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.  🙂

The Rest of The World Moves On…If I’m Sick or Not !

Even before the leukemia I was a medical train wreck.  I still am.  It bugged me when people would almost apologize for telling me about stuff they were struggling with.  First, I’m not the only person on the planet going through stuff; I get that.  And second,  I’m a nurse (I’m disabled, but I’m still licensed as an RN).  If I can be of use to someone, I’m a happy camper !  It helped me if I could help them.  Still does.

There are times when I’ve felt almost guilty for not being healthy, as if I could fix the stuff that limits me.  And at the same time, I have to know my limits, or it can cause other people hassles.  That was one of the worst things when I was still working; I caused other people extra work.  I hated that.

I don’t ever want to  put my struggles ‘above’ anyone else’s.  Everybody has ‘stuff’, and it’s not a competition. It’s all relative.  For someone who has had a fairly sedate life, having a flat tire on a dark, lonely road is traumatic !  For someone who has had multiple health issues, another one is like “well, what now?”.  Both still have to deal with the situation at the time.  And being grateful for the things in my life that are going OK, or that I still can do makes a big difference in how I see just about everything. 🙂

I think of my figure skating coach when I was 14– her husband murdered their six children.  I can’t imagine having something like that to survive, and then go on with some sort of life.  The survivors of the various natural disasters around the world also come to mind. Someone else always has it worse.  That doesn’t  invalidate what I’m going through, but it does put life in general in perspective.

If my head ever gets so crowded with my own stuff that there’s no room to hear someone else’s struggles,  I’m staying in it too much !

So, friends and family, I’m still here for you!

Hannah’s Last Day

Hannah was my present to myself for my 25th birthday.  She was a salt and pepper miniature schnauzer.  I’d gone and picked her out from her litter when she was about 4 weeks old. When she was ‘ready’ at 7 weeks old, I drove out to Lake Travis (near Austin, TX) in a raging thunderstorm in November 1988, and got her. She and her littermates were all standing up on the covered patio with their dog mama, peeking in the French doors into the house. They were all so cute, but she walked over to me first when the door  was opened.  She seemed to remember!

She was so funny when she was little.  I didn’t have the heart to make her sleep by herself, and since she was a ‘baby’ didn’t want her peeing in my bed.  I put her into a regular baby bassinet that a neighbor had given to me, and put it next to my bed.  She’d give a good puppy howl if she was scared, and as soon as I draped my hand into the bassinet, she’d quiet down and go back to sleep. After a couple of nights, she seemed to understand that I wasn’t going anywhere. As soon as she was potty trained, she slept in bed with me.

Hannah was about 2  years old when she had her first ‘seizure’. By the time I got her to the vet, the vet looked at me like I was a bit on the overprotective side. Hannah was fine, and just stared at both of us.  Back home… She continued to have these ‘seizures’ on and off for years.  They never happened more than 2-3 times a year, so from what the vet had said about risk/benefits of medication, I opted to keep her off of meds. She always bounced back as if nothing had happened.

When Hannah was 11 1/2  years old, she scared me out of my mind.  One single night, she passed out  seven times.  I was up all night with her. She’d get sort of woozy and stagger a bit and, then fall over on her side, twitching.  She’d then stagger to her feet and have to go out to pee immediately. Like right now.  I thought for sure she was dying.  She slept on the couch next to me that whole night between episodes.  She had stopped eating the day before (which was very unlike her), but initially I thought it was some bug.  I watched her, and she didn’t have any vomiting or diarrhea… but then that night. Oy. I thought it was the end.

As soon as the vet’s office opened I called, and got her right in.  We lived in a small town from the time she was 7 years old; they didn’t have an emergency animal hospital there at the the time.  I was glad her regular vet saw her.  He asked me to leave her there for a few hours so he could figure out what was going on.  I agreed, but I hated leaving her.  She was my only companion.  My best friend.

I got the call to come and get her (good news) and when I got there the vet told me that she was in heart failure.  Grade 4 murmur ( a ‘5’ is the worst). He’d given her oxygen and a shot of a strong diuretic (water pill medicine), and she’d peed off a bunch of fluid her heart couldn’t circulate through her body normally, to be eliminated through her kidneys.  I got prescription dog food, three medicines to give her by mouth, and a bottle of the diuretic medicine to give her as a shot if she needed a ‘booster’ to help her breathing, and the syringes and needles for her shots.  He knew I was an RN, so giving shots wasn’t a problem.  He just showed me where on the back of her neck to give them.

She also couldn’t have regular dog treats, or anything with a ‘normal’ sodium level.  I got her some low-sodium peanut butter (to hide her pills in).  She didn’t like it.  She also didn’t like the prescription ‘heart’ diet food, so the rest of that  case of cans was returned, and she got the ‘kidney’ food. It had limited sodium like the ‘heart’ diet.   And she got grapes (this was about 10 years before I found out that dogs shouldn’t have grapes). She LOVED those grapes.  I’d sneak her pills into them, and she acted like I’d given her filet mignon and truffles.

Hannah and GRAPES !!!

She did very well, and had many, many days where she was playing, and acting like she felt really good.  She knew the names of her individual toys, and would get them, and enjoy chasing them.  She still howled when I was on the phone to my folks; my mom had dementia, and one thing SHE still enjoyed was Hannah howling at her on the phone when I said “woof”, or “bow wow”.  I just had to say the words, and she’d do her howling bit.  Mom loved it !

