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.

Calm Before Thursday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank heaven for Andy.

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

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

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

I need this.

The Complexities of Gratitude

Happy Pumpkin Head

Thank you.

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

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

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

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

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

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

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

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

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

…and I had NO idea how to respond.

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

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

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

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

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

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

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

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

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

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

The problem comes with PAYING for that room.

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

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

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

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

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

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

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

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

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

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

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

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

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

Almost FUNDED!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Which leads me to pure gratitude.  THANK YOU.

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

Because it was my birthday.

My 57th Birthday? Present!

What’s that meme that’s been around since Hector was a pup?

“Today is a Gift, 
That’s why it’s called
The Present!”

So I feel especially gifted today because it looks as though my cancer will be treated at The Mayo Clinic!  And I will be PRESENT!

The Last Few Days
I sort of disappeared for a few days while I was at Mayo, and I’ve had many folks write to ask if I’m okay, or if maybe something’s gone terribly wrong and I’m hiding it (I’m not!)  So I thought it would be good to just write up what’s transpired.

It’s been busy in the cancer-patient sense in that we drove down to Mayo for an appointment, ended up presenting with the highest fever I’ve had in months and incredibly high pain levels, got admitted to a hospital and then just — waited.

I think the 90 minute car ride was too much for me, it REALLY wiped me out.
I feel a bit feeble as I write this, but that’s my reality these days…

We were a bit late for our appointment on Thursday, so we rushed up to Dr. T’s office and we were seen very quickly.  I already had a Mayo Clinic Number (the magic number without which NOTHING can happen…)

Eleven years ago I had a minor asthma/allergy issue so I saw a doc at Mayo & was assigned a clinic number. Gerry’s insurance at the time was through his union (IATSE) and, because it was a mostly male, rather traditional union, they wouldn’t acknowledge that I had a different last name than Gerry. So I became “Annette Landy”

Waiting for Dr. T, we had to go through the assessment with a nurse, and during that time my fever began rising, my pain began going through the roof, and I was in pretty bad shape with Dr. T walked in.

We chatted at length, I’m ALWAYS surprised at how much time Mayo docs are allowed to give patients for simply talking through a case,  That is golden, and so helpful!

Dr T really wanted to admit me based on my fever, my heart rate (which was VERY high, much higher than normal) and my pain levels, and Andy and Gerry were both pushing for that, too.  They could see how badly I was doing, I couldn’t.  Pain is my “normal”, a bit more pain just felt a bit more — normal?

I agreed and was admitted to St. Mary’s Hospital (Methodist Hospital was full up, it was a busy week at the Mayo system of hospitals in Rochester!)  I had nothing with me, no computer, no underwear (except what I wore, no toothbrush; for a Virgo, these unplanned admissions are hell.)

I didn’t see Dr. T again this trip, my care was in the hands of a Treatment Team, and I dealt mostly with a very sweet young doctor named Glen Stewart.  I don’t think I’ve ever met anyone with a more Scots name.  We had a lovely chat, and I feel very confident in the group that will be dealing with my cancer.

So THAT’S why the radio silence; no radio. 

And I can’t say it wasn’t a bit of a relief to have a reason NOT to blog every day at 2am.  I’m not holding my self to a schedule in this blog, but I also know that writing regularly becomes a bit of a pact with my readers.  If you’re kind enough to want to read what I’ve written, then I should be thoughtful enough to just check in and let you know all is well!

Sweet T
We met with Dr. T* from the Mayo’s Hematology Department, who had been referred to us by Dr. H, Gerry’s OWN Hematologist for the past 12 years.  Because Multiple Myeloma (Gerry’s disease) like Lymphoma (my disease) are BLOOD cancers, they’re both treated within the Hematology Dept.

Dr T’s demeanor and presence were so comforting, so immediately soothing and so full of — LOVE — that it sort of took Gerry and my breath away.  Although she feels that the protocol I’m on is good, she feels that a stronger, more intensive chemo MAY be of use to me, and it’s a cocktail I can only get at Mayo.  So it looks like I’ll be getting my chemo at Mayo.

That last sentence is so full of hope
& fear & planning & trepidation & hope.
Always HOPE

The actual details have yet to be worked up, but at my next Mayo appointment is on Sept 6 to return to the Mayo for more testing.  I’ll remain in consultation with Dr. N up here at St. Johns Cancer Center, because he’s really great!

