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.

In Love AGAIN...

Monday night I had the good fortune of an overnight visit from my cousin Angela (who holds a large berth in my heart) who was in town visiting from her home in Iowa.  Angela (the beautiful, witty, smart brain - and smart mouthed) is four months pregnant - and me with having just delivered on chemo had the same bodily complaints.  It was like we were twin cousins of different mothers. We had a lot of years of catching up but were able to compress it in to our visit in between nursing our stomachs, heads and fatigued natures.  Despite our 18 year age difference we are one in spirit and examining our lives.  Marv.  Her whole little clan joined me for lunch at my office (husband Jay, kidlets - Ben, Avery, and Daniel.)  The three little red heads captured my heart and I fell in love - I mean fell hard.  Ben - who taught me a new "looking good" routine; Avery with her "Ramona" haircut; and Daniel who readily agreed that he is, indeed "cute"(not awesome he noted, but CUTE.)When I asked Daniel if he would stay and be my little boy I believe he seriously considered the deal.  If only I was that lucky.  Angela reported that as I walked away from their car that Daniel yelled,"I love you Mary", and then burst in to song,"your butt is wide and mine is too..."

Ahhhh...love is in the air.

Resume Building

I have come to realize that I have some new skills - truly life resume builders. Please note the following:
1. Can put down 10 or more pills in one big gulp. Previously would gag on a single vitamin pill. Here's the countdown: one warfarin, 4 vitamin D's, two ginger capsules, one L-lysine, 1 zinc tablet, and an antacid or melatonin depending on the time of day. Nice. Vitamin pills I take in a liquid form - I know, kinda sissy but that's how I like em.
2. I have no fear of a big belly. The chemo/steroid bloat is astounding. I require the Chief Inspector to review it often (yes she says, Baby Phoma is showing again today, yes she says, Baby Phoma is getting smaller today, and on and on...after all she is in charge of inspections!) I don't even try to hide it - my only desire is daily comfort.
3. I snore with abandonment! Everyone snores in chemo - and I am no exception. I can hear myself snoring somewhere in the fog of chemo infusion and I don't even care. I think it's cause we're all on our backs in those Archie Bunker style recliners. On chemo #2 (before I knew better) Allyce and Jessica and I were yucking it up and the nurse told us to be quiet because people were trying to sleep. That only made us laugh more since there was only one other person in chemo at the time and she was snoring so loud we could hardly hear each other. Trust me, every chemo from then on I was part of the snoring chorus.
4. I can joke about cancer. Not every one has this privilege. It's rude, it makes people laugh nervously. I like it. The Chief Inspector says I do it so much that it makes her feel like she's getting cancer. This makes people even more nervous. It's delicious.
5. I know how to move my bowels. Okay, anyone of a certain younger age will not appreciate this skill. You will think it does not matter - but in the end you will be wrong. You will come to wish that you had this skill in time. My advice - a very large glass of warmish-hot water first thing in the morning. You'll rue the day that you didn't take note of this.
6. I forget that my hair is chemo style - seriously. I asked Dr. Chemistry if I could start riding the bus in three months if I wore gloves to ward off the germs. She said that would work if I didn't mind people looking at me - and I had to think for a minute before I realized that they are looking at my white/gray haired crew cut chemo styled head anyway. Maybe people think I'm making a political statement with my hairdo - and maybe I am. My political statement is "I just had chemo and forgot about hair."
7. I can look way better than I feel. That is why it is so important to "dress" for chemo - and have on good earrings and a great hat. You can fool people into thinking you feel better than you really do with a great outfit - then they tell you you look great and you start believing the spin and then you feel better. It's seems ridiculous, but it works.
8. I am a germ-a-phobic and proud owner of many bottles of hand sanitizer. As a result, I have not been sick once during chemo. I would note that most of our office has been well this winter too so take that you people who resist using the hand sanitizer outside our office and you KNOW who you are. My friend DJ gave me some inside tips on avoiding germs and I plan on using them from here on out. But I am creeped out by hand rails and bathroom faucets.
9. I can sleep in my office. I have a quilt that my friends from work made that is covered with lovely messages. I put it over my head while laying back in my recliner that Frank got for me and total zone out. When I wake up I'm not sure where I am at first. Then I am relieved when I realize it is still daytime and I can shake off the sleep and get back to my very important work.
10. I can get myself to go back to sleep - even when I'm up every two hours. This is big, almost as big as the move the bowels thing. Trust me you whippersnappers who doubt - your day will come. One day you too will be old enough to need to pee every few hours and you will wish you had my skills.

