Game Of Alones

.I’ve done a lot of things alone in the past six months, since losing Gerry.

I eat most of my meals alone, in my room, since stairs remain so difficult.  I sleep alone, I am learning to walk again, alone.

Andy is with me quite a bit, but, as a percentage of my days, I see very few folks on a regular basis.

And, of course, I never see the one person I really want to see,
and won’t ever see him again.

I miss Gerry.  It seems painfully obvious to write that, but it’s the strongest thread in this difficult year; I miss Gerry.

I miss walking, I miss good health, I miss the ease of my previous life, I miss cycling, but most of all I miss Gerry.

I miss having someone around who would know, intimately, the pain that I’m feeling in my back (he had several crushed vertebrae from his Myeloma.)

I miss Gerry’s fastidiousness, the house seems shabby and in an odd state of disrepair since he’s been gone.  Andy lacks the time and energy and I am not physically able to keep things as nice as they used to be.

I miss Gerry’s humor, although I swear that I hear his laughter many times throughout the day.  We’d become such a comedy “duo” over our 25 years of marriage that I can almost write his jokes for him, in my mind, when the opportunity arises.

I miss his hugs.  He was small, but strong, and I miss him surprising me with a hug from behind while I’m reading or writing or just sitting outside.

It feels so weird, though, that the times I’ve missed him MOST since his passing have been while watching this final season of Game Of Thrones.

In our modern world, one of the activities that brings couples together is watching a favorite show.  Gerry and I both loved television, unashamedly, but we didn’t agree on every show (of course!)

One show we absolutely loved was The Americans.  We would save up episode and watch them together on Roku, for hours at a time, binging, and we’d love it.

I feel a special note of gratitude to The Americans for closing the show so beautifully,
and doing it in time for Gerry to appreciate the ending.

Game Of Thrones, though, is continuing on, sans Gerry, through it’s last season.

Gerry and I loved GOT.  We loved the plot twists, the bizarre theories, the wild fans and all of the videos.  Gerry especially loved listening to one YouTube channel with amazing theories (most proved correct!) while he was puttering around in the kitchen, his domain.

Sometimes I think I can hear him in there, making a grilled cheese sandwich,
but alas it’s the cat doing something catlike.

I put off watching Game Of Thrones this season until plot reveals on Facebook made me chose between tuning in, or having the season spoiled.  I didn’t want to watch alone, but I didn’t want to watch with anyone else.  So I watched, alone

It’s a good season of GOT, Gerry would have loved it.  I’m loving it.  It seems a lovely farewell to a beloved TV series; I wish I had had time to give Gerry the same kind of farewell.  I still wake up in a cold sweat from dreams about Gerry dying with no one around him but medical staff, no family, no me.  I was functionally immobile from my reaction to strong chemo, but that doesn’t lessen my guilt at not being WITH him at the end.  Just because you know something’s out of your control doesn’t necessarily lessen the guilt.

Neither of the kids are into the show, and I hate to drag Andy into the final season just so I’m not watching alone.  Besides, it’s cathartic in a way that nothing else has been, to watch – and cry – and watch.  Sleep is so much a part of my recovery that I’m usually snoring by 8:30pm, which means I catch up on GOT on Mondays.

I feel less alone watching the show during the day, although in this insanely
dark season I have to close the curtains or I can’t actually SEE anything!

So every Monday during the GOT season here I am, curtains drawn and iPad glowing, weeping, missing Gerry, loving the show, finding a way to deal with widowhood.

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.

Waiting & Patience

I feel as though so much of my life these days is spent waiting!

  • I’m waiting for Spring.
  • I’m waiting for Max & Sophie to get back from Europe.
  • I’m waiting for my body to heal so that I can walk.
  • I’m waiting for my balance to return so I can ride my bike!

Waiting isn’t so bad, and while I’m waiting I’m also doing exercises, getting my body stronger, trying to make use of the ‘time in between.’  Waiting patiently is an excellent exercise for the soul.

Spring comes late to Minnesota, March is generally such a difficult month because there is the tease and the promise of warmer days, followed by unexpected snowfalls.

