I Have Achieved Exercise Bike!

PT

The past two days I’ve felt a bit under the weather for PT, but today I was feeling much better (odd, since I got my final infusion of the bright purple Vyxeos last night) so a different PT fellow walked me down to the gym (a workout in itself, at the END of the hallway.  Once there, joining another patient with leukemia who was on the treadmill, I was allowed on the bike and did about the equivalent of a round-the-block ride.  Amazing.

That was it for me.  Back to the walker, back to the room.  My goal is to keep my heart rate below 122 while I do this, nice to have goals.  And to do a tiny bit more each day if I’m able.  I’m not going to push myself more than I feel is good.

The attitude toward PT here is much more realistic and nicer than at St. John’s.  There I felt that from the moment the PT’s walked into my room I was a disappointment, never walking far enough, etc.  It was sort of one-size-fits-all, or it felt that way, but this feels a bit more tailored to me.  And we all know that something tailored is much more flattering!

KNITTING

More knitting today, and I have to write up my Sellers Disclosure for my house.  I’m so happy that it’s moving apace, and SO grateful to Cami, Ken, Andy and Natasha for working together to get the final few things done at the house so it can go on the market.  You will never realize the burden you’ve taken off of my mind!

UPDATES

One of the really nice things about U of M Med Center is the update they give me every few days of my condition.  It’s so helpful to see how my caregivers are viewing me, and I see hints in there as to what they’re hoping to accomplish in the near and far future.

think I’ve noticed where they’re discussing a bone barrow transplant in late March, but it’s in med-speak so I have to discuss it with someone who knows.  Having a date assigned seems odd and scary, I remember how long the lead up to Gerry’s was (we were preparing at the Mayo from June to Sept, when he got the actual transplant on Sept 1)

VISITS

Today my Max comes home for a visit, and I get to see my Andy for the first time in several days!  Andy and Evan have been at ‘Camp Chain-Saw’, where they’ve been learning the ins and outs of some of the equipment they’ll be using this Summer for their Conservation Corp jobs.  Max is taking the bus down from Morris this evening, it lets him off on the University campus, about 20 min walk from my hospital (convenient!) and will be staying over in the pull out bed I have in my room for just such an emergency (VERY convenient!)

I cannot want to see my kids again, including Evan (not really MY kid, but he has a way of really growing on you!)  I hope Evan is doing well with all of the Americorp stuff.  In a perfect world (where’s that?) it seems as though this may be a very nice ease-into a job situation, something everyone should have experience with, a rite of passage!

I’ve asked Andy to bring a buttload of stuff (a mug, toothpaste and shampoo, different clothes) to make my room seem homier.  As of today I am OFF of the drip, although I’ll keep the PICC line for blood draws, etc.  Since I have more movement, I want to make my room seem a bit homier so I’ve asked for my “pretty quilt and sham” to come in.  I hope it makes everything seem brighter and happier!

MEALS

The food here is great!  Seriously, very good stuff!  Aside from the whole wheat pasta, which tastes like toilet paper roll, everything’s been delicious.  My favorite is the butter crust cod, so good, especially with the hash browns for breakfast!  YUM!

Sometimes, though, even the thought of just ORDERING the food is enough to make my stomach flip, and I am SO grateful to Andy for bringing me the Costco milkshakes that have kept me going during many, many periods this past year.  Good protein, low sugar, decent carbs, and a very good price.  Gerry would be proud.

Three Lovely Guests

It feels as though I’ve been in UM Hospital for a week, but it’s only been 4 days.  They’re exceptional here, and I may be most impressed with my physical therapist.  He knows how to get me to do good, steady work, and is steady with his praise.  Today he said I’d shown so much improvement since yesterday that if I do this well tomorrow I may get to walk to the gym and get on the bike!

Along wit that crazy news, I had three excellent visitors today!

LONDON

My friend London came by and brought me home made sugar cookies!  We had the loveliest chat, life and kids, and she made me feel almost normal!

London and I have been friends almost since the day I moved here, her daughter is Max’s age, and she and Todd have been very important in our lives!  I don’t see as much of them as I’d like, I miss seeing her more, but our friendship is strong and we’ve both enjoyed watching the changes in each other’s lives as we’ve grown over the years.

NATASHA

Then my exceptional Realtor, Natasha Cujedo, once again went above and beyond the call of duty; bringing me paperwork to complete and getting the contract to sell all done and dusted.  The house is being staged even as I write, it’s looking lovely, and I think we’re well on the way to getting it ON THE MARKET very soon!

We’re pricing it, oddly, at exactly what I paid for my new house.  So after $5,000 for fees and $3000 for the move, I’ll pretty much break even if it sells for asking price.  Cross your fingers.  It’s expensive to move, but this was vital, and I’m SO HAPPY that when I’m released from the hospital after my RECOVERY I’ll be returning to a new, accessible home!

