The Weird Thing About PTSD

I was raped, sodomized, and beaten for six hours back in January 1987.  Twenty-eight years ago.  Initially, I knew what I “should” feel like, but didn’t really register much.  But that wasn’t really anything new- I’d been pretty good about not registering specific feelings for a long time.  As I’ve gotten older, and had more life experiences, the specific emotions have become much more identifiable.  And unpleasant.  I’ve been through enough therapy to recognize specific feelings, as well as have a greater understanding of what others go through who have been in similar situations.  And sometimes, not so similar situations.  Those can be triggers as well.

I had never been much of a crier.  I’d boo hoo once in a while, but for the most part, I could suck things up and move on.  That has changed.  Some of that is from a good thing: I’ve been able to understand how other people feel with both good and bad events.   That has been a huge ‘plus’ in so many ways, but it also makes my own memories and reactions that much more intense.  I’m a regular faucet now whenever there’s anything that remotely sets off my own memories.  Doesn’t even have to be all that similar.  Just has to trigger a feeling of some sort.

With another parole protest going on, I’m even more on edge.  For the most part, my daily functioning is ‘normal’.  Movies and TV shows can be really tough.  The news stories can be absolutely grueling.  I feel SO badly for those who are violated and/or lose a significant part of their life.   I have to ‘pace’ my exposure to the news.  With TV and movies, I generally have seen most of the episodes before from several series, so know to ‘brace’ myself during specific scenes… but sometimes even that doesn’t work so well.   In one episode of “Law & Order: SVU”, ‘Olivia’ walks out into the squad room after having been held hostage by a serial rapist/stalker who takes her out of the city to a seasonal house (that doesn’t belong to him).  She beats the snot out of him, and has to make a statement.  When she walks out into the squad room, it brings up all sorts of feelings of when I had to walk out of the apartment of my neighbor, after being raped.  There were news stations/cameras and people lining the sidewalk, and looking at me.  One of them lowered her camera, and looked down- giving me the first bit of dignity after that life-changing event.  When ‘Olivia’ walks through that group of people, it stirs up so much.

Some would argue that watching such shows as “Law & Order: SVU” and “Criminal Minds” are poor choices given my background, but I disagree.   In those shows, they show as much as they can about the impact that crime has on the survivors (I hate the term ‘victim’) and, they get the bad guy in 48 minutes.  The good guys win.  There are characters that include the ‘collateral damage’ of crimes against individuals.  And sometimes, the shows are hard to watch.  But it was much harder to live through an event that would be a plausible story line for those shows.

I’ve been much more ‘tender’ this time around with the parole protest.  I’m getting so tired of them, but at the same time, I feel responsible to keep fighting to keep him locked up.   He doesn’t deserve to be out. He agreed to a 60 year sentence in a plea bargain.    He offends EVERY time he’s on parole. Since he was 18 years old, parole is just another opportunity to rack up more ‘victims’.  I’m angry that the woman he attacked prior to attacking me just blew off sentencing.  Had she made sure he got as much time as possible, I wouldn’t have been raped.   I don’t want that same burden on my shoulders.  I may not be able to control the decisions of the parole board, but I am involved.  If they let him out, it’s on them.

In the meantime, I have to talk myself down now and then.  And sometimes, I have to just let myself cry and feel whatever is going on.  On good days, I write.  And every day, I have to remember how much I have to be thankful for.   PTSD isn’t something that gradually resolves in a predictable manner.  It comes and goes when the triggers set something off that is associated with some memory or feeling.  It doesn’t have to make sense.  It just is.

 

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.  ❤

The Life of Cancer

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

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

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

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

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

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

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

When I Wasn’t Me

For the most part, I’ve dealt with the rape (January 10, 1987- Austin, TX) relatively well. Initially, there was a lot to deal with to prepare for the trial, and after that I just tried to get back to ‘normal’ (nothing is ever the same after being raped).  I coasted. For two decades.  I knew that Numbnuts (what I call  the ‘being’ who raped me) would be coming up for parole review in 2006 (? I’d have to dig up the files I’ve got for the exact date).  I had been seeing a therapist to help deal with being on disability, and she and I agreed that seeing someone who dealt with rape and sexual assault issues would also be helpful.  So I did.

During this time, I was also on some medications for the chronic medical issues I’ve got, and had some interactions that took a long time to get figured out. Between the weird physical stuff going on (medications and diagnoses) and the stress from the parole review, I got really batty. It was frightening and confusing, and made me a horrible client/patient to have to deal with for any therapist.  I had been in therapy before, and seldom called a therapist after office hours. During the ‘crazy year’  or however long it was, I wore those two therapists o.u.t.  I feel horrible about that; they were both very kind and compassionate. I was a mess.  I didn’t know that the medications (particularly a muscle relaxant combined with my other meds) were having some of  the effects that were going on, and part of that included increased ‘panic’.  I’d actually have mini-strokes from my blood pressure dropping too low, and was constantly in the ER (and very disliked by the nurses and MDs there- they didn’t figure out the medication thing either).  I’d lose the ability to swallow normally, and my balance was shot, which also stirred up the intense anxiety. It wasn’t unusual for my blood pressure to be in the 50s/30s….at home alone.  I’d freak out- thinking it was from all of the chaos going on with being on disability, and the loss of my life as a working RN, as well as the stress of the parole review.  I thought it was all in my head…and it wasn’t.  There were times the therapists called 911 to come to my apartment and get me.  Sometimes, I’d be passed out when they got there (I don’t remember what all was going on- or how they got me to unlock the front door…..?). I woke up in the ER many times, trying to remember why I was there.

