That was Then...This is Now

Lehua bugged me at work for a long time to post something in this blog...but I didn't have it in me to do it.  I was more interested in getting through each day, and not so interested in explaining what that was all about.  That was then - but this is now.  Now includes a visit today to Dr. Chemistry to talk about that sweet, sweet scan that shows no reoccurrence of the lymphoma family after finishing two year of maintenance infusions (done, done, and done in June!)  And so I would like to point out that normal should not ever be over rated.  Some folks have asked me what I will do to celebrate and here is my reply: get up each day and realize that happiness is available in every moment of every day.  That choosing how we see things, and how we experience things is the secret to life.  Not a bucket list (nice to do nice things) but finding the joy in what ever is your life.  Dr. Chemistry and I had a good chat about that today - one of the gifts of her work is that she learned this vicariously from her patients.  The fun end to the day was on the way home from my appointment I stopped at Target to pick up a prescription.  There was my favorite pharmacist - Jana.  She talked me off the ledge one day when, following a treatment, I went to get insulin for Kelley and the prescription had gotten messed up...we've been pals ever since, exchanging bits of info about our lives while she dispenses the goods.  I gave her the all clear news and she came round the counter and we hugged it out and it was a great, great moment.  Life is good, love is everywhere you look for, seize the moment, and sleep well my dears.

My Organic Aunts

My Organic Aunts have been in the fresh food business waaaaay before it was chic...I'm talking the original 1960's organic...juicing and sluicing all kinds of goodness in the food categories. You know about Aunt Vu - she tried to convince me that carob was just like chocolate when I was about 10 years old (seriously, I didn't buy it, altho now I make similar claims. I also like fruitcake so go figure.) When Vu kicked through the door and blasted off to the next space she left behind my other Organic Aunt, C., and it tore C's heart in half. Now C. is on her own to mend that tear - which had already been scarred by the loss of her brother just about 8 months before (Dick will have to have his own space in a blog - which would be his style - more on him in short order.) What C. doesn't see is that she isn't on her own to mend that bleeding heart, that there is a huge circle of love awaiting her command with band aids, and salve, and kisses for boo-boos, and cold compresses and all sorts of loving - she just needs to say the word...But for now she is working through what she needs to work through. It's complicated, of course, by all kinds of other critical life factors. I mean nothing is really simple is it? In the end it is simple though - we just have to simply let go and let things be. Then, like leaves floating down a river, things will flow as they need to be. It sounds a little like peace, love and hippie beads - but it's the truth. Rest easy C., we really, really are ready when you are.

Dear Aunt WWW...and you know who you ARE!

September 13 already.  Unbelieveable.  Life goes on in the most lovely way...still living in the bliss of post treatment life.  And bliss it is - cause life is precious and everyone aught to know it.  Hardly a day goes by without someone telling me a fantastic story - of both the miraculous and the sorrowful.  Heart transplants (20 years out), loosing a loved one after a valient battle - I could go on and on.  And now I know that when you are a cancer survivor that you become a beacon of hope for every life that was lost to the "c" situation...am looking forward to getting my three months out button in a couple weeks.  Last treatment was on June 24th so I'll count that as my celebration date.  Every day, in every way, feels different and fresh and simply the best.  Even the most imperfect things seem to be, well perfect.  So, to Aunt WWW(which is NOT what I would name you) there is goodness after the bad, there is light after the dark, there is going to be lovely coming your way - JUST HANG ON...all you have to do is HANG ON...things will change, you will change, and life will be different.  Love you till then as much as I love you now.

Dear Timmy...

Dear Timmy,
I will never get a chance to meet you but I found out that you're in the "C" Club with me - and that you've been fighting hard to kick the door shut as much as you can for as long as you can. That fight for life is so powerful that I could feel it when your sister K. told me about it and the shear force of it washed over me like an ocean wave. It's impossible to not be awed by what you are doing. Thank you for letting everyone know that every minute of our lives are worth kicking and scratching and biting for...that every part of this journey is sweet, even when it's hard and painful and difficult - because it is ours to live. I can only honor you by being grateful for each breath I take and each moment I am given. K. says you are a chef and that you have fed your big extended family loads of beautiful food. Thanks for feeding my soul to it's very core. You can't get a better meal than that.
Love you,
Mary

Dear Penny...

