Today's Lesson: Don't Cough So Hard That You F**k Up Your Ribs

Soothing earth tones and nature graphics, soft lighting, hushed quiet.  Ahhhhh.....looks like a nice relaxing waiting room of a peaceful spa, right?

Wrong.  It's the waiting room for Urgent Care, which is where I was last night after work.

Seems that there's these bones in your chest called "ribs" and when you cough too forcefully, they can become shifted, dislodged, or fractured.  Oh, and it will cause STABBING PAIN every time you breathe or sleep or try to cough.

Yippiee!

Wednesday afternoon I was talking with my boss at work and launched into another coughing fit; in the midst of my hacking, I felt a "pop" in my upper side/chest and then shooting pain.  Wonderful.

By Thursday afternoon, it was bad bad bad, so I made a detour on my way home from work and stopped at Urgent Care.

Since I just had an x-ray a week ago to rule out pneumonia, the doctor didn't want to do another because of all the radiation.  And, even IF an x-ray showed a rib issue, there's nothing they can do about it.

Lovely.

But she did swaddle me in a nice, tight rib band, which feels so good!  I'm supposed to wear it during the day, and it really seems to help.  I'm to stay on the hydrocodone/homatropine syrup at night (LOVE that shit!), and do the Benzonatate pills and OTC cough syrup during the day, supplemented by Motrin.

It's ironic that I have Stage IV NHL, was on watch-and-wait for a year and a half, and went through four Rituxan infusions, and have basically sailed through it all with no problems - but I'm sidelined by a stupid rib injury caused by coughing.

How do I feel about that?

 



 

Hack, Hack, Gag, Sputter - The "Rituxan Cough"

Beginning about week two of the Rituxan infusions, I developed a slight tickle in my upper chest that would cause me to occasionally cough a little.  Because one of the side effects of Rituxan is a cough, it was really no big deal.  Looking back, I can now see the progression from that annoying "slight tickle" to the full-blown alien-trying-to expel-from-my-chest thing that's become part of my life.

I had mentioned the cough to Dr. Hampshire at my most recent appointment, on the day of my last infusion on August 23; since it was still just annoying at that point, he said to keep an eye on it and let him know if it got worse.

After many nights of no sleep, sitting upright, and slugging over-the-counter cough syrup and cough drops all night - and dislocating a rib and pulling chest muscles - I finally gave in and contacted him last week.  He ordered a chest x-ray, just to be sure it's not pneumonia or an allergic reaction to the Rituxan; when the x-ray came back normal, he prescribed Benzonatate (tessalon perles), a little round gel-cap cough pill to take three times daily.  Since I could manage the cough during the day by using cough drops, I saved the Benzo for nighttime use.  My routine became taking a Benzonatate before bed, washing it down with a big dose of max-strength OTC cough syrup, and sucking on a cough drop as I fell asleep (sitting up, of course).  I'd be good for maybe an hour or two, then would wake up wracked by a shuddering, convulsing cough and stagger into the bathroom to do the Benzo/cough syrup/cough drop trifecta again.  Wash, rinse, repeat.  All night.  UGH.

Yesterday, after penning another whiny email to him, Dr. Hampshire called in an Rx for cough syrup.  I fully expected the normal prescription of a small bottle of cough syrup with codeine.  What I got, though, was a one-pint "bulk container" of Hydrocodone/Homatropine.

Huh?

Of course I jumped on the web to find out what this was.  Turns out this is the big guns.  Hydrocodone is an opiate component of vicodin, and homatropine is a neurotransmitter blocker.

Yeah, buddy!!!

Last night was my first time trying the H/H and.....

.....drum roll, please.....

.....I slept ALL night, for the first time in a month!

I only got up once to go potty, and I didn't cough AT ALL. 

Wow - that's some potent shit, blocking neurotransmitter messages and inhibiting receptors and all.  Kinda frightening, since taking too much will cause respiratory suppression.  YIKES!

Dear cough that has been vexing me for the past month: Your days are numbered. I have a new favorite bedtime cocktail that's gonna kick your ass.  Take THAT, you sleep-depriving, chunky-gunk producing tormentor!

  

August 23, 2013 - 4 of 4!

The fourth and (for now) final Rituxan infusion is in the can, baby! WOOT!

Friday began with an office visit with Dr. Hampshire the Awesome Oncologist, where we went over how I've been tolerating the Rituxan.  Very well, thank you!  With the exception of the cough that appeared during week 2 and the occasional fatigue, all is well in Rituxanville.  Since it takes 6-8 weeks for Rituxan to fully conclude its job following the final infusion, we scheduled a CT scan and office visit for October.

Then I made the short walk next door to the Outpatient Pavillion for the infusion.

I was in the chair by 9:30 AM and napping soon thereafter.  When Arlene the wonderful nurse said "Are you ready to go home?", I had no idea what she was talking about.  I thought something happened and they couldn't do the infusion, but she said "No, you're done!" 

Wow - talk about falling asleep HARD!  It was 12:30 but felt like only a few minutes had passed.  Alrighty then! 

