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!

Testing Myself

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

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

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

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

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

TRAVEL

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

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

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

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

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

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

Life is hard, but life is good.

Today life is stupid hot.

A Return To Baking

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

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

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

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

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

First Post Chemo Bake

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

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

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

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

My previous floral attempt

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

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

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

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

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

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

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

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

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

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

What a difference a few months make!

Game Of Alones

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chronic Pain Revisited

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

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

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

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

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

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

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

Spinal Cord Injury Levels

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

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

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

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

Different Flavors of Oxy

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

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

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

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

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

What this guy calls the “Hillbilly mating call.”

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

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

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

Adult Training Wheels

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

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

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

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