Dear Penny,
I have never met you but your sister has been a dear to me and she told me a little bit about your circumstances. I understand that you've been served some extra helpings of reality on your plate of life. I met your sister Deb while visiting my dentist. When she learned of my diagnosis she did things like write sweet notes on my bill, sent me a card and was always so lovely on the phone. She was (is) amazing...and then I found out that she knows what it means to go through treatment because she has been by your side. The only thing I could think to do in response to her outpouring of love was to let you know that I'd like to have your back too - that we don't have to have ever met for me to think of you and wish you the very best and to have lots and lots of hope for you everyday. So I'm sending it your way with all the best positive energy that I can. And trust me, I'm so full of cheerfulness right know that my office has to be warned how high I am on the sunshine meter every day so that they can duck and cover when necessary. So as you continue to take big bites out of that realty pie you've got in front of you please know that I'm on your side.
Love you,
Mary

Mary Sunshine Rules!!

Allyce is kicking my trash for not posting a blog - but seriously this "life as usual" is a busy, busy schedule to keep. I am obnoxiously happy every day - Orion says it's that new lease on life that I just signed. He got his when a car nearly knocked him through the door while riding his bike so he knows the deal. A fellow I was sitting by on the bus the other day asked,"did you do that on purpose to your hair or did something happen to you?". It was one of those I-had-it-on-my-mind-and-blurted-it comments. You can certainly say I did it on purpose AND something happened to me. So now while nothing is happening to me I'm digging every day, every meal, every encounter. Mary Sunshine Rules! More normal later - gotta have a regular plain ole glorious night of sleep.

Thank you, thank you, no really thank you to all the people everywhere...

My acceptance speech:

Thank you to all the peeps in American Fork for giving me the honor and distinction of being edgy, liberal and artsy in my new "do"...I don't know what to say, really, but I know how to grow it right.  I appreciate all the second looks everywhere...I know you're wondering where it all comes from.  It's not easy to look like a rock star everyday.  Someone has to do it - it might as well be me.

Thank you also to the folkie folks in Salt Lake City who recognize me and my faux hawk as one of the crowd, the in crowd, the crowd who knows their "tats" (that's ink to some of you) and longs for ear gauges.  I love your acceptance, your love, peace and hippie beads.  See you at the Gallery Stroll, the People's Market, the Twilight Concert.  I'm there for you.

Thank you all for the People's Choice Award- as the one to watch, the one to know.  All I want is world peace and some really, really cute shoes. MUWAH!!!! 

Ding, Dong!!

Ding, dong the blog ain't dead - Which old blog? The cancer blog...ding dong the blog ain't dead oh no! Wake up sleepy head - rub your eyes get out of bed...the cancer blog ain't dead! Ding dong the merry oh - sing it high sing it low - THE CANCER BLOG AIN'T DEAD...

August is well under way and nary a word from moi. Well I'm singing now and got my dancing shoes on. Hang onto your hats...more coming this way soon!

Graceland

While I was nursing my lymphoma community our lovable lab Gracie was growing her own tumor in the underarm of her front leg. A week and a half ago it was the size of a baseball...my friend c. gave advise on the go-to vet but he was booked a month out. Lo and beheld Dr. Gooddog called us directly after I left a message and arranged to see Gracie straight away. Long story short, after he spent sometime with Graceland on the floor of his office he offered to do surgery two days later. We picked Gracie up from her adventure on the way home from me receiving my remission permission slip from Dr. Chemistry. I was bubbling with joy and told the office folks at the Vet hospital my news...they said it gave them the chills and one offered to throw fake confetti for me. How can you not love a place that has signs on the wall that read "If you had a tail you'd wag it too" and "Acquiring a pet may be the only opportunity a human has to choose a relative." From the minute we saw Gracie post-surgery she was happy! The doc said the tumor was bigger, deeper and elongated inside her (I could just hear G's truck going whooshing by her). G has made a remarkable recovery despite her 10 inches or so of incisions...doing things she hasn't done for many months. Just now she and I hightailed it up to the park without a single hitch - neither of us feeling a single pain, our tongues hanging out and the gentle breeze in our fur (hers mostly brown, mine mostly white.). People ask me how I'm celebrating and if that ain't a party then I don't know what is.
Graceland - it's a state of being that can't be matched. Sandman summed it up so nicely with this Facebook posting:
Mom being officially in remission after 6 months of chemo plus beloved pet regaining mobility by having a giant tumor removed equals great way to say "F!!K YOU CANCER"