One of my worries was that there might be bad feelings because I want to move my treatment.  But it’s a small worry, and the docs on my Mayo ‘Treatment Team’ told me that often the initial doctor on a cancer case is happy for the extra help and guidance from Mayo.

It really was just luck of the draw that I happened to go to St. Johh’s ER where the diagnosis happened, begin treated by them is not carved in stone.  Having said that, I really like Dr. N, my medical oncologist at St. John’s, so I hope he is cool with my decision!  I think I’m due to see him this week, we can chat about it.

B-E   A-G-G-R-E-S-S-I-V-E
In my last post I wrote that I was receiving R-Chop, but I was mistaken. I was receiving something similar, but slightly stronger (I’ll write more about it when I have the actual NAME of the protocol!)  However, the NEW course of chemo Dr. T at Mayo wants to put me on is even MORE aggressive than either R-Chop or it’s nameless superseding chemo.

Because my body handled the first round of chemo so well, I think it heartens Dr. T that I may do well on the more aggressive chemo.  Plus, my CANCER seems to be a fast acting, sneaky, type of antagonist, and requires a more aggressive treatment.

The fact that I didn’t require a transfusion after my chemo, and my lab work looks very good right now, makes the decision to go aggressive that much easier.

For the moment, I’m just basking in the idea that I am SO DAMN FORTUNATE to have folks like Dr. H and Dr. T (and Dr. N, and so many other medical professionals) ON MY SIDE!

Birthday Girl
Of course, this whole Mayo thing is coming to a head during my birthday weekend (I’ll be 57 on Monday – HUZZAH!)

Fittingly, it’s ALSO happening during Gerry’s “Birthday” weekend.  

WHAT? You thought Gerry was an Aquarian?  Yes, yes he is.  But 11 years ago, on Sept 1 2007, Gerry received his stem cell transplant.  That became his new “birthday” and our family acquired a new Virgo!

I can’t say that we have a cake and ice cream every year to celebrate, but we DO acknowledge it, and appreciate it, and feel so fortunate that it’s worked so well.

So far, so good.

And, of course, that gives ME more hope.

Right there, lying in bed next to me, snoring, is my fountain of hope.

Gerry and I visited at Phrenologist at the Farm Museum in Cooperstown, NY on our Honeymoon. G was told he didn’t like small animals or children (wrong!)

Hair Today?
Also, right on schedule, my hair is making me crazy.  It’s falling out, sometimes in handfuls, but generally just one strand at a time, and usually right in whater I’m eating at the time.  Not pleasant, not fun.

So I’m going to have Andy go ahead and shave me tomorrow.  To look at my hair, it still looks thick and healthy and lovely, but when you part it you can see areas that are pretty damned thin.

It just seems easier to start shaving my head, and continue if I need to because of stubble.  Perhaps it will continue falling out so quickly that no touch-ups are required, we’ll see…

*With a 15-letter, six-syllable last name, she insists that folks just call her “Dr. T” – she is absolutely lovely!  I swear I WILL learn to pronounce her name!

Cancer Gives Me Hope

Lymphoma is a blood cancer.  So much of my recovery is wrapped up in blood, and blood products, that I realized early on I can’t allow myself to be too squeamish about this whole process if I want to write about it with anything approaching honesty.

As I’ve mentioned before, blood cancer is not a stranger to our home.  Gerry’s been dealing with Multiple Myeloma (a bone marrow cancer, a sister cancer to lymphoma) so in a weird way this experience is NOT as foreign to us both as it might have been.  Once again, Gerry goes ahead and quietly forges a path for us both to walk.

The point of my chemotherapy  (R-Chop is the term used to describe the cocktail I’m being given) is to throw some VERY powerful drugs at my cancer until it yells “Uncle!”

Hopefully the cancer will give up before my body does!

Here’s a brief explanation from The American Cancer Society’s webpage on R-Chop and a cancer similar to my own diagnosis.  It gives me a vague idea of what I might expect going forward:

Diffuse large B-cell lymphoma

Diffuse large B-cell lymphoma (DLBCL) tends to grow quickly. Most often, the treatment is chemotherapy (chemo), usually with a regimen of 4 drugs known as CHOP (cyclophosphamide, doxorubicin, vincristine, and prednisone), plus the monoclonal antibody rituximab (Rituxan). This regimen, known as R-CHOP, is most often given in cycles 3 weeks apart. Because this regimen contains the drug doxorubicin, which can damage the heart, it may not be suitable for patients with heart problems, so other chemo regimens may be used instead.

