“Once more unto the breach…”

In many states once you get outside of the city areas the highways have poetic names like “Highway M” or, “Highway Z” or, “Highway PP.”

Every time Kathleen and I drive through Wisconsin we pass a sign that reads, “Hwy V”  I have yet to be on top of my passenger duties enough to snap a photo of the sign, but it always makes me smile and imagine that it’s pronounced, “Highway The Fifth” and can almost hear, “Once more under the bridge, dear friends…” in my head.

So yesterday I reentered the world of Chemo, this time for the third time, and the day was rough.  The chemo itself wasn’t TOO rough, it’s never terrible while I’m getting it.  It takes about a week for the effects to kick in.  But the start of this round are a few out-patient treatments, which I like better than staying in the hospital.

The main reason I like to be out of the hospital is that it’s always a crap shoot what kind of nurse one will get, and so far my odds are running 5-1 “excellent nurse, very helpful” vs “nurse who can’t be bothered, not great.”  The type of nurse that’s assigned directly affects the quality of care, kindness means SO MUCH and when it’s missing from the nursing equation, it can be a bit hellish.

Of course I’d rather have an efficient nurse than a sweet-but-clueless nurse (I’ve SELDOM had the latter, for what it’s worth) but overall I’d prefer an efficient and KIND nurse.

So yesterday, my day started with a Lumbar Puncture (and we know how I love those…)

I checked the online portal and was surprised to see my in-time had been changed to 9:15 from 9:30, so I rushed Andy along and we made it, but just a bit late.

Upon check in, though, we were told that the appt had been cancelled.  I’ve become used to Health East cancelling my appts on a dime, usually after an extended fasting period (this happened TWICE last week) but I was pretty frustrated.  The admin who checked us in was also flummoxed, she knows me and remembered my name and was surprised to see my appt had disappeared.

She asked us to wait to the side while she got a nurse to explain the situation, so we sat for about 20-30 minutes.  Finally a nurse came out and did the nurse-walk think I really hate (where they walk really fast but I can’t keep up because I’m on walker and in pain…)  As we entered the dressing area he turned to us and said, rather curtly, “You should have been here an hour ago, you know…”

And and I were NOT having it.  We kid of tag-teamed him, “No, we weren’t – until an hour ago the online portal said we should be here at 9:30!”  He was not having it, he insisted that it was folks like us who were late who held up everyone for the rest of the day.  We asked for a different nurse.

The new nurse was lovely, but she couldn’t access my port for love or money.  My port has been a problem since it was put in, and I always prepare myself for a decent amount of pain as they try to get the needle to work into the diaphragm of the port.  Even with the cream it’s very painful.

So as time ticked away, and they had to take person after person ahead of me, it became clear that this wasn’t working.  They sent me up to the chemo beds and the nurse in the chemo area had been able to access the port, although it took a bit of fiddling with a type of blood thinner to actually get my ‘blood draw’ to come through correctly.  I received my several hours of different chemo drugs.  By this point I was starving, but no food was allowed as the lumbar puncture’d been rescheduled for 3:30.

Back down to Interventional Radiology, this time I was the only patient in the area and was taken in pretty quickly.  I explained about the pain the last time I had the procedure and several of the nurses had been at previous non-painful punctures with me, so that was a help.  We made sure that a decent amount of time had passed between starting the pain meds and the actual puncture, which was enough to make it practically pain free.

Such a long, intense and confusing day is almost harder for Andy than it is for me.

Andy hates to wait in the hospital for hours, so generally after I’m settled in someplace they’ll bug out and run home to check on Gerry, take the dog for a walk, and come back in time to see me settled into my next appointment.  Sometimes this works great, but sometimes this can lead to a bit of a traffic nightmare with Andy finding themselves between locations when I need them near me for some information stuff, or with it just taking longer to get from point A to B than Andy expected.

So as frustrated and exhausted (and hungry) as I was at the end of my day, Andy was almost MORE frustrated.  Thankfully they had brought me some food, so when the only think I really felt like I could eat from the menu (red jello) wasn’t available, Andy had an alternative for me and it was DELICIOUS.  But we had a rough ride home.

These long, long, hungry and painful days are not fun for ANYONE.  Maybe we should’ve taken “Highway The Fifth.”

Bad Trip

FOUR bags of chemo, hanging on a pole.

I think everyone’s had at least ONE bad experience with chemistry.  Generally the chemical is alcohol, and the experience is drinking too much, getting too sick, and then feeling way too remorseful.

My mother, who I think of as perhaps the most Perfect Methodist To Ever Walk The Earth (except for the smoking thing…) had one foray into the land of the grape.  Several years into their marriage, at a party, she drank some wine.  Knowing my mom, it was probably all of two glasses, and she got sick as a puppy.

Dad took her outside and walked up and down the snowy streets of Toledo, hoping the fresh air would revive her.  It ended, as most of these episodes end for folks, with one person retching into the gutter and the other person holding their hair, the definition of love and friendship for many relationships.

That was the last deop of alcohol my mother ever touched.
My brother and I were mom’s unwilling audience to this tale every time we left the house in our late teens and twenties, and we would recite it along with her.

My first experience wasn’t far off my moms, and involved a frat party, a walk home by a guy I had a sort-of-crush on, a quick hug-and-kiss on my doorstep, and a well timed slide into the suite bathroom (no gutter for Mabel’s daughter) where I expelled the several glasses of “punch” I’d imbibed earlier that evening.  I’d like to say THAT was the last drink I ever had, but I wasn’t as wise as my mother.

New chemo slogan for Cream of Wheat: “As easy going in as it is going out!”

Today felt like I’d visited a different kind of frat party, one where the drinks and drugs weren’t imbibed, but were dripped into my veins, drip, drip, drip, and with each drop I felt less like a human and more like some kind of biology experiment / human sponge.  How much can I absorb?  What exactly AM I ABSORBING?

