Goals

I’ve been told by several folks along this trip that setting goals is good.

Goals are a promise we make to our future selves, they allow us a framework within which we can flesh out our dreams, fill in the details, color in the large and small areas.

I’ve mentioned some of my goals previously in this blog, but I’ve never done a post entirely of the goals I hope to reach in the near future, medium future and far, far future.

Goal 1: Stay Alive
I want to live.  Who doesn’t?*

I want to be here for me, first of all, because even with the pain and noise and garbage that fill every-day life, there is SO much joy and beauty and fun in life, too.

And I love myself some FUN. 

So, selfishly (in the best sense) I want to stay alive for ME!

I want to be here for my family, too!

I want to be able to keep watch over my kids, to help them navigate young adulthood.  I want to see them grow into the type of citizens I KNOW they will be; thoughtful, hard working, kind and responsible.  We work so hard to instill values in our kids that reflect our own concept of good, seeing those values playing out in our kids’ daily lives is such a joy, I want to be here for that.

I want to be here for Gerry, to help take care of him (he needs that, and I feel that this cancer has left him in the lurch almost as much as it’s disrupted my own life.)

Well, my life IS our life, and vice versa, that’s the promise we made 25 years ago.
Still going strong, have I mentioned how lucky I am yet in this post?

Goal 2: Be Healthy
I want to feel better.

I hurt. Every day of my life right now is filled with physical pain, and I’m sick to death of it. Most of the pain is centered in my spine and my hips (basically, where the tumors are) but there is a lot of auxiliary pain (mouth, digestive system, joints, etc.) that echoes through my body.

On top of that is the exhaustion, the dizziness, the inability to move well.

This is the whining portion of the post, but I feel it’s important to catalog the issues I’m dealing with so that I can visualize the opposite—visualize a life WITHOUT this constant pain.

I want to be strong and pain free again!  I want to ride my bike, go for a walk, or just sit down without thinking about HOW I place my body as I lower myself into a chair to prevent crazy pain through my body.

I have a fear that the damage to my bones, my spine, my hips is great enough that when the cancer is vanquished, I will still have the full range of pain, and perhaps no good way to rid myself of it.

This is Gerry’s issue, his Multiple Myeloma comes and goes year by year, but the bone pain remains a constant. He takes pain meds, but that carries with it it’s own set of issues (side effects, dependency, lack of control) which are not fun to deal with.

Will my own post-cancer life be, in large part, simply about pain management?  God, I hope not.  My life for the past 8 years has been about fibromyalgia pain management, so what’s a bit more pain management on top of that?

Whatever happens, I’ll cope.  But I’m hoping that life after cancer will be about MORE than just coping.

Goal 3: Cycling
My own version of, “Back To Normal!”

Cycling around on my Trek women’s bike has been one of the defining characteristics of my life for so long!

I love the freedom of cycling, my ability to go just about anywhere I really NEED to go, without spending money on gas, or finding a parking space.  I love the feeling—about 2 miles into a ride—when my body releases into a sense of elation (or exhaustion, depending on the day.) and I’m on auto pilot for 10 more miles.  Just me, grinning, and my bike.

Cycling, for me, is pure euphoria.

Because my balance isn’t great right now, and I have so little stamina or strength, cycling isn’t something I can do.  It makes me sad, but I understand; falling off of my bike could cause some serious issues, my spine is pretty banged up and could become seriously damaged very easily, so to be safe I’m off of two wheels for the duration (of my cancer recovery)  BUT I WILL RIDE AGAIN!

Goal 4: Travel
This has to be on EVERY one of my Life Lists!

I love travel. I feel like travel is one of the most important things we, as human beings, can engage in.  Travel can be as exotic as traveling across the world to experience a culture you’ve never encountered, or as simple as taking a bus cross town to try out a new restaurant.  I believe in travel to bring folks together, and to allow us to discover new realms within ourselves that we might not otherwise take the time to investigate.

Travel means spending time going somewhere.  Spending time on anything means a certain amount of introspection.  Introspection can be a end in itself.  For me, travel is its’ own reward, the time, the planning, the memories.

When I was a young adult I was told that you can tell if you’re suited to a life partner if you can travel together, and I’ve found that to be true.  Gerry and I DO travel well, our different skill sets merge beautifully when we go on a trip together.  I love traveling with my family, and folks I’ve met with whom I’ve shared travel experiences have become some of my best friends.

I want to travel again.  Obviously that’s not going to happen soon, but I want it to happen.  There are so many places I want to visit, so many travel experiences I want to share with friends and family.

I dearly want to visit Vienna next Spring when Max is there with his girlfriend, studying German and Political Science.  I want to SEE my son living in his first city-away-from-home, his first foreign country on-his-own.  That’s a goal in itself!