Hannah, and the toy named “Weirdo”- feeling better !

Hannah still had an occasional fainting episode, but within a few minutes (and a quick trip outside to pee) was back to her normal self.   I had told the vet that  I would NOT put my best friend through  a miserable year just because I couldn’t say goodbye.  If she wasn’t going to have any quality of life, forget it.  But he was right- she had some very good months left in her.

About 11 months later, I noticed her start to change  not long after moving to a different apartment in the same complex.  She started not wanting to eat, and her breathing was getting funky.  I gave her the shots to get rid of the fluid (and it did). But it wasn’t working as well.  I had told myself when she was diagnosed that if she started to refuse food completely, that was it.  We were done.  The shots were only helping for about a half a day, and I had to give them to her a couple of times a day for 4-5 days.  Then she completely stopped eating.  My heart started to break.  That night, her breathing was horrible. I knew what was coming.

In the morning, she got off of the bed, and peed on the floor. Then she went and hid in my closet, as if to say she was so ashamed.  I couldn’t get mad at her, she was sick !  It was pitiful to see her hiding from her accident.  She NEVER peed on the floor- she was so good about waiting to go outside, or using the pee pads when I left her in the kitchen to go to work.  I knew I had to take her to the vet.

I sat on the couch before getting ready to load her into the car.   She got up on the couch with me, and climbed on my lap. She ended up sitting on my thigh, and then putting her head on my shoulder.  I think she was saying goodbye, and  it was easier for her to breathe if she was upright, but didn’t have to support herself.  I loaded her into a laundry basket to put in the car, since her balance was a little iffy.  When I took her in to the vet, he said he’d like to try some more oxygen and medications, and he’d call me.  I told him that I could be back there in minutes if it looked like she was getting worse (she was already bad), and he agreed that he’d call me if I needed to come.  I did not want her dying without knowing I was there, and I hadn’t  just dropped her off and deserted her.

I got the call around 11:30 a.m.  I had the kind of desk nursing job where there was flexibility for such things. I’d told my boss ahead of time what was going on, so when I told the receptionist I had to leave I could just go.

When I got there, Hannah was hooked up to an IV, oxygen, rectal probe (temperature), and  heart monitor. She looked spent.  But she also lifted her head a little when she heard my voice. She knew I was there.  I was told to take whatever time I needed, but I think when she put her head on my shoulder earlier that morning, that was our time.  Right then, I had to do what was best for her, so I started taking the equipment off of her, and just holding her.   I was satisfied she knew I was there, and that  it was OK  for her to stop fighting.  I told the vet to just ‘do it’.

She slowly dropped her head as the ‘go to sleep’ stuff took effect. I could feel her full weight against my arms, and then she took her last breath.  It was over. My best friend was gone.  I was told that I could spend time with her.  (the vet’s office had cleared out for lunch, aside from those who were helping Hannah… and they were all in tears as well).  I could hardly see her through the tears, but I did want to hold her for just a few minutes.  They let me take her to one of the exam rooms where it was quiet, and private.  I just cried, and told her how much I loved her, and how wonderful she’d been as my best friend.  I wasn’t in that little room with her for very long.  I’d had 12 1/2 years with her to remember… those were gifts. But I got to say ‘goodbye’, just her and me.

I just hope she knew how much I loved her.

And You People WORK In The Emergency Room?

Early on when I was starting insulin I had some learning curves in the area of low blood sugars (hypoglycemia). I’d been given the diabetic teaching about what to do, and I’d been an RN for 22 years by the time I started on insulin.  Generally, I did well at home getting my blood sugars back up with regular soda or glucose tablets/gel.  One day, nothing was working. I had to call 911 when I hit 37mg/dl, and couldn’t get it to go up no matter what I did.

The paramedics got there, and I was still in the upper 30s.  They gave me more gel, and got an IV going in the ambulance.  I was still conscious and able to talk to them, but I felt BAD. They  radioed ahead that I was coming, and unfortunately I had to go to the closest ER which was notoriously horrible. En route, they gave me an amp of IV dextrose (D50). I had my purse with me that had my backup glucose meter and change for the vending machines. That proved to be incredibly important.

I was given another amp of D50 , and my blood sugar went up to 128mg/dl.  The nurse  (who rarely made eye contact, and just muttered as if I were the most ridiculous thing she’d seen come through the door all day) said she’d called a cab for me; they’d be there in 45 minutes.  I knew that I had to have some source of protein and/or fat to keep my blood sugar from tanking again. The basic information for hypoglycemia says that a snack is needed if the next meal is more than 30  minutes away.  Evidently the EMERGENCY room people didn’t know that basic information.  Straight glucose will spike and then drop. That’s just how it works.  I was sent to the lobby to wait.

Within about 10 minutes, I could feel my blood sugar drop.  I checked it, and it was in the 70s. I got a Coke and some Starburst candy from the vending machines. It wasn’t helping. I got some peanuts to help my blood sugar stay put.  The peanuts didn’t help.  My blood sugar was in the 50s by then.  I went to the triage desk and told them what was going on. I was told I’d already been seen, and a nurse might be able to get out and check on me in a while. Really?  I’d been brought in by ambulance for hypoglycemia, I was bottoming out again, and I was thrown to the whim of some nurse who might get to me?  I was safer in the cab.