Every time they’d change the hanging bag of clear fluid, the nurses (who are the real heros of this tale) would describe to me WHAT they were giving me, HOW it might affect me, and WHAT I’d be receiving to offset the effects of the chemo drugs.

Better living through chemistry!

So although I’ve had chemo before, a few weeks ago, I can honestly say that R-EPOCH was a walk in the park compared to my foray Thursday into CODOX=M/IVAC.  And I didn’t even have the hardest part of it Thursday!

There’s no need to go into gory details, but the hardest parts of the day was the overwhelming nausea (yes, I was ill several times — I feel as though I’ve REALLY had chemo now; Bald Woman Throwing Up? check!)

Even more difficult was the IVAC portion, which involved me moving onto a skinny bed and being wheeled down to a sterile room (watching the ceiling fly by while nauseus is – nauseating…) where I was moved on to a SKINNIER table—I swear it was 9″ (it wasn’t 9″) and a needle was inserted into my spine so meds could be delivered, a lumbar puncture.  A spinal tap.

My happy place involves an early autumn walk on a sunny morning, the light, the shadow, it takes me away to a more beautiful space.

And this time it hurt, when it hasn’t before.  Hurt like hell.  But there is NO SQUIRMING ALLOWED because I have a goddamn needle in my spine and I’m lying on a 9″ (it wasn’t really 9″) plank.

You squirm, you could become a worm. 

I just made that up, but it could
be the tagline for a spinal tap. NO MOVING.

We have children for many reasons.  For me, one of the reasons has become clear through this whole episode in my life.  At the best of moments, the love I get from my kids is the closest thing as the LOVE I would feel from my mother when I was sick.

All I wanted when I got back to my room after the spinal procedure was to see Andy, but today was a terribly, rainy, pain-filled day for Gerry and Andy had other parental duties to discharge.

So back in my room, more hanging bags of clear liquid, more pokes and prods, more nausea (but no more vomiting, which was an incredible mercy – the anti nausea drugs they have now are amazing!) and just more exhaustion.

I never had any idea how exhausting just laying in a bed could be.

I couldn’t bring my self to actually eat anything.  All I wanted was a milkshake, and when Gerry and Andy arrived I sent Andy out immediately — into a terrible rainstorm — to get me one. Bad mommy.  And Andy brought it back to me. Good  Andy!

And that milkshake was the best thing I’d ever drunk.

One of the side effects of a chemical I’m being given is that it will effect my hand writing and my gait.  I was WAY too sick to walk around today, but at least twice a day I am supposed to write a sentence that proves that my handwriting hasn’t changed and that part of my brain isn’t being affected negatively.

Handwriting looking about the same…

I SHOULD have started by writing really badly, so I could say my handwriting has IMPROVED, but I didn’t think of that.

The sentence I chose? “There’s ALWAYS money in the banana stand.” No one, not ONE person here at the hospital, got it. I feel so old, was Arrested Development REALLY 25 years ago? No, it wasn’t.  But it feels like it…

So, finally, at midnight (Hello Friday – WHAT JOYS will you bring me today?)  I’ve had enough time away from chemical drips that I am able to sit up without nausea, and I’m able to write back to friends and family and catch up on the blog.

I have a taped-on heart monitor to make sure my heart rate doesn’t speed up too far, which greatly inhibits my typing skills, but it’s a sacrifice I’m happy to make.

My goals are to stay put. To get through this thing in one place, mentally and physically. TO just BE HERE, to be present, and to GET THROUGH IT.  I would give anything to run away, but that’s not possible, you cannot outrun cancer.

Part of staying put will be trying to keep my good numbers up; good platelet counts, good hemoglobin, just GOOD numbers.  And to keep the bad numbers down; heart rate below 100.

If I can succeed in this, I will be deemed ‘healthy enough’ to continue with the CODOX, and for me that means STAYING in one place, staying with the “hard” chemo.  For once in my life reaching for the toughest rung on the monkey bars

Low arm strength vs high body weight =
notorious NON reacher of far off monkey bars.

If I don’t succeed in this I’ll need a transfusion.  That DOESN’T mean that CODOX is out, but if I slide too much farther backwards then it might be.

I’ll be going home on Sunday, huzzah, and THAT means I’ll be able to have salmon and spinach again, my own home made yogurt and other foods which I feel have been able to keep my numbers on the good side of the equation.

The food here at the hospital is – well – it’s hospital food.  Not great, and kind of flavorless unless it’s too salty.  Of course, that could be my own sense of taste, which is being affected by the return of the chemo mouth-sores.

Tomorrow I’ll ask Andy to bring me a bunch of my ice pops, they’re one of the few things that I can eat when my mouth is so much in pain.

I wonder if we keep them in the freezer here they could remain unmolested..?

Aaaaaaaaaaah!

Respite

What a lovely weekend!

My first day at Denison I met Ellyn Shannon.  She was having the WORST allergic reaction to the Ohio Valley humidity and fall allergy triggers, she was sneezing and stuffy and could barely open her eyes.  I think for the first few days of college, she was prone on her bed, face down, suffering the torments of the damned.

Ohio valley has that effect on first time visitors from the east coast,
the weather + allergens + humidity can be BRUTAL.

Ellyn and I became very good friends.  The first time I ever visited New York City it was to stay with her family.  Her dad took us to my first Broadway show (Ain’t Misbehavin’) and I had my very first cannoli en route to her home in Rye, NY.

We traveled to London together after college, and had a BLAST!  As I’ve said before, if you can travel with a friend, then you can be FRIENDS FOR LIFE! 

Ellen Ponders The London Tube, 1983

She didn’t stay at Denison for her entire college career, eventually getting her bachelors & then masters degrees from NYU.  For whatever reason, Ellyn never entirely seemed to understand exactly how brilliant she is, which is true for so many women, but perhaps that is changing?  I hope so.

