August 3, 2013 - Day One, Post-Infusion

After my 12 wonderful hours of sleep, I got up, showered, had a yummy orange cranberry scone and coffee for breakfast, and started in on the water.  To aid in flushing the bad stuff out, it's recommended to drink 2-3 quarts of water in the 48 hours following a Rituxan infusion.  Now, I'm SO not a big water drinker - I'm lucky if I can get through one 16-oz bottle a day.  But I started guzzling as soon as I woke up and got two quarts down by the end of the day.

Body aches, chills, and flu-like symptoms are common with Rituxan, but I didn't have any of that.  I did, however, have a really mild low-grade fever.  I could tell because when I got dressed, I put on yoga pants and a sweatshirt - in August.  I took my temp throughout the day and it consistently hovered right at 99; normal for me is 97 degrees.

I was tired, probably from the lingering effects of the Benadryl, so I decided just to lay low for the day.  I set up camp in the front bedroom with my books and magazines and music and, most importantly, my 200 pounds of Rottie nursedogs.



Jake was snuggled up to my right, while
Piper took her turn on watch.

I resisted the urge to get up and DO SOMETHING - I hate laying around being a slug - and just stayed put.  I dozed and rested and let the Rituxan do its job pretty much all day.

Later, the dogs and I moved into the living room for a change of scenery.....

Oh brother.  Tough life. 
Well, at least I had a change of scenery.

I never felt the flu-like symptoms, nausea, or anything except a little sleepiness.
YAY!

I didn't really eat anything all day except one of LaLa's kick-ass Warrior Cookies (just wasn't expending any energy to need fuel!), so by dinner time I was again STARVING; after feasting at Chili's, I had a stroll around Barnes and Noble to look at books.  About 24 hours post-infusion, I developed a mild case of diarrhea (again, apologies for being gross), which is another possible Rituxan side effect, but my fever returned to normal.

All-in-all, it was a pretty uneventful Post-Infusion Day One - and that's how we like it!

August 2, 2013 - The Journey to Rituxanville

The day I got my hair cut (see previous post), I took a trip up to the Infusion Center at Sharp Memorial's Outpatient Pavilion.  I wanted to have a little look-see before I actually had to make an official appearance there, just to take some of the mystery out of it.

Brianna, the Infusion Coordinator, did a great job of not only showing me around but also explaining the routine and what would occur on infusion days.  From checking in, to getting my parking validated, to weigh-ins, to paperwork, she covered everything and showed me where the important things were located:  fridge, microwave, and bathroom.  I really appreciated the time she took to provide some orientation to this Infusion Newbie, and the fact that she did it gladly and graciously.

The infusion room was a huge space furnished with maybe 15 recliners in two rows facing huge picture windows.  Next to each recliner was a small magazine-stocked cabinet with TV and headphones, DVD player, and electrical outlets, and a guest chair.  Flip-up trays on each side of the recliner allowed for keeping phones, water, snacks, etc. within easy reach.  Behind each recliner were the mobile infusion pumps/IV poles on their little rollie wheels.  I'm SO glad I got to see all this beforehand; a pre-visit is definitely recommended for anyone who's gonna attend a series of soirees at an infusion center.  

There were no special instructions for infusion day, so I showered, took my regular meds and vitamins, had a light breakfast of Special K Protein cereal with raisins and soy milk and a kick-ass cuppa coffee, grabbed my bag (already packed with over-abundance of books, magazines, water, pretzels, yogurt, cheese, and granola bars), and hit the road.

My appointment was for 11:00 AM, but was dependent upon chair availability.  I checked in, turned in my paperwork, weighed in, and got fitted with a stylish  personalized bracelet.  The waiting area was full, so I sort of guessed they were running behind.  But Brianna and her assistant were constantly checking chair availability and getting patients seated as soon as possible, so it was no big deal.

I was escorted to my chair and made comfy (having my own pillow and blankie from home helped), introduced to my nurse Peggy, and blood pressure and temperature taken.  Arlene, the Oncology Case Manager, popped in to introduce herself and let me know about Sharp's cancer support groups, healing programs, complementary therapies, etc.  While she had me thoroughly engaged, my left arm was prepped and the IV started and I hardly noticed.  Think they figured out that the distraction method is the best way to do it?