I managed to stay in the 50s until the cab got there, and got home where I could work on evening out my blood sugar on my own.  The ER obviously wasn’t going to complete the process with protein/fat sources.  I got some peanut butter, and that helped.  Now when I go anywhere I take glucose tablets or gel and portable peanut butter.  I make sure my blood sugar is in a range that lets me function before I eat the peanut butter, or it will slow down the glucose’s ability to work. The duration of action of D50 is dependent on the degree of hypoglycemia (and the symptoms of low blood sugar are different for everyone at different levels of hypoglycemia).  One person can be unconscious at 40 mg/dl, while someone else can be talking at 30 mg/dl…both are in severe hypoglycemia and need immediate treatment.

I learned a lesson about the emergency personnel’s lack of comprehension on how fully to deal with hypoglycemia.  I have to take care of myself even IN the emergency department at a hospital. At least the shoddy one.  I can’t depend on anyone to help me; I have to be prepared and advocate for myself.

What Do You Mean I’m Diabetic?

As an RN for 10 years in the summer of 1995, I knew the symptoms of diabetes.  I had them all. And I ignored them.  I peed a lot, couldn’t get enough to drink (non-alcoholic, thank you), was losing weight (a good thing), and had times when my vision was so blurred that I couldn’t differentiate the words on a page- it was all just gray blur.  I figured it was just because of a recent diet change (to lose weight), and I’d be fine.  *palm forehead*

I started (or restarted) a job at a community hospital in the Texas Hill Country.  It was their practice to do a urinalysis, drug test,  back x-rays, and have one of the ER docs do a viability check once the offer of employment tentatively had been made (adjusted if anything came back on the back x-rays, or drug test in particular).  I’d worked there before; I knew the drill.  I got a call to go talk to the employee health nurse. That was odd.  I knew Patsy (pseudonym) and she didn’t just call people to her office to chat.  She had something to tell me.

I got to her office, and she was her usual friendly self, but had a look of ‘this is business’ on her face.  She had me sit down across from her desk, and handed me my urinalysis.  She asked me if I saw anything wrong.  It was glaring.  There should be no glucose in urine.  I had a level over 2000.  There was only one logical deduction. I had diabetes.   I just looked up and started bawling.

She told me they’d get me into the diabetic teaching classes; being a nurse taking care of someone was way different than having the disease (boy, she wasn’t kidding).  She’d get me in contact with Charlene (not her real name, either), the in-house diabetic support person (who also taught the classes). And, they’d get me an appointment with a family practice doctor to get this all seen and verified with fasting lab work.  My random fingerstick was 389mg/dl- with no symptoms, and on a basic, ordinary day. Not good.

I saw the doctor, who ordered a fasting blood sugar (240mg/dl) and A1C- 10.2 (should be below 6 for a non-diabetic, and ideally below 7 for a diabetic).  She didn’t want to start insulin until a trial of diet and exercise was done.  She also didn’t want to start any oral diabetic meds.  I was fine with that.  I did well on diet and exercise- and before long had my blood sugars in the normal range for a non-diabetic.

I went to the classes and learned a LOT.  Charlene was a major advocate for diabetics, and knew a lot from having a diabetic son.  She had invaluable information.  She taught the day to day living stuff. As a nurse, I knew the clinical stuff. There’s a huge difference.

I’d been taught the signs and symptoms of low blood sugars, and one of my supervisors would go running for a half of a pimento cheese sandwich if I ever said I felt tired, edgy, shaky, had a headache, or felt my heart racing (never mind I’d be running around all over the hospital floor where I was the charge RN).  She was taking NO chances 🙂

I lost weight to the tune of about 100 pounds total, from the weight loss before being diagnosed, and then by not so healthy ways when I tried to lose weight after being diagnosed (focusing on food and weight loss had been an additional factor in relapsing into eating disorders about 5 months later).   My blood sugars were normal nearly all of the time.

I want to emphasize that this didn’t mean I was no longer diabetic.  I was in control of the diabetes.  There’s a huge difference.  I still had to monitor my blood sugars (though not as often), and let doctors know I was diabetic if I had to have any medical testing done.  I couldn’t go back to my pre-diagnosis state, and just ignore that it was there.  I did have episodic lows, which isn’t that common, but can happen in type IIs not on medication.

It took 12  years before I needed to start medication. That pill made my stomach a mess.  I started insulin later in 2007 ( a few months after the cruddy pill) , and that was the best thing ever for my blood sugar control.  It was some work initially to figure out the dosage of the long-acting ‘basal’ insulin (Lantus for me), and the rapid acting (NovoLog) for before meals.  I had to do a lot of testing before and after meals to get the right ratio down, and I found that the more tightly I calculated my carbohydrates, the more flexibility I actually had.  Things were going well until I was diagnosed with leukemia, and have had bizarre blood sugars on, and now off,  chemo.  I’m still working on getting it back to a reasonable level.  It gets frustrating.

