical issues- and am always more than willing to be a sounding board or ‘medical translator’ for family and friends.  This is a cousin who called me in the past for some of her family and  own questions when medical issues came up, and I knew that she knew her own ‘normal’ very well; she needed to listen to her ‘gut, in my opinion.  She’d been in France a few  weeks earlier, and had some vague symptoms there, and they were getting worse.   I told her that if she felt that something wasn’t being addressed, she might contact her primary doctor for a referral to another specialist.  And she did.  She was able to take a scheduled ‘fun’ trip to California after the initial specialist appointment, before seeing the new specialist.  While I was glad she was able to travel at the time, I’m even more thankful now that she was able to have two great vacations before her 9 months of hell began. 

She had an appointment for additional testing, but before she got there had a severe episode of rectal bleeding while at work, and was immediately driven to the ER at a nearby hospital.  She got the preliminary diagnosis (from a tactless ER doc) that she had a rectal mass.  She had known something wasn’t right.  She was admitted for more tests, and long story short, she was diagnosed with a neuroendocrine colon cancer after surgery and the full biopsy, which surrounded her rectum about %75 the way around it (basically like a fist around the end of her colon), and needed a permanent colostomy.  Surgery  took a little over week to actually get done, and in the meantime, she was in intense, constant pain.  She had a moderately ‘normal’ recovery from the surgery, and had to get used to the colostomy, and some decent pain management.  From there, she spent some time in a rehab facility to regain her strength before going home. I remember there was more going on (I still have some brain fog post-chemo), but she was looking forward to getting on with treatment. At that time, the plan was to treat it, and her plan was to do what was needed to  recover, and keep the part of the tumor that couldn’t’ be removed in check.

Now, I get mixed up as to what happened when, but over the next 9 months (give or take a week or two), she had non-stop hospitalizations and  complications with chemo and the cancer.   They were unable to completely remove the tumor because of how it was positioned and the nearby blood vessels, so lymph nodes in that area and additional tumors (spread from the main one) in her liver began to be an issue, growing and causing pressure.  She was given  various types of chemo (including a clinical trial ‘cocktail’ of already approved meds used for a different type of cancer, that was being looked at for neuroendocrine tumors), and I really felt that if anybody would be in the ‘survivor’ percentages, it would be her.  She was in otherwise  good health, and she was young, especially for this type of cancer.  But, neuroendocrine tumors are absolute bastards in the tumor world.  When I was looking up information when she was first diagnosed, I was horrified at the statistics… but I still thought that she had a chance.  It’s never over until it’s over. (Valerie Harper was diagnosed with a brain tumor and given three months to live; that was fifteen months ago, and she has said “Don’t go to your funeral until you’re dead”, and did ‘Dancing With The Stars’.  I love that. 🙂  )  And those statistics never differentiate between ages, other health issues, or actual cause of death. If someone dies crossing the street on the way to their appointment, they are included in the deaths from whatever disease is being studied and reported.  SO, someone who is 85 years old, with multiple chronic diseases, who is hit by a bus going to the store is still included in the cancer death rate because they died during some particular study.  So statistics are iffy- they are a reference point worth considering, but not the be-all, end-all ‘rules’ of survival/death.  I was looking at the possibility that a 55 year old female in otherwise good health could be in the small percentage of survivors- why NOT her?.  I couldn’t see it any other way… but I knew it would be a hard battle.

In the months she was being actively treated, she had a kidney stent (she called me about some nagging and increasing flank pain- and she was right; something was wrong– there was pressure on her ureter from the mass of lymph nodes, cutting off the flow to the bladder from the kidney- so her kidney couldn’t empty out, causing a lot of pressure and pain), low potassium and magnesium, constant vomiting (which can be a cause AND symptom of low potassium- ‘nice’ vicious cycle there),  an infection that I’m foggy about,  multiple fractures in her sacrum, blood clots in her legs, fluid around her lungs, a LOT of pain, multiple adjustments in her medications, a port placed (for giving chemo and drawing blood to avoid multiple IV sticks), medications to deal with medications, a new kidney stent, a lump in her neck from lymph nodes-which caused arm pain from the lump pressing on nerves, and on and on. And during it all, she was mentally going on as if she was sure she would be fine in the end.