Fashionable arm hardware.....

.....tethering me to my new favorite cocktail.



Let the games begin.

The IV was flushed, and the Benadryl was started.  Common side effects of Rituxan infusion are similar to an allergic reaction - itchiness, throat swelling, chest tightening, breathing difficulties - so protocol is to pre-med with Benadryl to get that on board before the Rituxan is started.  I was given two Tylenol to relieve the fever that's also common with infusions.  After that, I just kicked back and put my feet up.

The woman in the chair to my right and I began chatting; she had been getting chemo every week for two and a half years for leukemia, and is on oral chemo every day.  I started to say something but the words sounded disconnected and like they were coming out of my mouth really s-l-o-w:  yep, the Benadryl kicked in quick!  At about 12:30 PM, Peggy started the Rituxan.

To lessen infusion side effects and reactions, Rituxan is started slowly and gradually increased until they reach a target drip rate.  For me, it was to be increased by 50-somethings every 30 minutes until they reached the target drip rate of 400-somethings (milligrams, inches, cubits, chickenlips, I dunno - some medical unit of measure).  

I was super-drowsy and in a Benadryl stupor and just wanted to sleep, but needed to call my LaLa, my Lymphoma Angel, Carol (see the blog post of April 17, 2012).  I promised to let her know when I was settled in so she could come by.  And from the Benadryl-feel of things, it would need to be quick, because I was gonna be in nite-nite land pretty soon!

Because my LaLa is my LaLa, she came bearing gifts!

Yeah, baby!  Wine and Warrior Cookies!
An adult Happy Meal!!!



I was surely the most fashionable patient that day, adorned in the beautiful handmade,
sunny yellow apron that Carol brought back from our trip to Alaska and
gifted to me for my birthday!!  And yes, I DID wear it during the infusion!

LaLa and I visited while I scratched my itchy Rituxan head.  That, and a little itchiness in my throat were all the side effects I was experiencing to that point.  Piece 'o cake, right?  LaLa sat in the guest chair at the end of my recliner and we were yakking away when all of a sudden her voice started to retreat and the room began to narrow. 

Hmmmmmm.  I ain't feeling so good. 

She looked me in the eye and said, "Are you alright?"  

"Nah, I think I better get to the bathroom."

So we got me untangled and I pushed my pump/pole into the restroom on wobbly legs.  In hindsight, that was a stupid idea!  I was close to passing out and definitely shouldn't have been on my feet, but of course I wasn't ready to admit that yet.  I felt like I should try and throw up, but nothing came out.  When I went to the sink to wash my hands, I got a glimpse of this ghostly white face in the mirror - geez, woman, you look like hell!  Better get back to the chair, stat.

When I got back and sat down, I got really flushed, then all the blood drained away and I broke out in a drenching sweat.  LaLa called the nurse over and said I wasn't doing well.  Apparently that was my cue to grab the trash can from beside my chair and involuntarily perform the vomiting maneuver that I unsuccessfully attempted a few minutes prior in the bathroom.  There was no nausea and nothing really came up - it was just intense heaving (sorry if this is grapic and gross).  For some reason, I was trying to talk and apologize to LaLa and the nurses for the drama - with my head in the trash can - while heaving.  WTF?!  Just shut up and puke already! 

For the next several minutes, I was only vaguely aware of little snippets of stuff:  a nurse rapidly reclining my chair; staring at a can light on the ceiling; feeling the blood pressure cuff go on my arm and then the nurse saying it was 80/over-something (the last time they took it, it was 124/over-something, so it had really plummeted); Peggy saying that she was stopping the Rituxan and giving me a steroid, Zofran, and more Benadryl; someone putting a cold washcloth on my forehead.

But the one thing that I was acutely aware of - I mean, super focused on - was LaLa gently rubbing and patting my lower leg.  That was the only real thing in that momentarily surreal world, the thing that grounded me and kept me from completely blacking out.



Nearly passed out but still stylish in her apron!



Stabilized, now time for a NAP.

After my BP returned to normal and everything was again stable, Peggy re-started the Rituxan back up again, at a slower rate.  



