Thanks, FDR! Thanks, Obama!

I just received word that I WILL be approved for Social Security Disability, and the monthly check will be enough to pay my utilities and taxes, plus a bit extra to live on, and that is an amazing thing.

I have NO idea how long I’ll be disabled, but at this point I still can’t walk well.  I just about make it to the bathroom and back, which I do at least 20 times a day for the exercise, but stairs are insanely hard (but DOABLE!) and FORGET about getting outside to move around in all this snow.

So while I’m disabled, I know that now I will not be using up more savings.  Thank goodness.  And thank you to everyone who helped us out over the past 9 months, we’ve had no income coming in since last June, so your help has been SO appreciated!

Cancer is expensive.  Even with insurance, we’ve run through over $30K of savings so far.  And it’s not over yet (although I am in remission!)  It will be over when I can move well, walk up and down stairs, and drive again!  Those are my goals for 2019!  In the mean time, I will have scans every 6 months, and those are pricey, and doctor visits on a more frequent basis; also pricey.  Insurance covers most of it, but those copays really add up when there’s so little money coming in.

But now I am proud to share the news that I am a recipient of SSDI.  Huzzah.

Beginning in the 90’s there’s been a rather loud outcry from the right about, “Makers and Takers” – the thought being that corporate heads are “makers” for making jobs, and folks who receive any kind of benefit from the government are, “takers” because they’re sucking at the teat of big government.  The truth is, ANYONE who buys a box of cookies or a bike chain is just as much of a “maker” as any industrial giant.

I have always thought that the way a government, a country, treats those in the most difficult situations is how that country should be judged.  We fall FAR SHORT of every other industrialized nation as far as healthcare goes, but thank heaven for Social Security.

The right keeps trying to destroy it, and they HAVE weakened it, but it is so vital to our identity as a nation that cares for the ‘least among us’ (income wise, health wise) and now it’s vitally important to me, too!

If it hadn’t been for SS survivor benefits, I would never have been able to attend college.  Ironically, the same is true for Paul Ryan, who has been one of the loudest voices against this benefit.  In fact, the benefit for child survivors of a deceased parent has changed, it used to continue while the child was in college, now it just ends at 18, making college just a dream for so many kids who have lost a parent and aren’t genius enough to earn scholarships.

And, the truth is, for the benefits to our society (including a better education citizenry) the cost is so low – truly!  This is a complicated issue, and my blog is not a political one (well, not usually…) but there’s been NO cost of living raise for SS recipients in over 2 years.

I feel so relieved, so happy.  I can pay the monthly bills, and have a little bit left over for groceries.  That’s really all I need, and it makes me feel insanely happy.  I will fight like hell to get back to dyeing, designing and teaching again soon, but right now I can’t stand for 5 minutes, let alone teach a class or dye 4,000 grams of wool!

The truth is, if it weren’t for SSDI and the ACA (especially as administered by my beloved Minnesota), our family would be entirely broke by now.

My life, and my financial security, have been saved by these two government programs, and I am VERY grateful.  For years I paid into SS, happily, because I truly believe, like Oliver Wendell Holmes Jr., that “taxes are what we pay for a civilized society!”

Mrs. Whiner

WHINE ALERT

Damn, I hurt.  My back is sore, my legs are numb (which is oddly uncomfortable, you’d think that numb would be… numb?) and I’ve had nausea every morning these past 5 days.  If I didn’t know any better I’d swear I was pregnant.  Not really.

Thanks, hysterectomy and advanced age…

Andy’s leaving for a week, and we have folks to come and stay with me while she’s gone

(and feed the pets, and let Jasper out to pee, and feed me, and let ME out to pee…)

but I am going to miss that kid something awful!

I feel that the past week or so I have moved BACKWARDS in my walking ability, maybe the metheltrexate I took in such high doses in January is finally working itself out of my system?  This whole thing is SUCH a mystery to me, and information about recovering from high-dose, high-strength chemo is not easy to find.

I’m almost through every season of America’s Next Top Model (I’m taking a break at cycle 18 because it’s just so bad…)  This week in honor of my friend Kathleen staying with me for a few nights, I’ll be diving back into RuPaul’s Drag Race, which is more fun and has much nicer contestants that ANTM.

And that is pretty much my life right now…

Plus, I have more hair every day.

The BEST News (and a caveat…)

Yesterday I had a visit with my oncologist and, his exact words (as he shook my hand) were, “Congratulations on surviving cancer…”  The tumor in my spine is officially gone.  I am in remission, and that is amazing news!

From this point I have doctor visits ever 3 months, and a scan every 6 months.  We’ll keep an eye on the lymphoma to make sure it’s really gone (it has a way of sneaking back…) and keep our fingers crossed.

BUT

…I’m not well yet, and it may be 6 months to a year before I’m able to walk well, and function as the Annie Modesitt I want to be!