As friendships do, ours went in and out of various phases; sometimes we were so close, then there were periods when we were out of each other’s lives for long stretches.

But the mutual respect and love we have for each other hasn’t dimmed since that first weekend when I tried to relieve her allergy suffering, but didn’t do much more than hand her tissues.

Early Morning Chatter

Ellyn, Annie & a Yeomen Warder in London, 1983

For the past few weeks, since my Lymphoma diagnosis, Ellyn’s been up each morning early and we’ve been messaging each other.  Sleeping has been hard for me, but knowing that I have a friend in NYC who has to get up at 6am (5am central time) and who is happy to chat with me for a few minutes, has made my sleepless mornings easier.

So imagine my joy when, on Friday, Ellyn confessed to me that she’d booked a flight out to St. Paul and would be staying the weekend!!  She also booked into an Air BnB, but – luckily – her host contacted her on Sat morning to tell her that she’d have to cancel the reservation, so Ellyn was free to stay here, in Max’s room!

It’s been SUCH a lovely weekend.  A lovely, silly, boring, wonderful weekend!  I’m not able to do much, and this weekend my exhaustion and nausea levels were pretty high, but Ellyn was cool with just SITTING on the sofa and watching cooking shows while we giggled and ate ice cream with Baileys.

Bulb Life
Living in NYC, Ellyn doesn’t have a yard, so she happily did some weeding around our house, and also planted a bunch of bulbs, sort of as a gift for me, although she claimed that she was doing it for fun.  My intention wasn’t to use her for free yard labor, but as long as she was volunteering…  Now, THAT is a good friend!

Gerry and Andy and Ellyn have gone off to Lake Phalen to visit Kwan Yin and take the dog for a walk.  I’m sitting here on the sofa, too tired to go with them, but SO happy that my family seems to love Ellyn as much as I do!

Traveling out here from NYC was such a gift, such a kind and wonderful thing for Ellyn to do for me.  I am so grateful, and I’m also just a bit exhausted, but in the BEST possible way!  Thank you, Ellyn!

Fan Mail From Some Flounder?

Flowers From ???
Andy received a GORGEOUS gift of begonias and cyclamen from Bachman’s greenhouse, and they are SO lovely!  The only problem is, we have NO idea who sent them!  If you sent them, and you don’t mind telling us, we would LOVE to thank you!

Andy’s been growing several different varieties of cyclamen this Summer, she seems to have inherited a love of plants from Gerry’s parents, which is absolutely stellar.

I have NO ability to grow anything, but I can appreciate a nice plant!

Spinal Taps
After a bit of a hiatus, I’ll be jumping back into the chemo pool this year.  On Monday, and then again on Thursday I’ll be getting Spinal Taps (testing to determine exactly WHAT kind and how strong the next round of Chemo should be)

My doc from Mayo, who is no longer my doc, but is still a wonderful person, has been on the phone with my doc from St. John’s up here in Maplewood, and it sounds as though there may be some kind of meeting of the minds on the direction that my chemo might take.  I’m just anxious to have a chat with Dr. N, and get a feeling for exactly how much my cancer’s metastasized since my last chemo week.  Not knowing is hard, it leads me to imagine all sorts of unpleasant scenarios.  I just want to have a good idea of WHERE my body is in this whole cancer journey right now.

I know I have pain, and I know I’m experiencing incredible exhaustion, but I don’t know where I stand right now with the actual cancer and tumors that are growing in various places in my body.

More Weight

There is an odd heaviness surrounding me right now.  My legs, hips, my arms – everything just feels HEAVY.  As if I’m wearing those velcro-on walking weights, as if there’s been an extra 5 lbs added to every limb.

I don’t know what this new symptom means, but it reinforces that
today is a REST DAY, a sitting in my chair and crocheting day.

Cardiologist
Gerry and Andy are headed down to Mayo (we just can’t get enough of that place…) because FINALLY Gerry’s been assigned a Mayo cardiologist to coordinate his heart condition with his Multiple Myeloma.  We’ve sort of been in a holding pattern as far as HIS chemo goes since March, when he was put on Velcade, and that drug seemed to cause conditions where his two heart attacks (March 15 & 30) happened.

I’ve watched Gerry slowly sinking into a very sad mindset, I know he’s feeling so overwhelmed by weakness, and some days I feel like he’s in danger of just giving up.  When he was getting Cardio Rehab he was doing SO well, every day he was a bit stronger, walking a bit longer, just feeling BETTER!  I want that Gerry back!

Around the time I was diagnosed with my cancer, in late July, Gerry had another heart pain episode. Not a heart attack, just angina (that’s a silly way to phrase it – there is NO “just” with heart pain!)  That really seemed to set him back, and my cancer diagnosis didn’t help matters.

And at the same time, it seemed like he couldn’t get in to see a cardiologist up here through HIS clinic (we have different insurances, different clinics – we’re just weirdos) and  instead of me following up on that (as I normally would…) I was dealing with my own health stuff and he was dealing with it right along with me.

So we’re hopeful that this Mayo trip will be the start of a BETTER care plan for him. We want to be able to coordinate his heart AND his Multiple Myeloma treatments so that the left hand knows what the right hand is doing!

Today is mostly testing, then on Tuesday he returns to have an actual VISIT with the cardiologist.  Andy is run pretty thin between Gerry and myself, so we are SO grateful to a good friend’s husband who has volunteered to be driver for Gerry to get him down to Rochester and back.

I don’t dare send Gerry down alone.  Each time I’ve driven him in the
past few months he’s fast asleep by the time we’re past the city limits,
waking up just as we pull up to Mayo.

I am still Gerry’s caregiver, although not as active as I’ve been in the past. I’m not able to carry as much of the burden as I used to, it’s too heavy in addition to my own healthcare issues.

