Catching Up

I haven’t blogged for a while, so this is a kind of catching up post.

I’ve also been fighting off mild depression, which has felt as though it’s been ‘catching up’ with me every day.  I guess it’s time that I dealt with it, apparently many folks are dealing with a mild, persistent sadness while we’re all in lockdown for an unspecified time.

A large part of the sadness is due to the ongoing cancer, the new diagnosis of Leukemia (well, new in February) and feeling as if I just can’t get past this damned disease.

The current plan for my leukemia is one HUGE and very tough round of chemo while I stayed in the hospital for 7 weeks.  That part is over, and I’m glad I’m done with it.

Then two further chemo sessions were planned, as an out patient, with recovery at home.  I’ve finished one of those sessions and have one to go, but I’ve had a rougher time getting past the side effects of the second chemo session than anyone expected.

The third (and final) chemo session was supposed to happen 4 weeks after session #2, but it’s still not been scheduled.  I’m having a tough time getting my platelets and hemoglobin up to the levels needed to go forward, and I’m having a tougher time with the side effects of the myriad drugs I’m on (many are prophylactic, to fight off fungal or viral or bacterial infections). I’ve had a great deal of exhaustion and dizziness recently, so I made up a spread sheet of all of the side effects I’m dealing with.  Yep, no wonder I’m dizzy…

I have no idea how long I’ll be on these drugs, but considering I don’t even have my final chemo scheduled, I’m assuming it will be quite a while.  I was switched from Prozac to Cymbalta to deal with my depression, it seems to be working well.  I’ve just started a search for a therapist I can visit via Zoom, and I’ve returned to the Living With Loss group at the local Gilda’s Club (also via Zoom) and it felt very good to see my old friends in a grid on my computer screen.

But I haven’t really had a chance to ride my trike, and that’s become a symbol for recovery for me.  I went out and sat on it once (which winded me terribly!) but I haven’t actually pedaled it yet.  I know I will, I can visualize it, but it’s important to be honest about what I’m actually able to accomplish.  When you have intimate knowledge of what you can and can’t do, sometimes the well-meaning cheerleaders are hard to listen to.

Cancer is a marathon.  That analogy works better for me than cancer being a battle, or a war. My own cancer has felt like several marathons, one after the other.  I’m definitely in it for the long haul, I fully expect to make it to the finish line.  The kindnesses of friends on FaceBook and Twitter are like those cups of water that people hand to runners as they breeze by.

This marathon takes focus, just like riding up Ramsey Hill in the St. Paul Bike Classic (which I used to participate in every year.)  The well-meaning folks screaming support to the cyclists from the cliff at the top of the hill have always had the opposite effect on me, they would make me break my focus, lose my rhythm, finally I would dismount and just walk my bike up the final 100 feet to the top of the hill.  I guess I’m not a ‘screaming support’ kind of person.

Today I showered.  Those of you who’ve dealt (or are dealing) with energy sapping conditions will understand what a big deal a shower is.  I still can’t stand up for a full shower, I have a blue shower seat that makes full body washing possible.  I always feel like Wonder Woman after a shower, albeit Wonder Woman with a bit of an energy problem.  I’m going to attempt a short walk later today, but first I’ll sit and gather myself, allowing my energy to regenerate.

And that is what makes me sad.  I feel like I’m living in Groundhog Day.  For almost 2 years I feel as though I’m doing the same things, getting poked for labs, tests, scans, physical therapy when I’m too exhausted to stand, celebrating getting my own breakfast as if I’ve just cooked a banquet for 100.  I’m tired of being this person, this weak, sick, overwhelmed person who tries so hard to see the positive in my life.  I’m tired of the peripheral neuropathy in both legs that makes me feel as if my limbs have constantly ‘fallen asleep.’

I know how fortunate I am, I really do.  I try to honor that, and mention it whenever I get the chance.  But at the same time I’m sick to death of being so close to death.  And at the same time I realize there’s nothing to do but accept my current situation, try to make the best of it, and live as fully as I’m able to.  Which means constant nausea and dizziness, sleeping 18 hours a day, getting blood drawn twice a week and regular infusions, and continuing to wrap my mind around life without Gerry.

And there it is.  The hardest thing in the world to deal with, the thing that makes the cancer feel like a personal attack at times, instead of just an unfortunate roll of the dice.  Missing Gerry is the hardest thing I do, I know it’s so hard for the kids and for his family back in NY, too.  The fact that I had 12 years to contemplate and prepare for his leaving us does make it a bit easier, it really does.  But at times the pain of knowing I’ll never hug that dear man again is almost overwhelming.

I confessed to Andy back in November that I felt as though I were going backwards.  I had been healing from the Lymphoma pretty well since finishing chemo in January.  Learning to walk again, applying for and actually getting a job (which I had to walk away from because my health began to deteriorate – my first hint that something was going wrong.)

