Passing through the Door

It's Saturday, 11:30 am. This is about the time when Aunt Vonnie and I have our weekly cancer club meeting...but this morning (as she referred to it) she passed through the door. In October Uncle Dick, her one year to the day birth twin, passed through the door thanks to colon cancer. She was diagnosed with the same within days of his moving on. We started our Saturday ritual after that, only to find out in January that I would move from club mascot to member. Thanks to Dick and Vonnie I scheduled my colonoscopy, got diagnosed and got treated. When I reminded Vonnie of her role in my adventure and helping save my life she said she liked to tell people that she GAVE me cancer. Oh the stories we would tell each other - including a frequent "F you cancer" as our club motto. It did our hearts good to say it. Vonnie told me months ago that she always had the image of people on the other side of the door wearing shiny fabric clothes and she was not into that at all. She hoped to be wearing her black turtleneck because she looked really good in it - I have no doubt that's what she is sporting. I asked Vonnie to keep talking to me after she went through the door and she said I would have to be VERY QUIET and listen - unless I was on the edge of a precipise (in which case she said she would tell me to JUMP). So while all of us were getting our phone calls and emails that she had graduated from the cancer club those on the other side were getting the word out that "she's HERE" - Grandpa and Grandma, Uncle Dick, Uncle Bob, Uncle Marion, Aunt Elsie, Josie. Party hearty in another land. Last time we spoke - on her birthday almost two weeks ago, she told me the story about the star. She also told me that when her son Christian, the sweetest child (now man) you will ever meet, was little she asked him when she was old and sick if he would take care of her. He waited to answer - too long for Vonnie's taste - and then he told her "I think you will have to talk to Jesus about that." So she said she cut off his rations right there and then. Of course in the end he WAS there, along with Cindy, Ben, Chauntelle, Shannon, Tricia, and Paris. Uncle Gene stayed the course and they celebrated 50 years together on Tuesday. A gentler kinder person you will never meet. The ying to Vonnie's yang in so many ways. On Tuesday I had the clearest image of Vonnie in her healthiest happiest state come to me as bright as the sun. By Wednesday the image was a memory and when I called Gene later that day she had gone in to a comma. The only other time such a thing has happened to me is when my friend John went into a coma just before he passed through the door so I knew what that was about. Vonnie and I ended our last call with me saying I would call next Saturday and she said we'll take it a week at a time. Ironically, Vonnie signed off the morning after my last chemo session. Or maybe not so ironically. Thanks Vu - love you.
Yours Vonnie (as always) until next week,
Mary

Twinkle twinkle...

Aunt Vu told me the greatest story last week.  She said that when my cousin Suzie was little she brought home a a drawing from school with the basic kid stuff on it - house, tree, etc. - with one exception, it had a star in the sky.  When her mom, Aunt Eunie, asked what the star was for she said "that was the star that was in the sky when I was born."  Aunt Vu says all of us Johnsons think that there is a star in the sky when we are born.  I had to agree, I'm absolutely sure there was a star in the sky when I was born.  So, I'm completely with you Suz. That star has seen me through alot of scrapes, including this latest adventure.  I mean if you're going to get cancer then why not get the most treatable one.  Genius's medical school friend reminded me of that last night and she's right on the button.  But listen, it doesn't hurt that I have that star a shining a way...and speaking of stardom...the Chief Inspector brought me a rhubarb pie yesterday that was so divine and I could feel that shine-iness all day.  And Reba, my prof from grad school and lifelong friend, called and left the most ridiculous joke you ever heard that added to the rays already around me ("I don't want to brag or anything but I can still fit in the earrings I wore in High School"). And if that wasn't enough I just had my LAST prednisone prescription filled to launch FOR THE LAST TIME on Thursday.  I woke up with a jolt this morning and wasn't sure what day it was and then realized that I have two more prednisone-free days ahead of me...whew...Must be that star again.  Seriously though, isn't everyone born with a star in the sky for them?  You are - so figure it out.  Why not embellish the story about your star and put it to good use.  Your star might be a late bloomer but it's out there.  Mine's always at work a twinklin away - and they don't call me Mary Sunshine (which would be the BIG sister star to my personal star) for nothin.
Yours in the Light of the Silvery Moon (the one right next to my star),
Mary

The Wonderful Wacky World of Tirednessssssss...