I’m a stickler for numbers. When I saw my AIC going up prior to starting insulin, I wanted something done. I didn’t want to wait until it got into the ‘bad’ range.  I saw no reason not to  be proactive, and waiting around for bad numbers made me mad.  The endocrinologist I saw was dragging her feet so I talked to my Coumadin nurse (a nurse practitioner) who had no problem starting me on Lantus.  My numbers almost immediately got better.  I had to be my own advocate.  The fired endocrinologist wasn’t doing anything productive.

I also learned that having diabetes is so different than taking care of patients with diabetes as a nurse.  There is no connection.  Those sliding scale doses of insulin are useless unless they are very specific for the specific patient’s numbers. If I didn’t tell the doctors and nurses  I have my ratios figured out, I would have gotten some ridiculously low dose when in the hospital.  I had to speak up.  I also know what foods make my blood sugars weird- they’re different for each person.  I know to have proteins and/or fat with carbs to level things out. Some emergency room folks don’t have a clue about that when treating lows.  There was a lot to learn, and in the process I learned to look at each diabetic person I took care of as what they were- an individual.

Now, just to get things back to normal after chemo…that was a game changer.

I’m Not Mad At God…

…but I am mad at the narrow view of the world I was taught by my church.  Don’t get me wrong- it was a great church to grow up in, and I’m incredibly thankful for a Christian upbringing.  Most of my friends as a kid and teenager were church friends.  Most of my social life  (like %90) was through the church, and I loved it. I went to church camp for one week each summer from 4th – 11th grades (summers before that year).   I worked at the church camp for 2 1/2 summers, and those summers were the best !  I still love that camp.

But then I had to go out into the world as a young adult, and be ready for life.  I wasn’t.  I had moved 1200+ miles away from home essentially on my own. It was a bigger city with a very diverse population. That was eye-opening at times, but not anything that caused me any sort of turmoil.  What I wasn’t prepared for was how to deal with crime and keeping myself safe.

Yes, it’s also a parents’ responsibility, but when you are immersed in a church subculture, most of your social interactions and social knowledge/mores come through the youth groups.  Or at least it did. Maybe things have changed since I left high school in 1981.  I left home for good in late 1985.

I wasn’t prepared to assess my own safety in a situation, and protect myself by knowing when it was OK not to  help someone.  I was taught that you help your ‘neighbors’ (that was basically everyone). I wasn’t taught that people can be really nuts, and dangerous.  I got the ‘stranger danger’ talk when I was 6, but I wasn’t told that even people who were known to people I knew can be very harmful.  So, I didn’t have the skills to avoid getting raped and beaten for hours.

I’d been lied to by the brother of the mother of a baby I took care of.  He made up some story about needing my help  to come and get the baby because of a family emergency. My other posts go into more details, but the bottom line was I didn’t have the skills- or permissionto say no to this guy I didn’t know.  I did know he’d gotten out of prison, but I didn’t know anything about crime and criminals, or what his story was.  I was very naive because of my church upbringing.  We were sheltered from the real world in many ways.  I did know that I could say no to the sexual perversions he did (and ignored my pleas to stop), but a lot of that was also because of NO sex before marriage. I felt a funky gut feeling about him before he got to my apartment (longer story)  that wasn’t good, but didn’t think it was OK to refuse to help.  That nearly got me killed.

There are many reasons I won’t go back to my old church now that I’ve moved back here.  I tried it several times, and in several different ‘groups’ (regular service, Sunday singles, Wednesday singles, special events- the special events were OK).  It’s not the same place, and quite frankly, it’s not welcoming. It’s not for ‘new’ people.  I still value my church upbringing, and my core values have never changed. But I’m angry that as a teenager, when I was forming my view of the world, and my place in it, I was given the sugar-coated view of how people behave only in a church setting/belief system.  I got no information about how to assess my safety.  Nothing about what can happen when evil compels a person to commit a crime – or that Christians can be targeted (simply because they’re humans).  It’s not possible to pray away all things that can happen in life.  Christians can have horrible things happen to them.  That doesn’t make them ‘weak’ Christians.

Churches have a responsibility to teach how not to stray from their beliefs, but how to deal with people who don’t share their beliefs, and  what to do with actual evil. It’s fine to pray, but some sort of action also needs to be taught.   They need to teach that there are times when it is foolish to reach out to people.   It is Biblical to assess a situation before jumping in with both feet.

Proverbs 27:12 … “The prudent see danger and take refuge, but the simple keep going and suffer for it.”

Churches breed simple thinking, and following the standard ‘love your neighbor’ and ‘do unto others’ belief system.  Those are great when there is no possibility of encountering evil. And I don’t know  on what planet that is  really possible. But it’s not realistic in this world.

I do believe that God can use what I went through to be of value and purpose to others (Romans 8:28…”For we know that all things happen for good, to them that love God and are called according to His purpose.”).  I have no issue with that, and that verse was actually my ‘mantra’ during the rape.  I had to believe that it happened for some reason that I didn’t know at the time.  I had to believe that God was still with me, and for some reason was allowing the rape to happen.   But I also believe that God could use me not getting raped as well.

For the most part, I’ve come to terms with the rape/beating. I’ve forgiven the man who raped me (God will deal with him).  I’m just now realizing my anger at my church not teaching me how to deal with REAL life in the world.  I’m sure I’ll get over it.  But I hope someone will see this and consider preparing upstanding Christian kids to protect themselves and avoid what I went through.  I still love the Lord with all I am… but I’m not fond of any religious institution that ignores the presence of the real world when educating its youth.