Right now I’m waiting for Andy to get up so we can go to the DMV.  But she just told me she doesn’t feel well so we’ll be going tomorrow.  More waiting.  I’m not really able to drive myself, or I’d just head out.  I might be able to make the drive, but once there dealing with the parking, getting my walker out, getting INTO the building; all of that is a bit too hard for me still, I’m not there yet.

So I’m home today, I’ll make my way downstairs to strengthen my leg muscles and my balance, and I’ll see how I feel once I’m in the kitchen.

I keep working toward being able to stand up long enough to make pasta; I’m afraid that may still be a long way off.  I miss the taste of fresh pasta, my OWN pasta, and it’s pretty easy to make.  But I have to stand for about 20-30 minutes while I mix it and send it through the pasta machine, and that’s twice as long as I’m able to stand right now.

The year before I was diagnosed I noticed that my stamina was disappearing.  I was too tired to do many things, and found myself sitting instead of walking or standing over and over.  I just felt lazy, as if I weren’t trying hard enough.  But of course now I realize that laziness had nothing to do with the cancer that was invading and growing in my body.

So I’m trying to treat my current inability to walk far, to stand for long, to do so many things as a temporary waiting period, and I’m trying to be very patient with myself.

Patience is the offspring of Waiting.

Yesterday I discovered an online community, based in the UK, Macmillan Cancer Support, for cancer patients and their caregivers.  I may have run into this site earlier, but it just didn’t register in my brain at the time.

Macmillan seems an amazing resource for folks who are seeking answers (and also seeking online companionship on what is often a very lonely path) and I’m glad i found it.  I’ve already had a lovely response about recovery times from CODOX-M from a fellow who was also on this drug regime, and I feel comforted.

Finding and using websites like this make the waiting a bit easier.

pa·tience
/ˈpāSHəns/
noun
The capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset. “you can find bargains if you have the patience to sift through the dross”
synonyms: forbearancetolerancerestraintself restraintresignationstoicismfortitudesufferanceendurance;

Thanks, FDR! Thanks, Obama!

I just received word that I WILL be approved for Social Security Disability, and the monthly check will be enough to pay my utilities and taxes, plus a bit extra to live on, and that is an amazing thing.

I have NO idea how long I’ll be disabled, but at this point I still can’t walk well.  I just about make it to the bathroom and back, which I do at least 20 times a day for the exercise, but stairs are insanely hard (but DOABLE!) and FORGET about getting outside to move around in all this snow.

So while I’m disabled, I know that now I will not be using up more savings.  Thank goodness.  And thank you to everyone who helped us out over the past 9 months, we’ve had no income coming in since last June, so your help has been SO appreciated!

Cancer is expensive.  Even with insurance, we’ve run through over $30K of savings so far.  And it’s not over yet (although I am in remission!)  It will be over when I can move well, walk up and down stairs, and drive again!  Those are my goals for 2019!  In the mean time, I will have scans every 6 months, and those are pricey, and doctor visits on a more frequent basis; also pricey.  Insurance covers most of it, but those copays really add up when there’s so little money coming in.

But now I am proud to share the news that I am a recipient of SSDI.  Huzzah.

Beginning in the 90’s there’s been a rather loud outcry from the right about, “Makers and Takers” – the thought being that corporate heads are “makers” for making jobs, and folks who receive any kind of benefit from the government are, “takers” because they’re sucking at the teat of big government.  The truth is, ANYONE who buys a box of cookies or a bike chain is just as much of a “maker” as any industrial giant.

I have always thought that the way a government, a country, treats those in the most difficult situations is how that country should be judged.  We fall FAR SHORT of every other industrialized nation as far as healthcare goes, but thank heaven for Social Security.

The right keeps trying to destroy it, and they HAVE weakened it, but it is so vital to our identity as a nation that cares for the ‘least among us’ (income wise, health wise) and now it’s vitally important to me, too!