As you can see, I'm ready for anything. A highly skilled urban professional ready to face this limping economy with glee. You just can't find a conference or workshop that could teach you these skills. It's the training course called LIFE - sponsored by experience and endorsed by been-there-done-that.

So sad, Goodbye Bald Head

The Chief Inspector and I took a moment the other day to mourn the passing of the bald head.  It was a good head, and we will miss it.  No more smooth top, no more Uncle Fester, Mr. Clean bye-bye.  We will miss it.  We wiped our tears and knew that an era had ended.

Life will never be the same.

Take Small Steps and Drink Lots of Water

Yesterday I felt truly awful...and none of my usual tricks seemed to help.  I don't know if it is the cumulative effect of the drugs, or because I'm worn down or because it's the last chemo and I gave in to it.  Probably a little bit of everything.  I wanted to just cry and cry- but it did not provide any relief.  I am on course for hitting the low point of the chemo and the Chief Inspector asked if it was worse than other times...it was really more of the same which always seems worse in the moment.  The Chief Researcher suggested getting up and moving a bit to try to get the toxicity out of my body.  I trundled off to work to put things in motion.  The mighty Frank left on Wednesday for Sweden to join Maja and the grandbabies at their hideway on the beach and leaving me with possession of his condo across the street from the office.  Heavenly for sure - and totally saving my bacon.  Genius left for Boston on Wed. as well.  The Chief Researcher and the Fab Four  minus Genius swooped in and finished moving her stuff and cleaned her apartment without a squeak of complaint.  (You can see why they retain the title of fab.)  Perhaps yesterday also had to do with all the packing and cleaning and goings on from Wednesday as well (I say Watson, I believe that is called a CLUE.)  Lisa came up to my office to assist with the rescue in the morning and brought me lunch to boot helping me get through a good portion of the day.  I asked Orion, who is the wild man of the department climbing and ascending every ridiculous point in the state and beyond (and who runs or rides in to work everyday from a monumental distance from work) how do you get through the end of a difficult long race.  He knew the answer right off the bat.  Take small steps and drink lots of water.

Am taking small steps and drinking lots of water today.  But a lot of big steps have been taken and they should be noted:
Chemo DONE
Genius MOVED
and Vonnie has passed through the door.  I feel her right behind my shoulder smiling and nodding.

Allyce wrote me a chemo cheer last week and I liked it alot:

Rrrrrround 8 Cheer
Ready, go.
Give me an M (flexing your bicept Muscles, think of Jill's beauty pose)
give me an A (10 side pullups touching your toes...Ahhhh!)
give me an R(Running in place, higher Mary)
Give me a Y (Mary:Y Allyce, stop whining!)
You can do it Mary!  Yes YOU CAN!!! (arms rolling up above the head and TADA)
She also told me that "sorry your door is closed...and I took the key and threw it away.  Far away in the Pacific Ocean."  Darn straight got that right Allyce.

So back to small steps...Sounds like good advice all around.  Will small step my way through the weekend and look forward to one more chemo week down - and one more week of side effects ahead.  Yep, yep I'll drink to that. Lots and lots of water.  Cheers.

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."

Words of Wisdom From Aunt Vu

A California biker is out in the beauty of nature and God decides to grant him one wish...The biker after a little thought asks for a bridge from California to Hawaii so that he can ride his bike over to the islands.  God says to the biker,"Isn't there something a little less materialistic that you might ask for?  Something of more substance."  The biker thinks again and then asks to understand what his wife is feeling - when she is crying and says it's nothing he would like to know what she is feeling - he would like to understand her thoughts.  God responded,"Would you like two lanes or four on that bridge?"

Getting Your Fence Posts In

Thursday night my sister Dianne (Annie Bananie as she is known to the clan) had a horrible fright as did all of us along with her. It involved a call to 911, an ambulance trip and a blood clot that moved swiftly through her leaving her short of breath. All of us on the sidelines could hardly breath ourselves. She's still in the hospital getting sorted out. Once we know she's ok I think the entire family will retreat to our beds and put the covers over our heads. So now AB is getting lectures far and wide about setting boundaries on what she does...it's not easy getting the fence posts in the right places. She has a lot to give - but part of that giving has to go to herself. Maybe she can put in a few gates that she can open now and again when she's up to it, and put the lock on her side of the fence so she can monitor strays. AB is famous for taking in strays. But limits are going to have to be set. To be honest, I'm one to talk. I over did it today and am beat into the ground. I get tired of being tired. I finally organized and put the Christmas stuff away that I had chucked in the basement. It was scheduled to be done in January before lymphoma rudely got in the way. Hugs and love to AB. She's in for the adventure of her life that much I know.
P.S. Had a scan on Friday - results next Friday.