At this moment I can barely make it up the stairs without stopping for 5 (or 20) minutes to catch my breath from the exhaustion and the pain.  Walking to the kitchen is rough, walking around the block is a mini marathon.

Will I travel again?  Hell, yes.

How well—and how soon—I’m able to travel again remains to be seen.

Goal 5: Grandkids
This is entirely OUT of my hands.

Friend of the POD – er – POODLE!

I always knew I wanted kids, that was something I’d known from childhood.  I also want grandkids; and I’m honest enough to say that out loud.

But it’s not my decision to make, it’s something to be addressed further along down the road, it’s my kid’s decision.

But should they decide that kids are in THEIR future, I want to be here to celebrate and enjoy their offspring; my future grandkids.

MORE GOALS
So many more than I can list!

There are so many goals that I want to achieve.

I’m not alone in this, we all have our list of goals—not exactly a ‘bucket list’—but things that we need to accomplish to enrich our lives.  I can feel in my soul, and in my bones, how many things I have left undone in my life.  Each of those undone things is the seed of a goal.

The five goals I’ve listed above are my Top 5.  They’re the immediate things that I want to accomplish to make my life richer and fuller.  This, I would argue, is exactly the reason I’m undergoing the Chemo tomorrow; to achieve these goals.

Of course I have fear about the Mayo procedure this week; it’s supposed to be a rather rough chemo, hard on the body, harder on the soul.  For what it’s worth, I feel that I’m as prepared as I can be for this next step.  But in reality, I don’t know how prepared I can  actually be.

However, listing and considering my goals makes me feel as though I’m moving in a direction that I can recognize. Forward.

Recovery lies ahead of me, I’ll try to mark the trail with tiny white stones as I travel along, perhaps it will be helpful for someone else who follows me along this path.

*Yes, I know there are folks who are in so much pain, physically and emotionally, that end of life seems the only release.  I can’t speak to that, that’s not my reality right now.  But I don’t judge that, either.  We cannot understand where someone else is unless we are living their life, and the only life I have the joy to live is my own.

Japanese Milk Bread

I love baking.  A year ago I was all about the cake, this year I’m more about bread.  It makes sense, bread is slower, there’s less timing involved, and it’s easier for a person with pain and exhaustion issues to plan out a loaf and deal with it ON MY TERMS.

I can move slowly through a bread recipe, feel I’ve made something special for my family, and NOT knock myself out trying to make something special and memorable.

There are SO many excellent bread resources out there that I’m not going to even TRY to list them.

Right now my favorite source of recipes to try for bread items is the King Arthur website.  In full disclosure, I’m a member of their baking club. I pay a certain $ each year to get free shipping on my orders and other little treats.  

It’s a luxury, but when I break down how cheaply I can whip up a loaf of bread for the family, and how much they enjoy it, it actually makes good sense, financially.

Bread + Pain Strategy
So this morning, waking at 2am with intense pain (2 is when my 8-hour Oxycodone wears off, and at this point I could set my clock by the pain) my strategy has become to

  1. Take my 2am pain pills (short lasting Oxycodone for breakthrough pain)
  2. Get up and take care of nature’s call
  3. Try to stay in bed for at LEAST 1/2 hour
  4. Read a bit from my current bedtime book

If all of this leads to me falling back asleep, then I am what’s known as le Happy Camper.

The kids won’t have hot, fresh bread waiting for them in the morning, but they WILL have a well rested, happy, mom, and that’s worth EVEN MORE!

However if, like this morning, pain won’t abate until I move a bit, I get up and wander the ground floor of the house, putting stuff away, emptying the dish washer, trying to do anything that isn’t too noisy.

If I’m still awake at 6am, I can take my entire pain pill regime (three times a day, 6am, 2pm, 10pm.)  To my list this morning I added, “Make Japanese Milk Rolls!”  Because – why not?

Soft Bread
I like soft bread, and I cannot lie.  Recently I like it even more.  When approaching a chewy crust of bread, I tense up a bit as hard chewing can really bother my teeth these days.  I’m such a sensitive flower…

I love this recipe from King Arthur Flour because it uses a warm milk starter, called a

Sometimes I like to bake my Japanese Milk Bread Rolls with an egg wash & sesame seeds.

“Tangzhong Starter” which really does seem to make the bread soft and easy to eat.  When I was a kid my dad used to buy a loaf of bread called, “MIlk Toast.”

I don’t know if this was an Ohio or WV thing, but we’d get this special bread at A&P, in a blue wrapper, sliced VERY THICK.  I remember it was a soft and comforting bread, and my dad would toast it, then cover it in cinnamon and sugar and warm milk and eat it like a pudding.

These Milk Rolls give me the same feeling when I eat them.  There’s a pleasant density and softness to the bread that makes me feel like I’m 5 again.  This is wonder bread, x100 for taste and texture!