Drip.  Drip.  Drip.

I dozed for a little while, then woke up with THE WORST restless legs!  I just wanted to chop them off!!!!!  I couldn't stop moving them - they were twitching and agitated and AAAAAAAAGGGGGHHHHHHH!!!!

I finally got up and LaLa and I walked around the infusion room, just to MOVE my irritating, vexsome limbs!  Peggy said it was a side effect of the steroid used to stabilize the bad reaction.  Walking really helped.

By this time, it was about 4:30 PM; Peggy looked at the Rituxan bag and said I should be done in about a half hour - WOO HOO!  LaLa called my daughter Amanda to tell her if she wanted to see me in the infusion center, she needed to come quick because I was almost done!  And it was a great excuse for her to leave work early!



My sweet baby Amanda.

  

The most beautiful view in the infusion room!



Geez, haven't we been through enough cancer together?!?!



Yes, as a matter of fact, blood cancers DO blow!

What's missing?  The IV!  Time to go home!

Five hours after sitting down in the recliner, I was done with my first Rituxan infusion and gathering up my pillow, blankie, gift bags, wine, and cookies, and being escorted to the car by an incredible support team.  With the exception of a little Benadryl-induced spaciness and drowsiness, I felt absolutely fine - and STARVING!  Towards the end of the infusion, LaLa convinced me to eat a couple of pretzels, just to get something in my tummy - even though I was reluctant because of the aforementioned head-in-the-trash-can episode.  But damn those were the BEST pretzels I've ever had!

Still, I needed some REAL EATS!  So I went directly to Hooley's Irish Pub for my comfort food:  Mac and Cheese with Bacon!  What a perfect way to end the day!

With a full tummy and Benadryl still fogging my brain, I was more than ready for bed - and slept 12 hours that night.  I woke up frequently, because I was sweating and peeing a LOT, but slept super well.

YAY!  One of four DONE!

To the dying and dead cancer cells now being flushed out of my body:  SO LONG, SUCKAS!







 



      



 

    

Catch-Up Time: Chop and Donate

It's been nearly two and a half years since I last cut and donated my hair.  It's been WAY annoying lately:  too long, too hot, too hard to contain in hair ties.

Time to chop and donate!

I figured this was as good a time as any.  Even though Rituxan won't cause hair loss, I didn't want to be the one in the infusion room with this hugely long hair when others may not have any.  RUDE!

So I made an appointment with my sweet girl Carmel.  She and I met when we did Team In Training together last fall in preparation for our respective half-marathons in January.  She is a glowing bundle of fabulous energy that I'm so blessed to know and love.  She's also an amazing stylist in Little Italy.

 

Carmel and I at the Inspiration Dinner the night before
the Carlsbad Half Marathon last January.



Carmel did the Tinkerbell Half-Marathon at Disneyland the
weekend before, so she came out to show her support for those of us
who did Carlsbad.  Here I am running into her on the course.



Luv this girl!

So down to Carmel's salon I went.



OVERDUE for a haircut!

 

Step 1:  Contain it all.



Step 2:  SNIP!



15" later and I feel 10 pounds lighter!

 

THANK YOU, Carmel! XOXO

 

I must say, though, it is a little disconcerting to drive along
with your ponytail in the passenger seat next to you!

Tucked into a padded envelope, I mailed the pony off to Pantene's Beautiful Lengths program.  So far, they've received over 400,000 ponytails and have donated over 24,000 real hair wigs to the American Cancer Society's wig banks, which distributes wigs to cancer patients all over the country.  RIGHT ON!

Bye-bye 15"! See you again in two and a half years! 

Catch-Up Time: July 19 Oncology Visit

NOT at all what I was expecting to hear.

Since I was continuing to feel great and still had no symptoms, I anticipated another round of watch-and-wait from Dr. Hampshire.



Oncology wardrobe FAIL:  I'm wearing the same
shirt I wore to my appointment in January.  Geez. 

Wrong.

Seems that one of my iliac lymph nodes had ballooned to the size of a golf ball.  That in itself would have been a worry, but its location is what concerned Dr. Hampshire:  it lies adjacent to my left iliac artery, which could cause a blood clot in my left leg, or left kidney renal problems.

