Pain Center, Redux

The phone number in the letter is a NON WORKING NUMBER at Health East, naturally.

I’m absolutely livid. So angry.

I just received a registered letter from the pain center I visited last week alerting me that I am “terminated” as a patient. (Not that I wanted to go there again.)

It makes me SO angry that they can treat a patient so shabbily, lie about them, then turn around and send a letter implying that – through the fault of the patient – they’ve been “terminated”

(“Terminated” is also a very unfortunate word choice for a patient who still battles the effects of Stage 4 Lymphoma.)

I met with my PCP this week, peed in a cup, signed a contract and now I’ll be getting my OxyContin from him.

I have the wherewithal to do this. But what about the patients that don’t?

This is a terrible way to treat any human, especially a patient who has come to you for help, who has been undergoing radiation and chemo therapy at the SAME CANCER CENTER where the pain center is located.

[for background on this, read my post from last week]

An Arc

I can’t believe I haven’t blogged in a month!

It’s been QUITE a month.  I thought that by now I’d be writing about my adorable tutoring students, and how every day I could see in their happy, fascinated faces that I’d made a REAL DIFFERENCE in their little reading lives.

Unfortunately, Health ran interference on my Life, and Health is a hog about always taking center stage.

TUTORING

I realized a few weeks into the Americorps tutoring job that I probably didn’t have the stamina, but I was still hopeful that I’d be able to increase my strength day by day.

Then I fell last Saturday.  I was in the basement, I washed my hands (thereby getting a bit of water on the concrete floor) then turned to walk away and fell HARD right on my face.  My nose was bloody, my tooth was chipped, and my chest felt as though someone with huge boots had kicked me, HARD.

Getting up was hard, so hard, but I did it.  I got upstairs and cleaned myself up as well as I could, waited for Andy to get home from running errands, and decided to try to ‘sleep it off’ because I just felt so wiped out after my crawl upstairs.

The next day I hurt just as bad, so we went off to the ER so I could make certain that I hadn’t damaged my spine or any of my cancer-affected bones, and we learned that I had definitely bruised – might have broken (although it’s hard to tell…) – a couple of ribs.  They offered me some pain relief, but I told them in all honesty that I was already taking pain meds for my back and Tylenol was probably the best thing for the swelling that was causing the pain.

Upon returning home, and taking time for some careful consideration, I finally had to admit to myself that I wouldn’t be able to do the duties of my job for the next few weeks, and I couldn’t guarantee that I’d be able to do the work even AFTER those weeks had passed.  So I had to make the very, very difficult decision to back out of the Ameritrade tutoring job, which breaks my heart a little.  So many broken things all over the place.

PAIN CENTER

Tuesday I had a first visit with a pain clinic, which went – oddly.  I’m still trying to work out exactly what happened, here’s how I wrote about it on FaceBook:

My first pain management appt didn’t go well. Apparently I somehow angered the CNP, I’m still trying to figure out how.

One minute she was staring me down (unblinking, very odd) then when I mentioned that it made me uncomfortable, she looked away and said, ‘Well, since I’m not allowed to LOOK at YOU..!’ willfully misunderstanding what I was saying.  The appointment ended with her telling me that it was “a privilege for me to be seen at the pain center,” and she left abruptly.

I had a meeting with another nurse and the clinic manager, they’re going to try to hook me up with a different person – a doctor – for a future appointment. In the mean time I’m reliant on my PCP for my pain meds.

Maybe it’s better to just keep it that way, I got an odd vibe from this pain management center. I don’t have a camera or anything, I can’t ‘rewatch’ the interaction – I’m still trying to figure out what I did, or didn’t do, that seemed to anger the CNP so much.

I walked away with such an odd feeling about the pain center, I’d decided by the time I got to my car not to pursue treatment there.

Yesterday I met with my therapist, who deals with cancer patients and is affiliated with my cancer center.  She was able to pull up the notes from the CNP in my chart, (what was written after our very brief appointment) and I was startled by them.