Yes- it’s true we are not of this world, but boy howdy, we’re sure in it.

Diabetes After Chemo

I woke up this morning with a blood sugar of 205mg/dl.  Very NOT OK.  Before chemo it was between 65-85 mg/dl nearly every day, and rarely over 100 mg/dl (where it’s still tolerable).  After getting off of all chemo, it’s been around 140; sometimes lower.  I don’t know what’s going on this morning.

Ever since being on chemo, my blood sugar control has been totally nuts. There has been no control, but oddly, my A1C in February was 6.7, or around there. I was amazed. I expected it to be over 7 for sure. Usually it’s well below 6.  I’ve had great control, with a fair amount of effort.  My body is still figuring out it’s new normal since the leukemia.  The blood sugars (and need for more insulin) don’t help the weight loss issue.  Insulin stores fat. I need to lose the forty pounds I gained while on chemo.

I have to admit, my carb counting has been ‘fair’.  I know the carb counts of most things, and do look at labels, but I’m not doing the extensive counting that I did before. I need to get back to doing that.   I don’t want to go blind, lose a leg, or have kidney failure.  Nope.  Don’t want those on top of what’s already wrong with me; I’d end up in assisted living before I’m 50 years old.

I took the usual amount of NovoLog insulin this morning, and added a bit because of the psycho fasting blood sugar.  Now (2 hours later), my blood sugar is 135mg/dl.  I’m glad it’s going down, but not sure I’d planned for it to drop that fast.  It still needs to get considerably lower before it’s a problem.  I’ll be sticking my fingers a lot today.  It’s sort of a ‘sick day’, except I can’t figure out what is ‘sick’…

Chemo changed a lot of what had been controlled: my weight, my blood sugars, and my insulin dose.  I’ve been off of chemo for nearly a year (11 months).  I’m going to have to go back to the rigid counting and figure out the new insulin:carb ratios.  My I:C ratios had been so steady before.   It’s been nearly 2 1/2 years since the initial diagnosis.  I have to remember my ‘old normal’ way of dealing with the diabetes, and apply it again to this ‘new normal’… which isn’t normal at all.  It’s a lot like starting from square one.

My physical situation is such that sitting exercises are all I can do.  If I walk more than the distances inside my apartment, I have to use a walker. Or shopping cart.  My balance gets iffy. So exercising is a problem.  I’d love to walk around the neighborhood on cooler days.   That IS my ‘old normal’ and ‘usual decrepit’ – LOL.  That is back to ‘normal’, which hasn’t been ‘normal’ for a long time.  I’d torn my left ACL and meniscus (mildly) the summer before the leukemia diagnosis, and because of beginning to feel lousy (thinking I was just being a slug) I postponed the knee replacement that was recommended.  When those big ball players roll around whimpering or screaming on the field after their knees go out, they aren’t being weenies- that HURTS. I’d been using a walker in my apartment up until the morning I was admitted to the hospital when I was diagnosed with leukemia.  Being physically limited is nothing new.  Anyway, I’d like to exercise more, but it isn’t generally safe.

So, I’ve got to buckle down and get these blood sugars under control.   I’ve got to lose weight. And I’ve got to get it done without triggering old eating disorder habits.  Sometimes it seems overwhelming.  Sigh.  But I’ve got to do something.

ChemoHairapy

Losing the hair was one thing. The odd assortment of characteristics it had growing back was quite another.

The first time it grew back it was fuzzy and thin.  Kinda nice, actually.  I’ve always had really thick hair, and with an intolerance to heat from an autonomic nervous system disorder, that wasn’t a great thing.  That first new sprouting was sort of like a chinchilla’s butt, in texture and color.  Not bad !

Then I lost my hair again, and what grew back was very, very strange.  First was the color- it changed with the angle.  It was either dark brown (normal) or a navy ship gray- depending on how I was facing someone.  I was probably very nauseating to look at when I shook my head. The second issue was its defiance of gravity.  It grew straight UP for about three inches, at which time it lilted over.  Eventually it had to lie down, but it didn’t go down without a fight.  Drove me nuts. It was like a chinchilla and porcupine got busy and dumped their mutant offspring off on my head.

Now, it still gets to some length and starts to bend.  It’s not curly. It’s bent.  The part in front of my ears just goes nuts, and looks like glue-on sideburns. That shake. And grow forward. Uh huh. Nobody told me about all of this.  I knew it would be different.  I wasn’t expecting it to have a life of its own.

Chemicals in My APL Soup

Cytarabine (Ara-C), daunorubicin, ATRA (all-trans retinoic acid), arsenic trioxide (Trisenox),  some more daunorubicin, then methotrexate, more  ATRA, and   M6 Mercaptopurine.   Hmmm, yummy !

Those are the standard drugs for the M-3 subtype of acute myeloid leukemia.  Or, for those in the know, acute promyelocytic leukemia, which accounts for about %10 of all AMLs.  Some people get some of those, I got them all over nineteen months.

When I was first diagnosed, I spent six weeks in the hospital. I started getting ATRA (pills) on day 2 when the lab work was back to know that’s what I needed.  The next day, I started the first of three days of daunorubicin (the red stuff), and  the first of seven bags of Ara-C (each bag hung for 24 hours over 8 consecutive days).  I only thought I felt bad when I got there- but even now, I realize I was too sick to really care how sick I felt.  Overall, however, the side effects were managed well.

