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!

Friends + Andy

I don’t think it’s an exaggeration to say that without my friends + Andy, I would not be here right now.

From the immediate, jaw-dropping LOVE response when I was first diagnosed through the many small gifties and visits from local friends, to the actual financial donations that have kept our heads above water these past 9 months (thank you, thank you, thank you!) and the ‘cleaning crew’ and ‘cooking crew’ love from members of my knitting group (thank you so much, ladies!) i have no idea what state we would be in right now.

There have been many days when Andy is at their wit’s end.  Andy is essentially dealing with a rather large, middle aged BABY who needs feeding and cleaning and entertaining.  At the same time, Andy has taken over the financial, legal, emotional and other necessary paperwork/office visits surrounding long-time disability and recent widowhood, which would be a huge job for an older person, forget a 22 year old just out of college!

Andy is amazing, but this job is a huge one and there are times it’s been TOO BIG.  Now that my mental state is returning to pre-cancer levels and I can actually REMEMBER when I’ve signed a form, or made a visit to a bank, the nuts and bolts of Andy’s job will be getting easier and easier.

A mind is a terrible thing to lose, I’m glad to be getting my own back.

Caring for a family member with cancer, who is struggling with the residual effects of chemo therapy, is NEVER easy.  The fact that Andy does it with such grace is astounding, and the few times that they lose their temper or feel overwhelmed are more than validated by their hard work during all of the other times.

When Max was home for the holidays he stepped up, but it’s hard to just insert someone into a routine, so of course Andy ended up doing yeoman work all through the holidays.  It did give them a bit of respite, though, and we’re looking forward to that this Summer when Max is home for the entire season.

Because I’m doing so much better, and because Andy is in NEED of a respite, they’ve arranged to go visit some college friends for a week at the end of Feb, and will be bringing one friend home to help them with some projects they’ve started.

Who knew my kid had a skill for laying out a room, organizing a basement or creating a really good flow for a home office.  They’ve also showing some skill with the power tools, which gives me a sense of pride since I’ve always loved me a DeWalt Drill.

We’re lining up folks to come and check in on me / stay with me during Andy’s absence. I think we’re pretty much covered now, and that also warms my heart.  My business partner, Kathleen, has been amazing with her visits, and her ever-ready help for Andy.

  Kathleen will be staying with me for almost a week, during which time we will watch EVERY episode of RuPaul’s Drag Race and Outlander. 

Just try and stop us…

So although I am still light years from where I want to be, I do feel myself getting better every day, and that is almost ENTIRELY due to the hard work of Andy and our friends.  (Of course, the doctors and nurses had something to do with it, I’m speaking pretty much about at-home help…)

I still can’t walk easily, my legs are numb and I almost fall all the time.  Almost.  That’s a very important word.  I don’t get downstairs as often as I’d like due to balance and exhaustion issues, but I do what I can, and I walk around upstairs quite a bit each day.  The more I walk, the better my legs feel!

I cannot WAIT for warmer weather so I can walk outside!!
I don’t like to set time-goals because that can lead to disappointment,
but I’m thinking I may be AT LEAST six months away from any kind of bike joy.
I’ll live with that.  I kind of have to…

And today a few very dear friends are coming over to help us clean the house.  This has been a pretty regular thing, thank heavens, because aside from sweeping up a broken glass that the cats knocked onto the floor, there’s not really a lot that I can do to keep the house clean.

I wouldn’t say I’m a clean-freak, but I DO care whether my house is clean, even though I’m in bed more than I’m OUT of bed each day.  Andy does their best, but keeping the house clean is really the least of what they should be worrying about, so we’re VERY grateful to Ellen and Lisa, who are coming over today, with their mops and rubber gloves.

And me? I’ll be SITTING UP IN A CHAIR in my room.  Andy’s rearranged it so that there’s a rocking chair at the foot of my bed, and I’ve been taking advantage of it by sitting up for an hour or so each day.  Just a month ago I couldn’t sit up for more than 15 minutes – huzzah!!

If this sitting up ability keeps growing, maybe I’ll be able to go to a movie with Andy??  There are several local theaters that have recliners and stadium seating,
maybe that would work? 

I need to feel that my physical strength will stand up to 30 minutes of riding in a car each way and 2 hours of movie, but it would be so nice to see How To Train Your Dragon 3 since it’s a family movie series we both love.

Small Victories

I just walked to the bathroom without my cane, which is a small – but significant – victory for me.  My balance is getting better, I’m trying to do balance exercises a few times a day and I think they’re working!

Andy rearranged my room, so now it feels like I have more room, plus the drawers I need to access are all pretty close to me, so that makes life easier.

I think I’m going to try to make it downstairs today, just for the change of scenery and maybe to watch a movie with Andy.  As I’ve discussed earlier, my mind wants to be fully well TODAY, but my body disagrees with that plan and insists on a few extra months.

I’ve had to cancel teaching up through April, and probably after that, too.  It makes me extremely sad because I miss my students, I miss teaching!  And, I’d be lying if I didn’t say that I miss the income.  Since June I’ve had only yarn sales coming in, which feel like a lot sometimes, but this year is DEFINITELY our slowest year to date because so much of the focus has been on getting ME better.  I feel guilty for that, I feel like I’m bringing the company down, but Kathleen tells me not to be silly.

It’s freezing here, as it probably is where you are, too!  There are definite benefits to being in bed for most of the day, it’s the warmest place in the house!!

Going Backwards?

Being home is the best thing ever, I love home.  I’m a Virgo, and that’s one of the things that supposed to be true for us, we love our HOMES!

I love home, and wherever I go when I travel I try to remake a tiny bit of my home so I don’t feel so homesick.  I’m one of those folks who unpacks into the hotel bureau the MINUTE I get into the room, toothbrush and toiletries in the bathroom, coffee machine set up to make tea, just the way I like it!

But now I’m feeling BED SICK.  I’m sick of being in this bed. It’s a REALLY nice bed, we bought the mattress last year and every day I’m grateful that we sprung for it, it’s where I’m spending 23 hours a day.

Right now BED is the place for me, I have to accept that.  Getting downstairs is a trial, although I do it because it’s great exercise, but the truth is that I NEED to be in bed for most of every day because I need to heal, and it’s taking HELLA longer than I’d anticipated.  I have no patience.  I need sleep, and lots of it.

When I got back from the hospital last Thursday I felt as weak and feeble as I had in November.  Friday I felt like it was December.  Sat & Sun were also kind of like how I felt in December, and now I’m finally catching up to where I was before I went for my metheltrexate chemo.

Metheltrexate: Come for the bright yellow color,
stay for the bone quenching exhaustion and mouth sores!

So my patience is shot, I’ve watched EVERY episode of Friends and Forensic Files (UK Friends, I REALLY want to go on “Mastermind” with my specialty as Forensic Files…)

My hair is SLOWLY growing back, but I’m looking VERY hip right now.  See?

And, my sitting up limit has been reached, so I’m signing off so I can lay down in that delicious bed!