In the comments I am “She”

She notes that she feels forced to come the [sic] pain center and has no other choice according to her oncologist.* . She also notes that OxyContin is really an “8 hour medication not a 12 hr”*^, she also notes that she will not wean off of her opiods because she has tried and the pain was too excruciating,** she has receiving [sic] medication from her oncology provider at this time.  initial consultation did not go well.  The patient reports to the provider that she was offended because the provider was “staring intently” while listening,^ an apology was provided to the patient^^ and she asked for the clinic manager.  The visit has since ended abruptly.  No charge from the provider at this time as this is not a complete visit.

It continues ominously

Previous to the visit her oncology notes were reviewed – it appears that they have tried to reduce her use of opiods as her oncology diagnosis is in remission.**

Addendum – patients case will be brought to case review for evaluation, as the clinic manager has discussed with the patient, no prescriptions will be provided to her from the pain center.  No UDT was taken today.  Clinic manager aware and involved.
_

* This is not true, I was the person asking for the appointment, I asked my oncologist AND my Primary Care Physician for a referral to visit the pain clinic.  This is a lie.

*^Articles re: 12-hr/8-hr OxyContin problem, it’s a real thing, and I discussed with her that my husband had taken Oxy for over 12 years and this was something he had researched.
          LA Times, May 5, 2016
          Practical Pain Management, July 2016

** I started at 90mg of OxyContin/day in January, and twice I’ve been weaned down successfully (once to 60mg/day, then to 40mg/day) and with my full cooperation.  Recently, my doctor had me step down from 40mg/day to 20mg/day, which I blogged about, and that was very difficult.  My doctor and I decided that it was better to return me to the 40mg/day after a two week trial at a lower dose.


^ It was very odd.  The CNP just sat and stared at me for a considerable length of time, I’d never had a caregiver or anyone stare at me so intently.


^^ It wasn’t.

Now, I’m probably being overly cautious, but I want to get this in print because I feel like the end of her comments on our visit sound as though she’s planning on taking this to whatever committee addresses these things, and in my worst nightmares she might try to get me declared a pill-seeker.

All she had to do was look at my file and see the scans of my cracked vertebrae to understand the need for ongoing pain relief.  Oy vey.

Acclimation

This year has been a long journey of learning to acclimate myself to a new – everything – it feels like some days.

Recently I was in a group where we were asked to describe ourselves using a series of adjectives.  It was a confusing exercise, and at first no one did very well with it, but as it went along more and more people understood the situation and got into the spirit.

I identified myself as a woman who is a certain age, is a widow, a reader, and is disabled.  It was only after the exercise was over that I realized that I hadn’t used two adjectives which would have been at the top of my list a year ago: knitter/designer and cyclist.  And there’s that new, intensely painful adjective: widow.

It’s weird how upsetting I found all of this, as if over the past year I’d lost my identity in some way.  Reader?  Well, yes, I read, but I’m much more of a knitter or cyclist, right?  I tried to explain it to Andy, but I didn’t do a great job.  Essentially, I felt that I’d had a huge part of my personality removed, and I guess I have.

I have to admit to myself that I haven’t ridden my bike in any meaningful way in over a year, and although I DO knit, it’s not with the same passion and intensity I’d had even last year.  I may be a cyclist/knitter in the same way I was again, but right now I’m just a reader, which is fine.  I just can’t seem to muster up the same passion for my knitting, and that’s due in part to my physical limitations; it’s hard for me to sit in a position conducive to knitting for more than an hour or so.

However, I will be a widow for, well, probably forever.  Which is fine, I’m not seeking to change that status any time soon.  It’s a new adjective, a new label, and I have to get used to it.

Scary Week Ahead

A few weeks ago my doctor wanted to try to reduce the pain meds I’m on, we’ve done that every few months, but this time was different for two reasons: He wanted to ENTIRELY remove my evening pain meds (replaced, if necessary, with ‘breakthrough pain’ oxycodone), and he was (unknown to me) going to be out of town for 2 weeks.

I had some major problems with the medicine cut-back so the nurse in my doctor’s office adjusted my dosage, and when my doc returned he decided to just return to what I’d been taking originally, yay!

Except it was a really rough two weeks.