I have over 700 e-mails between the two of us from the time just before she was diagnosed until January 2014, when I noticed things were changing because of the change in communication.  She wasn’t answering e-mails or posting as much on the support site for friends and family.  That was different. Something wasn’t right.  I didn’t call her much.  I knew she needed rest (and she had friends who were visiting her, which was SO wonderful), and if she didn’t answer e-mails, she wasn’t online, or up to ‘talking’/communicating. I understood that, and we had  an  arrangement that if she wanted to call, she could- and if she were at a facility, I’d call her back on the room phone so she didn’t have to use her cellphone minutes.  If she was home, she called from her landline.  I waited to hear what was going on from the site set up for family and friends as well.

I saw her at Christmas, and she was in ‘new’ pain (I was SO glad to finally SEE her after all of the  e-mails and phone calls !).  That would turn out to be the fractures in her sacrum, which she had to have glued back together.  She had her bones glued. Back. Together.    She never got a break during the entire 9 months.  There was always something else she had to deal with and/or get treated.    I cried a lot, as I knew that each time she called with something ‘not right’, it meant that the cancer was not giving up to the chemo.  In February, it became official.  The clinical trial meds weren’t working (and those aren’t given when there are ‘known’ medications that work) so that was already a sign that things weren’t going well at all… but someone has to make it, right?  There was nothing left to do. It was a matter of time, and not that much of it.

She called me in mid-February after being discharged from another rehab facility to help her get stronger after the hospitalization for blood clots, fluid around her lungs, neck nodes,  and getting her bones glued.  She  told me the doctors had no more  options for additional treatment. I’d already been told that her prognosis wasn’t good (from dad, via uncle, then e-mailing her mom, who called me back) , but I asked her if she’d been given any time frame and she said she didn’t want to think about time limits. She also said she didn’t feel like she was dying.  I’d learned a long time ago that patients do have some feeling of when their body is not going to recover.  My answer was  “then don’t” !  (Real clinical and technical, I know…).  I didn’t say anything about the time prognosis I’d talked about with her mom.  She didn’t need me to have some sort of mental countdown going on… so I blew that off as best I could.   She said she wanted to check out some alternative healing options and knew of a Chinese medicine doctor  nearby, and I told her she had nothing to lose, and who knows?  Something might help her at least feel better.  So much of Western medicine comes from natural sources (plants, animals, etc).  Why not?  I encouraged her to do whatever she felt was right for her.  She didn’t have anything to lose, and only something to gain.   She wasn’t ever able to find alternatives… she ended up on Hospice shortly after that phone call.

That was the last conversation we had about getting well.  She called me  a few more times, and each time she sounded weaker and more tired, sometimes a little foggy.  She wanted to know about how hospice decides when to do things, and when not to, and if palliative care was better (she wanted to be at home, so that pretty much answered that).  The last time we talked was within a few days of her death, and by then she sounded almost deflated and she told me she was tired of ‘all of it’. She was still denying any feeling of  ‘actively dying’, yet also sort of saying she was ready for it to be done.  She also asked me why I was able to get well (from the leukemia I had diagnosed in late March 2010, and had 19 months of daily chemo to treat, including 50 infusions of arsenic trioxide).  It wasn’t in an angry way, or in any way ‘upset’ with me  for surviving… it was almost a childlike tone, just wanting to understand the incomprehensible. I really didn’t have an answer, except that she got a meaner cancer than I did.    I told her I had just gotten extremely lucky to have been diagnosed while there was time to treat it.  Many people with what I had are diagnosed at autopsy; I know of two people, one a child, who were gone within two days of diagnosis.  I also told her to do this next phase of her life (the last days) however she needed to do them.  I guess it was how we said good-bye.  I didn’t know how soon ‘it’ would be, until I got word from the support site posts that she was sleeping most of the time, and rarely woke up…then I read she had a brief period of awareness and drank some juice.  That is common very close to ‘the end’, and I knew any calls I got from family would be to tell me she had died.   And that’s what happened.