Couldn't have said it better myself.

Secret Agent

When Dr. Chemistry first declared "go" on the race for my cure, I had the perfect visualization to take me there. It popped in my head right off the bat - the Fly Lady! My friend Lovely introduced me to her a few years back. With wings and a wand she knows how to clean house in a jiffy. She lives by the "fifteen minutes a day" adage for bringing all sorts of cleaning chaos into a place of serenity and order. I imagined her hauling her bubble gum pink vacuum to my colon to plug in and get to work. Her first visit caught her by surprise - her cheeks went red and her head started to spin (there was ALOT of cleaning to do) but she got her composure back and said fifteen minutes a day would get 'er done. Everytime I had chemo I could imagine a big layer of ash all over the place - which was a delight to the Fly Lady! She would set to work, whistling and singing her way through the muck. When her vacuum bags got full she would look around, check to see if anyone was watching, and then chuck them down the sewer. Whenever I drank the white barium for a scan she would clap her hands with glee and declare "Fresh Paint"!! I liked listening to her work like a little elf in the garden picking and plucking the bad and leaving only the good stuff.

Last week I googled the "Fly Lady" to learn more about this merry little maid. Marla Cilley, the real life fly lady started out with that name because she was into fly fishing but it evolved into "finally loving yourself". Doesn't that make perfect sense. And the Fly Lady has three rules she lives by:
1. Don't sweat the small stuff- what doesn't matter, doesn't matter.
2. Laugh every day - even if it is at yourself.
3. Love like there is no tomorrow.

I knew the Fly Lady was the one for me - her rules are as right as rain in my book. Thanks for being there little winged wonder. You did me proud.

I'm Not the Same Person

Knowing myself the way I know myself I knew that sometime after the worst of the cancer "situation" was under control that I would begin to embrace in retrospect what had just happened to me. This has been happening over the last week or so since becoming officially "remitted" (which is what my friend from the bus, Britches, refers to it as.) Waves of emotion, at the oddest times, come over me as glimpses of my recent adventure come to mind. It feels like I was driving on the freeway in the middle of the night with a double trailed semi truck headed right at me, and by the grace of goodness, good chemistry, love and friendship I somehow had the presence of mind to swerve at just the right time to avoid the truck, all other cars, and drove smoothly off the closest exit. I can still hear the whoosh of cancer rushing by me like that truck in the blackness. I can't help but feel the bigness of what came with that kind of encounter. The Chief Researcher reminds me, in a kind but clear way, that the Lymphoma will be back - because that is what this little envader does, it returns again and again. Only, this next time it won't be in the night, and next time it won't take me by surprise like a deer in the headlights, and next time I will know in advance that there are ways to get off the road! I'm not the same person that I was back in January, and that's a big something that this adventure has been about.