It was hard to get by with minimal pain relief, I couldn’t sleep and that led to daily exhaustion, which led to more pain, and soon I was in a vicious spiral that took me almost two weeks to halt and reverse.  I don’t think my doc anticipated how difficult this medicine changeover would be, I hope he carries this new knowledge with him when dealing with future patients.

I had felt like I was making some great strides before the medicine change up.  Those were put on hold, but I’m working hard to increase my stamina again.  This week I attended a full day kick-off event for my Americorp job, and was very happy to get through it.  I paid the next day in exhaustion and soreness, but I got through it!

This coming week I have three days of training for Americorp, and I’m pretty scared about it.  Tues, Wed & Thurs I need to be at the Minneapolis Convention Center at 7:30am and stay until 4:30pm. I’ve spoken about my fears to the director of our local program, he assured me that if I’m unable to stay the full day they can work around that.

Then on Saturday my cookies are due to the State Fair Creative Events building.  I want to decorate them by Thursday so the royal icing is dry and hard enough to transport on Sat. That means each day at the end of my Americorp training I’ll be doing a bit of decorating (I like to do it over a few days to build up the icing)

It’s going to be a long week, but I’m not doing anything that I haven’t ASKED to do!  And I have a strategy to step back from either obligation if I feel I need to.  This week I’ll be taking my walker, that will make the day easier!  (Especially since the handicapped parking spaces are usually so far away from whatever event I’m going to!)

I feel certain that when my job actually begins, when I’m actually AT the elementary school, the days will be shorter and much easier than these training days will be.  Who knows?  By that time I may be riding my bike the 7 blocks to the school every day, wouldn’t THAT be a kick in the walker!

Missing In Action

It’s been a very emotional week for me, not least because my doc has had me cut back on my Oxycontin to half of my previous dose, although I also have 5mg Oxycondone I can take for breakthrough pain.  I’ve done this step-down twice already since ending chemo, and I agree that it’s necessary to reevaluate every now and then to make certain I’m taking the minimum I need.

But I think right now I’m below the minimum amount.

Max & Gerry on a tour of Gustavus Adolphus

I’m exhausted from not sleeping, sleeping’s been difficult because there’s so much pain.  The 5mg doesn’t seem to address the pain as well as the 20mg does (duh) and the extra relief I get from medical marijuana just isn’t cutting it.  It’s been a hard week, and emotionally, I’m feeling very drained and not terribly resilient.

Since visiting my friends last weekend I’ve been missing Gerry like crazy.  I’m sure it was going to place where we’d gone many times, and hearing him talked about with so much love by Myrna and Bob.  Bob said Gerry had one of the best political minds, and humor minds, he met.  That is such a lovely compliment, because I know how much Gerry would have enjoyed it.  He was the funniest man I ever knew.  And he loved politics.

It’s almost as if my mind put off mourning Gerry full out until I got far enough past my “clean” CT Scan so that I had enough ‘worry space’ in my brain to handle it.  There’s only so much one can worry about at one time, right?

After Gerry died in October I was in shock for quite a long time.  Then just when I was beginning to wrap my mind around the fact he wouldn’t be coming home, I was hit with severe sepsis and was put in the ICU until they figured out it was my port that had become infected.  I know I was closer to death during that week than I’d ever been, and to be honest there were times that week when I wanted to say, “Screw it.”

But I couldn’t, because I have two kids, and because I just couldn’t.  For better or for worse my body fought hard, even if my mind and heart weren’t in the battle.

Today Max was walking around “wearing” Kitty Nitro around his neck, looking for all the world like a taller, thinner, MORE bearded version of his dad.

Testing Myself

As my recovery progresses, I find that I am ‘testing myself’ many times each week to quantify how much independence I’ve recovered.

A few months ago I was sleeping around 18 hours a day.  I’d sleep 12 hours at night, and take two naps during the day.  I needed all that sleep, but now I’m down to only needing about 12 hours a day (sleeping for about 10 hours, with a 2 hour nap in the afternoon)

I’ve been working on my ‘sitting up’ skills.  It wasn’t long ago that I couldn’t sit up for more than 10-15 minutes.  Then I was able to sit up for a half hour.  It took me FOREVER to be able to sit up for an hour, but after that I shot ahead in leaps and bounds and now I can stay upright for about 5-6 hours before I NEED to be horizontal.  But it’s still progress.  I’m working on increasing that even more as the start date of my new tutoring job grows closer!