Cancer is a mean, nasty disease, and there are various forms of cruelty that it can throw out to torment people.  She got one of the worst I’ve ever seen in the 20+ years I was working in various areas of nursing, and with other friends and family (my mom had breast cancer, second breast with suspicious cells, lung cancer, and brain cancer and all of the treatments and surgeries with those… and then dementia from the brain radiation, and lived for another 17 years cancer free).  My cousin never got a moment’s reprieve from agonizing pain, or if the pain was doing better something else would go wrong.  It was SO unfair.  It’s never ‘fair’, but she went through more in nine months than most people go through in a lifetime.  It’s not really fair to compare people’s diseases , since whoever is going through something like cancer is feeling pretty scared, and having their own journey with their disease, but from an objective standpoint with nurse eyes, she had it really, really bad.

One thing that she was so consistent with (even before the cancer)… she always knew when something wasn’t right.  She knew when there was something brewing or just outright wrong .  She knew her body- even with all of the ‘new normals’ she had to get used to- and she got things taken care of when she knew things weren’t right.  Everyone needs to do that.  She’d call me and ask what something might mean… and if she should call her doctor then, go to the ER, or wait until office hours (depending on what was going on).  Sometimes she needed an explanation about something, and sometimes I encouraged her to call one of her doctors (we’d figure out which one to start with since she ended up with several).  Other times, I encouraged her to get checked out as soon as she could.

I will miss her so much.  I already do.  And yet I’m glad she isn’t being tormented by that nasty tumor and it’s offshoots and chaos any longer.  She went through all of this with such grace and dignity, and never gave up the idea that she was going to be OK, until the very end.  And then, she went peacefully in her sleep with her mother and housemate at her side.   I’m not going to be able to go to her Life Celebration because of my own medical issues (and the logistics of getting there with various equipment).  I’m upset that I can’t be there.  I know she’d understand, since she knew I couldn’t attend but a couple of hours of the Christmas parties, after dinner was over.  I’m just really sad.  I wish I could hear more about her from the people who are going to be there.   I’d like to be there for her mom, and her  brothers (who have had to say goodbye to two children/siblings now) and their families.  So instead, I write to clear my own head, and in some very small way, pay tribute to my cousin.  There are a lot of things I’ve thought about during this past nine months, and how my cousin made my life better just by being herself.  As adults, we had a great relationship, and I found her to be   a kind, compassionate woman, with a great sense of humor and an amazing work ethic.  She was never judgmental.  She looked for the good in everything we ever discussed.  She was loyal, and able to help me out with her own perspective on a difficult situation. She knew how to have a conversation without injecting drama.  She let me be there for her, when I often feel like I’m not useful for a whole lot anymore.  I just wish it had been for something that left her here (I’ve never had a ‘nurse call’  be for anything good 😦  ).  It’s always hard to say goodbye to someone, and someone in my generation in the family is just plain scary.   Especially someone I really cared about, not just because we’re related, but because she was a person who added so much good simply by being.

I will love you always, K.P.A.

If I Could…

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

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

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

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

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

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

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

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

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

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

Being a Nurse Family Member…

Most nurses know that the worst family members of patients are doctors, lawyers, and other nurses!  We know what to look for. We know what is standard operating procedure. We know what is correct technique. We know what the alarms and numbers mean. We know how things are supposed to be done…and we don’t want crap care for our families.  When my dad had surgery recently, I saw some things that I wasn’t happy about- but not close enough to see what was going on at the time, or had taken a break to go take care of my dog, so not there at all.  I’d hear when I got back to the hospital.