If it hadn’t been for SS survivor benefits, I would never have been able to attend college.  Ironically, the same is true for Paul Ryan, who has been one of the loudest voices against this benefit.  In fact, the benefit for child survivors of a deceased parent has changed, it used to continue while the child was in college, now it just ends at 18, making college just a dream for so many kids who have lost a parent and aren’t genius enough to earn scholarships.

And, the truth is, for the benefits to our society (including a better education citizenry) the cost is so low – truly!  This is a complicated issue, and my blog is not a political one (well, not usually…) but there’s been NO cost of living raise for SS recipients in over 2 years.

I feel so relieved, so happy.  I can pay the monthly bills, and have a little bit left over for groceries.  That’s really all I need, and it makes me feel insanely happy.  I will fight like hell to get back to dyeing, designing and teaching again soon, but right now I can’t stand for 5 minutes, let alone teach a class or dye 4,000 grams of wool!

The truth is, if it weren’t for SSDI and the ACA (especially as administered by my beloved Minnesota), our family would be entirely broke by now.

My life, and my financial security, have been saved by these two government programs, and I am VERY grateful.  For years I paid into SS, happily, because I truly believe, like Oliver Wendell Holmes Jr., that “taxes are what we pay for a civilized society!”

Mrs. Whiner

WHINE ALERT

Damn, I hurt.  My back is sore, my legs are numb (which is oddly uncomfortable, you’d think that numb would be… numb?) and I’ve had nausea every morning these past 5 days.  If I didn’t know any better I’d swear I was pregnant.  Not really.

Thanks, hysterectomy and advanced age…

Andy’s leaving for a week, and we have folks to come and stay with me while she’s gone

(and feed the pets, and let Jasper out to pee, and feed me, and let ME out to pee…)

but I am going to miss that kid something awful!

I feel that the past week or so I have moved BACKWARDS in my walking ability, maybe the metheltrexate I took in such high doses in January is finally working itself out of my system?  This whole thing is SUCH a mystery to me, and information about recovering from high-dose, high-strength chemo is not easy to find.

I’m almost through every season of America’s Next Top Model (I’m taking a break at cycle 18 because it’s just so bad…)  This week in honor of my friend Kathleen staying with me for a few nights, I’ll be diving back into RuPaul’s Drag Race, which is more fun and has much nicer contestants that ANTM.

And that is pretty much my life right now…

Plus, I have more hair every day.

A Positive Frame

I’m feeling like I’m moving backwards, as though my pain has increased this week and my ability to deal with my numb legs is diminishing.  My knees are SO sore (I fell on them in the shower a little over a month ago…) that they scream with every step.

Part of this feeling is due to the fact we’ve reduced my Oxycontin from 30mg to 20mg, so there’s where some of the pain is coming from.  But I just can’t shake the feeling that I’m moving backwards.

I need to keep myself in a positive frame of mind; that is vital.  But it’s SO damned hard.

I try to think of how far I’ve come, and what a different place I’m in now than I was just six weeks ago.  It’s valid and a good point.  Then I get up and try to walk to the bathroom and my legs are screaming, my knees feel weak, and I feel almost ready to give up.

Almost.

I know that I’m feeling scared about Andy leaving for 8 days at the end of Feb, but I’m THRILLED that friends will be coming to stay with me.  I worry that my pain levels will continue to increase and I will be a burden on our friends who come to baby sit me, but I just have to get over that.

On the HUGE plus side: I took a shower this morning, I ran the water, got into the shower, soaped up and rinsed off and got OUT of the shower.  While I was drying my legs were shaking so hard – I just don’t have the stamina that I used to have – but doing stuff like taking a shower on my own is how I WILL create the stamina that I need.

If only it didn’t take so damned long.

The BEST News (and a caveat…)

Yesterday I had a visit with my oncologist and, his exact words (as he shook my hand) were, “Congratulations on surviving cancer…”  The tumor in my spine is officially gone.  I am in remission, and that is amazing news!

From this point I have doctor visits ever 3 months, and a scan every 6 months.  We’ll keep an eye on the lymphoma to make sure it’s really gone (it has a way of sneaking back…) and keep our fingers crossed.