The biggest side effects involved my mucous membranes (mostly my mouth and innards) and hair loss (which I couldn’t  have cared less about).  There was some “Magic Mouthwash” stuff that had some numbing medicine and other ingredients to make my mouth feel less like a gravel pit whenever anything touched it.  Otherwise, it was like all of the little wrinkles on the roof of my mouth had smoothed out.  My innards were just sensitive, and there was an express route between my stomach and back door.  The back door got tender.  I only puked once.

My tastebuds died.  Well, actually they just got very ill. Or psychotic.  I craved kosher dill Claussen pickles for a while, then sandwich cookies (which that dear dietician managed to find in various flavors).  I was losing 5 pounds a week (muscle weight), and even though I wasn’t exactly going to die of starvation, I needed to keep my nutritional status up.  The dietician was in my room a lot, bless her heart (and I mean that in a good way- not how it can be used in the South, ha !).  I was loving one food one day, and the next day I never wanted to see it again. She had every menu in the building in my room, and I was allowed to order from any of them.  For a while, I even craved baby food pears and applesauce.  When they sent the jar of peas, I bailed on that option. Bleh.

The hair loss was not something I really cared about, aside from the straggly hairs that refused to give up.  I saw scalp hair loss as an all-or-nothing event.  If most went, all had to go. The strays near my forehead were unceremoniously whacked off by my father with some poultry shears he found in my kitchen.  Chicken scissors for hair trimming. Well, OK.  It worked.  My eyebrows, arm and leg hair, and any other hairs were MIA for over a year altogether.  No biggie.  I didn’t want a wig- so if I felt really spiffy, I’d wear a bandana, or a hat crocheted by my bio-mom.  I’d gotten my first crocheted hat at the hospital, but my favorites were the ones made for me. 🙂

After the induction chemo, I took the ATRA until starting the consolidation chemo – which consisted of arsenic.  Yep. Arsenic.  Trisenox, when not used in first degree murder.  I got fifty doses; two 25-dose cycles.  I had to start out the first week in the hospital to be on a heart monitor.  Then I went to the hospital every day I got the stuff to be hooked up for monitoring. I couldn’t be in the chemo suite at the doc’s office.  I was really tired from the arsenic, but that was the main effect. I’d been told it’s really hard on the stomach, and nausea/vomiting were common; I never puked from arsenic.  I did wonder if I’d croak from heavy metal poisoning while being cured of leukemia.  Hmm. I had a brief second round of daunorubicin, but had to stop that since my heart function was starting to look iffy.  Side effect of chemo drugs.  That and weight gain… I didn’t end up looking like I’d been on chemo; I looked like I’d spent six months eating food from the county fair.

Then I started maintenance… ATRA (did I mention that stuff is about  $120K if someone doesn’t have insurance? ), methotrexate, and M6-mercaptopurine, all on different schedules.  I was supposed to take those for a year.  I made it for 11 months.  The muscle and bone pain were pretty intense, and my  doc said I’d had enough.  I told him I’d stick it out if it meant staying alive, but he said no- I’d be OK.   I’d had no relapses since going into remission in the hospital that initial time, and no major issues come up since the shingles during that last week of arsenic.  My lab work had stayed stable.  I was done.

I’ve been off of all chemo for 11 months.

Mom’s Final Days…Please Excuse Me While I Bawl My Eyes Out

This is still rough.  And yes, it’s long.

Mom had been through so much, and survived.  She had been through breast cancer, pre-cancerous tumors in the other breast (so bilateral mastectomies when all was said and done), reconstruction, metastasis to her right lung (so part of her lung removed), and then metastasis to her brain (so removal of a right frontal brain tumor, roughly the size of a golf ball). In the mix, she’d also had a hysterectomy, gallbladder removal,  and ankle surgery (she fell and broke it in the bathroom).   There were countless hospitalizations, radiation, chemotherapy, rehab, and progressive decline.

By March 2003, mom had been cancer free for 17 years.  Considering the number of sites  where she’d had it , that’s pretty amazing.  But the radiation for the brain cancer had left her with dementia.  Bottom line- she was goofy. Her memory was horrible.  She could still answer simple questions, and liked going out on rides in the car. She still had some things she enjoyed (if it came in the form of a candy bar, so much the better).  The day before she ended up in the emergency room in Sun City West, AZ, she had been to an art opening and visited with friends.  She may have had no memory of it later that day, but for the moment, she was happy.

Dad called me one afternoon to tell me something was wrong. She just wasn’t  right. Something had ‘dulled’.  I told him she may have had a seizure and to keep an eye on her. If he saw a seizure, dial 911.  I got a call not long after that from him; they were in the ER at Sun City West Hospital.  She’d had a seizure, vomited, and then been out cold when 911 got there.  He sounded scared, and he never sounded scared with all she’d been through before this.  I told him to call me with any updates.  I was near Chicago, so really depending on his reports.  I felt helpless.  I’m an RN.  I want to help ‘fix’ things when family and friends are sick.