Dad returned from surgery to spend 24 hours in ICU for observation since the surgery was on his neck, with a lot of real estate in there that needed to be closely monitored. One of his blood vessels had to be cut in order to remove a mass, and then sutured shut, and it was critical that he be monitored for any signs of that vessel leaking.  It could be fatal- or life-altering- if it ‘blew’.  I had to wait until he got settled until I could see him in ICU- very understandable that they had to get him hooked up and an initial assessment done. Seems his nurse forgot about his family and close friend in the waiting room for nearly an hour and a half.  I finally asked if it was OK to see him, only to see his nurse sitting at the desk at the end of the hall. She said , “Oh, yeah, come on back”, as if we had just shown up.  We’d been in the hall when he was brought into the unit, and told they’d come and get us.  That nurse was there.

I initially stayed in the ICU room for only a few minutes, since dad was still sleeping most of the time, and the numbers on the monitor were stable.  I stepped out into the waiting room again with his friend, and we talked.  I needed to run home and give my dog her medicine, and then came back up to the hospital.  When I got there, dad’s IV fluids had been turned off. He hadn’t peed yet, and wasn’t taking enough fluids to compensate.  When he got some IV nausea meds (preventing vomiting was very important to protect that sutured blood vessel), he said it hurt.  There was no saline flush first- just straight to the nausea meds.  He was told that meds sometimes hurt (which is true- BUT, the site and patency of the site must be checked).  Basically, he was blown off. Then, after the medication, the saline flush was the bare minimum to maybe clear the extension tubing (5-6 inch tubing that makes it easier to reconnect IV antibiotics and give IV meds).  The nurses were ALL very nice. That wasn’t an issue. But youth and the inexperience that goes with it (simply because there isn’t the time yet to  gain the experience) aren’t always useful.  It’s not always because someone is ‘still out of it’ from anesthesia.  They still feel pain in IVs- and dad was plenty aware when the meds were given.  More than one nurse did this. When he got to a room (more on that later) the first thing the ‘old timer’ RN did was assess the IV site when he flinched a bit, and said that isn’t right; she changed the site, and dad had no more problems with the nausea meds or the antibiotics that had been leaking into his hand.

When dad was transferred to a room, I was again taking care of the dog’s meds (took me about an hour in the afternoon/early evening to do this) during the actual transfer. I knew he was going to a room, and was fine with that- he was ready.  He had been up in the chair and done well, and walked one time to the end of the ICU hall (about 6 rooms) and back. When I got back, and found his new room, I was told that the nurse loaded up his stuff to carry, his friend had carried some stuff, and dad was left to walk with no support (or WHEELCHAIR) to a room on another part of the same floor.  It was a considerable distance away from his ICU bed. It was the second time he walked at all, and a few hours after he’d even been out of bed at all.  His friend told him to hold on to her arm, at which time the nurse offered her arm- but if he had started to lose  his balance,  nobody (the NURSE) would have had any sort of grip on him. His elderly friend certainly wasn’t responsible for his safety.  I was mad when I heard that. He could walk when he got to the other room- NOT as a means to transfer him there. That is incredibly stupid from a safety standpoint.

Dad had eaten a bowl of soup a while before ‘tranferring’ himself to the new room.  That was the first food in 36 hours besides sips of diet soda.  Since his IV fluids had been axed before he was taking adequate fluids, he was ‘low’ on fluids. His heart rate was OK, and his blood pressure was actually a bit up for him (the dinging and gongs in ICU drove him nuts- he is VERY sensitive to auditory stim….gum chewers in the same area will actually drive his BP up to stroke level)…so I guess from looking at the numbers alone (and not the actual patient), he may have looked hemodynamically stable….but people still need fluids !!  Orthostatic changes don’t always happen in the first minute; he could have easily dropped his pressure en route to the new room from being ‘dry’.

The nurses on the regular ‘floor’ were outstanding.  Both of the ones he had were personable and very attentive to the things that may not seem ‘worth’ the time of an ICU nurse- but can make a huge difference in how care is perceived.  I’ve been an RN for nearly 28 years.  Granted, I’ve been on disability for 8.5 years- but during that time I’ve been IN the hospital a LOT.  I still know the routine procedures and when an IV needs to be assessed more closely.   IV meds aren’t given without a saline flush (and assessment of the IV itself) first.  I’ve spent time around monitors and floated to several types of ICU (including NICU).  That’s only part of the picture.  Someone can have great ‘numbers’ but still have things wrong!