Oncologist
As I’ve stated before on this blog, I’m not a doctor (I don’t even play one on tv…) and for the most part test results just go over my head.  But apparently some of the testing that was done down at Mayo over the past 2 weeks have yielded results that give my oncologist up here at St. John’s, Dr. N, something to consider.

It seems that the cancer is now in my nervous system, and in* my bone marrow, and that’s not good.  Yesterday, instead of getting the spinal tap I usually get (little did I ever think that the words “usually” and “spinal tap” would be used in a sentence involving my health) I was told to just stay home.

My doctor is ‘regrouping’ and I’ll be seeing someone (Doctor? Nurse Practitioner?) on Monday to discuss the route forward for my treatment. During next week I’ll be getting two different Spinal taps, because I am VERY special.

It would be ironic if, after all of the Mayo drama of the past week, I ended up receiving the same chemo cocktail that Dr. T was proposing, but via a different clinic up here (the University or Park Nicolette)  Maybe ironic isn’t the word.

One thing I know for a fact, though, is that I HATE feeling like something is growing & spreading, and I’m just sitting here having a cup of tea.  The exhaustion I’m feeling is absolutely overwhelming (just when I thought I couldn’t get any MORE tired!) and lifting the tea mug to my mouth takes a Herculean effort.

Everything is heavy these days.

*I was, thankfully, mistaken about this.  I misunderstood something my doctor at Mayo had said, but she just messaged me with clarification.  Yay clarification!

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.

Calm Before Thursday

Here’s a partial list of what the past seven days have entailed;

  • A trip to the Mayo Clinic
  • A meeting with Dr. Gita Thanarajasingam
  • A high fever & heart rate led to an admission to St. Mary’s
  • A hard ride home (car rides have become difficult…)
  • Hair loss = Head Shaving
  • Increase of pain due to metastasis of back tumor
  • Decrease of pain due to increase of pain meds
  • Mouth sores = Thrush = new meds = healing mouth!
  • A fall in the rain = twisted ankle = no big deal!
  • A decision on where to get my chemo treatment = Mayo!
  • Realization of true auxiliary costs to be in Rochester for treatment
  • GoFundMe to raise funds for accommodation during treatment
  • GOAL ACHIEVED of GoFundMe (Thank you, everyone!)

As you can see, it’s been one of the busiest weeks I’ve had since my initial diagnosis on July 23, 2018.

Six Weeks
Which was six weeks ago.  Which blows my mind.

I know it’s an old saying that life can change in an instant, and a diagnosis is NOT a life change.  The change had been happening slowly over the past months/year as the tumor in my spine had been growing, as the Lymphoma had been blooming like a forsythia branch across both sides of my chest.  And the past six weeks has been more than an “instant,” it’s been — well, six weeks.

Six weeks have never felt both as long, and as short, a span of time as I’ve experienced.  This week feels like a change in my recovery, though.  It feels like a point where I realize that I MUST take the reins, that I must be the captain of my own ship, and this makes me a bit scared, but also very strong.

Who knew that fear and strength could live so comfortably together.

New Direction
So today, with my early morning appointment to double check whether I will require a transfusion THIS week at St. John’s Cancer Center, will be a kind of ‘rest’ day.  It will be a chance to see the Chemo nurses who have been SO amazingly wonderful, to thank them, to discuss with them that I may be getting my Chemo down in Rochester.

I know that no one is invested in my staying at St. John’s, I know that the most important thing is that I get the absolute BEST treatment for my own body.  Avoiding a future relapse is my #2 priority. (#1 is beating this Lymphoma and going into remission)

I think Mayo will give me the best option to reach outcomes #1 & #2.

Break Up?
Yesterday I discussed this with my Radiational Oncologist at St. John’s, and she assuaged a bit of my — guilt? — at my ‘breakup’ with St. Johns.  I know this is the wrong way to consider this decision, but it does feel as though I’ve spent six weeks with one team, who has worked hard to get me to a plateau stage where I can even consider beginning chemo, only to move on to a different care team.

No, I definitely don’t feel GUILT, but I DO want St. John’s to know how grateful I am, although at times it was a rough gratitude, for their care and hard work for me.

Worry
I try hard NOT to be a worrier. I try to deal with worries in an intelligent manner, working through what it’s possible for me to affect, and what is beyond my power, and just deal with what can be dealt with.  It’s the same way I try to deal with guilt and shame, my mother used to say, “If you feel guilty, fix it. If you feel ashamed, apologize.”

It sounds simple — and I guess on one level it is — but it’s not EASY
Nothing about this has been easy.

I have worry about Gerry and his heart.  Right now his OWN cancer treatment is kind of on hold while we deal with his two heart attacks in March, and it seems the way that we’re ‘dealing’ with the heart condition is to — just sit and watch it?  He stopped his cardio rehab after another heart pain incident this Summer, and it hasn’t been started again, but it’s something that really WAS doing him a great deal of good.

So on Thursday when we return to the Mayo we’ll be there for TWO reasons.  As discussed above, I’ll be meeting Dr. T to discuss chemo treatment for my own cancer, and we’ll be visiting Dr. H (Gerry’s Hematologist) to talk about his OWN Multiple Myeloma, where he is with his numbers, how HE’S looking and what the next step is in HIS recovery.

I will always be Gerry’s caregiver.  Gerry WANTS to be mine, but his health isn’t allowing that.  Every day I’m so grateful that we have Andy to step in and fill in the gaps Gerry and I are leaving in each other’s lives, but that is NOT a fair place to put Andy in for a long haul.  And I’m hoping this is NOT for the long haul.  Thursday will be a big day for all three of us.

Thank heaven for Andy.

Resting
Aside from my appointment today, and some yarn wringing out that I’m going to wrangle Andy into doing for me, today is a REST day.  No walking, no trips, nothing but sitting on my butt, knitting, watching some TV and RESTING.

