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.


 

    


       

 

August 11, 2013 - Day Two, Post-Infusion #2

Another day of zero Rituxan after-effects.  Yippieeeee!!!

Took advantage of that and cleaned the house, did laundry, worked on my little trailer, gardened, and made dinner.

Blessedly dull, eh?!?

Because I'm boring even myself with these non-reports, I'll go back to only updating the blog when there's something to write about.  The next post will be sometime after this coming Friday's infusion, which will be numero tres.

YAY for nothing to write about!!!

August 10, 2013 - Day One, Post-Infusion #2

This is just ridiculously easy this time.

After again sleeping 12 hours last night - and again peeing and sweating a lot - I woke up this morning to no fever and TONS of energy!

Spent most of the morning in the driveway in the old trailer, "Lil' Chick," working some makeover magic, spackling and moving an electrical outlet.

After lunch, it was off to AmVets with a truckload of stuff to donate, then computer time to update the blog about yesterday's infusion.  Now I'm gonna spend some quality time in the kitchen and make a yummy Spaghetti Squash Au Gratin with Kale and Mushrooms, then put my feet up.

Can I get a "HELL YEAH!" for feeling great, post-infusion!?!

August 9, 2013 - Second Infusion

Infusion Number Two:  DONE and DONE!  And much easier than the first, I might add.  

Appointment time wasn’t until 1:00 PM, so that left a little time beforehand to get some errands done – and have a little bite to eat in the car on the way.



I know, I know – not the healthiest snack in the world,

but damn it tastes good!

After the first infusion, as I was making my way to the 5^th story of the parking structure, LaLa let us in on a little-known parking secret:  part of the ground level is reserved for cancer patients.

Now, if there had only been just a few empty spaces, I definitely wouldn’t have parked there – those spaces need to be kept open for patients who are worse off than this Lymphopixie.  But the area was mostly empty, so I parked and schlepped my stuff into the infusion center.



I checked in and had a seat in the waiting area, but this time only had to wait about 10 minutes before being called back to a chair.



Peace.  Or infusion number two. Take your pick!

Yeh, I wouldn’t be smiling long.  Poor Arlene the awesome nurse tried to get the IV started in a vein on the underside of my left arm, but it just wouldn’t take.  After jabbing the needle around in my vein for a while, she decided to take it out and try again somewhere else.

Right after this photo was taken, my brain kicked in and said, “You DO realize that you have a needle swimming around under your skin, trying to find a good spot in your vein, don’t you?  Doesn’t it feel ooooogy and icky?”

Blech. 

Um, yeh it DOES feel ooooogy and icky and now so do I. 

I started to feel really faint, but had the presence of mind to recline the chair and get my feet up.  Never passed out, thank Buddha, and Arlene was able to get the IV in.  After that little episode, I felt fine.  There’s just something about a needle wiggling under my skin trying to land in a good spot in a vein that just icks me out…..

Onward!

A few hives sprung up on the underside of my arm at the site of the first IV attempt, but never spread or got out of hand.  Not sure why they appeared, as there was nothing in the IV at the time.

Hives of unknown origin. Go figure.

I again took the two Tylenol for the anticipated fever, and Arlene started the pre-med Benadryl.

I decided I wanted to make my IV bags a little more spiffy this time, so I brought some décor….. 

After all, this IS my new favorite cocktail!

Front-row infusion chairs have the best views!

This time, I was started off at 100-whatevers, with the goal of getting to 400 in increments of 100.  Last time, it was incrementally by 50, I had that bad reaction, and I only was able to make it up to 300-whatevers.  I was more than slightly concerned that this increased drip rate would spur another reaction!  But Arlene said, “Nope, this time you won’t have any reaction at all.”  She said it with such confidence that I said, “Alrighty then!  No reaction today!”

The power of positive thinking and putting good energy and thoughts out to the Universe is amazing!  I kept having NO REACTION!  RIGHT ON!



Like last time, blood pressure and temperature taken
every 30 minutes. This time, my BP stayed consistently right
where it should be, and my temp only rose by two degrees.

I had myself plugged into my tunes, and dozed off and on to wonderfully soothing meditation music.

When I wasn’t dozing, I was reading.  At the time I was packing my infusion day bag for this session, I didn’t realize the irony of one of the books I included:

Wow – this could be the title of my exploits in Cancerland,
since this pesky cancer thing was discovered completely by accident!

I also wanted to cozy up for a fix of glamp porn…..

…..and to literarily visit with some of my thousands of new-found Sisters in Sisters on the Fly.  I joined this phenomenal group of women when I decided to buy a vintage trailer to glamp-up - for THOSE adventures, see my other blog, www.1964thunderbolt.blogspot.com

www.sistersonthefly.com

There’s a fabulous spiritual thread than runs through the Sisters, a hankering for adventure and seeing new places and trying new things.  Their stories are empowering, embolding, and inspiring, and make me confidant that I can do ANYTHING, including making over a 1964 teeny tiny trailer AND kicking ass on this cancer thing!  I’m proud to be Sister #3668!

After only about three hours, my Rituxan bag was e-m-p-t-y !  Because the drip rate is started off low and slow, it takes a long time for the bag to start to go down; once the drip rate is steadily increased, though, it seems like it empties pretty fast.  Yay for that!

The IV was removed, one final BP and temp taken, and then I was outta there!

Happiness is being in the car after a non-reaction infusion!

Starving again, I made a beeline for Cheesecake Factory.

I’m a sucker for Cheesecake Factory’s Chicken Madeira.

I boxed up half of my dinner so I could save room for dessert – DUH!

A little (actually, big) slice of heaven!

Overall, this second infusion went almost textbook:  they say that if there’s going to be any reaction, it’ll be with the first one, and that subsequent infusions will take less time.  Correct on both counts!

Now go to work, Rituxan, and kill off those annoying cancer cells!