He called me  a while later saying that they couldn’t get blood from her to do tests. Huh? This made no sense; they’d gotten an IV in her and had fluids going. Her urine test showed an infection. With the change in her normal behavior and the positive urine test, that told me she was septic. That is basic, BASIC knowledge in the medical field, especially with older patients.  I told him to tell them that they needed to restrain her, and get the blood. They refused to use restraints even briefly- so did an incomplete workup for their convenience.   We exchanged a few more phone calls (me getting more and more angry), and the bottom line was they were sending her HOME with him on oral antibiotics (well, their rental home).  A partially conscious woman with a urinary tract infection bad enough to make her lose consciousness and seize, and she was being sent home.  I was beyond livid.  Dad was terrified.  It took three people to get her into the car (a clue?), and he had to get help from friends on the other end to get her to bed.  Somewhere along the line, they got the antibiotic pills.

I’ll never believe that the ER people did what they needed to do because mom had dementia and was a ‘no-code’ (but she wasn’t actively dying yet; the no-code was not in effect).  And the hospital was full (like they couldn’t move her to another hospital; she NEEDED IV antibiotics and fluids).  The doctor signed off that she was safe to fly later on… that’s nuts, but she’d be out of his hair.  I’ll never know if it would have made a difference.  I just wanted her to have a chance. As it ended up, dad and I have to look at the one positive: she didn’t end up curled up in a nursing home, not knowing anybody or anything.

Over the next few days, dad came up with various ideas on how to get her home. She was taking the crushed pills in applesauce, and when I’d talked to her, she sounded exhausted but was answering the usual basic questions. She was doing better- but not great.  I didn’t know exactly how badly her body was doing, but I knew I supported dad’s plan to get her home.  Except the plan to drive her home.  I had visions of her dying en route, him being arrested for transporting a body, and mom left in the car in some car impound area…. sometimes an imagination is a bad thing.  I made him  promise me NO DRIVING HOME. He promised.  The final option was for her to fly to O’Hare where a friend of dad’s would drive me in with his van so we could let mom lie down in the back while he drove us back home. Dad would then drive on his own, and be back in about three days.  When I talked to her, I was satisfied that she was ‘back’ enough to be near her baseline.

Well, part of that worked out.  Dad got to Sky Harbor Airport in Phoenix, and the folks at American Airlines said she could fly, but only if he was with her.  He left everything but what he was wearing and got on the plane with her.  A few hours later, they were in Chicago.  I was allowed past the security gates to help get her off of the plane. The folks at American Airlines were wonderful. Her wheelchair was waiting (as were a few others- must have been handicapped day for flying), and the flight attendants said “Oh, you must be J”…. Uh, yeah?  Mom  smiled when she saw me, and we got her into her chair, and headed for the van.

When we got to the van, it’s like mom knew she was near home, and partially collapsed. She didn’t have to fight. I was getting nervous that we wouldn’t make it back home to the hospital where her doctor practiced. (why do they call it ‘practice’?  Shouldn’t they ‘know’ at that point?) I’d brought a blanket to use as a sling to ‘arrange her’ in the back of the van- which dad’s friend helped me do while dad put the wheelchair in the way back part of the van.  Dad was muttering about getting her home to bed, and after a good night’s sleep, she’d be fine.  I looked at dad’s friend, and shook my head no.  We weren’t going home. We were going to the ER.  If I had to get out at some toll booth area, and do some psycho dance, we were NOT going home.

Mom moaned most of the way back to our home town. Somewhere along the way, dad knew that we needed to go to the ER (thank God).  We got her there, moved to a stretcher from the parking lot, and thus began the end.  The ER people knew by looking at her that she was going to be admitted, and when they started an IV, they got blood.  Hear that, Sun City West ‘Hospital’???  It was BAD.  She was septic (duh) and her kidneys were failing. She also had a high blood sugar (she wasn’t diabetic and not on steroids).  She did know the name of her doctor when he came in to see her.  Dad and I stepped out into the hall with him and one of his first questions was about resuscitation measures that we wanted.   We’d discussed this before. If it got to this point, comfort was the primary issue.  It was fine to do fluids and antibiotics in this situation since she was in and out of lucidity, and she theoretically could get better…but her kidneys had never looked this cruddy. She was dying. The blood sugar issue wasn’t helping anything. Her white blood count wasn’t good.  We decided to get her admitted, see her through that and then go home to bed since she was relatively stable.

I’ve seen so many people die I’ve lost count.  That sounds rather cold, but as an RN of 18 years at that point, it just wasn’t possible to remember them all.  I knew the signs. I was seeing some of them, but I was still in and out of denial.  I felt OK going home that night though.  Dad and I told the nurses to call us if anything changed; we lived about 5 minutes away. We went home. She was awake, and tired, but looked ‘settled’.

The next morning, mom was getting the last part of her bath when we first got there, so we waited in the hall for a few minutes.  When we went in, she was awake, and recognized us. She was even drinking some nutritional juice-type drink (not the milky based stuff). She’d had a seizure during the night, and got some IV medication for that, but was doing a bit better. The nurses were wonderful about letting me see her lab work, and her white count was down, mostly from being diluted somewhat from the IV fluids. It was still in the septic range, and her kidney function was still in the ‘not-going-to-get-better’ range.  But she looked a bit perkier.  That was nice for the moment.

At lunch, dad’s friend (who did the van driving the day before) had offered to fly to Phoenix, and get the stuff from the rental house. He then offered to drive the car back to the Chicago area.  Wow.  We all went to the hospital cafeteria to talk about the plans.