Dr. Chemistry

January 24th 2011, my first appointment with the oncologist. Within the first couple minutes of the visit the doctor informed me that in my PET scan I had lit up the boards, had probably had cancer at least 3 years or more likely 5 or more years, and that we would need to test the bone marrow to see if I was stage 4. I held up my "mother finger" - the one that means I'm not fooling around here - and told her to hold on a darn minute...I said that I needed to interview her before we continued. She was a little taken back but compliant. I proceeded with the interview. I have to admit it was not my best effort. Nonetheless, she passed. She then told me that we would do the bone marrow sample right then. RIGHT THEN??? I felt like I'd been tricked - and thank heavens because who would voluntarily do that to themselves?? She was very clear that she was very, very good at this task. Laying face down on the exam table, rear end in the breeze, she started preparing to extract some bone marrow and a sample of bone. Hold the phone I said - and stopped her in her tracks. I asked her if my butt was cute...she said "yes" so I said let's do it. My Mom thought I was being funny, but no I wasn't. I mean the woman has seen a lot of asses in her day and I had been working out hard core for two years and I wanted a professional opinion. That kind of opportunity just doesn't present itself often. And, yes, the woman does perform a "mean" (meaning in a good way) bone marrow sample. When we were done I told her I thought she and I had good chemistry and we could work together. She agreed. So I officially put Dr. Chemistry on my team. When I described Dr. C. to my friends I told them she was very to the point, liked things to be done right, and wore a cute cardigan and great shoes. There is a lot to be said about a woman who wears just the right kind of stylish shoes - like the "yes I can wear them all day shoes and still look good" kind of footwear. And while Dr. Chemistry doesn't mess around with the facts, she knows when to show the kindness (not the slobbery oh dear kind of stuff.) During my first chemo session she came over and knelt by my chair and told me that the cancer was indeed in my bone marrow (with just the right gentle touch to my knee.) Didn't phase me because I was drunk on benedryl and told her about 10 times that I liked her. You can always hear Dr. Chemistry coming due to the clippity clop of these good looking shoes. Even when I was stoned on chemo I knew when she was around due to her own self fabricated syncopation. When she first delivered the news about the stinkin lymphoma I was so PISSED that it made me cry, and I was mad, mad, mad. She rode the tide of my anger till I was ready to get the news that my port would be put in three days from then,and chemo would start the following day. The two of us, we're not the type of women that fool around getting stuff done. I was up for the gig 110% and told her I aimed to be the model cancer patient. Last Wednesday when she told me my scan was almost clear she delivered it in her same get down to it style. I teared up when she spoke of my "remission" and she looked surprised - it was my first time with the "r" word and I held it dear. Dr. C. and I plan to be together for the next few years at a minimum. AND, as I reminded her, I have been the model cancer patient to date and I plan to continue. She agreed that I was indeed the MCP, because the facts are the facts. So here's to me and Dr, Chemistry - to a long, long remission filled future. Gotta retain my position as top of the cancer patient pile. I can really be an overachiever when I put my mind to it - kinda like that Dr. Chemistry (which is just what you want in an oncologist.)

We Interrupt This Program to Bring You a Message from the Emergency Broadcast System...

...MARY ELAINE JOHNSON DELAMARE-SCHAEFER IS OFFICIALLY IN REMISSION...I REPEAT MEJDLMS IS OFFICIALLY IN REMISSION...
CUE THE FIREWORKS
STRIKE UP THE BAND
HAPPY DAYS ARE HERE AGAIN CHOIR BEGIN

YUMMY TREATS FOR EVERYONE...WILL BE CELEBRATING EVERY MINUTE OF EVERY DAY...JOIN ON IN TODAY!