Stage I or II

For DLBCL that is only in 1 or 2 lymph node groups on the same side of the diaphragm (the thin muscle that separates the chest from the abdomen), R-CHOP is often given for 3 to 6 cycles, which might be followed by radiation therapy to the affected lymph node areas.

Stage III or IV

Most doctors will give 6 cycles of R-CHOP as first-line treatment. After several cycles, doctors may get imaging tests such as a PET/CT scan to see how well treatment is working. People who have a higher risk of the lymphoma coming back later in the tissues around the brain and spinal cord may be treated with chemo injected into the spinal fluid (called intrathecal chemotherapy). Another option is to give high doses of methotrexate intravenously. (This drug can pass into the spinal fluid.)

For younger patients with a higher risk of the lymphoma coming back based on the International Prognostic Index (IPI) score, high-dose chemo followed by a stem cell transplant might be an option. But it’s not yet clear if transplants are better as the initial treatment. Most doctors feel that if a transplant is done as part of the first treatment, it should be done in a clinical trial.

If the lymphoma doesn’t go away completely with treatment or if it recurs (comes back) after treatment, doctors will usually suggest another chemo regimen.

Several different regimens can be used, and they may or may not include rituximab. If the lymphoma shrinks with this treatment, it might be followed by a stem cell transplant if possible, as it offers the best chance of curing the lymphoma. Stem cell transplants are not effective unless the lymphoma responds to chemo. Unfortunately, not everyone is healthy enough for a stem cell transplant.

DLBCL can be cured in about half of all patients, but the stage of the disease and the IPI score can have a large effect on this. Patients with lower stages have better survival rates, as do patients with lower IPI scores.

The Mighty Hemo
One of the best indicators of the success of my therapy can be found in my labs (the tests that they put my blood through to see how well I’m holding up.)  Three of the main tests that my medical team looks at are Platelet Counts, White & Red Blood Cell Counts and Hemoglobin.

Back in October/November, when I was beginning to feel SO exhausted that I started to lose hope that I’d be able to continue working on ModeKnit Yarn much longer*, I discovered that my hemoglobin was hovering around 11.  While that’s not bad, it’s not great for an otherwise healthy woman, and it WAS an indication that something might be up.

But at this point in my chemotherapy 11.2 is actually quite good for my hemoglobin, and I’ve been able to keep that level up.  I think it’s dumb luck, I really don’t think I’m doing anything so much better than anyone else, but I HAVE been trying to eat a lot of good protein (salmon, yogurt, eggs, nuts) and iron rich foods (spinach, raisins) and that might be helping.

My platelet count is 228, not stellar, but not bad at all for someone who has just undergone a week of chemo. White Blood Cell and Red Blood Cell counts are 3.4 ad 3.94, respectively, which is also not bad.

This will change, I’m certain.  As my recovery progresses I’m sure I’ll have weeks when the numbers aren’t as good as this, and I’ll probably need a transfusion at that time. But the BIG NEWS THIS WEEK is that I do NOT require a transfusion.

Well, not today.  There’s always a chance I’ll need one on Friday.

SUCCESS!
The Nurse/Practitioner was very happy with my numbers, and so was I!  Because it’s August, everyone is on vacation, so he is a fill-in from Woodwinds Hospital in Woodbury, but he was a very nice guy and we had a great visit today.

So as exhausted and in pain as I was, dragging my sorry butt into St. John’s Cancer Center for a blood draw through my port, and came out feeling exhausted, but a bit victorious!

I need to caution myself, though, that if when I DO need a transfusion in future, it will not be some kind of failure, but simply the need to do for my body what it requires.

* This was a fear I lived with, quietly, for the past 9 months or so.  I would refer to my exhaustion every now and then to Kathleen, but mostly what I felt was shame that it seemed that I was unable to keep up my part of our work agreement. 

Of course, NOW I know that my body was battling Cancer, but at the time I thought I was just ageing very quickly, or maybe being lazy. 

I discovered during this period that sometimes, when I felt at the nadir of my strength, along would come a chilling fear that I’d NEVER have more strength.  A feeling like, “I will NEVER feel better than I do at this moment.”  It felt like the very definition of hopelessness.

As scary and overwhelming as the word CANCER is, it’s far LESS terrifying than the abject fear that I would NEVER feel any better than I did last November.  The diagnosis of Cancer has given me a bit of hope, and that’s worth gold.