Natasha has become more than an agent, she’s become a dear friend.  Her daughter goes (went?) to the same college Andy attended, we’re in the same place in our lives and have shared many experiences, good and bad, and she’s such a straight shooter.  If you need a real estate agent in the twin cities, I cannot recommend her more highly!

ROBIN

Robin has had what I’m beginning to think of as a “signature Annie year” – it’s been bad.  After falling and doing a terrible number on her shoulder, with a year of . pain, surgeries that didn’t work and immobility issues, she’s FINALLY had a surgery that’s working well, and she looked more rested and less in pain than I’ve seen her in a few years!

Unfortunately, the day she made her appointment for her surgery, it was discovered that her dear, dear husband, Jack, had a tumor in his colon.  He was in such bad shape that his hemoglobin was at 5.  After building him up a bit, he had surgery and is now undergoing 12 rounds of chemo. GO JACK!

Add to this the deaths of several dear aunts and Jack’s mom in hospice, and you have the portrait of a care giver who is at the point of being stretched too thin!  Thankfully, the cancer center where Jack’s getting his chemo is very close to their home, which makes everything easier.  Robin brought me yarn and needles, and I’m happily knitting up a Slippy Cowl to keep my fingers in the game.

I find myself wondering if this hospital allows dogs to visit.  I’m thinking probably not (I’m in a sterile ward) but I would give so much to see dear Jasper and get some puppy love!  My three wonderful guests were a great substitute, though, and I’m grateful they braved the U of M parking garage to come and see me!  Note: If you do come, there’s valet parking here, and I think they validate at the nurse’s station!!

A Year Out

This month marks a year since I completed my chemo last January, and in some ways I feel I’ve just been marking time.

When I look at my own recovery this past year, it seems SO slow that at times I felt that I was moving backwards.  That’s why it’s so good to have friends who only see me every 3 or 6 months, they can give me a much better assessment of how well I’m doing.

We moved this week.  We found a house that allows me to do all of my living on one floor (LR, Kitchen, BR, Bathroom all on ground level!) with a floor for Andy (attic, charming and cozy) and a floor for Max (basement, not as cozy, but he has a space heater…)  The bonus is that the laundry and storage rooms in the basement will lend themselves nicely to dyeing.  This also means that we’ll have to build some kind of wall dividing Max’s space from the dyeing space, but we have until Max graduates in June.

And, every three months I’ve been going in for my checkup with my oncologist, every 6 months I get a pet scan to make sure the Lymphoma’s not returning.  So far, so good – until today.  The numbers were a bit wacky, so I have to go back on Thursday for some more decisive tests.  I’m expecting all to be well, it’s really the only way to focus my mind and not go a bit crazy waiting for test results.

The weirdest thing is that this has been a year without Gerry.

For the first half of the year, I’m not sure I was even fully aware that Gerry was gone.  Yes, I KNEW that he had died in October, but I was spending so much of my energy, mental and physical, on just coming back from Lymphoma and sepsis that I compartmentalized his loss and worked hard not to dwell on it.

Sometime in July it really hit me hard, though, and I started attending a Grief and Loss group at the Twin Cities Gilda’s Club.  I only wish they had one closer than Wayzata, but it’s a lovely group and I look forward to it every week.

I miss Gerry, and I do feel a bit lonesome sometimes, but I’m very fortunate to have amazing kids who have promised to be with me for a few more years, and now we have a lovely house that I can actually GET AROUND IN, and where I can live a more normal life than I could in our old house.  And, mentally, I think it was probably time for a fresh start.

So I just keep on keeping on.  Walking is still very difficult, my legs are still numb from toes to waist and I don’t feel much positive movement there.  Next week my business partner Kathleen and I will be traveling to Hawaii for a long-awaited and much deserved break (she, because she’s run the company single handed; me, because I have survived!!) Boy, that feels weird, saying I’ll be leaving for Hawaii next week.  I hope I come back with a bit of sun to see me through the rest of the Minnesota winter!

Grateful Every Day

To say this has been the hardest, perhaps worst, year of my life is an incontestable truth.

I’m still dealing with the pain and exhaustion of my disease, and with that comes fear (of relapse, future mobility, everything else!)

But in the middle of the discomfort and anxiety is a profound sense of gratitude.  Some days I feel it more than others, every day I struggle to make it stronger, but it’s always there.

No, I don’t have Gerry, but I HAD him.  I was so lucky to have 25 years with him.

No, I’m not perfectly healthy, but I GOT THROUGH Lymphoma and Severe Sepsis, and lived.

I’m certainly not rich, but I have all that I need, and a bit more.

Every day I wake up to a full pantry, hot running water, entertainment, and so much love.  I am, in all seriousness, one of the most fortunate folks I know.

And this weekend I’m even luckier, still!