Andy, already devastated by the loss of their Father and exhausted in their role of ‘caregiver of the house’, wouldn’t have it.  “You’re FINE, you’re getting better.”

And I felt guilty for bringing up my fear that the cancer was back.  But the cancer was back.  This time as Leukemia, brought on by the chemo that had destroyed the Lymphoma, which is apparently a not uncommon situation.

I’m tired.  I’m scared.  I want to live for 40 more years so I can see Halley’s Comet.  Some days the fear is overwhelming, hell, I’d settle for 10 more years, I’d love to see a grandchild someday.  Recently the exhaustion and fear have been haunting me, I think I’m feeling the miles I’ve already run, and I need to be better about pacing myself.

And, of course, I have a great deal of joy in my life, too.  Being with my kids, laughing with Max, hugging Andy, all of us enjoying a game of scrabble or a piece of chocolate cake, these are golden moments.  I love our pets, and they show me so much love that I KNOW they understand that I’m not 100% healthy right now.  The new house is lovely, the previous owners were gardeners and we’re the beneficiaries of their hard work!  I have a lilac tree and a hydrangea bush right outside of my bedroom window.  Now if we could only get ourselves unpacked…

Professionally, I’m submitting a few designs to Interweave Crochet tomorrow, and I may send some submissions to Vogue Knitting now that Norah Gaughan will be the new editor-in-chief.  I feel so happy and hopeful about this, my mind feels clear enough to handle the mental gymnastics required to create a pattern.

And, of course, I have that tricycle just waiting for me to ride it.  Until then, I have my walker, and I’ll be off for my walk this afternoon.  Maybe I’ll take the dog and ask Max to join us…

New Wheels!

The difference in how I’m doing right now is nothing short of a minor medical miracle.  Or maybe the miracle is my kid’s love, and all the good food and REAL rest that I’ve been getting at home!

Chemo Knitting

Yesterday my doctor was pretty much astounded at how much better my hemoglobin and platelets are doing.  HUZZAH!  Aside from just being happy that I’m doing so much better than I was, the main reason for wanting my numbers to be so great is that I’m starting chemo again.

The last time I started chemo I was in dire straits. My numbers were horrible, I couldn’t keep ANY solid food down, but it was imperative that I began chemo so the docs went ahead and put me on a 1 week regime.  It kicked my butt.  Because I started with such poor numbers, and because the numbers just weren’t getting that much better while I was at the hospital (especially after Andy wasn’t allowed to visit and slip me a roast beef sandwich ever now and then) my numbers did go up, but they seemed to just stay at a certain point.

For the last few weeks in the hospital I barely ate anything but crackers and Kirkland protein shakes (which are MUCH more delicious than Boost, and have great nutrition!)

Fast forward to my first day coming home.  It was a challenge to ride in the car without throwing up.  We got home and it took both kids to get me up the stairs and into the kitchen.  After a rest, Max practically carried me to my bed, where I stayed for days.  I had to use the commode in my room for a week because I couldn’t make it to the bathroom.

This week I am up fixing my breakfasts and lunches (I can’t do dinners because I’m pretty worn out by then…). I walked up and down the block this week, and I baked a cake for the kids on Sunday.  I pretty much did it all sitting down, but I baked it!!

It was in celebration of PAYING OFF THE MORTGAGE ON THIS HOUSE!!  Actually, we had paid off the mortgage on our LAST house, so this was simply the point at which the check from selling that house finally cleared the mortgage company on our new house, but it means that except for utilities and taxes, we’re set every month.  It makes the expenses of cancer much easier to bear.  The joys of downsizing!!

Baking Cabinet

We have a bit less storage space in the kitchen, so our solution is a baking cabinet.  Every thing that has to do with baking goes into our new Ikea cabinet, standing against a bare wall in the kitchen.  Max and I transferred pertinent items, freeing up more built in cabinet space.

This house is definitely smaller, but oddly, both kids have much larger living spaces.  The trade off is we don’t have a dining room, but the kids and I find ourselves gravitating to the kitchen table and sitting and talking quite a bit, so it’s a happy trade off!  We have SO MANY BOXES still to unpack, but that’s also the function of moving into a smaller house.  Figuring out where to put stuff is a bit of a nightmare.  I was in the hospital for the actual move, had I been home (and healthy) I could have directed that a bunch of stuff get tossed out.  But now that it’s here, it must be dealt with!

NEW TRICYCLE!

But the BIG NEWS that I’m so excited about today is that last night I participated in my first online auction (by a local auction house, not ebay…) and I got myself an adult tricycle!  It’s one of the brands I’d been looking at, and the price of the trike, put together and ready to ride (did I mention it’s brand new, never ridden?) is less than the price of buying the same bike ANYWHERE.  And once I purchased it, I’d have to pay $100 assembly, but that’s taken care of!