I’m so at odds with the thought that CANCER is gone, but I STILL feel so damned miserable.  Pain continues, I’m exhausted, I have no balance, I walk as much as I can, over and over, from my room to the bathroom and back, but the progress is SO SLOW that many times I feel in danger of losing hope.  My legs are numb from my toes to my hips (neuropathy) and that makes it hard to walk, too!

But, the tumor is gone! The cancer has LEFT THE BUILDING!  So champagne all around, everybody celebrate!

BUT

…don’t expect much from me in the next year or so. 

I’ll give what I can, but until I can get this damned chemo out of my body, I’m going to be a shadow of what I have been.  I hate that I can’t 100% celebrate the remission of my cancer AND the end of the pain and sickness that keep me in my bed all day and all night.  The tumor may be gone, but the fractures in my back and chemo remain.

My hair is coming back as a salt-and-pepper mix with what feels like a LOT of curl!

Seriously, except for my walks to the bathroom and forays downstairs, I’m generally in bed.  My sitting up time has increased to about an hour, then I just lose the ability to be upright and have to lay down for a few hours.  Exhaustion, it’s not fun.  None of this is.  But we’ve moved a comfy chair into my room and I sit in it as much as I can each day.  Sitting up is an exercise, it helps my balance and strength!

Thank heaven I have good friends and family to support me through this.  I feel like one of the luckiest people in the world, especially with my Andy to care for me.  And I’m growing some more hair, even if it’s hard to tell in the photograph!

Thank you all for your love! I feel it!

 

 

It’s SNOWING!

I love snow, which is one of the reason I love Minnesota so much!  Of course, as soon as we moved out here from New Jersey the weather went nuts and now they get as much snow as Minnesota does.  Oh, well…  Live and learn!

I am at what I consider the HARDEST part of recovery.  I’m just well enough to be a little bit active (walking around the house, staying awake for stretches of 4 hours at a time, getting my appetite back) but I’m NOT well enough to act on those impulses!  My long, long walk through a downtown corporate maze yesterday made me acutely aware of how big my dreams are, and how weak my legs are.  Damn you, weak, weak legs.

I see my doctor next week, so I’ll get a reality check from him on where exactly I should be.  He told me when I was in the hospital that I was progressing nicely, but I worry.  It just seems like I’m in a holding pattern, and I have to FORCE myself to look back on where I was a month ago to truly appreciate how special it is to be able to walk WITHOUT A CANE to the bathroom.  Yippee!

I’m learning to use my medical marijuana to best effect, so I get the optimum pain relief.  Two days ago I forgot to take my 6am pain pills and I cannot believe how terrible I felt by the time my next pain pill appointment came around.  THAT is a mistake that I won’t make again, lordy how I need those pain pills simply to be able to LAY in bed, forget about getting up and walking, going to the bathroom, etc…  I hate to be reliant on them, but I’m VERY glad that I have them.

Andy and I have started a new evening ritual. She just finished the last Golden Compass Trilogy book and I have the newest Philip Pullman book on audio file (la Belle Sauvage)  So we listened to a nice chunk of it last night in my room at bed time, it was like being read to by some uber-dad who pronounces EVERYTHING beautifully.  I fell asleep, but I’ve already read (listened to) the book, so I’m cool if I miss a bit.

Andy’s been working on her leaf art, which is getting more and more compelling.  When the light is better I’ll take some nice photographs of her pieces and post them, they’re abstracts made of leafs and leaf parts, the colors are very lovely.  I worry that Andy will become so bored caring for me that she’ll be sad; I’m NOT the most fascinating patient in the world.  I also worry that she may feel she’s falling behind her friends from college who are getting apartments and jobs.  She’s got neither, she just takes care of me, and I am very grateful for that.

I don’t think I can actually go out into the snow, I slip and fall SO easily, but maybe Andy will bring me in a bowl of it and I can play around with that?  I hope as it gets warmer my legs will grow stronger and I’ll be walking outside without a cane in the Springtime!

Friends + Andy

I don’t think it’s an exaggeration to say that without my friends + Andy, I would not be here right now.

From the immediate, jaw-dropping LOVE response when I was first diagnosed through the many small gifties and visits from local friends, to the actual financial donations that have kept our heads above water these past 9 months (thank you, thank you, thank you!) and the ‘cleaning crew’ and ‘cooking crew’ love from members of my knitting group (thank you so much, ladies!) i have no idea what state we would be in right now.

There have been many days when Andy is at their wit’s end.  Andy is essentially dealing with a rather large, middle aged BABY who needs feeding and cleaning and entertaining.  At the same time, Andy has taken over the financial, legal, emotional and other necessary paperwork/office visits surrounding long-time disability and recent widowhood, which would be a huge job for an older person, forget a 22 year old just out of college!