On not insanely HOT days (like today), I’ve been getting out for a walk.  THIS is the most draining thing I do.  A 6-block walk will knock me out for about 5 hours.  A 3 block walk (to Wong’s Kitchen…) will knock me out for about an hour (just long enough to eat my Chicken with Broccoli…)

I try to make at least one thing each day; some cookies, a loaf of bread, a piecrust for quiche or a berry pie, a bundt cake.  Making these things makes me feel more like myself, AND with three young adults in the house, there is ALWAYS a need for baked goods.

TRAVEL

But this weekend I tested myself further than I have before!  I drove 3 hours up to my friend, Myrna Stahman’s lakeside cabin, and visited with her and Bob from Friday to Monday.  I learned several things:

  1. I can do this.  It was a long drive, but I did it easily.  I wouldn’t want to drive much longer, but I think I could if I needed to.
  2. New = Difficult. It takes a LOT more energy to be in a ‘new’ place, even if friends are making it as easy as they can!  Just NOT being home made dressing, sleeping, getting to the bathroom, feeding myself, so much harder.  When you have a disability (as I do with my now screwed-up back) you can’t rely on the old rules of logic.  I have visited Myrna many times, and I figured this trip would be about the same level of difficulty. Just the – newness – of being in an environment that hadn’t been tailored to my needs (as my bedroom has been) took a lot more energy and work than I anticipated.  I slept WAY too much for a good houseguest, but Myrna and Bob didn’t seem too put out by their house guest masquerading as Sleeping Beauty.
  3. It’s good to have a friend to travel with.  I took Jasper, he’s friends with Myrna’s dog, and Jasper adores Bob.  It was wonderful to have pupster along as a travel companion, he made me feel more at home.  Even though he refused to do ANY of the driving.

    I don’t have a cool blue one, like this.

  4. Vape is FAST! Using the new cannabis vape that my pharmacist prescribed for me is an INCREDIBLY efficient and fast way to get immediate pain relief.  I’m not terribly fond of any kind of smoking, but I can’t argue with the results.  I have much better pain relief when using my “battery” and cartridge.  I stepped outside a few times this weekend to imbibe, and each time the results were fast and long-ish lasting, hooray!
  5. Memories are hard.  Gerry and I used to visit Myrna and Bob, and every room had different memories of Gerry.  Tears were shed, both with Myrna and alone.  It was hard.  I don’t think it will ever be easy.
  6. There’s no place like home!  I drove home via Costco, where I gassed up the FIAT (touch me!) and then drove on home.  As I was getting my luggage out of the back, and wishing that Andy were home, right around the garage they came!  (I thought they were at a doctor’s appt.)  And, like a good kid, Andy carried my bags and suitcase into the house, got me settled in, and now I sit, recovering from my 4-day excursion.
  7. I don’t think I’m ready for fiber shows yet.  There’d been some talk with Kathleen that I may be able to come to Stitches Midwest, but I don’t know if I could handle it, pain-wise.  Also, the looks on Myrna and Bob’s faces when I walked — even though they were as kind as they could be and tried not to give anything away — told me quite a bit.  Unless you’re used to my herky-jerky movements, I think it’s a bit of a shock to see how I have to swing my body around to make my legs work. I think I would feel WAAY too self conscious, and I think the pain level would be too high.

I’m hoping I will get better; much, much better; but until then it’s so hard for me to see the look on friend’s faces who are so worried about me.  Andy, Evan and Max have all sort of learned NOT to show me how worried they are, but that’s a hard ask of friends who don’t see me every day.

So I’m taking a few days off from the tests, and I’m just going to relax over the next week while Andy and Evan are off on a camping trip.  Max will be with me every evening, and as exhausted as I am, I may just SLEEP for most of the period!

Life is hard, but life is good.