Kathleen pointed the auction out to me, and also reminded me that WE HAVE A TRAILER for our biz that we can use to bring the trike to my house.  I can’t pick it up until the full STAY AT HOME directive is lifted (which is set to be May 4) but it’s being stored locally, and it’s MINE!

Today I have my first in-home Physical Therapy session in an hour and ten minutes.  I’m psyched, but I wish it were NOT raining because I’d like to show off my walking-with-a-walker distance tricks!  Instead I’ll be showing the therapist that I can stand up, sit down, put dishes away and get around the house well.  Stairs are still an issue, but slowly we’ll overcome that, too!

Signing off, future posts may be less positive as this second round of chemo takes hold of me, but we’re hoping that since I’m going into it so much healthier than before, the nadir will not be as low as with my first round of chemo.

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!

Advice, From Within & From Outside

I’m not going to lie, the past 10 days have been rough. It’s probably because I overdid it a bit at Thanksgiving, but I was OUT OF COMMISSION, as in flat-on-my-back in bed, for a week.
We had the MOST amazing Thanksgiving in Wisconsin with Evan’s parents, so much good food and games, movies and fun!  We were snowed in for an extra day — and ENJOYED it — so that says a lot about our wonderful weekend!
 
The past few days I’ve been able to get up and go downstairs once or twice a day, but I paid for those excursions with incredibly nausea, headaches. Must have been the change in elevation (joke…)
 
At any rate, I’m more myself today, I actually made yogurt, and if all goes well I’ll try to make it to Gilda’s Club tomorrow.
 
It’s hard to swallow that this is still my reality 11 months after finishing my chemo. I definitely have ups and downs in my recovery, and when I overdo or force myself past my limitations, I end up paying for it afterward.
 
That’s the hardest thing to accept. I can’t push myself out of this, I have to just let recovery happen in it’s own time.
 
There’s an unhelpful voice in my head that tells me, “Other folks have ended their chemo and they’re back to their regular lives!” That same voice tells me that I’m being lazy, not really applying myself, not working hard enough to get better.
 
That voice is often joined by the voices of folks who would like to point me in a specific direction for my recovery. That’s been happening a lot this week in private emails (folks are worried because I’ve been on radio silence)

ADVICE ON GIVING [Medical] ADVICE
So, with that in mind, I’d like to offer my OWN advice for what is not terribly helpful when you’re speaking/writing to someone battling a serious disease*
 
• Please do not feel you need to comment with some new herb or mud-bath regime that a sick friend MUST do. Often those kind of “helpful” suggestions simply make one feel even worse, as though they, themselves, are definitely to blame for a slow recovery.
 
• If you know a person, and you’re friends in real life, and you’re speaking from personal experience, suggestions are easier to take.
 
• If you’re just passing along something you ‘heard’ from another friend or from the media, please keep it to yourself.
 
• Please don’t insist that your sick friend MUST try something because it’s GUARANTEED to work. Nothing is guaranteed.
 
• Please don’t try to guilt someone with an illness if they don’t do exactly what you feel they should do (a friend is now a former friend after a series of messages explaining that eating meat is DEFINITELY what caused my cancer…)
 
I cannot tell you how much I appreciate the love and concern that folks have shown me! Sometimes, though, the medical-friend advice can be a little hard to take when I’m at a low point in my recovery. Thank you for understanding!
 
*I’m in remission, my last scans have been good. But I still consider myself battling cancer as my exhaustion, back and hip pain, and numb legs are due to the Lymphoma and the chemo.

Living Through Reality

My post yesterday was about gratitude, and also joy.

Today my post is about the days when I can’t seem to dig deep enough to find the gratitude I know is within me.  When I’m in so much pain, my mind is so muddled and my heart is so sore that I don’t know if I can — or if I want to — make it through another day.

In 2017 the USA had the highest suicide rate in 28 years.  It’s a fraught time for many of us, socially and politically.  Even folks who are agnostic politically can’t help but feel the blowback of their more passionate friends.

About 8 years ago I had a brush with suicide while on a drug, Lyrica, which caused suicidal thoughts and actions.  I haven’t seen that drug advertised much lately, I wonder if the I-have-no-pain-but-I-want-to-die issue is the reason.

After such a rough year, and especially after the loss of a life partner, it’s not unusual for folks to begin growing weary of life, fearing a lonely future, seeking an escape.  I’m not in that group; my two young-adult kids are reason enough for me to want to hang around and annoy help them through the next phase of their lives.  As I wrote yesterday, my life is pretty great, for what it is.