Japanese milk bread roll with jam!

Once I’ve created the starter (I do it 30 seconds at a time in the microwave) and mixed together all of the ingredients, I knead it in my mixer, then give a few extra kneads on my table and put it in a buttered, covered bowl to rise.

60-90 minutes later, the dough’s been raised and it’s time to shape it,

Versatility
At this point there are a number of ways to utilize the dough.  One of my favorites is to create the above rolls, which are very easy to make.  If I feel the need to fill them with spices or nuts or chocolate or cheese, it’s easy to do and makes a beautiful change up from plain bread.

Japanese Milk Rolls baked as a loaf

Other times I roll the dough out into a rectangle, fold it up in thirds (like a business letter) then turn under the edges and slip it into a loaf pan.  Once again, when folding the dough I can add fillings to different section of the bread if I feel so moved, and can make a sweet or a savory treat.

I’ve used this recipe as the base for a nice Babka, too.  It’s such a versatile dough!

I think this morning I’m going to make a kind of cinnamon roll using a nice mix of Cinnamon, Cardamom, Nutmeg and a bit of Vanilla. That sounds like it would be great with a cup of coffee (I seldom drink coffee, but this morning I might!)

When the bread’s had a second rise I’ll roll a Cinnamon-Spice mixture into the dough, then do some creative twisting and try to make something pretty.  Once it’s baked up, I may add a bit of icing and there’s Sunday morning, done and dusted!

What About The Gluten, Annie?
And, for those of you keeping score, YES this is filled with gluten.  But I’m using an organic wheat which should guarantee that a Monsanto product wasn’t used in the harvesting of the grain.

I was experimenting with using organic wheat vs gluten free, and felt that I was having some good success, and then the cancer happened.

I’m so full of various pain killers that I wouldn’t even FEEL the side effects that I’d been chalking up to eating gluten.

So I’m giving myself permission to eat a bagel every now and then, and I’m ESPECIALLY giving myself permission to eat a wheat product I bake at home using organic wheat.  So far I haven’t had any terrible side effects from this, the pain I feel tends to line up with the pain from my lymphoma and metastasized tumors.

So, whether you consider yourself a baker or not, I have found this recipe to be a VERY good soft-bread, and not really difficult to make at ALL!

I hope you’ll give it a try, and let me know how it turns out!  From start to finish this generally takes me about an hour’s work and a few hours of rising/waiting.  Perfect for a 2am wakening on a slow pain-filled morning.

SO who wants to come by and have some bread?

Darkness, meet Dawn

2015-04-16 12.01.56

On Set In Loveland, CO March 2015

Hey Folks!

I’m writing the post that I’d been hesitating to write for over a year. [deep breath]

It’s been a pretty hard 14-month period, but also an amazingly great period. A dull twilight punctuated with glimmers of pure white starlight, and dark moments, too.

The Good

Andy gets a tattoo!

Andy gets a tattoo!

The family’s healthy—for the most part— we have a home, heat, food, running water and as much love as any family could need! I have exceptional friends, excellent work, beautiful yarns to dye and sell and one of the best business partners I could ask for.

The kids are beautiful and thriving, Andy’s doing well in her 2nd year at Earlham, Max is applying to various colleges (c’mon Hampshire!)

The Bad

Max Gerry Gustavus Tour

Max, Gerry & Jasper on a College Tour

Gerry’s health, which has fluctuated between very good and scary bad since his initial diagnosis with Multiple Myeloma in 2007, has been on a bit of a downswing. We’ve experienced worse, and as we experience the loss of friends with this disease on a regular basis we realize how fortunate we are, but it’s a constant mental and emotional burden.  But our dealing-with-ongoing-chronic/terminal-illness muscles have been honed, and we generally have a pretty good attitude about it.

I can honestly STILL say that the lessons that cancer has taught all of us—mostly about ourselves and our love—are worth learning.

The Embarrassingly Bad

In November 2014 I tried to kill myself, and I’m still dealing with the fallout.

I wasn’t depressed (well, no more than usual, like my father and many other members of my family, I suffer from depression and treat it with prozac, eating well and exercise)

I WAS, however, on a drug that caused me to behave in a way that was absolutely foreign to me.

Lyrica Blues

In August 2014 I was diagnosed with Shingles, and it was a bad case. The pain was overwhelming, causing me to be in and out of the ER several times. As part of my recovery, I was offered Gabapentine.  Having used it before for Fibromyalgia, I knew it did little more for me than make me dopey.

So then I was offered Lyrica, and the difference it made in my pain was outstanding. Not just the shingles, but my fibro pain as well. It was as if Annie from 5 years ago was back and I felt like a million bucks. Until I didn’t.