Today life is stupid hot.

A Return To Baking

I bake for fun, I really love making things (and I love decorating them even more!)

In fact, in 2016 I auditioned for the American version of the Great British Bake Off.  The Great American Baking Show (they can’t use the term, “Bake Off” because Pillsbury owns the rights to it in the US) most likely won’t be produced again after the last season, which was due to air on ABC at Christmas 2017.  Unfortunately one of the judges had been involved in an unsavory episode when he was a chef in NYC 10 years earlier, and in the midsts of #MeToo ABC felt that the most prudent thing would be to just cancel the entire program and air some show on Christmas lights instead.

So even if I’d made it onto the show (I was in the final group of 12, they only chose 8 for the show, I wasn’t even an alternate…) the show wouldn’t have aired.

Yet I cling to the hope that someday I will be able to bake IN THE TENT in England (where they also shot the US show, oddly enough…). It’s a dream.  I know I’ll never be on the Amazing Race, but there’s always a slight hope that I can bake!

Until this past month baking was a bit of a pipe dream, too.  Not only was it very difficult to get downstairs, once there I was so wiped out that all I could really do was sit.  Standing was (and continues to be) a very painful activity, and so much of baking is standing.

First Post Chemo Bake

This week I made my first cake in a year, my chocolate bundt cake (based on Joy The Baker’s recipe) and it was delicious.  I had to pace myself, doing about 20 minutes of work for every 20 minutes of working, but I did it (and I even cleaned up after myself!!)

Today I’m going to make some cookies.  I’ve entered myself into the Minnesota State Fair under the Decorated Cookie category (this year’s theme: Minnesota Flowers) and I’m raring to go!

I’m planning on making up a bunch of royal icing using meringue powder (so it will keep, in an airtight container, for up to a month) and I will practice a few different types of flowers and decorating techniques in the two months before I have to turn in my cookies.

I’m not certain if I’m permitted to enter multiple groups of cookies, I’m going to look that up, because if I run across several decorative techniques that work well I’ll want to show them off.

My previous floral attempt

So in preparation, I have sugar cookie dough in the fridge (my favorite, very simple recipe with added cinnamon, nutmeg and cardamom) and I’m watching The Great British Bake Off!

I had avoided watching the show because for so long I wasn’t sure when, or even if, I’d be able to bake again.  I’m feeling more hopeful about that these days.

Even if baking is a drawn out process for me (rest, bake, rest, bake…) I know that it can happen, and that has lifted my spirits more than I can explain.

Obviously I love knitting and crochet, even though I haven’t done much of THAT since my diagnosis, either.  It’s just been recently that I’ve been sitting and knitting or crocheting for any length of time, and it’s just been swatching mostly (although I did just finish a little crocheted doll for my small friend, Charlotte, who lives nearby…). But baking is also a great love of mine, and the results are more immediate, and more immediately shareable.

Now that I have both kids home for the Summer, plus an extra kid who’s dating Andy and is a lovely addition to our household, I have a captive audience of young adults who will eat just about anything I pull out of the oven.  Perhaps I’ll even get back to making a daily (weekly?) loaf of bread for us, which is SO delicious.

One huge change in my baking since the cancer is that I’m not limiting myself to gluten free flours, I WILL be using wheat flour, but only organic (so I can avoid the Round Up that is used in some non-organic wheat harvesting, and which seems to exacerbate my fibromyalgia symptoms.)  Using organic wheat in place of gluten free is still an experiment for me, but it seems to be working well.  And it CERTAINLY makes baking easier and a bit more fun.

As I struggle with the residual pain of the tumors that lived in my spine and hips, I don’t want to return to the terrible fibro pain in my shoulders and legs that I’ve been dealing with for the past 10 years.  Avoiding gluten, taking vitamin D3 and exercising kept the pain at bay, I’ll continue with that but instead of GF I’ll be using organic wheat flour.

My knees are doing well thanks to the cortisone shots (more successful in my left knee than in my right knee) and the TENS until I bought at Amazon has been an incredible aid to help me manage my extreme back pain.  All in all, I’m doing about as well as can be expected.  All I’m missing is the bike, but that’s a tale for a different blog post!