I actually figured out the problem with tizanidine (muscle relaxant) and the other medications myself, and once I talked to my primary doc and changed to a different muscle relaxant (for fibromyalgia), the weird TIAs (mini-strokes/transient ischemic attacks) and many of the blood pressure plunges just plain stopped (with the dysautonomia, blood pressure issues are just part of life). I already had some scarring in my brain from the TIAs.  By then, those two therapists had turfed me to someone else.  And not long after that,  I had multiple severe blood clots in my right lung, and had to deal with that… but the memories of those many, many months of being so ‘not me’ aren’t good.  It’s all very detached and just weird.

I’d wake up (or never get to sleep) and be in a bizarre unprovoked panic that I couldn’t deal with, and I’d call one of those poor therapists either late at night or extremely early in the morning, to help talk me down from wherever I was.  I’d be so spaced out, but still absolutely unglued and removed from the fact that I was safe where I was- nothing was actually happening to me.  The years of shoving the rape to the side and the new crazy anxiety were life altering if I hadn’t already been on disability for physical disorders (including seizures and dysautonomia that caused problems with losing consciousness and being very foggy -sometimes when I’d be on the phone with one of the therapists). Other times, the seizures and/or dysautonomia happened first (there were times when I didn’t know which was which- I’d just wake up exhausted and more spacey), and I guess  I’d call in the middle of the episodes.  I don’t remember now exactly what was going on that I called, other than remembering months of weird panicky episodes that were very uncharacteristic of me.  And being a therapy client from hell.

Prior to the parole protest/review period, I’d spent a fair amount of time becoming a rape survivor and ditching the rape ‘victim’ title. I hate the ‘victim’ role in myself and others.  But I sunk way back into the victim role. I couldn’t stand that regression.  It reminded me of earlier times after the rape, and I wanted distance from that.  Some of the emotional upheaval was somewhat expected, I think. For twenty years, Numbnuts had been contained, and the possibility of him getting turned loose was terrifying (even though I knew consciously that it was a remote chance he’d ever find me).  I knew that there would come a time when the TX Department of Criminal Justice would have to turn him loose, because of mandatory release times…but I wanted it prolonged. After many letters and copying the many old newspaper articles to send to the parole board, the initial parole review/release was denied.  By then, the medication changes had been made, and life settled down.  But so much was still a fog during those bad months.

I was a really ratty therapy patient.  The medications were a big part of the physical reasons for the amplified anxiety.  The reminders of what Numbnuts had done to me were oppressively  vivid.  The way my life changed after the rape (and how differently it all turned out from my dreams and ‘expectations’ of a family of my own) was also in my face.  A  lot was going on.  But I’m not sure I really accept that those reasons are what caused so much to fall apart, and drastically change my ‘normal’ life (on disability) to one of childlike neediness (I’m repulsed writing that).

In the years since then, Numbnuts has been back in prison, after more protest letters. I’ve survived a very aggressive form of leukemia and 19 months of continuous chemotherapy of some form.  I’m dealing with significant diabetic issues and blood sugar control problems post-chemo.  And I’ve done it without therapy, and no freaking out in the middle of the night.  I still have seizures. I still have dysautonomia, that actually seems to be getting worse from the standpoint of heat intolerance (I had to shave my hair off; I can’t tolerate having heat from hair) and activity intolerance.  I can’t leave home without an ice vest to prevent overheating.  Other physical issues aren’t good.  And yet, I keep going on my own.  Blogging helps. It’s some sort of contact with someone, somewhere.  It’s ‘open’ 24/7, and only ‘bothers’ those who choose to read it. 🙂

Cancer’s New Normal

When I was going through the initial induction chemotherapy after being told I had AML/subtype M-3 or APL (acute promyelocytic leukemia), I just sort of went with the flow. My emotions were blunted- partly from fatigue, and partly from not really having the time to wrap my head around the idea of cancer before chemo started.  I was admitted from the ER after having some shortness of breath, and didn’t leave for 6 weeks.  I did have some warning that something was wrong, but I didn’t know what until I was admitted to the hospital oncology floor, and the bone marrow biopsy was done.  It was a whirlwind of life changing forever.  And yet, I’m very lucky.