Nurses must listen to the patient, and if a patient is complaining about an IV site hurting when anything is pushed into them, they need to be changed (or at least addressed in some way besides some lame ‘oh, some meds do that’ comment- without looking at it). Sure- meds can be pushed through just about anything…doesn’t mean the vein and IV are intact.  Many of the patients in that ICU were on vents and not communicative- maybe the nurses just got used to dealing with overt, objective issues. Maybe the transferring of someone who could walk seemed OK since most of their patients don’t walk at all.  That goes back to inexperience (and some lack of common sense of youth- and known policies re: transfers).

An elderly patient one day after major surgery with no supportive fluids, or consistent food intake is not a candidate for walking throughout the hospital to a new room, or ignored when they say the IV site hurts. 

There are many good young nurses- but ALL nurses (no matter how many decades they have worked) must always be open to learning.  The young ones need mentors during their first several years- especially in a critical care setting.  IV fluids need to run until the patient is taking in enough oral fluids to equal the rate of the IV, and at LEAST until they pee (providing there aren’t any issues with fluid overload or kidney function; my dad had neither of those).  As a patient myself, I saw why it’s no wonder these younger nurses aren’t doing the basics. As students, they weren’t allowed to do anything but follow an experienced (sometimes still relatively new) nurse during clinicals.  When I graduated, if we didn’t DO the skills, we didn’t graduate (never got to take boards). Period.  There is a huge gap between book knowledge and practical knowledge that is only getting worse.

All of the nurses dad had were so very kind and sweet. That wasn’t a problem at all… but some of the decision making reminded me of my very first semester of nursing school, with trying to get the basic skills learned.  Press Ganey will hear about this.  But this hospital’s ER satisfaction is a ratty %83 per the hospital’s own information anyway. That’s up from the %65 from a few years ago.  The floor and ICU numbers were better, but in ICU I wonder if it’s because their patients often can’t reply or respond to satisfaction surveys and their family members don’t know what is responsible care in specific situations. ?   With healthcare becoming a concierge (hotel-like) industry with these stupid surveys, the nurses focus on the sweet and kind, and less on the technical prowess needed with the sicker patients.  Dad was relatively easy for ICU standards- but he could communicate with them. And they didn’t listen.

When Dad Had Surgery

Those who have read my blogs know that my family is no stranger to various cancers and health issues.  My mom had bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- all cancer. She also had chemotherapy and radiation. I’m a medical train wreck, including leukemia (APL/ AML- sub-type M3), diabetes, dysautonomia, multiple pulmonary emboli (all three lobes- acute, subacute, and chronic -all found at the same time), lung scarring, seizures, multiple concussions, yadda, yadda, yadda…  My dad has been the rock for both of us (mom died in 2003, after being 17 years free of cancer, but with 10 years of dementia caused by the radiation to her brain; she died from sepsis- not cancer).  Dad is the one who takes care of my beloved schnauzer when I’ve been in the hospital.  He didn’t own a bottle of Tylenol until a month ago.

Dad had to go to the doctor for an annual look-see before getting his year of thyroid pills refilled. The doc poked and prodded on his neck, as per usual, and felt ‘something’. He decided he wanted to get an ultrasound to figure out what the hard pea-sized ‘thing’ actually was.  Dad got scanned (I had to reassure him that it was painless and very quick), and instead they found a large (2 x 1.5 x 1.5 inch) mass coming up from the right side of his thyroid.  That’s BIG for the neck area- there are a lot of veins, nerves, arteries, muscle, windpipe, and esophagus related structures in there.  Now they wanted a biopsy.  Numb it up, take some needles and withdraw some of the tissue. They did that, and dad did well… the results, however, were inconclusive.  He was sent to a neck surgeon to figure out the next step.