I do feel alone quite often, but that’s a function of my recovery.  It’s hard to get out and socialize; moving is painful, I get so tired, and being in a crowd (even in a restaurant) seems to unsettle me in a new way.  I don’t know if it’s because for 18 months I’ve essentially lived most of my life in a hospital room, a bedroom or my living room, but my Living with Loss group at Gilda’s Club (6-10 people) is about as large a group of people that I feel comfortable interacting with.

I see a therapist regularly, I interact with folks online through social media and my blog, and I have friends drop by on a fairly regular basis.  I am very lucky.

There are folks, though, who don’t have the resources I have.  They’re alone, they’re ill, but they can’t find their way to a path toward human connection.  You might know someone like this; a relative, a neighbor, a friend’s mom, who is living a life with little human interaction.

Once I was on a bus in NYC on my way to an appointment, and we passed a church bulletin board which read, “WE ARE ALL ONE”

Coming home a few hours later I saw that one of the letters had fallen off, and now the sign read, effectively, “WE ARE AL ONE”

If you have the resources and opportunity to help someone in your life, do it.  Help them figure out how to receive and send email, set them up with a protected facebook account so you can check in with them, ask them if you can take them out for coffee every now and then.

If there’s no one in your life like that, check out organizations like the ones below which can provide a structure to allow you to help someone whose life may —quite literally— depend on a kind word or a visit.  As the recipient of SO much love this past year, I can tell you what a difference it makes when you feel that folks really care how your day is, or if you’re feeling overwhelmed with life.

The list below is from the Prefer Home Website.  There may be other organizations in your area that aren’t listed here, but it’s a starting point.  Ironically, just before I was diagnosed I had applied to deliver food through Meals On Wheels here in St. Paul.  Of course, with the cancer and my continuing difficulties walking, this isn’t possible anymore.

The journey from active life participant to person needing help and company can be very short, I’m proof of that.  Pay a bit of love forward and reach out to help someone who may be feeling a tiny bit neglected emotionally in your community.

We don’t know what tomorrow will bring, but it never hurts to help tip the scales of Karma when possible!

10 Charities For Older Persons

1. Honor Flight Network: flights for veterans

As a thank you to those who served, The Honor Flight Network takes veterans on free trips to Washington, D.C. Currently, they focus on escorting World War II veterans to the memorial created for them. The program also takes veterans who are terminally ill.

2. Meals on Wheels Association of America: nutritious meals

Local programs provide congregate meals (at places like senior centers) or deliver meals to homes. Some programs also distribute food for homebound seniors’ pets.

3. Independent Transportation Network: rides

A network of affiliates provides what the charity calls “door-to-door, arm-through-arm service” to people who are generally 60 and older. Adult children can even volunteer as drivers and store up transportation credits for their parents. Gift certificates are also available. The rides aren’t free, but there is a program to help low-income seniors pay for them.

4. SeniorNet: computer training

Volunteers teach seniors to use computers. Classes include “Internet and E-mail” and ”Buying and Selling on eBay.” There are also discounts on computer-related products.

5. Second Wind Dreams: dream granting

This charity grants dreams for people living in long-term care communities, such as nursing homes, assisted living communities and hospice facilities. The dreams range from simple ones like a dress for church to big ones like reuniting with family members or swimming with dolphins. Donors can choose the dreams they want to sponsor.

6. Oasis: active living

Oasis helps people 50 and older keep their minds, bodies and social lives active through a variety of programs. Some are intergenerational, such as the tutoring program in which volunteers help kids learn to read.

7. Alzheimer’s Association: support and education

If you have a disease, there’s probably a charity for it. The Alzheimer’s Association is one example. This large charity is involved in advocacy and research support. But it also offers a number of programs that directly help patients and families, including a helpline, support groups, education programs, and safety services for people who wander. The association also helps people find clinical trials.

8. Alzheimer’s Foundation of America: support and education

Not to be left out when talking about Alzheimer’s charities, this one offers a hotline, educational workshops and free memory screenings. It also provides services for people with dementia, such as intellectual stimulation programs and adult day services, along with respite care to give their caregivers a break.

9. The Pets for the Elderly Foundation: pet adoption

Pets can help combat loneliness, so this charity helps people 60 and older pay pet-adoption fees at participating shelters in 29 states.

10. Socks for Seniors: holiday gifts

This is a fun one for the holidays. Elderly people who are living alone, living in nursing homes or homeless get a visit from a cheerful volunteer and a new pair of socks—often bright, festive ones. The point is to let them know they’re not forgotten during what can be a depressing time of year.

To find more charities, or to evaluate these, here are three helpful websites: Charity Navigator, GuideStar and Independent Charities of America. And to check for benefits you or an elderly loved one may be eligible for, visit BenefitsCheckUp.org.

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!

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!