SPRUNG Today!

After 5 days in the hospital, I’ll be getting sprung today!

A visit somewhere away from home is always hard for me, even a vacation.  I’m a Virgo, I love my home SO MUCH that when I’m forced to be away I feel oddly dislocated, not connected to my strength.  My strength IS my home, my family, my pets and all of the familiar things that make my life so rich.

So today, depending on whether the doctor comes to see me and give me the all clear, I’ll be heading home and I’m SO DAMNED GLAD!

It’s not just because I’ve been here having chemo, although that’s a huge reason.  Being someplace where fate compels you to experience pain and nausea isn’t fun, knowing I’ll have to return here at least twice more for two more sessions of my CODOX chemo is daunting.  At least it’ll be happening in the autumn, my favorite time of the year, and I think that may make things a bit easier.

The fact that this visit hasn’t been pure hell is due entirely to the chemo nurses here at St. Johns.  They are such a wonderful bunch of folks, so caring and so careful!  I hear how they interact with other patients who are in various states of comprehension and confusion, and of course I see how they deal with me, which is lovingly, as if I’m a family member!

So this is my shout out to the nurses I’ve had the joy of dealing with this week, especially Abby and Liz, Jenn and Dale, who all had dealt with me when I was here in July with my original diagnosis and recognized me, even in my swollen, hairless state!

It’s actually amazing to me how many folks remember me, the food service folks, the cleaners, the nurse’s aids (Hi, Josh!) and the auxiliary folks who make this place tick.

When you think about it, I am so fortunate to have such a first class facility as St. John’s just 6 miles from my home, and THIS is the part of the cancer journey where I was happier to be back up in Maplewood than in Rochester. Mayo is amazing, but the ability to pick up the phone and see Gerry or Andy in 15 minutes if I REALLY need to is pretty amazing.

Yarn can’t assuage Jasper’s longing for his people.

I only wish I could see Jasper, I think that would be good for both of us.

Jasper is struggling with something right now, he’s been poorly, and he’s due for his rabies booster so we need to get him to the vets.  His ears have been giving him problems for a while, he tends to get build-up in his left ear, for which we use medicated pads every day, and for the most part that tends to keep his distress under control.

But now he’s just —off — and that is worrying to a pet owner, especially one who is not at home.  And that is especially worrying when that pet owner tends to be the main person in that pet’s life, and I am that.

Jasper is beloved by everyone now, but for the first few years we had him he was a difficult doggie.  He was a rescue who was terrified of tall men, and broom, and had obviously been mistreated in some way.  When a tall man would appear at our home for any reason, Jasper would stop, paralyzed with fear, and just pee.  We became well versed in doggie diapers, he wore them off and on for almost 2 years, but S L O W L Y  began to trust us more and more.

The Three Kids, “The Pack”

As Max grew taller and more responsible we put him in charge of Jasper’s meals and walks, which made Jasper LOVE Max with a focus no one else in the family got from him!  So Max being away from college and me being missing has got to be difficult for a dog who NEVER 100% settles down until all of his pack is at home!

Well, boy, today one of your pack will be home to hug and love you, and get you to the vet for a check up and your boosters!

Far Away Worry

Bike Ride From Home to Hospital

I’m 6 miles from Gerry right now, and I feel 1,000 miles away.  If I could cycle, I’d be home in 31 minutes via the Bruce Vento trail.

Oh, that I could ride my bike again, today.

He visited two days ago, but when he got to my room he was overwhelmed with exhaustion from the walk from the car.

I’m so concerned about his heart condition, he just seems to be dragging, low on energy and hope, and also missing me being at home.  He’s not well, Jasper’s not well (missing me, or something more?) and Andy is left home alone as the care-giver in charge.

…and here I sit, bald and pumped up on chemo drugs, not able to keep down food (except for ice pops and the errant ice cream, which generally ends up being a mistake) and not able to BE THERE for Gerry.  Who needs me mentally almost more than he needs me physically.