We got back to mom’s room about an hour after we’d gone to the cafeteria, and there had been a huge change.  She was beginning to mottle, and was groggy. I’d seen that  mottling SO many times, and that is one of the things that people don’t come back from.  It’s when the circulation starts to shut down, and blotchy dark purplish-blue areas are visible.  Hers had reached her knees.  I ‘knew’.  I told dad that if he wanted to tell her anything he needed to get after it; she was dying. He figured she’d be fine (after all, she always got better, right?), but must have sensed something about my reaction. He asked me to step out for a few minutes. I did.   She was quickly going into a coma, and even at that point, I’m not sure how much she was hearing.  But it wasn’t just for her. I wanted HIM to have closure.  Then I took my turn.

During that afternoon, she went deeper into the coma, and I’d let her nearby brother know earlier that if he wanted to come, it was probably better to do so sooner rather than later; he and my aunt and cousin came.  I was also in contact with mom’s other brother, and only sister.  Mom’s mother was on her way back from  the winter in Florida and with the brother in Tennessee.  They were making plans to drive up here (near Grandma’s home also).  Her sister was looking for a flight ASAP.  A very few family friends also came; we didn’t make it broadly known what was going on.

Mom never regained consciousness, and I decided to spend the night at the hospital. She couldn’t tell anybody what was going on, and I wanted to keep track of how hard her breathing was (or wasn’t), and if she showed any signs of pain.  It was a long night. She did start having some respiratory patterns and sounds that indicated she was having a bit of trouble. I asked for some medication to be ordered, and the nurses were great about contacting the doctor (at about 3:00 a.m.) and getting her something. That helped her breathing ease up.

That was the same night Elizabeth Smart was found alive in Utah.  I’ll never forget that. One family was welcoming someone back home, and I was watching someone leave this earth.  I still remember that so clearly. CNN was all over it.  Mom would moan occasionally, so I’d move the chair closer to the bed and hold her hand and talk to her. I also let her know (whatever she could hear and  understand) that dad and I would be OK. If she wanted to keep fighting and come home, that was great!  We wanted her with us- but if she was just so tired of fighting all of the medical stuff she’d had go on over 20+ years, it was OK to stop, and  let go.  I also let her know that whatever had gone on in our relationship, everything was OK.  We were good.  It’s important to let folks know that the living will be OK, and give them ‘permission’ to be free.

She made it through the night, and remained in a coma.  Dad came back up in the morning, and we both stayed during the day.  Another couple of friends came by, but mostly we answered the phone calls, and just talked to each other.  Mom would only respond to discomfort, so we let her be.  I did agree to the air mattress the night before to make her skin less likely to break down- nobody knew how long this was going to go on (though the mottling is not generally something that happens until near the very end).  By that morning, her blood pressure was so low they needed an ultrasound gizmo to check it- so we didn’t bother with that other than once a shift.  The blood sugar wasn’t going to get fixed- so no point in making her wince and groan with each fingerstick and insulin shot; they weren’t doing much good anyway.  Had she shown signs that she was going to get better, I would have agreed to those things. At that point, it was just pain. She had no periods of even being remotely awake, and the mottling was getting darker.  She needed peace and comfort.

Dad’s friend had made it to Phoenix, and found the obituary mom had written for herself many years earlier, and left in her address book. He faxed it to his wife, who brought it to the hospital for us to have handy.  That was a huge help.

I was so torn about what to do that night. I didn’t want her to be alone, and dad wasn’t up for pulling an all-nighter (understandably at age 70).  I needed to get some rest if I was going to work the next night at 7 p.m.  But I really didn’t want her to be alone. The nurses were great, but it’s not the same as having someone next to the bed, watching.  I finally had to make the decision that I’d have to go home that night so I’d be OK to work the following night.  I hated that.  Dad knew I was struggling with that, but we knew that we could both be at her bedside within 10 minutes of getting a call from her nurse.  And we told the nurses to call for anything.  Anything.

Around 8:30 p.m. or so, her breathing got funky.  Like ‘here it comes’ kind of funky, but also somewhat labored, so I asked for the medication for her breathing to be more comfortable.  The nurse gave it, and it did help. Her breathing became less gravelly. (She didn’t have the ‘rattle’; it was different). At about 8:55 p.m., her breathing became sporadic, and I told dad this was the last pattern I usually saw ‘at the end’.  He was still hanging on to the idea that his partner of 46 years was just going through a rough patch and would recover.     I told him no. This was it.  And it was fast. Really fast when it finally happened.

At 9:00 p.m. my mom took her last breath. She was gone.  Dad and I were on either side of the bed, holding her hands. She wasn’t alone. She didn’t have any more pain or confinement to a body and mind that had been ravaged by disease and the effects of radiation.  She was free.  There was a brief moment a couple of seconds after she died when she looked like she had 30 years earlier.  I don’t know if my fatigue was making my vision wacky, or what- but I saw my mom. The one I’d known before anything was medically wrong with her.  She was at peace. I’d like to think that’s when she saw Heaven, and the Lord she loved so much.  She finally got to see the two baby boys that had each died soon after being born, that she’d never seen in life.  She wasn’t held back by anything.

On March 13, 2003, she was healed.