The neck doc had seen the biopsy and ultrasound results, and felt that it was a cancer, but that it had actually replaced the actual thyroid tissue on the right side; the left side looked OK, at least from the tests.  The ENT surgeon (neck doc) decided to get a CT of the area to check for any lymph node involvement. He did feel that it was some sort of cancer, but reassured dad, and myself, that the vast majority of thyroid cancers are fixed with surgery. Dad should be fine.  But, in the meantime, they wanted to get some more biopsy material, to see if they could narrow down what was going on in there- but bottom line, the thing had to be removed.  It was too squirrelly to leave in there.

Dad is a guy who is 80 years old, and takes a lousy Synthroid pill every day. That’s it. He lives alone, runs around ALL over the place, has a social life that pretty well has him ‘booked’ every day with something, and has really never known anything about chronic or life-altering illness. He has been incredibly blessed.  He had a busted appendix in the early 80s- that was bad. But he got well. He had his gallbladder removed, and aside from post-op vomiting, he was good to go in a week.  He’s been remarkably healthy.  SO, all of this medical stuff that involved HIM was completely foreign.  Mom had numerous surgeries and became totally dependent on him during her last 10 years (he was amazing as he cared for her at home). I’m mostly independent, but when I’m in the hospital, he’s been the go-to guy to make sure my dog is OK, and my laundry gets done when I’m holed up. He has been really healthy.  This whole ‘being sick’ thing isn’t something he really knew what to do with.

While I know that I’m likely to outlive him, I hate even thinking about him not being here.  I have very few people around here that are very present in my life. I’ve got friends- mostly in Texas. The people I know here are mostly interacted with on FaceBook- most I haven’t seen in 30 years.  Dad is the person I talk to daily.  He’s the one who I know always has my back. I don’t have anyone else who could take care of a schnauzer in heart failure with medications (or who even knows her very well), or who I can call for just about anything.   I have some amazing and incredibly dear family scattered about… but dad is just a few minutes away. They are wonderful, yet my physical situation doesn’t make it possible for me to be all that mobile to see them all that much; I certainly feel that I’ve been too much on the ‘fringes’ to just call anyone.  Thinking that something could be wrong- and BAD wrong- with him was a lot to take in.  I have been going to MD appointments with him during this- partly because I want to be supportive, and partly because I’m an RN (disabled, but still have my license since I earned it, and it is MINE) and understand more of the medical terminology, so when we leave, I know how to answer his questions better.

The day for surgery finally came, and while a friend of his got him to the hospital, I definitely wanted to be there before he went into surgery. I wanted to talk to the anesthesiologist about his severe vomiting after getting Versed for other procedures (the anesthesiologist practically challenged me on that- said it wasn’t possible- must be the gasses used, even though it was the only common denominator the times dad had gotten sick- and a few times he hadn’t had ANY gas….time to back off when the doctor thinks he’s always right- wouldn’t help dad, and the doc wasn’t going to listen).   He ended up giving dad Versed, and sure enough, he was sick- though not nearly as badly as other times since they gave him more anti-nausea meds post-op.  Evidently, this type of surgery is more likely to cause a problem with nausea and vomiting because of one of the nerves in that area- which dad didn’t need to hear minutes before going into surgery.  He was already terrified.

They wheeled him off, and his friend and I began the wait.  It took about 3-3.5 hours for the actual surgery, then about 2 hours in recovery. After the surgery, the surgeon (who is wonderful) came out and talked to us.  The initial pathology report sounded potentially ominous. He thought it was a low grade lymphoma, and it might require chemotherapy. It wasn’t thyroid cancer. But until the final pathology reports were back in about 5 days, there wouldn’t be any more information than that.  No point in telling dad part of the story, so he could worry- we all planned to stick with ‘the final pathology reports aren’t back’ which was true, and kept him from spending days in terror thinking he was up against something terminal.  Nobody hears ‘cancer’ and their first thought is that it’s positive.  Since I’d been through extensive chemotherapy, my initial reaction was that he’d have that to deal with, even though most chemo isn’t a daily occurrence.  Most chemo is anywhere from every few months to a few times a week (until the time when pills are used daily for maintenance for a period of time).  I cried. I didn’t want that miserable existence for him…he was always on the go.  Having an indeterminate amount of time to deal with feeling lousy was no way to spend the precious years he has to live.  He’s no where close to slowing down.

