“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.”

I’m HONGRY, Mama…

When my brother, Jimmy, and I were little we’d devil our mom by mewling, plaintively, “I’m HONGRY!” and she’d flap her dish towel at us and chase us out of the kitchen.

She new we were making fun of her, in a loving way, of her accent and her family.  After all, Jimmy and I were born in the big city of TOLEDO, and she was from Reedy, WV (which, at that point, barely existed any more…)

What Can I Eat?
Having cancer, for me, means that I’m FRIGGIN’ STARVING almost all the time, but very few things sound good, and fewer things taste edible.  Once I light on something that I can actually EAT, I spend days hoping that my tastes won’t change again.  What I love on Monday can sometimes taste like doggy-do on Tuesday, and there’s no rhyme or reason to it.  It’s not about spice, or temperature of food, or sugar content, or really anything.

One constant has been tea.  I love a good cup of tea, and for better or for worse THAT is a delicious thing to cling to.  I’m also good with bananas and peanut butter is generally a positive.  There were a few days when the smell of it made me nauseas, but since then I’ve returned to the land of Smucker’s peanut butter, and in small amounts it’s good food.

One would think that friend foods are a no-no, but for whatever reason the fish sandwich from Culvers is exactly what I crave most days.  Fish & Chips in general (hold the chips) are tops on my list every day.  At least, this week.

Standing up long enough to actually MAKE that cup of tea, or butter that toast, or peel that banana is another story.  My back hurts SO badly, I think the pain is from the original tumor (in my T9 and T10 vertebrae) and also from the cancer metastasizing into other parts of my spine and hips.  Finding a comfortable position to sleep, or sit, or stand — it’s hard.  I am SO fortunate to have a nice recliner that seems to suit me very well.

I bought it (ostensibly) for Gerry for Father’s Day several years ago, but it never seemed to suit him.  Funny how many things I’ve bought for Gerry have become mine by default!

Picking My Battles
I had to give up a project today because I realized that with the deadline looming, and with two more chemo sessions lined up, there was NO WAY that I would be able to complete this project.  The weight of expectations was so heavy, and now that I’ve given up I feel a bit of guilt, but even more relief.  My brain needs to be sending as many positive thoughts to my body for healing, not fretting over getting a sweater knit — something that dozens of other folks could do just as well, if not better than I!

Back To Mom
Days like today, though, I swear I could go for some of my mom’s classic Soup Beans & Corn Bread, or her Fried Chicken.  Even some of her baked beans.

We ate like poor hillbillies, but damn that was some tasty food!

I miss my mom for so many reasons, but friend chicken is one of the big ones.

Hello Again, My Friends!

I’m up.  It’s 5am and by default I have Morning Joe on (I NEVER watched that show until I had cancer, now it’s something I automatically turn on when I’m up with my early morning cancer wakings.)

I feel like crap, but I honestly feel like much BETTER crap than I did a few days ago.

This has been true every day that I’ve queried myself for the past two weeks.

I feel like doggy-doo, but it’s better looking doggy-doo than yesterday.

HUGE on my mind right now is the start of my next (third) round of chemo, set to start on Monday 10/15.  I will be hospitalized for 5 days for this adventure.

I’m smack in the middle of the four full rounds of chemo that are required to treat this fast moving cancer, two are finished, two are yet to go.

My Chemo Pump Is My Constant Companion

Of the two that are finished, one was an ‘easy’ one (I was able to do the chemo at home with a pump attached to my port.)

The other chemo round was a very hard one (in the hospital for the full time, lots of sickness, lots of pain and exhaustion, released when the chemo was finally finished.) 

The recovery from chemo rounds 1 & 2 were exactly as you’d imagine; Round 1 went pretty smoothly, Round 2 was hell.  Rounds 3 & 4 will be MUCH more like Round 2, no more Mr.-Nice-Pump for me, it’s all going to be chemo in a hospital bed, clinging to the railing, puking and trying not to make too much of a mess as I get up to use the toilet.  Actually, I guess I AM glad that it’s not happening in my home.