Ran some quick errands on the way home, then took a little nap - apparently to recover from the hard napping I was doing at the infusion center!  Woke up feeling great and ready to put in a couple more hours of work on my little trailer.

With my next CT scan and oncology visit not scheduled until October, I feel like I've got a reprieve for a few months.  Not that the infusions or lab visits for bloodwork were bad; they were just a constant reminder of my extended stay in Cancerland.

Now, until October, I'm FREEEEEEEEE!!!!!

The next day, I was up bright and early to meet the 'Bad Tink team on the shores of our beautiful Mission Bay for the first session of this season. 

As Honored Teammate, I was going to be speaking to the Team, but didn't prepare anything.  I wanted to be able to speak from the heart.  It was an incredible honor to be able to stand in front of them, less than 24 hours after finishing up a series of four immunotherapy infusions, and show them in person what their fundraising dollars do.  Sixteen years ago, if my oncologist told me that my days on watch-and-wait were done and I needed to begin treatment, it would've been straight to chemo and its toxic side effects.

The FDA approved Rituxan as immunotherapy treatment for follicular Non-Hodgkin's Lymphoma in 1997.  Prior to that, Rituxan didn't exist as an option. 

Rituxan was made possible in part because of the millions of dollars funded by The Leukemia & Lymphoma society for research and development.
 
And those dollars are raised by Team In Training athletes.

Quite a successful circle, I would say!

It's my hope that each runner and walker who listened to my story understands just how gratefully appreciated their fundraising is, and that every dollar MATTERS and is making a difference TODAY.  Right in front of them.




So grateful to each and every Team In Training athlete.
 

Thank YOU.

Because I'm still SO not a runner, I joined the Team walkers for their two miles along the bay, then finished up the morning chatting with this season's wonderful Teammates.

 

Then it was off to Home Depot for more stainless screws for my trailer project.

 

Because life gratefully goes on!

 

August 19, 2013 - Team Luv, Part II

Earlier last week, I received an amazing request from Coach Sam, one of the fabulous coaches for San Diego Team In Training (TNT):  would I consider being the Honored Teammate for the upcoming 'Bad Tink winter season?  " 'Bad Tink" refers to two of the events the team will be training for:  The Carlsbad Half Marathon and the Tinkerbell Half Marathon, both to be held on January 19, 2014.  Training begins August 24.

Coach Sam is a powerhouse athlete tucked into a tiny package.  She was one of the coaches when I did TNT last year for the Carlsbad Half Marathon, and was a constant source of support and smiles.  On race day, she and Coach James ran the course back and forth, catching up to purple-clad TNT teammates and running with us for a while, encouraging and cheering us on.  They must've run 100 miles during that half marathon!

So when she asked if I would think about being the Honored Teammate this season, it took all of two seconds for me to say "Of course!"

An Honored Teammate is someone who is battling or has won their fight with a blood cancer.  They come to Saturday sessions to tell their stories and cheer on the athletes. 

For me, however, it's a chance to express to these runners and walkers how grateful I am for the fundraising they do for The Leukemia & Lymphoma Society, and to show them in person what their fundraising dollars do:  as a Rituxan recipient, their hard work - both putting in miles and raising dollars - is directly affecting me.  Right now.  Right here.  Right in front of them.

I'm incredibly proud to be able to help TNT and LLS - I am your humble and grateful servant, use me any way you can!

August 17, 2013 - Team Luv, Part I

The day following infusion number three, I was up early and on my way to work. No wait - it's Saturday, you dope! Yeh, I know - but this was for FUN, not work.

The San Diego Team In Training Triathlon Team was doing a cycling training session that would turn around at my work, and I was asked by a tremendously wonderful friend if I would be there to greet the team.  I had met Melissa last year about this time when I did Team In Training for the Carlsbad Half Marathon.  She is a passionate athlete and fundraiser for The Leukemia & Lymphoma Society and has singlehandedly raised over $10,000 - that's HUGE.  How could I say no?

It was a work day for daughter Amanda, so she and I sat out at the entrance and waited for Team to arrive. 

How exciting to see all those purple jerseys wheel up, and how fabulous to cheer them on during their training and to personally be able to thank them for their hard work!

The athletes of Team In Training are all stellar heroes in my book.  I know how hard it is to train for something as initially intimidating as a half marathon, or a marathon, or a triathlon - but throw in all the hard work it takes to fundraise, plus any personal life you want to have, and you got yourself a real challenge.

But it's because of these dedicated athlete-fundraisers that I'm able to get up early in the morning following an infusion for Stage IV Non-Hodgkins Lymphoma and be there to cheer them on:  Rituxan was made possible in part by research dollars from The Leukemia & Lymphoma Society, raised by Team In Training athletes. 

In the pre-Rituxan era, which wasn't too many years ago, I would have gone from watch-and-wait directly to chemo and all its toxic side effects.  Rituxan, working with the immune system, targets a specific protein on the cancer cells and programs them to die, leaving healthy cells alone.

So do I feel a personal debt of gratitude to Team In Training and The Leukemia & Lymphoma Society?

HELL YEAH!

Melissa, Amanda, and I.
GO TEAM!

