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!

Respite

What a lovely weekend!

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

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

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

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

Ellen Ponders The London Tube, 1983

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

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

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

Early Morning Chatter

Ellyn, Annie & a Yeomen Warder in London, 1983

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

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

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

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

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

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

Fan Mail From Some Flounder?

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

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

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

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

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

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

NOW It’s Real

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

My cane matches my pedicure!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Calm Before Thursday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank heaven for Andy.

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

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

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

I need this.

The Pain Drain

One thing about this whole cancer adventure is that I can’t really know what to expect on any given day.

It’s a huge mystery, and it seems that there are as ways a cancer journey can unfold as there are folks who’ve had cancer.

I had THOUGHT that once we got my pain settled with the 3x Oxycontin + as needed OxyCodone, I would be good to go.  And that worked for a few weeks.

But apparently because the tumor in my spine had metastasized again into my hips and tailbone, and it brings a whole NEW tenderness and sensitivity.  I wouldn’t have chalked it down as actual “pain” until today, when the sensation definitely grew into a pain situation.

My morning adventure was getting X-rays at St. Joseph’s hospital, then seeing my neurologist to discuss the X-rays, and then a drive over to St. John’s Cancer Center for a refill of my chemo pump medications and home for resting.

Unfortunately, St. Joseph’s is one of those old-type hospitals in a downtown area that is actually a series of buildings that have been cobbled together into one unit.  This means that there are very few DIRECT ways to get from one department to the next, so my walk from the entrance to Radiology, and then another walk to the Neurology dept were BOTH extremely long (involving several elevator rides and lots of walking)

And this caused me extreme pain.  It wasn’t the walk as much as it was the big brace I had to wear, which pushes down on my hips in a MOST uncomfortable way, and causes me to sweat like a Swede in a sauna.

Seriously, you could have WRUNG OUT the T-shirt I was wearing under the brace,
and heat causes my skin to bleed (I’m a redheaded weirdo)
and THAT causes a great deal of pain.

It was so bad that I got a special dispensation to only wear the brace for comfort reasons. I’ve been pretty good about wearing it whenever I travel in a car, or when I’m walking around outside, but with the advent of the hip pain I must admit I’ve been leaving it off as much as I’ve been wearing it.

I feel very fortunate that my neurologist is taking the fact that the brace is CAUSING me pain seriously.

But it’s been hard to climb out of the hole of pain in my hips that I slunk into this morning.  I know that after I’m able to get a decent night’s sleep the pain will begin to resolve itself, but right now it’s a cold, hollow pain that fills both hips, it’s probably time for a lidocaine patch, to be honest.

Pain is such a game changer.  It feels good to discuss it, but I also know how boring it must be to open my blog and read, “Pain, blah, blah, blah, PAIN!” But that’s my reality today.  Which is so weird after a few weeks of very decent pain control.

It also makes me wonder if the chemo pump drugs I’m on are having
some kind of effect on my pain meds, perhaps undercutting them in some way..?

Tomorrow I meet again with my Radiational Oncologist to discuss returning for MORE radiation treatments to deal with this pain, and to deal with the metastasis of the spine tumor.  This whole thing sounds so danged scary, but each and every nurse and doc and health professional I deal with has been NOTHING but hopeful that all of this is just part of my own, personal cancer journey.

I appreciate their hope, it gives me a lift, and makes my days a bit easier.  My nights, however, continue to be honeycombed with pools of pain and fear.

On a personal/work level, I am feeling terrible that I’ve not been able to swim above this pain to get more done on the website.  It’s like I can’t 100% focus on anything but — well — pain.  That’s what pain is, I guess, a big, fat element of life that steals all the focus from everything else.

And, by comparison, the pain I’m feeling is actually much LESS than the pain I was feeling for most of the Spring/Early Summer.  It’s just that now that it’s attached to the word “Cancer” it’s as if the pain has a deeper color, a scarier hue, and it can be alarming.

Chemo Day 1, Done & Dusted!

I’ve been pretty nervous about this chemo thing, nervous for many reasons.