If tired were food I'd be a Chuckorama buffet
If tired were a party I'd be the World's Fair
If tired were a word (hey, what a minute) I'd be supercalafragalisticexpealadosious
If tired were McDonalds I'd be super sized
If tired were a pair of pants I'd be xxxlarge
If tired were people I'd be CHINA (name the movie friends)

Gotta go - can't be late to my afternoon nap...

Books I will NEVER Write

"Chemo-robics: High Stepping Your Way to Cancer Freedom"

"Build Your Memory Through Chemotherapy:  Remember Who You Are"

"Loving Lymphoma: Relationship Tips for Building a Long Term Partnership With a Lunatic Resident"

"Chemo Dinners in 30 minutes:  Recipes that complement Copper, Tin and Metallic Undertones"

"Fatigue Wars: Finding Sleep in a Galaxy Far, Far Away"

"Shake, Rattle and Roll:  Me, Elvis and My Chemo Side Effects"

"Truth in Hair:  Losing it Graciously, Growing it Gradually"

"My Big Fat Swollen Belly:  Raising Baby Lym Phoma in a Turbulent World"

"Solitary Journey to Cancer Free Living:  Walking Upright on Your Own, No Handrails Involved"

"The Complete Dictionary of Chemotherapy:  From Absolutely Green to Zombie Persona"

Plum TARD!

Following the Pink Heals event I followed my traditional chemo routine pattern of being PLUM TARD...it's hard to believe that a person can sleep as much as I did this weekend and still be tired...but I sure am.  Slept for three hours the afternoon of Pink Heals, ate dinner, slept all night, had nap number one by 10 am...and so went the day. Lisa figured it out.  She said it's like Hobbit meals (first breakfast, second breakfast, tea, first lunch, etc.) except for sleeping.  By Saturday dinner time I had napped 7 hours and was ready to go to bed for the night (following a post dinner short snooze.)  My friend John had told me when he was going through chemo that there is no tired like chemo tired.  I murmured words of support and nodded my head even though I was on the phone with him.  I had NO idea what that meant until now.  Reminds me of the Extreme Makeover weight show I just watched where the family members strapped on weights and walked around the track to experience how their daughter/sister felt walking around with the 369 lbs she weighed.  You just don't really know what it's like unless you actually do it yourself.  Sorry John - I totally get it now.  He's in cancer free heaven nodding his head and telling me it's OK, go lay down.  Annie tried to cheer me up and fill with positive thoughts but I would have none of it - too tired to embrace it.  That'll teach her for calling and trying to get me through the worst of it (hey...wait a minute...)  As with all things chemo eventually it will pass. Cherish the waking moments is all I gotta say.  Vonnie and I commiserated about being so tired that we leave trails of stuff in our wake (maybe when I'm less tired I'll pick that up...maybe.)