Dad stayed in the hospital for 2 full days after surgery. More on that in another post.  He did  pretty well from a nursing standpoint, but from the perspective of a daughter, he had one rough day after surgery and was gradually improving, but it was still tough to see my active, never-holding-still dad lying in a bed, or sitting in very institutional furniture.  My dad who can graze his way through the day eating anything in sight was doing well to get a diet Sierra Mist down.  This is a guy who likes to eat!  He was nauseated most of the time (but can’t be the Versed!).

We got to the appointment to hear the final pathology report…more anticipatory tension.  We ended up getting some relatively wonderful news- yes, it’s a low grade cancer, and he’ll need scans to check the rest of his body for other masses- which may or may not have to be removed, depending on if they were causing trouble.  The mass was well-encapsulated, so not just spreading willy-nilly in his neck.  Also great news. The surgeon thought it had been there for 5-10 years, it’s that slow growing. He’ll be seeing an oncologist after the scans to find out what was next (come to find out, he’ll be seeing my oncologist, so I could reassure dad that he’s a good guy).  I got some label for what the description of the mass was, but when I looked up the words online, it was more confusing than helpful; will wait to ask the oncologist 🙂

Dad is going to be OK.  The doc said that this kind of cancer won’t kill dad. It’s quite probable that he’s going to have another 10 years of quality living.  That is a huge answer to prayer.  Yes, one day dad will die. But thankfully, it won’t be anytime soon. ❤

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. 🙂

September 11, 2001

My dad called me around 8:00 a.m. Central Daylight Savings Time to ask me if I had the TV on. “You won’t believe what they have done”.  They. THEY?. They… I was 5 days post-op from having scalp surgery and vein stripping on one leg, and was still a little out of sorts from the anesthesia and healing process from that.  I dragged myself out of bed and turned on the TV.

At first it was just too much to process. There was smoke coming from both of the World Trade Centers.  They.  It was incomprehensible that fighting a fire at that ‘altitude’ was going to work.  I was having trouble knowing what to think, what to do, what to feel… and I was a couple of thousands of miles away.  They were doing something to us in New York. I saw footage of thousands of people just looking up, their expressions a conglomeration of shock, disbelief, and horror.  How many people were in the Towers?  At that time, estimates were as high as 50,000 regular employees of the buildings and businesses in them. That number didn’t even register in my head.

I saw  replays of the second plane hit the other Tower.  The fireball.  The people who had to have died instantly and then the ones who were trapped filled my head.  The news kept showing people waving jackets and improvised ‘flags’. But they were too high.  When I saw footage of the second plane hit, I knew who they were.  Bin Laden was the one who had done other attacks, but nothing like this. His minions were attacking the United States.  Here.  I called my dad back to ask him if I should go get my car filled up with gas. I don’t know why that was important, but it seemed that everyone gets gas during an emergency.  Nobody knew all of the targets at that point, and I was in Texas. Lots of military bases in Texas.  For some reason gas seemed important. But I was immobilized by what I was seeing.

Another plane hit the Pentagon at 8:37 a.m. CDST. The Pentagon? How could anything get through the Pentagon?  More dead. More trapped. More hurting. Families watching, waiting… More fire.

I watched the South Tower implode at 8:59 a.m. CDST.  How could that happen?  It was a huge building full of people.  Full of people.  How many were trapped, but alert, as the floors started to fall out beneath their feet?  How many knew exactly what was happening as they fell 70-90 stories to their deaths?  How many were instantly incinerated when the planes hit?   How many really jumped?  Then the second tower went down. How many families were watching their loved ones die?  Were they alone? Was someone with them as they watched their lives change forever?