One evening, after a VERY silly and unimportant argument with Gerry (seriously, we argue as every couple does, this was NOT a big one, just silly…) I found myself sitting in the living room with a fully bottle Gerry’s pain medication that I’d picked up from the drug store that day, and without really knowing what I was doing, I poured a big handfull out and swallowed it.

It was surreal. It was almost an out-of-body experience. I still can’t quite believe that I did it. It was almost as if I were watching a movie of someone doing what I was doing.

Gerry was upstairs, the kids were out of the house, and something in my brain just said, “Hey, take a bunch of those pills why don’t you…?” So I did.

I told Gerry immediately. He didn’t understand at first, but when he got it, we were off to the hospital.

And here’s where it got interesting.

This guy would like a walk, too!

Help with dyeing

I expected to be questioned pretty thoroughly, perhaps admitted to a psych ward or something (the only thing I have to go on with this are Lifetime movies.)

But when I explained to the nurse admitting me that I was on Lyrica, and I had NO idea what happened, I just suddenly had 30 strong painkillers traveling down my throat.

And her response? “Oh, Lyrica. Yeah. We see that a lot.”

I was sent to an exam room where a doctor and nurse came in to give me charcoal to drink (I chugged two bottles in record time, good to see my college education paying off) and, when I explained to them what had happened, they replied in unison, “Oh, Lyrica, yeah. We see that a lot.”

They didn’t even have a social worker come to talk to me, they chatted, and on my promise to see my primary care doc the next day, I was released.

The next morning I did see my doc, we worked on a schedule to taper myself off of Lyrica, and I also saw a therapist for a few months.

Since Then

My bike, my man, my dog and a new haircut!

Pure Happiness; Gerry, Jasper & My Bike

I had never had such a strong urge to do myself harm before that night, and I haven’t had an urge like that since. Amen.

The fact that I DID have that urge is frightening; obviously there was something inside of me that felt entirely overwhelmed and full of despair. But it was the Lyrica that crystallized those feelings, that made them solid and compelled me to act on them.

I haven’t discussed this with the world in general (until now – hi world!)  My good friends, family and some of my customers have known, though. I’ve had several folks come forward to tell me they’ve had the SAME experience with Lyrica.

I’m not saying that Lyrica should be banned, but I do think that it can be a very dangerous drug, I’m proof of that. The entire time I’ve had Fibromyalgia I’ve worked hard to deal with that ongoing pain with diet changes and lots of exercise.  My instincts in this were more right than I could know, I’ll continue in this vein as long as I can.

Why Now?

So why am I telling the world this story now? I’m not entirely sure.

I feel as though there’s been a dark cloud on the horizon since this episode in Nov 2014. As much as I tried to fight through it, I would wake in the early morning hours gripped with terror (unreasonable fears; financial ruin, Gerry’s demise, something happening to the kids, etc.) and it’s been a long road coming back from the fear surrounding this episode.

Sunset, Ft. Myers Beach

Ft. Myers Beach Escape, Feb 2015

It’s just been in the past few weeks that I feel I’m finally passing out of this dark phase. I knew it would happen, I knew the light would shine again and I’d feel more like my best self. But it’s been a lengthy process of dealing with guilt for the fear I caused Gerry, anger at myself, and fear that I’d broken something that couldn’t be fixed.

But light is filtering through again. Many folks have written to ask why I’m not blogging as much, how come I’m not on Facebook as much as I used to be; this is the answer.

Last year I talked about my experience in front of a Multiple Myeloma group leaders at a conference . Lyrica is a drug that is commonly used within the MM community as shingles is often seen among these patients.

After I’d heard Lyrica praised over and over at the conference (and it IS a remarkable pain med!)  I wanted folks to hear from someone who had personally experienced the, “may cause suicidal thoughts or actions” warning first hand.

ModeKnit Yarn Cables

Thank Heaven for Knitting

As many of you know, I’m no shrinking violet and can speak in front of a room, but this was a terrifying experience; admitting that I’d done something so stupid and potentially harmful to my family. But I feel it was an important thing to do, and heard later from someone who’d had a similar experience in the group but had never talked about it.

So now you know.

I’d like to say, “Now let’s just forget this ever happened, and go back to life as it used to be!” and I’m trying to do that as much as I can. But I’ve stood on the cliff, I kicked a stone off and in an almost trance-like state, I followed it over. But I caught a branch on the way down and didn’t go splat.

ModeKnit Yarn_A Lovely Thing

A Lovely Thing, “My Year In A Colorway”

The reality of this experience had darkened everything I did for months.

I’ve been adding touches of black to many of our ModeKnit colors (which works well in many cases) but finally I feel as though I’m able to see many colors as they really are, pure and bright.

As much as I understand that there will be periods of light and dark in the future, I’m feeling more hopeful about moving forward than I have in – well – 14 months. Thanks for sticking with me.

MKY_all_the_colors