Yesterday I attended a support group meeting, a very lovely group of women who all have Stage 4 Cancer diagnosis.  However, I don’t feel the group is right for me at this time — I’m a bit ‘group shy’ right now and want to avoid the chance of infection
(several of the group members were coughing and sneezing yesterday.)

With two doctor visits and the support group, I was absolutely SHATTERED with exhaustion yesterday, today is Resting Wednesday.

I need this.

The Complexities of Gratitude

Happy Pumpkin Head

Thank you.

It took me SO long to learn how to say those words.

MUSIC MAN
I remember high school as years of pain, I was the poster child for “outcast” and ate my lunch just about every day up on the stage in the auditorium, surrounded by paint buckets and canvas flats, usually alone, happier than I would be at any other time during the day.

But a magical thing happened near the end of my last year in high school.

I became, briefly, popular (in a vague sense of the word…)

I left high school a year early and went to college at 16 (I turned 17 my first day at Denison University, in Granville, Ohio)  My last year of high school was my Junior year, and that was the year our Theater department put on The Music Man.  I was cast as Mrs.  Paroo (Marilyn’s mother) and I was damned good.

Let’s face the fact that character parts are WRITTEN
for overweight outcast high school juniors.  It’s simple truth.

So there I was, extremely funny; hilarious, even!

The day before the all-school matinee performance I couldn’t walk through the halls without being assaulted with cries of “BIG RED!” or “MOOOSE” (did I mention I was overweight…)

…and then the tone changed, and the cries I heard were, “Hey, it’s MAMA PAROO!” or “DAMN, GIRL, YOU ARE FUNNNNYYYYY!”

…and I had NO idea how to respond.

My first response was to flee.  To run.  To head to the bathroom and hyperventilate into my lunch bag.

My second response was to cry.  Publicly.  After all, “If you do something well, you should do it often!” (my mother used to say…)

But I did neither.  I found that the best thing to do was to simply say, “Thank you!” and smile.  So I did.  And I learned a lesson that most folks learn when they’re 12, when they’re not hiding from school bullies and/or their father, just being “normal” kids, trying hard NOT to draw attention to themselves while at the same time CRAVING that same attention.

I learned to simply say “Thank you.”  Two simple words.

And that’s what I say to all of you right now – THANK YOU!

MAYO GO?
Yesterday, faced with the fact that if I didn’t find a way to come up with money for lodging while undergoing my chemo at the Mayo clinic I might possibly NOT be able to actually GET the chemo, I became overwhelmed with frustration.

This “Cancer Road” has had both good days and bad, there have been many more good days, but yesterday was a very bad one.  It was my birthday—a happy one—but I was plagued with fear about NOT being able to go to Mayo for my chemo.

Mayo is where Gerry was treated 12 years ago for Multiple Myeloma.
An expert in my type of cancer has agreed to take on my case,
and there’s a chemo protocol she’d like me to enter into that I can’t get anywhere else.
Going with the Mayo Clinic seems like a no-brainer.

However, an oddity of Mayo is that most patients are treated as out-patients, which reduces the stress on their staff taking care of admitted patients, and also reduces the chances for cross-contamination or infection.  We discovered this when Gerry was being treated, and it makes sense when you think of how many infections and diseases are ‘picked up’ at the hospital these days.

This means, though, that food and accommodation must be figured into the budget of any Mayo patient.  There is a whole sub-economy of apartment and house rentals, and there are SO MANY HOTELS in Rochester (just about all of which have a discount plan in place for patients) that there should never be any question of being able to FIND a room.

The problem comes with PAYING for that room.

My own chemo will be on an odd schedule; a week on, then two weeks “off” when I can return to St. Paul and be monitored by St. John’s Cancer Center (where I’m currently being treated with a less strong chemo regime) 

This is different than most Mayo patients, who come and stay for a period, then go home.  I’ll be coming and going, but the overall time frame will be at least 4 months.

CHARITY HOMES
None of the charitable homes run by the American Cancer Society (or other helpful organization which hold rooms open for folks) in need have ANY vacancy.  These are amazing resources, and I wish that I had the luxury of a clear schedule to arrange these kind of accommodation a few months out.  But I don’t.

I have a very fast-moving cancer, it’s already changed SO MUCH in the short 6 weeks since my diagnosis, it’s not something we want to play with.

AIR BnB
All but the priciest of Air BnB’s are booked up during the weeks when I’ll need them (obviously folks would MUCH rather book someone in for a month instead of a week or two each month!) 

Air BnB can be an amazing bargain, but only if you can find the accommodation to fit your needs at the right time.   I’m looking for a small 1 or 2 BR apartment, hoping one will open up for the dates I need, but right now all that’s showing up during my proposed chemo rounds are upstairs apartments (I’m no good with too many external stairs right now…) or larger full houses which are too expensive.

When you glance at the homes on Air BnB, it may look like there are SO MANY BARGAINS! And there are.

Spam Wellington. You will NOT get this at fine dining establishments in Rochester.

But there are also SO MANY FEES, and by the time you’ve found a place where the available
dates mesh with chemo and physical needs, the price has easily crept up into hotel costs,  but without the convenience of an elevator, cooked breakfast, shuttle service, covered parking,  or any of the other things that make such a
huge difference in the life of a cancer patient.   
Having been through this with Gerry,  I know how much those silly little things really matter.

HOTEL
This leaves hotels as the best fit.  Hotels also tend to be more sanitary, with new towels each day and daily cleaning.  For the most part, the hotels in Rochester are aware of their special role in recovery, and take hygiene very seriously.  Also, because Kathleen and I travel so often for business, we are signed up for several mileage programs, which can get me an extra night here and there, and will make a difference.