At 9:03 a.m. CDST, the fourth plane went down in Pennsylvania, obliterating it.  The stories were scattered about what had happened, but word was that the passengers got control of the plane and crashed it themselves.  More lack of comprehension, and awe at their presence of mind in the middle of the crisis when I was dumbstruck many states away.  What had they felt? How had that group of people been on the same plane, and able to enact a plan to avoid more disaster and loss of life as they heard of what had happened in NYC and DC?  How had they been able to call loved ones ahead of time and get word about what was happening?  How were those loved ones when they heard news of that plane going down… Was someone with them to offer some token of support in a situation that defies the scope of ‘normal’ grief?

9:28 a.m. CDST- The North Tower falls.  The debris and aerosolized concrete  and building materials blanket the end of Manhattan, while the rest of the city has amazingly blue skies. The tops of the towers are both gone; the city is engulfed in particles of walls, papers, paint, office equipment…people.  The steel frames were bent and twisted when what little of what was left  materialized on the TV screen. It was still hard to really understand the magnitude of what had happened.  I was numb.

The next two weeks, I was off of work because of the surgery, and 24/7 for much of that time, the news channels were glued to the coverage; cable stations ceased programming. I was immersed in the news about the attacks continuously.  For some reason, I couldn’t turn the TV off.  I had to know what was going on. Were there more attacks?  Were we safe?  I’d see the shots of people putting up photos and descriptions of their missing loved ones on fences and walls near the Trade Center site.  They had to ‘know’, but also had to hang on to a bit of hope until there was none left to grasp.

Rescue workers were going through the wreckage of the Towers with buckets, pausing only occasionally when a body was found.  Everyone stopped working, paying their respects to the person coming out in a flag covered stretcher.  The NYFD carried out their priest on a chair. Dead.  Both the NYPD and NYFD lost SO many of their own.  How unfair that anybody die, but they died going in to help the others.  And the buildings caved in.  They didn’t have a chance up in those buildings or near the bottom where the twisted pieces fell.

Dogs wore special boots to keep from shredding their paws on the steel and glass.  They were there for survivors at first, and then those who were temporarily buried in that burning metal tomb.

In total, 2,606 people died in NYC, 125 at the Pentagon, and 40 in the plane crashed by heroes in a field in Pennsylvania.  The youngest to die was 2 1/2 years old.  Ninety countries lost citizens.  Nineteen highjackers also died, but I refuse to add them to the total victim count. In total, more than 2975 people were killed in the span of  102 minutes.  For what?  

In two days, it will be the 11th anniversary.  I still can’t see documentaries about that day without dissolving into tears, and I wasn’t even close to the situation.  This had no ‘borders’ or ‘city limits’. This was an attack on America, collateral damage in the form of foreign nationals- our friends- be damned.  It still makes no sense.  I still wonder how the people in NYC deal with their grief, and how the families of the victims are doing.  I wonder how those who inhaled that stuff  have fared; various illnesses have been reported- in those who were there to help.  My guess is that the actual number of victims is really unknown; the families and friends of those who actually died will never be the same. They are victims,too. And survivors.

September 11, 2001 showed the vulnerability of all of us.  While I’ve gone through a personal attack in my home, the magnitude of 9/11 isn’t something any of us could comprehend.  There are countries that go through terrorism regularly, but not us. Oklahoma City was the closest we got to knowing what that is like. Even the first WTC bombings didn’t come close to 9/11.

I changed that day.  The fact that life can be cut short in a nanosecond at the hands of lunatics was graphically shown for days on end.  For the first few weeks after I returned to work, I was overwhelmingly annoyed when my coworkers talked about everyday mundane ‘problems’ (matching shoes to a dress for some 3rd rate banquet? Puhleeze).  It took me a while to get out of those two weeks, and back into my regular life.

But I’m so insignificant in the grand scheme of things.  What about those families and friends, and now the survivors of those lost in the wars fought in response to 9/11.  In many ways it has been a world war.  I’ll never forget that day, and I hope those who were too young to remember it will grasp the magnitude of that day and learn from history.  I hope that we can regain some of our prior sense of safety without neglecting common sense.  It happened once… we can never guarantee it won’t happen again.  But we have to go on living if we are to really honor those who were lost.  Otherwise they win.