BUT

…I’m not well yet, and it may be 6 months to a year before I’m able to walk well, and function as the Annie Modesitt I want to be!

I’m so at odds with the thought that CANCER is gone, but I STILL feel so damned miserable.  Pain continues, I’m exhausted, I have no balance, I walk as much as I can, over and over, from my room to the bathroom and back, but the progress is SO SLOW that many times I feel in danger of losing hope.  My legs are numb from my toes to my hips (neuropathy) and that makes it hard to walk, too!

But, the tumor is gone! The cancer has LEFT THE BUILDING!  So champagne all around, everybody celebrate!

BUT

…don’t expect much from me in the next year or so. 

I’ll give what I can, but until I can get this damned chemo out of my body, I’m going to be a shadow of what I have been.  I hate that I can’t 100% celebrate the remission of my cancer AND the end of the pain and sickness that keep me in my bed all day and all night.  The tumor may be gone, but the fractures in my back and chemo remain.

My hair is coming back as a salt-and-pepper mix with what feels like a LOT of curl!

Seriously, except for my walks to the bathroom and forays downstairs, I’m generally in bed.  My sitting up time has increased to about an hour, then I just lose the ability to be upright and have to lay down for a few hours.  Exhaustion, it’s not fun.  None of this is.  But we’ve moved a comfy chair into my room and I sit in it as much as I can each day.  Sitting up is an exercise, it helps my balance and strength!

Thank heaven I have good friends and family to support me through this.  I feel like one of the luckiest people in the world, especially with my Andy to care for me.  And I’m growing some more hair, even if it’s hard to tell in the photograph!

Thank you all for your love! I feel it!

 

 

It’s SNOWING!

I love snow, which is one of the reason I love Minnesota so much!  Of course, as soon as we moved out here from New Jersey the weather went nuts and now they get as much snow as Minnesota does.  Oh, well…  Live and learn!

I am at what I consider the HARDEST part of recovery.  I’m just well enough to be a little bit active (walking around the house, staying awake for stretches of 4 hours at a time, getting my appetite back) but I’m NOT well enough to act on those impulses!  My long, long walk through a downtown corporate maze yesterday made me acutely aware of how big my dreams are, and how weak my legs are.  Damn you, weak, weak legs.

I see my doctor next week, so I’ll get a reality check from him on where exactly I should be.  He told me when I was in the hospital that I was progressing nicely, but I worry.  It just seems like I’m in a holding pattern, and I have to FORCE myself to look back on where I was a month ago to truly appreciate how special it is to be able to walk WITHOUT A CANE to the bathroom.  Yippee!

I’m learning to use my medical marijuana to best effect, so I get the optimum pain relief.  Two days ago I forgot to take my 6am pain pills and I cannot believe how terrible I felt by the time my next pain pill appointment came around.  THAT is a mistake that I won’t make again, lordy how I need those pain pills simply to be able to LAY in bed, forget about getting up and walking, going to the bathroom, etc…  I hate to be reliant on them, but I’m VERY glad that I have them.

Andy and I have started a new evening ritual. She just finished the last Golden Compass Trilogy book and I have the newest Philip Pullman book on audio file (la Belle Sauvage)  So we listened to a nice chunk of it last night in my room at bed time, it was like being read to by some uber-dad who pronounces EVERYTHING beautifully.  I fell asleep, but I’ve already read (listened to) the book, so I’m cool if I miss a bit.

Andy’s been working on her leaf art, which is getting more and more compelling.  When the light is better I’ll take some nice photographs of her pieces and post them, they’re abstracts made of leafs and leaf parts, the colors are very lovely.  I worry that Andy will become so bored caring for me that she’ll be sad; I’m NOT the most fascinating patient in the world.  I also worry that she may feel she’s falling behind her friends from college who are getting apartments and jobs.  She’s got neither, she just takes care of me, and I am very grateful for that.

I don’t think I can actually go out into the snow, I slip and fall SO easily, but maybe Andy will bring me in a bowl of it and I can play around with that?  I hope as it gets warmer my legs will grow stronger and I’ll be walking outside without a cane in the Springtime!