240 Hours

Several years ago my friend Kat and I use to have a gratitude journal...which is to say that each day we would think of something nice to say about our work or our lives and tell each other.  Was thinking Ms. Kitty-Kat that it's time to dust off the gratitude journal again.  So - here's what I got:

10 chemo free days
Ten big ones
TEN GLORIOUS CHEMO FREE DAYS (regardless of how I feel)
1, 1, 1, 1, 1, 1, 1, 1, 1, 1!!!!
T to the E to the N days
9 days plus one bonus day
Ten-tashalicious days
Gobs of hours...240 hours...

Mark it in the journal in big bold RED ink. 

Love that.

Who I Am

My hair is gone in patches (but mostly gone)
My eye brows are half their original look
My eyelashes are in funny little clumps
My belly is swollen
My arms and legs are weak in comparison to where I started
My stomach is uncertain about a lot of things...hmmm...
My brain is fuzzy on the edges.

But I am not hair, or eyebrows, or eyelashes, or a belly, or legs, arms, stomach or brain...

I am what is in my heart and what I share with others - and what I take in from the world.

I am one of the lucky, lucky few who gets a glimpse of this while there is much more living ahead of me.

I will not forget.

Pushing Me Through

I got the loveliest email from my friend Scott last week asking how I  doing with the chemo..."only two more to go Mary.  We'll push you through them if that is what you need.   If nothing else, we'll help you laugh through them anyway."  I thought about this "pushing through" a lot since then, and realized that my family and friends have been pushing me through this whole experience.  Each email, text, prayer, candle lit, kindness shown, good thought, errand run, book sent, meal cooked, and more have literally pushed me through.  Last week I was on the phone with a person inquiring about some work we are doing in Salt Lake City and I told him about the chemo (meaning brain fried) and that I would need to bring in another colleague to fill in the details.  He said that Mother Nature is a powerful source and that he would go "talk to a tree" for me...see what I mean? Push, push, push at every (important) turn.  I have to say that I'm grateful for all the pushiness...that when folks tell me I'm strong and courageous I wish they could see the big crowd standing behind me with their hands outstretched ready to hold me up and nudge me along.  Julie and Scott will be up for lunch on Thursday to help with another shove and I'll be glad for the boost.  Thank you everyone for keeping me on my feet - even when I didn't want to be there.

Innies and Outies

All last week I counted the minutes until BSJ(Baby Sister Jan) would be here from D.C. via her business meeting in Denver.  It was a long hard week and the anticipation of BSJ was something to help get me through.  It didn't help that it was gray and rainy all week either - but BSJ brought the sunshine with her.  Over lunch with the fab four on Friday I was bugging and prodding someone and BSJ said,"Where did you come from??  Everyone at this table is an introvert but you!"  Which I thought was so hilarious because I was thinking where did they all come from?? (as any true extrovert would think!)  This is why when I am with my extended family tribe I am always so comfortable - it's LOADED with extroverts (come on tribe members, fess up.)  So I told BSJ I would be writing a post about her and she said NO, don't out her in a post because that is too much for an innie.  As an outie though it would be a shame to not mention that BSJ took me on a ride up American Fork canyon when I was feeling low and gross...and she is the one who suggested maybe if we stopped at one of the campsites and I took my hat off that we might score a roasted hot dog that smelled so good even from the road.  I also shouldn't spill the beans on the fact that she helped with weeding in the yard, ran errands for me, bought me a new dress and told me to slow down and rest all weekend.  The Chief Researcher made us lovely meals and BSJ and I also got time to loaf around and read magazines.  But this information should stay quiet to respect the innie side of BSJ, even though I told her when I jumped in her bed at 5 am on Sunday (she was still on D.C. time) that she might get it in a post...it's not enough that I'm an extrovert I'm also a morning lark...rise and shine at 5 am!  So Jannie...I totally respect your need for privacy.  But please come back soon...I need some more of that solitude with you again.  Miss you already.

Dear Target Pharmacy...

Dear Target Pharmacy,
Please remove my prescription for prednisone from your auto-refill program.  I don't think it is funny.
Sincerely,
Ms. DeLaMare-Lunatic-Schaefer

Post script on this (so far) sleepless night...