 

My naughty lymph node.

Time for a journey to Rituxanville.

Back in the May 25, 2015 blog entry, I had mentioned doing some research on Rituximab (aka Rituxan), a monoclonal antibody that works with the body's immune system to fight stinky-ass cancer cells.  When Dr. Hampshire advised starting a course of Rituxan, I was relieved that it was something I was familiar with, but immediately wanted to postpone it until October.  Um, WHY???  Because, as a Federal government employee who works with budget, August and September are crucial fiscal year-end closing months for me.  He said that would be fine, but we wouldn't want to delay it any longer than that.  

Great!  Temporarily dodged a bullet!

Wrong again!

Annoying little phrases like "blood clot" and "renal problems" began their relentless swirl around in my brain until I finally snapped out of it and said, "What am I thinking???!!!  Let's get this done NOW!!!"

So, rather than starting in October, we set August 2 as my start date.

A course of Rituxan is given once a week for four weeks; we established Fridays as my infusion days, to allow for recovery over the weekends so I could be back to work on Mondays.  Rituxan is administered through IV over several hours per session, so for four Fridays in August, I'll be planting my butt in a recliner and enjoying my new favorite cocktail.

And what do I think about that misbehaving iliac lymph node?

  

  

Catch-Up Time: July Scan

July marked six months since my last CT scan and oncology visit, so it was time to make the rounds again.



Boy, she looks tired!  Early morning CT scans
are just, well, too early!



Into the donut hole she goes.

Scans are probably the easiest part of this whole cancer thing; even the IV for the contrast dye isn't bad at all. 

The worst part, however, is the "scanxiety" that rears its ugly head in the days prior to the actual scan, and then the wait time between the scan and the oncology appointment.  It's illogical and a waste of brain power, but is very real:  you can't help but worry about what the scan will reveal.

Catch-Up Time: Alaska!

Wow - yes, it's really been over two months since this blog was updated!  

During that time, I had an amazing trip of a lifetime to Alaska in June with my daughter Amanda and three other wonderful women, to cheer Amanda on in the Mayor's Marathon in Anchorage! 



She did it!  26.2 miles of Alaska beauty!
SO proud of my beautiful Baby Gazelle!

While Amanda raced in her first marathon, I power-walked the concurrent 4-Miler race and enjoyed some beautiful Anchorage scenery as well.

 

It was so much fun to be part of the race!
But the best part was being at the finish line to see
Amanda cross!

The day after the race, it was time for our vanful of five fabulous females to hit the road for some serious vacay!




Denali National Park.  It's hard to make out in this photo,
but Mt. McKinley is looming large in the background amongst the clouds!



Portage Glacier.

What a wonderful thing, to be in the midst of such awe-inspiring Alaskan grandeur, surrounded by a circle of loving, supportive women.  I've said it before:  there's an incredible power in a circle of women, a dynamism that  strengthens, encourages, emboldens, and inspires.

Alaska itself exudes an undefinable force, too.  If you've read some of my older blog posts, you know I'm a desert gal:  give me those magnificent wide open spaces, immense sky, and wild beauty and I'm a happy camper.  I've never felt that affinity anywhere except while in the desert.

Until Alaska.

Walking along the Savage River trail in Denali National Park, I was struck by that same connection to place:  the huge open spaces were there, that enormous sky was above, and the desolate, primal beauty was comforting and familiar, even though I'd never been to that part of Alaska before.

In that moment, in the company of four strong women, it was easy to allow myself to absorb the energy and strength that they and Alaska were gifting me with.

Turns out I'd need it in the near future.

May 24, 2012

Look what followed me home last weekend!

"Lil' Chick" is a 1964 Thunderbolt and only 8' long.  I had been looking for a vintage project trailer and fell in love with this tiny thing the moment I saw her.  She'll need a lot of work before she's camp-able, but health-wise I'm continuing to feel fabulous so why not?!?  I still have my little A-frame pop-up, "Stella," that I'll continue to camp in while "Lil' Chick" is getting her makeover.

I've started a blog about her.  Check it out:

www.1964thunderbolt.blogspot.com