Doing a cost work up (thanks, Deb!) I realized that for a four-month round of chemo I would need approx $2,000/month to cover expenses for myself and my caregiver (Andy)

So I did what I was loathe to do.  I set up a GoFundMe.

It bothers me that GoFundMe presents themselves as part of Caring Bridge, gets a ton of good press for being so pro-patient (over 70% of GFM campaigns are for medical expenses) BUT they also take a cool 5% off of each fully funded campaign PLUS additional fees.  I know they’re a biz and have to make a living, but that’s steep.

Almost FUNDED!

GoFundMe
Part of me wants to run and hide; after all, it’s a bit shaming to have to go, cap in hand, and beg real and cyber friends for money to be able to embark upon life-saving treatment for a deadly cancer.

Part of me wants to be all blown up with pride: LOOK WHAT MY FRIENDS DID!  But that is a terrible response to such kindness.

And it would be, in itself, unkind to those who aren’t lucky enough to have the large circle of folks I’ve lucked into!

WALK UNDER LADDERS
I happen to be among the luckiest folks I know (money issues not withstanding)

I am lucky because I get to do what I love, and in so doing it, I get to make hundreds of friends each year (otherwise called “Students” and “Customers” and “Fiber Biz Owners”) and, even FURTHER, I am so DAMNED lucky that I get to actually MEET these folks again and again at fiber shows and in classrooms.

Freelancing; owning one’s own income, this is not an easy road to walk in our American society.  We talk about loving independence, but our entire financial system is set up to reward ‘Company Men’ who throw in with a corporation in exchange for a low-wage paycheck and any kind of health insurance.

I’ve chosen a different route; creating my own business, and in so doing creating a couple of extra jobs in our community.  Living in Minnesota where the ACA hasn’t been dismantled makes this possible, but it’s never easy.  I know exactly how lucky I am to be here, and I am VERY grateful to the legislators of MN who help make this possible.

But self employed means, generally, skimping on things like Disability Insurance.  Or very good supplemental insurance for things like lodging when seeking treatment.  This is just one of the truisms of life.  Health insurance; check. Car insurance: check. Disability insurance? We can live without that.

OVERWHELMING WEEKEND
It was, overall, an incredibly overwhelming weekend.  Unexpectedly, I’d had to spend 2 days at St. Mary’s hospital in Rochester (part of the Mayo campus) because I had a pretty high fever and very high heart rate when I had my consultation and my new doc wanted to admit me.  It took 2 days to get my numbers back to ‘normal’, and it was a very stress-filled weekend.

Bye, Bye, Hair!
Then my hair started falling out in MASSES.  I can take a bit of hair-fall, but when it began clumping into my lunch, I was over it.  I knew it was time for the head shaving, and Andy and I made a fun video of it, but it was STILL one of the more stressful adventures in this journey.

Then there was my birthday to consider.  Yesterday I turned 57, the age my dad was when he passed, and in a yearly fist-shaking admonishment to his memory, I have sworn to OUT LIVE him, live beyond 57.

The irony of having THIS cancer during THIS birthday hasn’t been lost on me.  I can see Dad shaking his fist right back at me.  But he missed me this time!

FALL DOWN
And then there was a fall that I haven’t talked about.  I fell on Sunday morning, in our driveway, while I was out for one of my walks.  It was raining horribly, just pouring down, and I lost my footing at a very slanted part of our narrow drive.  I feel backwards, twisting my ankle pretty badly, but not doing any other damage.  I fell right into an incredibly soft bank of earth, so I was dirty, but fine.  Except for the ankle.

By Sunday evening the ankle had swollen pretty badly (it’s MUCH better, now, thank you!) and that was in my head.  I did NOT want to go to another hospital just to be told, “Ice it, elevate it, you’ll be fine!”  Besides, tomorrow I’m seeing my doc, so if there’s anything untoward I’ll be right at St. John’s, close to the ER or anywhere else.  That added a good amount of stress to the weekend.

So by the time I fully realized that my ability to accept the gift of a Mayo treatment plan hinged on my ability to pay for a hotel, I was ready to fall to pieces.  In fact, when Kathleen came over to drop off a lovely ice cream birthday cake, I was in quite a state.  Weeping, sad, scared, all of the emotions that are so difficult, but so necessary, to get out.

Perhaps because of this need to deal with the emotions, I finally decided to start the GoFundMe I’d been secretly afraid of, and it looks as though I’ll be fully funded very soon.

Spam Wellington, because you cannot get too much of a good thing.

Which is insane. AND amazing, AND which truly feels like an out-of-body experience.

Which leads me to pure gratitude.  THANK YOU.

And, apropos of NOTHING, I give you a dish I whipped up this past week. Spam Wellington. 

Because it was my birthday.

Beasts & Dragons & Maps

It’s the end of Chemo Week 1, and it’s been surprisingly good!

I love a good map. Right now my online friends are drawing one up for me each and every day.

Here Be Dragons
Not having gone through chemo before, I don’t have a point of reference for how this would have felt without the amazing anti-nausea meds that are available now.

Someone described their chemo experience on my Facebook page as “flu-like” symptoms, and for me that’s definitely been the case.

These “Cyber Sherpas” help me much more than they’ll know.  And I take their advice with gratitude, with love, and with a grain of salt.

I look things up, I ask my doctor about some of the suggestions, and one or two things my doc has pooh-pooohed.  However, for the most part the assistance of folks who’ve walked this walk before me is golden, and my doc & the chemo nurses let me know how lucky I am to have a wide and world-encompassing body of Volunteer Guides.

The Best Laid Plans
Right now I’m supposed to have a tiny little pump filled with a drug called Neulasta chugging away on my stomach, but unfortunately it fell off in the midsts of 100% humidity and so much internal (from my hot, hot, body) heat.