Zen and the Art of Cancer Maintenance

This morning while getting prepped for my CT/PET scan I had the strongest urge to graffitti the walls in my private little waiting chamber- to carve my initials into the side of the cupboard or to stick some gum under the "recliner" with a note that included my phone number. Before the scan you have to sit in a rather stiff chair that leans partly back and be very still while you drink the white barium concoction. The stillness is to slow down your metabolism (the Chief Reseracher informed me of this) so that your don't have "blurs" on the scan, and the barium cocktail is for contrast in your gut. I've grown fond of the nasty white drink - preferring the berry flavor over the pina colada. It's kinda like perfuming a plate of fish - I mean who are they kidding. Back to my destructive notions. I wished to leave a message for those that followed me, or to read one from those that came before me. The tribe really could liven up the place given a few spray cans and a kitchen knife. The PET scan machine freaks me out a little bit. I kept my eyes closed so that I wouldn't know how long I was enclosed in the "tunnel" part of the machine (which by the way, sounds vaguely like a cross between a computer printer and a dishwasher.) Afterwards, when I checked out the machine I mocked the scaredy cat part of myself for feeling claustrophobic (really, I told myself, it's not that small of a tunnel). If I had it to do again though I'd still keep my eyes closed during the procedure. I do like how they tuck you into a scooped out half cylinder and velcro you into position, head cradled in a foam form, like a cozy cancer papoose. Another skill I learned during chemo (yep, add it to the list) was how to zone out and semi-snooze through just about anything. Not only did this help today (45 minutes in the exam room with the white stuff being quiet, and 25 minutes of utter stillness in the PET tube being moved back and forth) but Friday during my root canal I fell asleep during part of the two hour pound-a-thon happening in my mouth. Dr. Root-Canal thought it was his mouthy skills but I knew better. When finding my way out of the Huntsman Center maze to my darling Canoe (who got me to the Center by 6:15 am and saw me safely to my appointed spot)I got a few semi-terriorized looks from waiting patients who had full heads of normal hair and no signs of treatments. It ain't all bad I wanted to tell them, but decided they'd figure it out on their own. My Mom said she thinks the scan is gonna be good. I told her that it is what it is, and that I'll do what I need to do. It's Zen and the Art of Cancer Maintenance - which is loads more zenny then the hair maintenance I experienced in February. My I've grown up nicely into a lovely career cancer patient. Awwww...

My side of a phone call with C.F.s (cancer friends)

Hey, great to hear from you,
Uh, huh...
No, you are not a bad friend, I don't have bad friends!
No, I mean it, I felt your good vibes.
No, I did not style it into a faux hawk- that's how my cowlick is growing in..
Uh, huh...
Big scan early Monday morning...
Uh, huh...
Sure, sure I'll let you know...will meet with Dr. chemistry on Wednesday afternoon...
Uh, huh...
You're kidding me...no, I won't say a Word!
Post it on my blog? Heavens no!
Well, I mean what would it be worth to not see it on the blog...
Uh, huh...sure lunch would be great (hold laugh in)
No,no that was NOT the cancer card you heard falling on the floor...
Gotta go...
Muwah - love you, mean it!
(Click- cause I don't know the sound a cell phone makes when you hang up.)

Oh for Crying Out Loud You've Got to be Kidding!!

A couple of days ago my tooth started going south on me...way past the border.  I tried talking to it and encouraged it to be calm and serene but it was already offended.  It decided that 6 months of chemo was not right and it decided to leave town so I'm scheduled for a root canal on Friday morning.  Am taking every bit of Ibprofen that I dare as often as I can get away with.  Of course, the root canal is in lieu of having chemo on Friday.  Root canal or chemo?  Choosey people choose root canal.  Now there's context.  Apparently this adventure ain't over yet.  They say it ain't over till the fat lady sings - am hoping for some warbles to sound out soon.

It started with Toothpaste

On Sunday I decided to venture into the "after chemo" world of normalcy.  I used regular toothpaste.  Wow - way to step out huh?  Dry mouth and throat sores from chemo dictate a special toothpaste...the regular stuff feels like sandpaper.  A bold move but it had to be done.  Today I did 20 minutes of low impact aerobics.  Feel like I ran a marathon - maybe two.  I use to do 2 hours of cardio every Saturday.  Gonna be a long road back but I'm game for it.  We'll see if I can get out of bed tomorrow...

Chief Inspector EXPOSED

Every week throughout this adventure there has been a green vase (the perfect color of spring green) on my desk - it has held an assortment of flowers in it's green belly in and out of every day.  It reminded me that something special was happening in my world, it reminded me that something good was happening in my world, it reminded me - with out doubt - that I was cared for.  The Chief Inspector was the culprit for this deed.  Today I marched the good luck vase to her desk, filled with some goodies from my yard, as a part of it's retirement ceremony.  There aren't enough good words in the world to express what all she has done for me, the flowers being only part of the package she has provided.  You are the best Chief.  You think that I've been tough, but I think that I've been grounded through your constant friendship.

P.S.  And thanks for having cancer with me - and you know what I mean.  

