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.

• Home Again [A Continuing Series of Bullet Points]

I’m too tired to blog, to weak to think straight, but I’m home.

  • I’m exhausted, covered in adhesive from various body monitors, IV’s & ports.
  • Every breath I take, even when I’m just sitting, feels ragged and shaky.
  • I’m weak as a kitten, but nowhere near as adorable.
  • I’m home, I’m up at 5, sitting in my chair.  That is enough.
  • I’m drinking tea, watching an excellent BBC drama, with a glass of water at my side. That is MORE than ENOUGH.

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!