70’s Movie Fest
First of all, I grew up in the 60’s & 70’s, I watched Brian’s Song and Death Be Not Proud and Love Story.  I watched Terms Of Endearment and Garbo Laughs and a plethora of other movies.  Oh, and the TV ad parodies…

Gee you’re swell!
Guess what? No one fucking lives in those movies.  NO ONE. It sets a kid’s head on a bit crooked to only ever see folks die in ‘cancer flicks,’ but that was the 70’s.

Even after experiencing the magic that is a “partial recovery” in my husband (well, recovery until his cancer reemerges every 3-5 years…) I find myself terrified that chemo = end of life.  But it doesn’t.  And I have to keep telling myself that.  It’s something I KNOW, but I still have to repeat it to myself.

Thank you, every made for TV movie I ever saw in the 70’s, for NOTHING.

Plus, in all those movies folks just get sicker and sicker.  They get sick ALL OVER THE PLACE, then they have a lot of pain, then they get sick again.  Then they die.  That is the script.  “Blech, ouch, bye.”

Not MY script.

Any Exhaust Port…
I was also fearful today about the port they had “installed” into my chest cavity a few weeks ago.

The first time they tried to use it, apparently there was swelling, but today after a bit of working around it was able to go just fun.  Huzzah!  Now I’m attached to a pump so I’ll be receiving the chemo meds all night long (Yo, check this Bitchie, Lionel Ritchie!)

I need to take a moment to talk about my Chemo nurse, Jennifer, who was SO damned amazing and wonderful and made my day good and special and positive.  THANK YOU SO MUCH, JENNIFER!   You did an amazing job today, and you settled the hearts and minds of myself, my husband and “Kid Caregiver” (Andy’s new moniker)

Tomorrow I’ll go back to the pump room to get more drugg-age to be pumped into my body and into my soul.  All night long.

Where Are We, Exactly?
Tomorrow I’m ALSO going for some kind of special big-time Xray at St. Paul Radiology so they can get a very good look of how my Spine tumor has dealt with the death ray we like to call “Radiation Therapy”

We just keep looking for the exhaust port in this Tumor so my tiny little Luke Skywalker can send some radiation torpedoes down it.  Tomorrow we see how successful those X-wings have been.

I’m nervous about what we’ll find in the Xray, but it’s a vital part of the recovery. Assessing how the therapies are working.

Lumbar Madness
On Wed I have yet ANOTHER Lumbar Puncture, with one each and every Wed after that for a month. And I have Jennifer, my amazing chemo nurse, chasing down anesthsia for each and every one of those punctures. THANK YOU, JENNIFER!

Why all the lumbar punctures? Assessment. We need to see what’s going on in what has become a pretty fast moving cancer ride.

The BIG Q is, “Is the cancer actually IN my spinal cord.”
Let’s just keep hoping the answer to that question will remain, “Nope!”
I told you the news last week wasn’t terrific. But I WOOL SURVIVE.

So every Tuesday evening will be a Dance party with Gloria Gaynor & Lionel Ritchie.  Let’s throw some 80’s Joan Armatrading in there for the Carrib beat.

“I’m lucky, I’m lucky, I’m lucky
I can walk under ladders…”

So that’s my upcoming week, and I am READY to go.

Breathe, Damnit!
Today during my chemo I had a bad reaction.  Not terrible, but not great.  When they sped up the infusion, my body responded by trying to shut down my breathing.  Gerry rushed to the chemo ward with my breathing meds, I was given a nebulizer treatment, and they slowed the chemo down to 50 again and all was well.

So I’ll be getting my Rituxan rather slowly, and that’s okay.  And I just realized I forgot to take my long-lasting Oxycontin OR my breakthrough pain Roxicodone.  It never ends, does it…

D Day

I’ll Be Taking The Walking Path For The Time Being!

The diagnosis of my cancer was PDQ (pretty damn quick), coming immediately after they’d finished my MRI on July 23rd.  At the time I was a bit nonplussed when the ER doc, after one test, made a pretty conclusive initial diagnosis; “Well, you DON’T have Fibromyalgia, you’ve got CANCER.”