I’ve written about Jeannie Hayes (the local NBC affiliate anchorwoman) who had 2 days between diagnosis and death. This week a friend of mine had a nephew who was OK on Thanksgiving, felt a little bad over the weekend, and then went from the local ER to being life-flighted to a children’s hospital; he was in a coma by the time he got there…and died the next morning. He was 11 years old.  The information I’ve got tells me it is the same thing… APL.  Nobody had a chance to even get used to the idea of cancer before they were making funeral arrangements.  That’s two families (and their friends) who had their lives changed forever from a disease they barely had time to learn how to pronounce.  Two people in the last month who died within 2 days of diagnosis, from the same thing that I survived.  It’s shaken me up a bit…. I feel so badly for those families, especially since APL is one of the most curable leukemias if its caught early enough.  Mine was caught purely by ‘accident’ with annual diabetic lab work.  I had no symptoms telling me to get checked out.

I never spent much time before now looking at how fortunate I really am.  It was simply what was happening, and I had to deal with it. But now, I’m gaining a whole different perspective on what very easily could have been the end of me.  The average survival from the onset of the disease and death (for those who are undiagnosed/untreated) is about a month.  Many people are diagnosed during autopsy. It’s that fast.  I didn’t get in to see an oncologist for 2 weeks after that bad lab work, and that was because someone else cancelled- I had originally been put off for over a month. I’d seen my lab work. I knew I needed to get seen, so I had my doc make a call and get me in sooner.  Then there was the delay of another week for the bone marrow biopsy.  I didn’t make it that long before I went to the ER with breathing problems.

My chemo lasted for a total of 19 months, with the IV stuff in the hospital, IV stuff (arsenic) as an outpatient on telemetry in the oncology unit, and then a year of ATRA  (all trans retinoic acid- think jacked up vitamin A), methotrexate, and M6 mercaptopurine- all pills. They have all had effects that have lasted longer than actually taking them.  My blood sugars are just now getting back into some decent range (I’ve been off of all chemo for 14 months). My weight is horrible (I gained a lot). And my skin is still kind of weird. BUT, I’ve been in remission since the end of induction.  NO relapses.  I’ve had a few annoying things (shingles, infected bug bites on my face- or that’s the guess, etc) that delayed things a few times. The muscle and joint pain towards the end of the year on oral meds was pretty brutal, but if it meant I’d survive, I could put up with it.  I actually got out of the whole thing fairly unscathed.

Now comes the rest of my life, when any little bump in the road health-wise has my cancer radar spinning like an EF-5 tornado.  I’ve got a bunch of other things going on with my health, so I’m never sure when I should pay attention to something, or when it’s just my life as I know it with a little hiccup. Last spring, I had a mammogram, MRI of my brain, colonoscopy, upper endoscopy (EGD), skin exam and biopsy, and yearly (ha !!) girly exams.  They all came out fine, for which I’m very thankful.  I’m waiting to feel relieved and like I’m really going to be OK for the long haul.  The official ‘5-year mark’ doesn’t hit until April of 2015.

And I’m not sure that’s going to make me feel really in the clear.  I watched my mom have bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- and then chemo and radiation. The radiation to the brain left her with dementia for most of the 17 years she lived without additional cancer.  Every time, they said they ‘got it all’… is that even possible to say with complete certainty?  I don’t mean to sound like a total buzz kill for those doing well- not at all.  I’m a nurse. I’ve taken care of metastatic cancer patients, and seen them go through hell.  I just need to work out in my own head when to have things checked out.  And how to feel it’s OK to expect a future (disabled as I was before the leukemia).  And when to relax a bit.

I don’t have anything that’s bugging me in a suspicious way- I’ve just never dealt with the cancer to begin with. I put on a smile, drove myself to every one of 50 doses of arsenic, and the weekend Neupogen/Neulasta shots (to boost white cells), showed up for my appointments on my own (even the bone marrow biopsies- drove myself home 20 minutes after they were done), and never really thought about how close I came to being six feet under.  I absolutely understand that my prognosis is excellent. My most recent genetic marker studies were perfect. NO sign of the translocation of chromosomes 15 and 17.  I’ve been rearranged back into the right genetic sequence (how weird is that? !).  I’m a survivor.  I’m doing well- I get it… and I understand cancer isn’t a predictable disease.  I feel a sense of responsibility to have my apartment set up as simply as possible, clear out some clutter, and be prepared for anything that I can, to ensure that I can live independently as long as possible.  That may be another 30 years with nothing else mucking things up.  That’s the ‘plan’…but cancer doesn’t respect plans.

This all sounds so much more depressing than I really feel- to me it’s just reality.  I need to be as prepared as I can be, while not being tied to a diagnosis that has pretty well been treated. Relapse can still happen, but my new oncologist is checking genetic markers often.  He encourages patients to get things checked out if there’s any question.  He ‘gets’ the emotional component of having the ‘big C’ and knowing that it’s a mind warp for a while.

The news anchor and now the 11 year old have opened my eyes up to how blessed I am to still be here to even be a bit freaked out by their deaths.  I can’t imagine the pain their families’ are going through. No warning.  My prayers go out to them.

I need to figure out how to live better within my physical limitations. I’m still very fortunate.  Now just to stop being a bit scared.  A lot.