Yours in the zzzzzzzz....and I ain't talking Zumba,

Mary

My Tribe

Today was the Pink Heals event...which was truly amazing. As exhausted as I felt the adrenaline was pumping when I saw everything going on this morning. The beautiful B, Travis ,his wife Melissa and their darling little girl Harper, and Paul's sweet daughter Elise(8 years old and who I have fallen in love with instantly) all donated their hair for cancer patients. I gave them all a kiss and in my heart wished forever goodness on their lives. After the dispensing of my grandma style kissing Susan F. showed up and handed over a 14 inch hank of curly locks like she'd walked off the Tangled set just minutes ago. And Jess - my darling friend Jess - led a Zumba dance with a motley crew of Firefighters, and police officers, and assorted other good sports. You bet I danced too. A complete Zumba dream come true. And there, admist the pancake eating and fire truck signing and the tail shaking and the hair shearing something really super big happened. It first happened when the Fire Chief and I hugged each other tight (he just had surgery for cancer in his colon and I should note we are now sporting twin hair dos) and when Cray's Mom Elaine (47 year cancer surivor) and I held hands while our picture was taken. It happened when I circled up with Frank and Maja (my boss and his spouse who took cancer on at the same time) and when I caught Joel's eye at the event (a recent cancer grad). And Mike from the Police Department who just overcame Hodgkin's Lymphoma - it happened when we couldn't stop talking to each other in terms like, go, fight, win and how it has changed the whole course of his life's mission. I realized that I was part of a tribe - a big beautiful tough courageous tribe. My dear heart friend John, who passed away from non-Hodgkins lymphoma in 2005, use to tell me how nice it was when you recognized someone from your tribe - like there you are! Where you been? This cancer tribe exudes love and good wishes and kindness in ways you can't imagine - even when you have never spoken a single word to each other. It's like there is this alternative universe that I didn't even have a clue existed. To the tribe everywhere I would like to thank you for welcoming me with open arms. When I first got diagnosed, Susan M. from work (a two time cancer champion and bone marrow transplant winner) sought me out and filled me with good stories, enthusiasm, and cheer. I didn't realize then that she was the Welcome Wagon Committee Chair for the tribe. But I'm so much smarter now. Maybe I'll be assigned as the Door Greeter for the tribe. I'm ready. And if this tribe is in to tattoos mine would read "forever yours" and I would be proud to wear it knowing the getting is far more than I can ever give back.

Got You a Riddle

What's white and gray and fuzzy all over...?
Not sure if it's real "hair" but there's snow on that mountain,
More down coating than anything...lil bit different...kinda Grandpa DeLaMare style.
Robyn inspected it (in fact, it's high time I named her the Chief Inspector) and Jen confirmed it.
It's addictive...can't keep my hands off the stuff.

This is the Best Story Ever...

Last Friday Robyn and I crossed paths with the lovely Lehua while walking across Library square.  She had her little boys - two darling bright eyed wonders.  They greeted me"HI MARY" in there baby bird voices.  Who doesn't love THAT...today Lehua told me the rest of the story though.  She said that Micah asked (after I went on my way)"Is that the Mary that had the baby Jesus?"


Nope, but I hope to be a close friend.

Chitter Chatter As I Wind Down From....PREDNISONE...

Genius viewed the video of me for the Pink Heals Tour and declared that I look better now!  The video was shot days before my hair fell out following a week and a half after the first chemo in January.  Truth be told, the scarf she had wrapped around my head that day was holding a good portion of my hair on my head and reminding me to not touch it so that it would stay another day before I went home and the Chief Researcher had to shave it off.  I suspect that the chemo flush and the prednisone bloat may be the basis for my "healthy glow".  Looks are deceptive trust me on that.  The prednisone this chemo round was no disappointment.  It's ugly head reared again in the form of a rant about Genius needing to get her apartment packed NOW.  Funny, half the stuff in her place is mine...or not so funny if you ask Genius.  As a means of comforting myself I transported enough stuff to live the rest of my life in complete comfort at Genius's small place.  A lovely little pack rat's nest surrounding by bits and pieces of everything I might ever need - I mean EVER.   Good golly, wish I could toss handfuls of this stuff out the window when it heads south on I15 back home again.  Since that would include a fair amount of underwear I don't suppose it's appropiate...but hey who knows.  Had a lovely conversation with my friend M. who unwittingly filled my head with wisdom that fit me to a "'T" just from her own life experience...isn't that a treat.  Things like "relish life" and "you've filled you're kids with goodness and now you need to sit  back and just be there for them."  Good post chemo coaching.  Am still trying to absorb the good news from the scan which chemo 7 seems to have taken the shine off of - although the delight of my friends and family continues to fill my cup to overflowing.  In a strange way it is a bit disconcerting to be leaving chemo soon as I know that there will no longer be evidence that the lymphoma is being addressed.  Apparently the critters will never be completely gone due to my stage 4 (make that FORMER stage 4) status so there will have to be a vigilant lookout for outlaws and ner-do-wells...but I've seen worse out the door. A lot worse. Last prednisone for this round devoured and gone.  Looking forward to having sleep reinstate itself in my life.  Chit Chat How About That!!  Lovey dovey to everyone dropping in ...am still the luckiest person ever.