The lovely cane makes walking more beautiful! Thank you, Deb!!

I’m walking better now, for the most part I’ve moved onto the BEAUTIFUL cane that my friend Deb bought me last Fall, and leaving the walker for longer strolls.  It feels very freeing to be able to drive again, and take the car with a CANE only, not dragging that walker everywhere I go!

What a difference a few months make!

Things Change SO Quickly

I’ve been pretty vocal during my recovery from cancer/chemo about different instances that arise and thwart me, or spur me on, toward a full recovery.

Recently I’ve had a nice amount of positive steps forward, but I always hold in the back of my mind that recovery isn’t a straight line, but there are a lot of peaks and valleys in my [generally] upward journey.  That’s why I blog and facebook about this so much, so I, myself, can go back and read my posts and SEE how far I’ve come.  Sometimes being able to quantify a positive change is so hard, having a record of the changes is helpful in keeping a positive outlook!

Today is a low day.

I live in Minnesota, so I’m ready for a blizzard on any given day*, and it’s not a surprise to wake up after a few days of upper 60’s temperatures to a day that’s wet and cold and blustery.  Today it feels like the cold’s crept right into my bones (especially my knees and back) and is laughing at me.  Ha, ha, cold, I hear you, and I laugh back!

Facsimile of the Chocolate Cake

I had big plans to make a chocolate cake today.

It doesn’t sound like a huge deal, but it is.  Getting downstairs isn’t the marathon it was just a month ago, but it’s an effort.  STANDING is harder than anything, and baking is more about standing than anything else.  Silly things like lifting up the mixer to move it over by the electrical outlet, carrying eggs, sifting flour, etc., are very difficult when the back is so painful.

So once I got downstairs, ready to make the cake (whose recipe I’ve long memorized!) I found that I could barely stand.  There were also several ‘gifties’ from the pup to be cleaned up, and THAT had a painful effect on my back, too!

So no cake for me.  Or for the family.  I was really looking forward to it (it’s the chocolate bundt cake I make, this time I was going to add white chocolate chips and some walnuts) and I’m probably healthier and happier NOT making and eating it.  But I wanted to make it.

More than making the cake, I wanted to have another day with low pain.  But that’s not going to be the case today, so I need to find a way to be at peace with that, deal with the pain, do what I’m able to do and not feel bad that I can’t do more.

Today my expectations outpace my limitations.  But tomorrow may be a cake day!  Stay tuned!

In other news, Max and his girlfriend Sophie have finished their semester in Vienna and are visiting London before they come home.  Right now they’ve traveled up to Scotland and are staying with our friends, Di & Colm, for a few days.  I can’t explain how wonderful and amazing it is to have friends who are SO kind as to host the kids for a few days, and show them so much of the beauty of Scotland in just a few days.  THANK YOU DI & COLM!

*Not really, it doesn’t generally snow in May here…

Chronic Pain Revisited

About nine years ago I was diagnosed with Fibromyalgia, which was a kick in the pants.  But I discovered that regular exercise (bike riding for me), vitamin D3 AND cutting wheat out of my diet seemed to help me quite a bit.

Just last year I discovered that ALL wheat wasn’t the problem, just – maybe – wheat that had been processed with Round Up during harvesting. So I decided to stick with only organic wheat and that worked well.  So when I wanted a treat, I’d bake it myself, and we found a really nice organic pasta that seemed to ‘play well’ with my pain.

Now I’m facing a new kind of chronic pain, and this one won’t be made better with diet (although exercise is always good at strengthening the muscles, which help support my body and can ease pain…)

My new chronic pain comes from the damaged vertebrae (crushed? split?) T9 and T10 mostly, along with one lower down in the lumbar area.  These are areas where I had tumors growing during my lymphoma.

My back pain was what alerted me that there was something more serious going on in my body.  Apparently by the time I had my MRI last July and they found the tumors (spine ones, AND tumors in my chest area and back of my skull) the spine tumor had grown SO large that it had grown through T9 & T10 and had split the verts, or done some kind of major damage.