THIS is why I feel lucky.  I feel that I’ve been given a chance to see the horizon, where before the diagnosis it was just a foggy bank of pain over in the distance.  Now I have a direction where I can look, and dream.

Some Days

Today is a pure exhaustion day.  It’s 9:17, I’ve been up and down since 2am (hip pain makes it hard to stay level, so I’m up, then down, then up, etc.  You get it…)

I just walked to the dining room, moved a very small watermelon to the kitchen, cut it open, chopped 1/4 of it into a bowl, and I feel as though I’ve worked a full day on the factory floor.

Jobs I thought I’d be able to do are slipping from my hands, and the gratitude I feel toward Kathleen and Layla for picking up the slack is larger than I can explain or ever return!

Today is the first time I’ll be able to get in to see the Cancer Psychiatrist, and this is a visit that is LONG overdue.  We were supposed to see her last week, but that visit was cancelled (it makes me sad because I wanted Max to have a chance to at least MEET the doc before he returned to school)

But I’m VERY grateful that it’s happening, and I’m going to try to
have the energy I need to make the visit really matter.

Couldn’t Come Too Soon
I’ve been so—stressed—over the past few days that I feel as though I’m coming out of my skin.  Small things, totally microscopic and inconsequential things, drive me up the friggin’ wall, and I’ve screamed more in the past few weeks than I have in the past 45 years.

I leave my first 11 years out of that because heaven KNOWS
how much I screamed during THAT period of my life…

So I’m hoping that there will be some strategies that will allow me to be a nicer, better person around my family (who are going through hell right with me…)

AND I’m wondering if there might be some kind of drug that would help me relax…

The Ol’ MJ
Of course, that drug COULD be the Medical Marijuana for which I’ve been approved, but I’m STILL waiting for my Pharmacist interview I have to go though to actually get PRESCRIBED anything.  Dang.

Mouth Of Sore
Aside from the mental wilderness into which my brain has wandered, physically the week of Chemo is catching up on me.

My mouth is one huge sore.  All along the edges of the mouth, in the palette and tongue and along the sides it feels as though there’s a constant fire going on all the time.

Ice, jello, ice pops and cold drinks are my friends.  Unfortunately, the more ice I take in, the more I have to make my way up to the bathroom for more good times, and the more exhausted I get.  A vicious ice circle.

Swallowing is becoming very difficult.  I think I need to start using straws, because even a small mouthful of ice water (or any beverage) makes it SO difficult for me to swallow.  I fear choking, or at the least a coughing fit because THAT really hurts my chest so badly.

The only foods that really go down smoothly are ice cream type of foods, ice pops, mochi, kulfi, all kinds of iced dairy treats!

On a side note, due to the kindness of my neighbor, Kristen, I’ve been able to make a bunch of YoNaNa frozen banana dessert, which helps me get potassium to fight the leg cramps (another side effect haunting me all night) and allows me a creamy treat without a great deal of dairy, which can play havoc with my digestion these days…

My hair is starting to fall out (not a ton, but it’s very obvious in the shower) I KNEW that would happen, I was told by my doc, and it’s not something that troubles me too much.  I’m cool being bald for a bit, and if my hair never grows back I think I’d be fine, too. I think…

The exhaustion has reached a whole new level.  Just getting OUT of a chair takes me as much mental preparation as getting ready for the first leg of American Ninja Warrior*

Sitting up takes more effort than I can muster some days, and THAT is a very frustrating and frightening aspect of this recovery.  I was prepared in part for the exhaustion, but I was NOT prepared for the weakness I feel in every aspect of my physical being.  I can’t sit with my legs up and cross them without help.

This is — hard.  That is the best word for it. Hard as a rock.

Audio hallucinations seem to haunt me before bed and when I first wake.  Sometimes visual oddities pop up, too; feeling that I’m seeing — someone — out of the corner of my eye.  It’s weird, but it’s also comforting in a way, as if I KNOW the voices I’m hearing and they’re just in the other room, laughing and having fun.  This is weird, I know, but Gerry used to get the same sensation (and I think he still does sometimes) so I know I’m not alone in this.

SO here I am, whining and bitching, sitting and inviting all of you into my stream-of-consciousness moan about my health.  Today is a rough day, let’s hope tomorrow is a better one!

*No, I haven’t actually PARTICIPATED in ANW, I’m just going by how impressively the contestants psyche themselves up before that first round…