After a bit of discussion I understood what me meant was that there were THREE pretty sizable sites of metastasis (spine, back of the neck and lymph nodes) which was as much of a guarantee that I had cancer as anything else they could have seen.  The mystery at that point was, what exactly was the PRIMARY cause of the cancer.

The days between the initial MRI, the lymph node biopsy and the point when the pathology was ready to be addressed were LONG ones.  Only 5 days, but it felt like 5 months, and it weighed very heavily on my psyche.  Those were 5 days of pure fear.

Dexamethasone: All the sweats, hot flashes, puffiness and irascibility of Menopause, now in a convenient PILL!

When my Medical Oncologist, Dr. N, sat us down and told us that I had Stage 4 Diffuse B-Cell Lymphoma, our reaction was SO positive I think it surprised him.  My big fear was that I’d had a large, solid mass tumor somewhere; colon, liver, some terrible place.  And THAT would have been a very difficult diagnosis to process.

But I was extremely lucky.  Lymphoma is a cancer where the word “cure” is actually used.  Yes, I am VERY lucky!

TODAY is another D-Day, at least for me it is.  Today is the day we look at the results of all those tests I’ve been taking this past week, most especially the bone marrow biopsy and lumbar puncture, to see if the cancer has moved into my spinal cord.  I think it’s about as scary as it sounds.

I asked demanded that I have my two more painful tests under anesthesia, and more than ever I’m convinced it was a very good call.  The residual pain I feel in my back and hips from these tests is pretty extreme this week, I would hazard to say that the pain these last few days has been as bad as it was at the start of this adventure in mid-July, which is pretty bad.  The main difference is that this time I have several pain meds I can use to break through this pain, and that’s a mercy.

Dealer’s Choice
So today I have my “long visit” with Dr. N,  where we’ll go over the test results and discuss what may be the next step in this trip.  With absolutely no medical experience or education of any type, my only point of reference is having been Gerry’s caregiver for so many years.

Topical pain relief from Galina!

But the truth is, Gerry is the ‘researcher’ in the family; he goes into his head, he reads stuff, he deals with numbers and percentages, THAT’s his comfort zone.

I’m not dividing my observations into a male/female way of dealing with pain and new medical information, because I know many women who are very numbers oriented (me, for one!) and I know MANY men who approach things in a more “feeling” way.

But in the case of Gerry and myself, I tend to be the “emotions whisperer” with the kids, Gerry tends to put the numbers into some type of structure that we can use to understand them better.

For this reason, when Gerry gets scared, or shows his emotions, it hits me very hard.  I’ve been scared this week, no specific reason, just overall FEAR.  Gerry admitted to me last night that HE is hella scared, too.  His fear paralyzes me, but I never want him NOT to tell me he’s afraid; he keeps SO much stuff bottled up inside as it is, I’m HAPPY that he shares his fears with me, too!

Emotional pain relief from Galina!

Good teams, like our family, will always find a way to regroup and work together, changing roles as each of us changes our outlook or understanding of the disease.  I am DEFINITELY feeling the need for some therapy, though. HealthEast Cancer Care at St. John’s only seems to have ONE Oncology Psychotherapist, and we have an appt for next week.  Apparently she’s exceptional, well loved, and — it being August — has been on vacation.

Note to self: NEVER get cancer in August again if you want to see your care team together in the same week…

I’ve been mentally preparing for The Worst News Scenario, and alternatively preparing for The Best News Scenario.  It’s really all one can do at this point.  Having spent a life in the theater, mostly working backstage, I love the feeling of an audience receiving all the parts of a theatrical production in the “order” that the director, designers and actors choose to present it.  Seeing exposition (back story) presented cleverly and well is a hallmark of exceptional theater.

Rx Pain Relief from the Docs

In terms of my cancer, ALL of the exposition rests in the hands of Doc N, who will reveal precisely what HE understands is happening inside of me later this morning.  In 4-1/2 hours, to be precise.  Which Gerry will want to be.

News when I have it!  Love always!