Through the miracle of radiation treatments and chemo, the tumors are gone, and I am in remission, and I am glad and thankful.

But the damage caused to the spine is still there.  It will remain, and it will cause me pain.

Spinal Cord Injury Levels

I have a special knowledge of this pain because, ironically, Gerry suffered with his T9 & T10 when they were crushed (possibly during physical therapy he shouldn’t have been doing) and he had extreme pain.

He had a procedure called kyphoplasty (he was supposed to have vertebroplasty but as they were wheeling him into the operating room they told him that his insurance would only cover the first procedure, not the one his doctor had recommended…)

But I saw how he suffered every day after his diagnosis with the pain.  Gerry was NOT a complainer – not like me, I could win a gold medal if complaining were ever an olympic event – so when he would mention his back pain it was notable.

He took Oxycontin twice a day, every day, and when he ran out of his drug it was dreadful.  Of course he’d usually run out at 5:05 on Friday, just as his pharmacy had closed and wouldn’t open for the weekend.  I started hiding four of his pills so when he’d run out I’d have enough to get him through the weekend.

Different Flavors of Oxy

I take Oxy three times a day, every day, every eight hours.  By the time I get to hour seven, my back is complaining pretty badly, but I pride myself on seldom dipping into my ‘breakthrough pain’ supply of lower dose Oxycodone.

But I ran out yesterday.  So today I was running on fumes, trying to make do with the breakthrough pain med, which is NOT slow-release so it just doesn’t work as well as my Oxycontin (contin=continuous pain relief)

And Andy just got home, at 6:30, from picking up my refill from my own pharmacy, which is across the street from Gerry’s old cancer center & pharmacy, and which stays open later.  Thank heaven.

Standing here and looking forward, to a life where I will need to take pain pills every eight hours to have the strength to just EXIST is hard.  I know there are other ways to ease pain, and I’m a huge believer in acupuncture and water therapy and exercise.  But, and this I know from my 12 years caring for Gerry, there are some levels of pain that have to be dealt with using the strong stuff.

Being from West Virginia, and knowing the effect drugs like Oxy and Hydrocodone have had on so many poor folks who fall into the pit of prescription drug abuse, my Oxy is a bitter pill to swallow (in more ways than one!)

What this guy calls the “Hillbilly mating call.”

I’m grateful that I have insurance (through the ACA, please mention me as someone whose life was saved by Obamacare when you find yourself in an argument with anyone) and I’m grateful that I live in Minnesota, where the coverage is very good.  Gerry’s coverage, ironically, wasn’t quite as good as mine is, so his co-pay was pretty dreadful.  Mine is notable, but I know how high it MIGHT be, and I’m grateful I can afford it.

Today I had Xrays of both knees because the pain has become so severe when I try to walk that it just feels WORSE than my arthritis used to feel.  I don’t know if the pain increase is in any way caused by the cancer, but the pain is so strong that I’m awakened by it several times a night, when I shift my legs and knees, because that movement is enough to send shrieks of pain up and down my legs.

After the past 9 months I’d be happy never to see the inside of a hospital again, but part of me is also wondering if a knee replacement is in my future.  I see an orthopedic doc in a few weeks, the same doc I saw 2 years ago who gave me a shot in my knee that helped quite a bit, and I’m curious to find out if this knee pain can be surgically remedied.

Adult Training Wheels

To that end, I’m actively seeking someone who cycles who has had “adult training wheels” attached to their bike.  I was pondering getting a tricycle, but in honesty I’d rather keep my Trek and use training wheels if that would work.

If you’ve had these training wheels attached to you bike, or know someone who has, and have an opinion about them, I would LOVE to hear it!  I really need to be able to get back on my bike.  I need a non-weight bearing exercise* to build up my muscles and help relieve my pain.  I need to be back on my bike!

The next step will be acquiring them, and having them attached to the bike, but one step at a time!!

*I know you’re going to mention Swimming.  I love swimming, and have no problem with it, but the pool is far from my house and, once there, getting into the pool is a bit of drama with my limited mobility.  If I could get my bike working for my damaged body, it would be available to me 24/7 and would be easier than getting into and out of a pool.