   

 

August 16, 2013 - Third Infusion

Talk about uneventful - and that's a GREAT thing!

The appointment for infusion number three of four was at 9:00 AM; by 9:30, I was settled into the recliner and the Benadryl was a-flowin'.  About 15 minutes later the Rituxan was started.



The beautiful, full-of-love-and-hugs Sister quilt.

This infusion was the first since I received the treasured Sisters quilt earlier in the week, and I couldn't wait to put it into action.  How cozy and toasty it was!  The pink flannel backing made it  so nice and warm, but its real power came from all the love and hugs that are pieced into it.  There is a very real healing energy in that quilt, and I'm so blessed to be its current recipient.

I put my earphones in, again pulled up some wonderfully soothing meditation music, and let the cocktail hour begin.

I feel asleep fast, and only marginally woke up every 30 minutes when BP and temp were taken.  Three hours later, the Rituxan bag was empty and I was on my way.  No reactions, no problems - YES!!!

After running a couple of quick errands, I went home and straight to the front bedroom for an extension of that little nap I took in the recliner.  I had hung two posters of my happy place - beautiful beaches in the Maldives that I will get to someday - and have now taken to calling this my "healing room."  When I'm snuggled in the bed having a delicious post-infusion nap, cuddled up to my dogs and surrounded by my books and travel tchochkes and the fabulous light coming through the windows, I feel like the cancer cells are just simply evanescing out of my body.

Piper loves the healing room, too.

Piper, can you scoot over so mommy can lie down?  Piper?  Hellllooooooo?

 

I hang the wristband from each infusion on  one of the 
happy place posters, as a reminder that life's short and if you
want something, ya gotta do it - like going to the Maldives!
YOLO, ya know?

I see Dr. Hampshire the Awesome Oncologist next Friday prior to infusion 4 of 4, and we'll decide how to proceed from there.  Common protocol for Rituxan alone is to have a 4-week infusion every six months for two years - but it can also be done as a single 4-week infusion to shrink naughty nodes.  Since it takes several weeks after the last infusion for all of the Rituxan to have done its job, I'm assuming that I'll have another CT scan in a couple of months and we'll go from there.  Since this cancer thing is Stage IV and in my bone marrow, he may want to do the two-year course, but since I don't know at this point, I ain't even gonna worry about it.

Whatever the result of the upcoming visit with Dr. Hampshire, I DO know that, with the exception of the initial bad reaction during infusion number one, my body does really well on Rituxan.  Since about week 2 I've had what's called the "Rituxan cough" - an annoying cough that's worse in the morning, like when you have a cold - and occasional fatigue and minor flu-like symptoms, none of which have impacted my life very much at all.

And that's exactly how I want it!

August 13, 2013 - SISTERS

I stand corrected from my last post - there IS something to write about.

A phenomenal group of women who I've never even met in person, yet with whom I share a strong bond.

Women whose spirit of adventure is outmatched only by their enormous capacity for caring and their lovely supportive hearts.

I've blogged about them before - Sisters On The Fly (SOTF), whose mission statement is "Offering empowerment and sisterhood through exceptional outdoor adventures.”  They're a group almost 4,000 strong, in their twenties and nineties and everywhere in between, who camp, fish, kayak and journey together, many of them in little vintage travel trailers.

The trailers are what drew me to the Sisters - brightly painted and uniquely individual, brimming with things you didn't even know you needed for camping:  frilly petticoats; china and martini glasses; lots of plump, overstuffed pillows; vintage train cases; maybe a lasso or two.

I joined SOTF because of their core value of empowering women to do things they never dreamed possible - that, and their kick-ass cute trailers!  I figured I could learn a lot from these ladies about how to makeover my teeny tiny 9' 1964 Thunderbolt, "Lil' Chick" (to follow her progress, see my other blog:
www.1964thunderbolt.blogspot.com).

But the Sisters are so much more than the sum total of their trailers and outdoor adventures.  Through text, Facebook, phone, and email, I've gotten to know some of these extraordinary women, and they all share some common threads: genuine deep-rooted kindness, fabulous humor, encouragement and support, caring, and love.  Their hearts are as huge as the wide open skies they camp under.

Yesterday, I became a humble recipient of a tangible piece of Sister love:

Sisters have pieced together, restored, and purchased what they call Traveling Quilts.  When a fellow Sister is ailing, undergoing medical treatment, or recovering from accident or illness, word travels fast.  And because Sisters can't all be there physically to offer hugs or words of comfort, the Traveling Quilts become surrogate Sisters, tangible and beautiful snugness to wrap around oneself for as long as it's needed.  When the quilt's job is done, it's passed on to another Sister and the circle of support continues.

Can I just say again how amazing this group of women is?  They've never met me, most of them are in states across the country, and all of them are busy with their own lives.  It’s through care and kindness like this that healing happens. 

Thank you, my dear Sisters, for your thoughtfulness, your energy, and your prayers. This stupid cancer doesn’t stand a snowball’s chance when it’s up against the phenomenal strength of Sister Power!

XOXO

To learn more about these wonderful women, go to www.sistersonthefly.com.