I’m terrified that Round 3 will be even MORE hellish, and I fear that I’m going to cry like a little girl.

Which I KNOW is “okay” – but it’s still not fun.

I keep racking my brain for ANY food that is remotely appealing, but everything I try (even stuff that “sounds good”) ends up being a vehicle for nausea.  Even my old stand by, ice cream.  Oy.

Yep, I def only can stomach the pricier ‘real ingredients’ stuff!

So, I’m still here.  A little shaky, a little pale, and apparently I’m right in the “eye” of the chemo, but I’ll get through it.  Thank you for being here with me.

Physically I feel rather lonely.  I can’t really see many folks, I’m SO susceptible to any kind of infection, so the fewer people I see, the better my chances for getting through this without a serious complication.  I miss human interaction, though.  Gerry loves me, Andy is amazing, and every week or so I see Kathleen.  But aside from that I’m kind of on my own, and I never realized how much I get from just BEING with other folks.

Thank god for the kitties and Jasper, they love me so much, and I love them.

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!

What Doesn’t Kill You…

…makes you STRONGER?

Day 1 of CODEX=M/IVAC chemo, and my body is handling it pretty well.

Todays Chemo Specials!

Of course, the chemo drugs haven’t really been IN my body long enough to cause the brutal side effects they keep telling me I’ll be seeing.  AND the nurses are doing an amazing job of both explaining the prophylactic measures they’re taking to prevent bladder problems, nausea, headaches, dizziness, unexpected bleeding—if it is an undesirable side effect, the chances are it’s part of my chemo journey!

I can be relaxed about this so far because it’s only day one.  We’ll see how happy I am on day 7, when the side effects begin to come into their own.  For now, I’ll enjoy what I can enjoy, not that getting liters and liters of fluids pumped into me all day is terribly ENJOYABLE, but it’s not horrible.

Amusingly, one of the drugs can have neurological side effects that show up when the patient tries to write a sentence, so the nurses had me pick a sentence that I can write over and over through the day to make sure that my brain is working as we all want it to work.

There’s ALWAYS money in the Banana Stand!!

The sentence I chose?  “There’s always money in the banana stand!”  Neither of my nurses had heard of it.  There’s nothing quite like explaining an obscure cable TV joke, entirely out of context.  I probably should have chosen, “NO TOUCHING!” as my sentence.

Today Gerry was down at Mayo meeting with his new cardiologist.  I’m so excited about this, because we’ve put his heart health on the back burner since my own diagnosis, and it’s high time that he got a little attention paid to his health issues.  One of my dear knitter friends volunteered her husband to drive Gerry down, and he seemed happy to do it, so we are VERY excited and VERY grateful to Wilson for ‘volunteering’ to be Gerry’s driver, that was a gift!

Andy was taking care of getting me settled in my 5-day hospital room, so they weren’t available for the drive down.  I ended up needing some stuff from home that I forgot, so it was very good that Andy was nearby.

It feels a little surreal to be back on the same ward that I was in when I was diagnosed, now I have no hair, but still the nurses seem to remember me.  It’s a really lovely group of folks here, I feel like I’m visiting family a little bit!

We Start TOMORROW!

Today was lab day, the day we go to the Health East Cancer Center and get a line put into my port so they can draw blood for various blood tests.  Then an appointment with the nurse practitioner who works with my med oncologist, where we got the surprising (and VERY welcome) news that tomorrow morning I will begin chemo.

The regime that I’ll be on is, basically, the same one that Mayo wanted to put me on.  I’ll be in the hospital for 5 days, during which I’ll be receiving pretty strong, high-dose chemo which they will be monitoring (hence my 5 days in the hospital.)  I plan on bringing my own fan (it gets REALLY HOT in the hospital, I’ll need some fresh air.)

I’m eager to get started, and I’m also terrified, but definitely more eager than terrified.

In so many ways, this is the best of all worlds.

No, it’s not Mayo.  But I WILL be given the strong CODOX=M/IVAC chemo that Dr. T. was proposing, which should work better for my specific cancer and the way that it’s manifesting itself.  I’ll be in the hospital just 6 miles from my house, and when I’m out of the hospital I’ll be HOME (which is lovely!)