Andy has been dating Evan for 9 months.  Evan’s dad and I are friends from college (crazy coincidence), his mom is a delight, and we’ve had lunch a few times, so we decided to do Thanksgiving all together in Wisconsin at a cabin deep in the woods this year.

We’re buckling down because a ‘once-in-a-decade’ storm is supposed to be coming, although at this point it’s six hours late (and it will probably be angrier for waiting…)  One friend is writing, his wife is making Swedish pancakes and the kids are organizing a board game for later in the day.

The dogs (3!) are generally pretty happy with each other, doing doggie things, and the lake is 5 different colors of grey.  I’m about to put the fire on with a flick of the wrist, and I contend that I’m the luckiest person in the world today.

Pushing Myself To Exhaustion

I’m sorry I haven’t written for a while, my focus has been split, and I’ve been battling exhaustion.  As I slowly get better, recovery, I also regularly outpace myself.  I do more than I really should because I’m discovering every day what my new limits are.  This feels like two steps forward, one step back, which is not uncommon in a recovery.

I still have days of nausea, when I awake to the smell of chemicals on my skin and an overall sense of nausea.  Those tend to be hard days when just walking down stairs is enough to wear me out.  I make it to my chair and collapse, sweating and wiped out, fit only to read Facebook and play endless hands of solitaire to keep my mind from dwelling on my back, hip and knee pain.

Then there are other days when I wake up energized and ready to shower, days when I can get to the store and go grocery shopping (using one of their electronic carts!) and do other errands.  These are the days when I tend to over exert myself, and that inevitably leads to days that I’ve described above.

In addition to the continuing exhaustion, Oct 21 was the one year anniversary of Gerry’s passing.  We didn’t have a great deal of time to dwell on it, we were all traveling back from New Jersey after attending a family wedding, but it was heavy on all of our hearts.

Currently I’m shopping for a new home; a place where I can do all my living on one level, which also has room for both kids.  I love our current home, but crawling up the stairs every time I need to use the toilet is rough, and when my knees are hurting, I travel up to the second floor so slowly that, well, let’s just say it’s a good thing I bought poise pads in bulk.

We thought we’d found our home, but upon inspection it became clear that there were issues that needed to be addressed, expensive issues, and the seller wasn’t inclined to reduce the price.  So, regretfully, we walked away and we’re not looking at a few other homes.  If all goes well we hope to close in December and slowly move into the new home in Dec/Jan.  We’ll take our time getting our current home ready to go on the market, and by Spring we’ll be open for business.

This means carrying two houses for a time, but I feel it’s worth it for two reasons: I’m easily exhausted and I need the time for a slow move, and our agent feels the house will sell better, and at a higher price, in the Spring.  Both these reason mean that for a time I’ll be paying taxes and insurance on two houses, but – as I said – it’s an investment I’m willing to make.

I think for a time I thought I could just remain in this house until both kids were settled in their futures, and I was ready to move into senior apartment housing.  But a recent issue with my knee (both knees have advanced arthritis, one of the ‘seized up’ on a cold morning in the bathroom) convinced me that I need to make this move while I’m able to be in control of the decisions and can do it on my own schedule.

In the mean time, we’re planning a nice family Thanksgiving with Andy’s boyfriend’s parents, and I think it will be amazing!  We’re having our weekend at a rented cabin in Wisconsin, dividing up the dinner between folks.  I’ve put Evan in charge of cranberry sauce (which is pretty hard to screw up!) and I’m making the turkey and two pies.  Andy’s making stuffing, gravy will be made from the turkey drippings, and all of the other side dishes are courtesy of Evan’s mom.  It should be an amazing weekend!!

The Sunday after Thanksgiving we’re having a small get-together for the employees of ModeKnit Yarn here at my house, which should be lovely!  I was telling Kathleen the other day that, outside of the kids and her, I rarely see other folks these days.  This will be a wonderful chance to catch up with the hardworking people who have kept ModeKnit Yarn going this past 18 months while I’ve been so sick and dealing with other painful life stuff.

Last Thanksgiving I was entirely out of commission; at the height of my chemo, and brewing the infection that would turn into severe sepsis a few weeks later.  This year I feel much more like myself, not least because I’ve had my hair cut and colored and I feel more like ME, so it will be a wonderful thing to share this holiday with friends.

I’m also thrilled to be able to do the work (pies, stuffing) a few days in advance and prep the Turkey before we drive to the cabin and put it in the oven there.  I can do a bit, rest a bit, then return a do a bit more.  That’s been my strategy that’s allowed me to hit several milestones so far, so I’m looking forward to implementing it for the holiday.

As seldom as I seem to be blogging these days, you may not hear from me again until after Thanksgiving, so I hope you all have an exceptional holiday with loving friends and/or family and snugly animals to pet and love!  And thank you all for sticking with me during this really rough year.  It’s been hard, and I’ve had a good amount of loss, but I have SO MUCH to be thankful for – and I am!

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.

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!

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.

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.

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!”