My Current View

Why is it so hard for some folks – for men? – to admit that they need help?  Our yard needs mowing, I know that Gerry gets wiped out SO easily.  Last week I utilized Next Door to find someone to mow it, but as soon as I did Gerry insisted that no, HE could CERTAINLY mow the yard.  And so he started mowing.

And he got totally wiped. WIPED.

So Andy picked up the slack.  And I jumped in and did the front yard (which, in retrospect, may NOT have been the best idea I ever had…) and together we got the yard done.

Just like a frontier family.  With a heart condition and two forms of cancer.

The View I Want To See

I hate to think what he’s attempting to do when I’m NOT at home.  Re-shingle the roof?  Find a barn to raise?

I get sprung from here on Sunday. Today is my last chemo of this session, then depending on my labs I’ll be home for two or perhaps three weeks, getting my lab numbers back up (platelets, etc.) and perhaps a transfusion.

I am SO looking forward to being home, which I miss so much.

Which is probably just another way of saying how much I miss Gerry.

Gerry, for pity’s sake, PLEASE take care of yourself when I’m away!

Home Sweet Downsize! Just LOOK at that lawn!

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.

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!

Hold The Mayo*

I will NOT be getting treatment through the Mayo clinic.

I THOUGHT I’d been cleared by my health insurance for treatment down here, I thought we had done all the work involved in getting approved for the CODOX=M/IVAC chemo treatment that I need to treat my Double Hit Lymphoma, but apparently we hadn’t.

Where the mix-up occurred is still unclear, Gerry (my insurance wrangler during my illness) was certain that we had pre authorization, but apparently we didn’t.  At any rate, it’s a hell of a way to run a health care system, and it stinks.  I could go on at length about how there shouldn’t even BE insurance companies, but my feelings on this are well known, and I’ve never envied my Canadian friends more than I do right at this moment.

Cancer Growing
The Mayo doctor showed me on Tuesday that the cancer is in my bone marrow, which is a new development. I knew that it was in my nervous system (another shock from last week), which is why the CODOX=M/IVAC cocktail was supposed to be so perfect for my cancer.

Since the pre-auth didn’t come through, I’ll be getting the R-EPOCH chemo that was already started up at Health East, but which may not be as strong as required.

Stem Cell Transplant Ahead?
And that might mean a stem cell transplant down the road after the R-EPOCH chemo for the Lymphoma is finished.  According to both oncologists I’ve spoken to, a stem cell transplant is NOT uncommon for this type of lymphoma, but it doesn’t seem to be as necessary after the CODOX=M/IVAC as it usually is after the R-EPOCH.

I’m stunned. I feel like an idiot

How did I not KNOW that I wasn’t covered — I thought all of that was cleared up when the Mayo billing system listed all of the pre-testing was totally covered by our insurance on the billing page of the online Mayo patient portal.

Refunds
Even more terrible, I don’t know what to do about the GoFundMe that I did to raise money to cover our hotel down here in Rochester.  If I don’t get treatment here, I will feel as though that was money that was given—and received—in error.  I will need to give it back.

I’ve contacted everyone who donated and I have offered to return their donation.  I’m happy to do so.

The truth is, we have a TON of copays due each week (some weeks the copays run upwards of $1,000, some weeks they’re as low as $150, but every week brings more and more copays…)

I could use the GoFundMe money for the copays, but that is NOT the stated reason for the fundraiser, and I want NO ONE to feel that they have given under false pretenses.  I think I can return the money via paypal, I’m not certain if I can actually refund the money via GoFundMe, but if I can that would be easier.

Moving Forward
So tomorrow it’s back to Health East for a spinal tap.  I’ll be receiving chemo directly into my spine each week to try to prevent the growth of the cancer in my nervous system.

I feel so overwhelmed, so exhausted, so disappointed.  This two weeks of leading up to a Mayo treatment, then the day of uncertainty, THEN the disappointment of this morning.  It’s really almost more than I can bear right now.  I just need a bit of time to reorganize my thoughts, to get my self calm again, and to get back into cancer recover mode.

And I will get there.

I WOOL SURVIVE!!

*Yes, I had to make the cheesy joke, blame the cancer.

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.

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.