I don’t know if we’d even be talking about this stronger chemo if I hadn’t gone to Mayo for a second opinion, so even with the stress and heartache last week, it seems that going down to Rochester was, ultimately, a very positive move.

The stress of the travel and the stress of the insurance snafu last week have left me exhausted, though.  Absolutely shattered, just SO tired that I feel as though I’m sleepwalking.  My body and my soul need rest, so perhaps these five days in the hospital will be a bit of a respite for me?

I had signed up for a class at the Textile Center that’s due to start tomorrow; Wearable Art.  It’s a class for women over 55, but I know they were working to fill up the class, so I’m not certain how strict they’re being with the age limit.  If it’s possible, I’m going to see if Andy might be able to take the class in lieu of me.  Every Tuesday for the foreseeable future will have me undergoing some kind of medical appointment; chemo or testing or something along those lines.

And, of course, the most important thing is to get the chemo GOING, and to do well with my recover weeks between the chemo.  Time to stock up on salmon and spinach!

 

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.

NOW It’s Real

I have kept wondering, over the past 7 weeks or so, WHEN will this cancer thing seem real?  I mean, not that I’m NOT sick or anything, but sometimes when something is so life changing, it just doesn’t seem to sink in, doesn’t seem 100% real.

My cane matches my pedicure!

I figured I’d keep wandering around in a semi-fog, achieving moments of clarity as pieces of the lymphoma puzzle came together, until at last there’d be some kind of crystal clear reckoning when things fitted together and made perfect sense.

THAT hasn’t happened.  Some things are just as foggy as they have been, some things seem clearer, but suddenly the whole mess feels REAL.

The pain so far’s been real; the pain my body shoots at me through the tumors (large and small) and the other internal indignities that present themselves as recurring pricks of pain or deep seated aches.

I’m learning to deal with the pain, to figure out how to avoid it, or to meet it head on, or perhaps to sidle along beside it, dealing with it quietly, so it doesn’t even know I’m there.  Shhhhhh.

There’s also pain that comes from outside my body, the needle pokes, the sticks, the punctures. AND THEN there are the shakes, hunger pains & mental anguish which are hallmarks of  Dex.

Every human body deals with Dexamethasone (a powerful steroid) in it’s own way, but it’s been one of my hardest battles; Dex entirely changes my personality, turning me into a raging, raving, hungry, incomprehensible ball of pure emotion.  At the start of this trip, I was on a double dose of Dex and I thought I’d end up in federal prison instead of a hospital.

Heaven help my family, they’ve been amazing
in dealing with me and the Dex, I wish I were as gracious.

The fear has certainly been real.  Like anyone facing a serious cancer (is there a cancer that is NOT serious? What a silly phrase that was…) I have had my middle-of-the-night sitting-up-straight-in-bed PURE FEAR sessions.

Death is a fear every human has to face, no one gets out of this life alive.
But when you feel your time is shorter than you had anticipated, it brings up a great deal of unfinished business. There can be lots of baggage, and cancer has a way of leaving those bags in the foyer of your brain where you can trip over them at 3am.

But what makes the cancer seem suddenly VERY REAL is that I have a date that my chemo is supposed to begin at the Mayo, and it’s this coming Tuesday.  We got the call today from Dr. T, I’ll drive down with Andy on Tues morning (not too early, thank heaven!) and start the pre-chemo labs.

Then I’ll be admitted to Methodist hospital where I’ll receive the cocktail of drugs that will be VERY rough.  The way Dr. T described it, the chemo will really kick my butt, and I’ll be in such bad shape that they won’t be able to release me from the hospital until they’re certain that I WILL RECOVER from the chemo infusion.

Thats ME! Side view [long and thin] and front view [gingerbread cookie]

She drew me a picture.  Two in fact.  And I did NOT promise not to show them here.

I actually found them charming and helpful, and I don’t know that any doctor’s ever drawn me a picture before. 