Working My Way to a New Normal...

This morning I sat on our back porch with the poochies while eating my breakfast toast.  I stayed over an extra night at home - and am so anxious to be able to move home during the week (but still too tired to do the commute.)  The weekend was tough - not as bad as the worst, but not as good as the best.  My Mom always hopes that the side effects will miraculously end sooner and I lecture about how they never have - but secretly I wish for the same.  In other words, the weekend was what I could expect from experience.  AND this week, as per my experience so far should be better than last.  But all in all, I continue to be surprised at the toll this adventure has had on my over all being.  Good thing I know how to work hard and get strong again - I'm dogged that way.  Been there, done that.  Being in good shape got me this far down the road and I can do it again.  Back to the toast and the canine cuties this am.  I like looking at the flowers that have wandered all over my yard.  I put them one place, but they find their way to another place where they feel most comfortable.  When Giselle lived across the street from me her Lamb's ear waltzed over to my yard all by their lonesome.  It's a great inside joke of Mother Nature.  So, now's my turn.  I'll wander around till I find my place that I belong now.  May need a season to get acclimatized and roots settled but I plan to get there.  Yep, I'm working my way to a new normal.   That'll do for now.

Over the Rainbow

About seven years ago I turned to knitting - honestly I wanted the excuse to buy yarn because I love the colors and textures.  In my usual mild manner I ended up in a scarf knitting frenzy producing over 100 scarves...I know, I know, a bit compulsive.  Tiny bit.  Knitting brought me to the local yarn store in Provo.  Whenever I would spend too much money on yarn the employees there would remind me that "it's cheaper than therapy."  They had a good point.  It was there that I met Iris.  She wore her hair (as she describe it) "chemo" style, earrings up and down each ear, and rings on almost every finger.  She was short and tough and tan.  A cancer survivor that ran triathelons, marathons, and biked...she got down to business.  She told me that she was the first female diesel mechanic in the Army.  After she passed through the door I also found out that she was one of six women that had run marathons on every continent in the world after being diagnosed with breast cancer.  I introduced her to a friend who was visiting the shop who was going through cancer treatments.  She ran the Susan Koman route in my friend's honor.  In 2007 I started working for Salt Lake City and no longer could frequent my favorite yarn haunt.  I did make a few short visits - enough time to find out that the mighty Iris was facing the cancer dragon again.  She passed through the door on Feb. 27, 2010.  Fast forward to my adventure - I wished very much that Iris was around for a chat.  I yearned for her insights and the practical pep talk that would follow.

In the meantime, here's what happened. One night I was begging for an anti-nausea pill...that was still an hour away (and that was with cheating on how much time I should wait...arghhh).  To help keep me occupied my friend c. forward a beautiful digital slideshow featuring (you guessed it) the iris.  Her message was as follows:
"...Irises offer an interesting paradox. The rhizomes are tough and drought tolerant but the blooms are incredible fragile...try to cut a bloom and get it in the house without damaging it.  Good luck.  The metaphor part is that the plant moves on after it blooms, never blooming again on that part and spreading outward from the center.  Less than 45 minutes to go."  Not long after that my friend M. arrived at my office with a large armload of - you got it - irises from her yard.  Not surprisingly, a short time later while leaving the office I noted, for the first time, little dwarf irises blooming in front of the City/County building next to where my car was parked.

AND YET - I didn't connect the dots.  Can you imagine what Iris was saying????  "CAN YOU HEAR ME NOW???"  When it finally clicked I laughed outloud...thanks for working so hard to get through my yarn loving, marathon running friend.  I got it.  I googled "irises" wondering what else my friend might have to say.

Vincent Van Gogh painted irises to "keep his illness away".  The Greek Goddess Iris acted as the link between heaven and earth - the personification of a rainbow (iris being the Greek word for rainbow) and the flower was planted on graves to guide the dead to heaven.  The meaning of iris has come to include faith, hope and wisdom.

Thank you Iris for carrying me over the rainbow.  Pot of gold I finally got it.  I'll take the message to the next cancer friend.  Love you Iris.