SPRING!

Today I celebrated the arrival of Spring with a little walk, and I’m insanely proud of myself.

I got up and dressed, went downstairs (then went up stairs to use the bathroom, then downstairs again, a marathon!)

And then, with the help of a friend of Andy’s who was over this morning, I took my walker and WALKED TO THE CORNER.

Walking to the corner is a very short space.  It’s a length that most folks would just ignore, it’s so short from our house to the point where Hawthorne and Cypress meet.

But I walked it, all the way, and then turned around and walked back.  I only had to rest once, and when we got back I put my walker away and made it up the stairs to watch a little TV with Andy’s friend.

All in all, an amazing day.  I feel like an Olympian.  I know Gerry would be proud of me, too.

Today I feel that his wedding ring (which I wear along with my own since his passing) has an extra sparkle to it, or maybe that’s just the Spring sun I’m finally feeling on my hands and face!

I know how silly this is, but the sense of freedom I feel just getting out of the house on my own is indescribable.

A few months ago I could barely get into the car for a doctor visit, and once I did I was nauseous the entire car ride, and couldn’t hold my head up for the doctor’s appointment.

So, for some folks it may be silly.  For me this is about as serious as it gets.

Each one of these small milestones is a promise that a greater milestone may be just up the road.  Or around the corner.  Maybe I’ll look for that milestone on my next walk…

Mourning Ritual

A Couple of Irish Laddies

I would never have chosen to lose my husband while I was undergoing high dose chemo that, essentially, had paralyzed me and left me unable to lift my head off of the pillow.

I remember lying on my back, in pain from the tumors in my spine and bald due to the chemo, trying to process that the love of my life was gone; his body was laying in a hospital room in Rochester, MN at the Mayo Clinic, but Gerry was gone.

The responsibilities most widows have were placed in other hands; I was physically unable to plan a memorial service, invite guests, or even make many of the small decisions that are necessary during the mourning period.

Andy (nee Hannah) & Gerry, 1997

Instead, I felt as though I was engaged in my own, personal and singular mourning ritual.

  • My head was shaved
  • I was immobile
  • My interactions were limited to less than half a dozen folks

Fear of infection while I was undergoing chemo kept the number of friends I could see very low.  This sickness-imposed separation from the world would continue for months, during which time I would slowly be able to add a few more folks into my circle of visiting friends.

Gerry at Max’s Bar Mitzvah & at HIS 1972 Bar Mitzvah

I was not compelled to return to a job and hear condolences and stories of other folk’s grief.

I didn’t really have to do ANYTHING but lie on my back, and breath, and take my meds every 8 hours.

I was fortunate to have a strong and loving online community, but being unable to even sit up made it very difficult to post, to have an online conversation, or to connect with friends.

Visiting Colleges with Max

It’s been 5 months since Gerry died, and although it’s not been easy, it is beginning to feel like a natural part of life.

I’m certain that caring for Gerry during his 11 years of Multiple Myeloma, a fearing several times that he was about to lose his battle with that blood cancer, allowed my heart and mind to ‘rehearse’ the situation of Gerry’s death.  Earlier in the year when Gerry had two heart attacks in March due to a drug interaction, I think both of us began to realize that he had limited time.

Gerry & Andy/Hannah at a St. Paul Saints game

I’d thought about Gerry’s death so many times that when it happened I was shocked, but not surprised.

I miss him like crazy.  I joke with him (or my memory of him) many times a day, and Andy and I share stories, it seems, with every picture frame or cup or old medicine bottle we sort through.  I lack the strength to do much of the sorting, so that’s fallen to Andy, which is fine.

Anything of Gerry’s that I need to keep I already have within me; his laughter, his sense of fun, his intelligence, his love.

Gerry and I at dinner

So, in a bizarre way, being compelled into some type of unexpected mourning ritual has made this process easier to get through.  I wouldn’t have chosen to pair CODOXM-Ivar Chemo with the loss of the love of my life, but in an odd way the combined pain and confusion from both incidents blended and made my journey through them a bit simpler, if not easier.