The first image is me, a side view, showing my spine and explaining why it’s necessary for me to continue to receive chemo directly into my spine.  Hint: It’s where the CANCER IS.

The second image is also me, looking rather like a gingerbread woman, showing how the Methotrexate will kill the cancer, but will also try to kill ANYTHING ELSE in it’s path.

Because my tumors seem to REALLY like my spine and brain, Big-M (which is what I’m calling Methotrexate) is the best medicine to treat them. But it’s a dangerous med, and needs to be controlled.

This image demonstrates how Dr. T. will fight off the bad side effects of Big-M and until that is under control, I’ll be monitored at Methodist.

An extra bonus is that during my time at Methodist I’ll probably be overseen, at least a little bit, by Gerry’s hematologist, Dr. H, who has become a good family friend.  I almost feel as though I’ll be with family, and that feels amazing.

Andy has been stellar through this adventure. Thank you, Andy!

So I’m scared.  I remember how hard this was for Gerry when he had the high dose chemo, and I’m wondering if it will be as bad for me as it was for him.

But I’m also cool with being scared, it’s part of this whole trip, and I’m feeling strong enough to get through this.  Hopefully in one piece.

The chemo I had two weeks ago here at St. John’s in Maplewood was called  R-EPOCH (not R-CHOP, as I previously mistakenly said) 

It was a 5-day infusion that I carried around with me in a bag type mechanism that pumped the chemo into my chest for four full days, Tues through Friday.  I didn’t really get very ill, the anti nausea meds were great, and it wasn’t until the following week that I suffered the exhaustion and mouth sores that came with R-EPOCH.

This chemo that I’ll be getting at Mayo is called CODOX=M/IVAC, and although it has similarities to R-EPOCH, it’s an entirely different beast.  I wish I knew what that alphabet soup of a name actually meant, but what I DO know is the M=”Big M”=Methotrexate and the IVAC means I get more needles inserted into my spine.  Huzzah.

3am; Nitro, the softest kitty in the world, and me.

But, it’s an important step in getting this cancer OUT of my spine, so I’ll not complain!

Okay, maybe I will complain just a bit.  Andy can give you all the gory details of my complaining when this adventure is finished.

Tumors?
Folks have been asking, “If you have Lymphoma, why do you have all these tumors in your spine and back and neck? Isn’t Lymphoma a blood cancer?”

Yes, that’s true, I have a blood cancer.  I’ve been told by my docs that lymphoma is a cancer that can produce some amazing tumors, and I’m one of the lucky folks who seems to have a very fertile ground within my nervous system to grow these tumors.  Why that is, I don’t know.  But getting rid of the tumors is a large part of my treatment.

I’m not an oncologist, and I’m not reading as much about this cancer as I probably should.  I know many folks facing an illness like this prepare themselves with education, that was Gerry’s way of dealing with Multiple Myeloma.  But I am lazier than that, and I know that my comprehension of the disease will probably have no material impact on what my doctors choose to do.  I’d rather spend that time reading a novel, knitting or watching some cooking show. Or baking.

Any chance I have to show off my cookie, I will SHOW OFF MY COOKIE!

Location Details
So this weekend I’ll get myself square away, packed up, ready to head down to Mayo. Andy’s booked into Days Inn (next to Methodist) and then later in the week she’ll move to the Staybridge Suites (a better choice for us when I’m released from Methodist, but need to stay down in Rochester.) 

I honestly believe that if there had not been the AMAZING response to the GoFundMe to raise money for our accommodation in Rochester, this chemo would NOT be happening. 

Thank you to everyone who helped out along the way, I am VERY grateful to each of you!  You have made a huge difference in my recovery.

And now I will go nap. My exhaustion has taken over my days and my nights, I slip into sleep so easily I barely even know whether I’m awake at any given time.  I’m certain it’s because I’ve been keeping a pretty rough schedule the past few days. Who knows?

Maybe my days at Methodist on CODOX=M/IVAC will be just the rest cure I need..?

Or maybe I’ll just bake something at 3am.

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.