Andy is amazing, but this job is a huge one and there are times it’s been TOO BIG.  Now that my mental state is returning to pre-cancer levels and I can actually REMEMBER when I’ve signed a form, or made a visit to a bank, the nuts and bolts of Andy’s job will be getting easier and easier.

A mind is a terrible thing to lose, I’m glad to be getting my own back.

Caring for a family member with cancer, who is struggling with the residual effects of chemo therapy, is NEVER easy.  The fact that Andy does it with such grace is astounding, and the few times that they lose their temper or feel overwhelmed are more than validated by their hard work during all of the other times.

When Max was home for the holidays he stepped up, but it’s hard to just insert someone into a routine, so of course Andy ended up doing yeoman work all through the holidays.  It did give them a bit of respite, though, and we’re looking forward to that this Summer when Max is home for the entire season.

Because I’m doing so much better, and because Andy is in NEED of a respite, they’ve arranged to go visit some college friends for a week at the end of Feb, and will be bringing one friend home to help them with some projects they’ve started.

Who knew my kid had a skill for laying out a room, organizing a basement or creating a really good flow for a home office.  They’ve also showing some skill with the power tools, which gives me a sense of pride since I’ve always loved me a DeWalt Drill.

We’re lining up folks to come and check in on me / stay with me during Andy’s absence. I think we’re pretty much covered now, and that also warms my heart.  My business partner, Kathleen, has been amazing with her visits, and her ever-ready help for Andy.

  Kathleen will be staying with me for almost a week, during which time we will watch EVERY episode of RuPaul’s Drag Race and Outlander. 

Just try and stop us…

So although I am still light years from where I want to be, I do feel myself getting better every day, and that is almost ENTIRELY due to the hard work of Andy and our friends.  (Of course, the doctors and nurses had something to do with it, I’m speaking pretty much about at-home help…)

I still can’t walk easily, my legs are numb and I almost fall all the time.  Almost.  That’s a very important word.  I don’t get downstairs as often as I’d like due to balance and exhaustion issues, but I do what I can, and I walk around upstairs quite a bit each day.  The more I walk, the better my legs feel!

I cannot WAIT for warmer weather so I can walk outside!!
I don’t like to set time-goals because that can lead to disappointment,
but I’m thinking I may be AT LEAST six months away from any kind of bike joy.
I’ll live with that.  I kind of have to…

And today a few very dear friends are coming over to help us clean the house.  This has been a pretty regular thing, thank heavens, because aside from sweeping up a broken glass that the cats knocked onto the floor, there’s not really a lot that I can do to keep the house clean.

I wouldn’t say I’m a clean-freak, but I DO care whether my house is clean, even though I’m in bed more than I’m OUT of bed each day.  Andy does their best, but keeping the house clean is really the least of what they should be worrying about, so we’re VERY grateful to Ellen and Lisa, who are coming over today, with their mops and rubber gloves.

And me? I’ll be SITTING UP IN A CHAIR in my room.  Andy’s rearranged it so that there’s a rocking chair at the foot of my bed, and I’ve been taking advantage of it by sitting up for an hour or so each day.  Just a month ago I couldn’t sit up for more than 15 minutes – huzzah!!

If this sitting up ability keeps growing, maybe I’ll be able to go to a movie with Andy??  There are several local theaters that have recliners and stadium seating,
maybe that would work? 

I need to feel that my physical strength will stand up to 30 minutes of riding in a car each way and 2 hours of movie, but it would be so nice to see How To Train Your Dragon 3 since it’s a family movie series we both love.

“Once more unto the breach…”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bad Trip

FOUR bags of chemo, hanging on a pole.

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

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

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

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

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

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

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

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

Better living through chemistry!

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

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

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

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

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

You squirm, you could become a worm. 

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

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

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

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

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

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

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

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

Handwriting looking about the same…

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

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

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

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

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

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

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

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

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

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

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

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

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

Aaaaaaaaaaah!

Respite

What a lovely weekend!

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

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

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

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

Ellen Ponders The London Tube, 1983

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

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

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

Early Morning Chatter

Ellyn, Annie & a Yeomen Warder in London, 1983

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

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

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

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

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

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

Fan Mail From Some Flounder?

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

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

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

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

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

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

More Weight

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Everything is heavy these days.

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

Goals

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

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

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

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

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

And I love myself some FUN. 

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

I want to be here for my family, too!

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

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

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

Goal 2: Be Healthy
I want to feel better.

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

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

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

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

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

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

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

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

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

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

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

Cycling, for me, is pure euphoria.

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

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

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

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

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

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

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

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

Will I travel again?  Hell, yes.

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

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

Friend of the POD – er – POODLE!

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

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

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

MORE GOALS
So many more than I can list!

There are so many goals that I want to achieve.

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

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

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

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

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

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