Cancer Awareness Partee— June 10th!

Check out Pink Heals SLC for details! Look for moi via video requesting you either get your cancer screening or shave your head!!!!

Feel Like Ms. America of the Lymphoma Universe

Just before chemo Dr. Chemistry told me my scan showed that the lymphoma is almost GONE! I told her she will miss me. Still one more chemo after this one...but then its off to remission mode (drugs and scans for the next two years.) At the chemo bar I was sandwiched between two people who had reoccurrence of cancers or side effects during remission. Reality yes, but for another day. Feel like the freakin Ms. America of the Lymphoma Universe!! To the many, many family and friends who are with me on this journey (and will stay the course with me) I leave you with this little bit my Grandpa wrote me in 1975 at the end of a letter:

"Bushels, tons, mountains,oceans,whole worlds of love and good wishes to you."

Love is the conduit for carrying out the work of these drugs. This much I know.

O-me-hc!

For weeks now I've been whining that I don't want to go to chemo...mind you NOT that I can't do chemo, but I don't want to go...(can't you just hear the shrill of the whine).  To cap off the whining I tried my best to torture both Robyn and Brent at work today on my last day of freedom (prednisone rears it's ugly head tomorrow.)  Robyn even threaten to show me "something worse than cancer missy..." if I didn't settle down.  Isn't she the best?  So since I can't settle down and get to sleep I thought I'd post some alternative ways of thinking of the dreaded chemo:
1.  O-me-hc!  A phrase related to "oh my heck" but a little twisted...the backassward spelling of my friend chemo...the new Utah swearing phrase for the young urban professional.
2.  Chemo - the dark sided twin of Elmo.  Not furry, not adorable, not vaguely cute - but somehow does turn you in to a puppet.  Gives new meaning to PBS (Pretty Bald Situation).
3.  Chemo, chemo, bo bemo, banana fanana fo femo - Chemo
      Starts with a che and ends with mo
      Makes you want to puke from head to toe!
4.  Ch-ch-ch chemo, beautiful chemo, your the only ch-ch-ch chemical I adore...or...or...When the mu, mu, moon shines over the cow shed, I'll be waiting by the ch-ch-ch chemical port....
5.  Give me a "C"
     Give me a "H"
     Give me an "E-M-O"
     T-O-X-I-C Teamo!!
6. Ah...Marezy doats and doezy doats and little lambs eat ivy, a kidddle eat chemo too, wouldn't you???  If the words sound queer and funny to your ear a little bit jumbled and jivey- say mares eat oats and does eat oats and little lambs eat chemo (ok it doesn't work but you still read it didn't you??)
7.  Today's Special:  
                                  Fresh Chemo salad greens with a benedryl dressing
                                  Drug spiked pudding with carmelized metallic tasting substances
                                  Aleve chasers provided free of charge
                               
8.  Newspaper Headline:
     Ms. Lym Phoma Rudely Interrupted by Chemo Cocktail:
                   Huntsman Cancer Center Claims Hit
9.   Dear Chemo,
       Please excuse Mary from meeting with you Friday. She has to wash some hairs.
10.  Wikipedia:  What is chemoilliant?
A post chemo glow imitating the look of a blushing shade of red.  Often associated with delusions of grandour about the ability to accomplishments minor household tasks with clarity and work product with efficiency.
Used in a sentence as follows:
"Her chemoilliant presence wowed the crowd into thinking she actually knew what she was doing."