Neulasta Pump

So instead of the pump I’ll be returning to St. John’s Cancer Center tomorrow for a Neulasta shot.  I mentioned this on Facebook and immediately received several suggestions to help deal with the bone pain the drug may cause prophylactically, and that kind of back and forth between me and folks who’ve walked this walk are priceless to me.  To be honest, I didn’t even KNOW there might be bone pain involved in this phase of the treatment, I am SO grateful to my online friends for pointing this out!

Claritin & Tylenol, at the ready, Barb!

Help From My Friends
I’m not looking for a “real life” support group right now, I don’t have the energy to get someplace on a regular basis, to meet so many folks, and—most important—I’m desperately trying to avoid other humans as I move into the phase of my recover where it’s quite easy to get an infection.

My white blood cells have been reduced because of the strong drugs I’ve been taking into my system 24/7 for the past 4 days, and a low WBC count = an opening for some galloping infection.  Time to call the cavalry.

Our family has been living with a higher likelihood of infection for years.  We take this into consideration with Gerry’s heath and also because of my Fibromyalgia.  When the kids were in high school, it felt as though every day brought a new cold or flu to our household.

I learned then that to venture out into the world Gerry and I would both need to use a battalion of helper soldiers (Emergen-C, Airborne, hand sanitizer, etc.) and that has been helpful in allowing me to keep teaching around the country from fiber show to fiber show without picking up something bad and bringing it home to grow.

But now, with the Lymphoma, getting an infection is more serious.  The Neulasta is designed to help with that, and according to my impromptu online support group the Neulasta can cause some pretty incredible bone pain.

Fear has it’s uses, but cowardice has none. — Ghandi

This is a bit of a rambly post, I think that has a lot to do with a week of very little sleep and a LOT of chemo drug therapy.  In the coming week(s) I may need a transfusion or two to help with my strength.

But what I DO want to convey in this post is my gratitude to all of you who have traveled on this road, and have reached out to me, showing off signposts and short cuts along the way.

Thank you.  You make me feel braver than I am, and I am grateful!

A Uniform

Uniforms are something I don’t have a lot of experience with.

Just a bit of hand sewing to go!

I never wore one in school, even in gym class we were able to wear whatever we wanted (that had changed a few years earlier, much to everyone’s great joy!) and my few forays into the fast food industry in my teen years were about as close as I got to life in a uniform.

But now I want one.  I want a Chemo Uniform.

I want something that’s easy to put on, take off, wash and just NOT THINK ABOUT.

Perfection would be a pretty linen dress that’s a big apron with lots of pockets. So I made it.  I may make another (in a different fabric) because this is going to be going on for more than a few months, and I just don’t want to have to spend time deciding what to wear each day.

So after pondering many images on pinterest, considering the important elements that matter to me, I pulled out some Laura Ashley fabric that I’d had squirreled away for almost 20 years and got to work in the wee hours.

Sleep comes around 9 or 10pm, and I enjoy it.  Then around 2 or 3 I wake, around 4 I get incredibly uncomfortable in my bed (laying can make my back ache, especially now that there are MORE tumors that have appeared in my hips and tailbone) so I get up and sit, read, knit, just change my position.

This morning my position was at the dining room table, sewing away on a machine I purchased last year at Stitches Midwest, and I finished my little dress in just a few hours.  All that time working in costume shops pays off when I want to whip up a new dress idea!

I’m gravitating to blue, which is my favorite color. I have SO MUCH BLUE in my box of fabrics, and I have ideas for more dresses and for a few pair of pallazzo pants which are easy to wear and easier to sew up.  I have a pair that I made in an exquisite rayon fabric back in 1990 that look pretty much as they did the day I sewed them.

Quality fabric is NEVER a mistake, buy the best fabric you can afford and you’ll have a piece you can wear for years!  If cancer’s given me anything so far, it’s time to stop and contemplate things I’d like to do, and realize that if I don’t do them now, I may not get another chance to.

A very dear friend, Jolanta, who some of you may know as the “bead and jewelry woman” from Stitches Midwest, sent me a care package yesterday with beautiful wafers, some chocolate AND a gorgeous Lapis Lazuli necklace.  Blue, and calm, and lovely.  Perfect for chemo therapy.

Fear Returns
The fear of cancer is always here, but the fear of BONE PAIN haunts me like my insane fear of flying, stinging insects.  I just received a note from MyChart (HealthEast’s portal) that I’ll be getting another lumbar puncture on Tuesday morning. This is a surprise, and I’m sure we’ll be spending a good deal of the day on Monday explaining that I WILL NOT HAVE THE PROCEDURE if they don’t include some anesthetic.

The place where I’ve been scheduled to get it is exactly where Gerry went for his first, with NO anesthetic, and it was absolutely horrible.  The two procedures I had along these lines this past week were both under anesthetic, and even then THEY hurt like hell for a few days after.

I keep running into folks who say, “Oh, I didn’t even FEEL it!” and I wonder at their strength. I know I’m a baby about a lot of things, this is one of them.

Another Class
On a MUCH brighter note, I signed up for another class at the MN Textile Center.

We are SO fortunate here in Minneapolis/St. Paul to have a wealth of museums, fibre and fabric resources and an AMAZING textile center.  The class I took in rug hooking in the Spring was SO exciting for me, so enjoyable.  It’s funny, I felt myself becoming weaker, more tired, with so much pain as the class went on, but I LOVED the class so much.

Now I’ll be taking a class called, “Wearable Art” and I’m really looking forward to utilizing some of the lovely fabrics I’ve been collecting over the past 30 years. Andy will be accompanying me to class as I’m not allowed to drive (too many drugs in my system.)

I’m looking forward to being in the class with Andy, who is beginning to find a love of stitching and fibery things.  Perhaps that’s something else that cancer will give me, a chance to connect with my kid on a whole new level!

I’ve never been shy about explaining how Gerry’s cancer, as scary and terrible as it was/is, was in many ways a gift to our family.  We don’t hesitate to tell each other we love each other, we know that time is never on our side.

So this morning I contemplate a nice amount of hand-sewing to finish my dress, and I ponder how lucky I am in the midsts of such a scary shit-storm of malignancy.  Please don’t think I’m a Pollyanna, I’m having a rough time dealing with many aspects of this journey I’m on, but I KNOW how ungrateful I’d be to NOT recognize how fortunate I am, too!

Fundraiser
We still haven’t heard whether I’m approved for SSDI, but I’m crossing my fingers.  Until then, life is a bit scary because so much of my projected income this year was going to be from classes I was going to teach at various fiber shows.  Add to that the medical expenses (it feels as though every week I’m dropping another $150 or $200 for copays and not-entirely-covered procedures.

If I DO quality for SSDI, the kicker is that it will be at a pretty low rate since I’ve been self employed while caregiving for Gerry for the past 12 years.  In our Social Security System, women who care for family members NEVER get a break, and it stinks.

Compared to what this adventure MIGHT be without insurance, we are lucky.  But it’s terrifying to see the bank balance go in one direction when I’ve been so used to seeing it rise and fall (like everyone else does, I’m sure!)

When I mentioned that I wanted to do a knit along, I hadn’t really thought it through – especially not as a fundraiser!  But the amazing folks at Mason Dixon Knitting (Hi Kay!! Hi Ann!) picked up on this and put it out there as a quick and easy fundraiser!

That was absolutely brilliant, and so many folks have responded by purchasing the Split Cable Wimple Pattern (currently $4.00 until I start my Chemo)  Thank you to EVERYONE, I can only say how humbled and grateful I am to each of you, and to the exceptionally kind folks who have also donated to my Paypal Fundraiser.  I feel crass even talking about it, but YOU are helping me pay my co-pays.  YOU are helping us put gas in the car for doctor visits.  THANK YOU.

I’ve Been Heard

Yesterday Gerry, Andy and I went to “Chemo Class” and learned about things to watch out for during my chemo (which starts on Monday, Aug 20 – our 25th Wedding Anniversary…) and get details on the average Chemo day, tips on dealing with the nausea, etc.

It was a good and helpful 40 minutes given by a pharmacy student and a nurse, very well done.  Thanks, HealthEast!

THEN my nudging and — yes, complaining — reaped the benefit of a meeting with two of the head honchos from the St. John’s Cancer Care Center AND my navigator (who is worth her weight in gold!)

We discussed the issues that had been bothering me, and to their credit they didn’t just pass along, “Oh, yes, we will DEFINITELY FIX THAT!” happy talk, but we had a REAL discussion about how the dynamics of the center are changing since the merger with Fairview, the drawbacks of staff shortages (and why it’s hard to just go off into a private room with a scheduler to comfortably set up my appointments.)

The discussion was good, honest, and I’m hopeful that if immediate results aren’t forthcoming, it won’t be for lack of notice or trying.  All I really ask is that they begin to SEE what could make the experience better for the patient, and seeing, begin to act.

So I WILL be getting my Chemo next week at St. John’s.  Then I have 2 weeks “off” during which time my doctor seems to think there’s a very good chance that I’ll need transfusions (the chemo I’ll be on is going to be pretty hard-core, Gerry found an article about it where it’s called, “R-CHOP” and it looks – daunting.

Gerry’s hematologist at Mayo, Dr. Sue, has become a personal friend of ours over the past 12 years.  We LOVE seeing her, we share a lot of sensibilities of East Coast Jew-adjacent folks and we laugh like nuts when we’re together.

Last November when I was absolutely knackered Sue picked up on it, and was a bit concerned when twice in a row I was permitted to give blood (my habit had been to give blood every 3rd month while Gerry was getting his own samples drawn) because  of low hemoglobin levels.  Instinctively, Sue knew something was up.

Sue has ALSO had her run in with Lymphoma.  The fact that our cancers intertwine between each other now seems bizarrely natural and familiar.

So Dr. Sue very much wants me to get a Mayo 2nd opinion, especially now that Stem Cell Transplant has been mentioned as a therapy to prevent return of the disease WHEN we are able to stop this nastiness in its tracks.

So during my two weeks off we’ll try to get me into Mayo for more testing.  We’re still looking into what this means in terms of insurance, and places where I might stay while in Rochester.  Financially we’re in a VERY different position than we were 12 years ago. At that point Gerry’s insurance, through his amazing union (IATSE Local #1) covered so much of our auxiliary costs (hotel room, food, etc.)

We’re NOT in that position this time, and 12 years of Gerry being disabled and me earning never quite as much as I’d hoped each year has put us on the back foot.  So we’re looking into Hope Lodge and other places/schemes whereby I could stay in Rochester for my one week on with Chemo, then back to St. Paul for my 2 weeks off.

And THAT is scary, too.  What if, while I’m home in St. Paul, I get complications.  This is all too big right now to take on in one swallow, I need to cut it into bites and digest it, which I will.

Gerry, who is the best human being I could ever be married to, has been thrown for a loop by this.  He is so helpful, so wonderful, but I also find that he’s oddly paralyzed by the idea that I have a disease that will be rocking his world and perhaps shattering it, too.

So I look to him for help that he is having a hard time giving.  And I have to realize this; Gerry is NOT Superman, even though he’d like to be.  Andy is wonderful, but learning the ropes.  The navigator at Health East is almost magical in her ability to understand and help, would I be able to find a social worker in Rochester who could fill this role?

All this is part of breaking down the problem to make it manageable.  Who knows, maybe Mayo will say there’s nothing they could do that HealthEast isn’t.  Maybe they won’t want to take me on.  Maybe my insurance makes this whole thing moot.

Stay tuned.  I hate having this cancer, I hate it like poison.

But I do love a challenge.