I'm too hot...
I'm too cold...
The top of my head is freezing...
The sides of my head are sweating...
I put on a beanie and my whole head is sweaty...
My feet stay neutral (cowards)...
Until the foot cramps start...
I throw off the beanie and lose it in the sheets...
Now I'm too cold...
and I can't find the beanie...
I try to throw the quilt over my now cold head and I get sweaty all over...
The nightly post-chemo ritual starts again...
I'm too hot...
I'm too cold...(second verse same as the first, a little bit louder a little bit worse.)

Any menopausal friends know this tune?  Come on, sing along...it'll be FUN.  Like camp for the over 40 crowd...and who doesn't love girls camp!

Ten Things I Know About Cancer...So Far...

Got no sugarplums dancing in my head, just leftovers of my prednisone whirling dervishes so might as well document  what I've learned so far about cancer:

1.   Sadly, chocolate does not always taste good.
2.   A good hat or well wrapped head scarf can carry the day.
3.   Eating helps, even if it seems gross.
4.   Drugs can make your emotions turn on a dime - meaning raving lunatic.
5.   Little things are what make the day - everyday.
6.   Being able to sleep is pure joy.
7.   Not being able to sleep is pure hell.
8.   Better living through chemistry is an overstated fact.
9.   It's not about facing death, it's about living life right now, right this second, every second.
10. Loving everything about your life, even that which seems challenging and bizarre, is possible, doable, and frankly worth doing.

Am working on the next ten...till then wish me luck on the snoozing scene.

Oh Chile, Y'all Should Listen to Yo Momma

Spent the better part of the yesterday in bed with post-chemo Baby Phoma...reading (thanks to T.A.)Paula Deen's memoir about living through some very, very, hard times and being happy to wake up on "the other side of the dirt" as she calls it. That chile wears me out. Paula would tell this chemo baby to listen to "yo momma" for sure...last night (if you can call it a night) that new born had me up at midnight, one, two, three, four, and six am peeing and sweating the night away...typical kid. The day after nausea is starting to quell and maybe I'll go get me some grits...(HA). Paula ends her book with "I'm thrown all my stinkin thinkin out the window" so I'm with her. Here's to a better day, one day at a time.
Lots of suga to ya'll,
Mary

Had the WHOLE Look On Yesterday

Yesterday I got the A-Ok on my eye from Doctor Retina...but I left with only one eye dilated.  I mean why not complete the whole look...bald head and looking like a cyclop.  Shelly said I had a cat look going on.  No need to clean my paws...I shook my tail and went on my way.

Three Tales of ...You guessed it...Lymphoma

Chapter 1

On January 18th the colon doc told me I had lymphoma, but my oncology appointment was not until the 24th...(she was out of town.)  I elected to stay off the Internet.  I didn't want to fill my mind with info that it had no way to process.  I was grateful for the time before the oncology appointment so that I could let my mind catch up to where my body had landed.  Finally, the night before I met "Dr.Chemistry" I decided I should at least know the definition of what had been identified as my now "sit-u-a-shun."  What follows is the first item that showed up on my google search...(since then it took several serious searches to re-find the site):

"Your Lymphatic System is Like a Map

The lymphatic system is like a detailed road map with large dots (cities), small dots (towns), and a bunch of thin lines (roads). You can think of the map as your body and the network of dots and lines as your lymphatic system.
On this map, each lymphocyte is a person. Each town is a lymph node, a place where there are a lot of lymphocytes. Each city is a cluster of lymph nodes. And each road is a lymphatic vessel. Just as people use roads to get where they're going, lymphocytes use lymphatic vessels to get where they're going.

Invasion of Lymph Node "Cities"

Lymphoma is like a city whose mayor has gone mad and designs a machine to crank out drones who have one purpose: to make sure he stays in office. These "people" consume resources but don't give back to the community. The mayor just keeps cranking them out and at first, no one notices because they fit in quite nicely. But eventually, they overcrowd the city and even cripple it. If given enough time, the drones will hitchhike down the road to a new town and cripple it as well.
That's why someone needs to monitor the city, and that someone is you. The first step is to realize that the mayor is nuts (via colon cancer screening or symptoms). The second step is to remove him from office (via treatment)." (from about.com)

Having worked for city government for the past 29 years this couldn't have hit the spot better...and trust me I've known a nutty Mayor or two in my time.  You just can't make something this good up - I shut down the computer.  I didn't need a bit more info to start my journey.  Thank you angels of the Patron Saint of Lymphoma Release.  You rocked my socks and set my head straight.

Chapter 2

Genius was attending her Radioactive Chemistry Class.  The professor, feeling clever and in the object teaching moment I suppose, used the example of a Marshmellow Man (think Easter timing) who had and "egg" size tumor...yes...Marshmellow Man had lymphoma and would use radioactive chemistry (PET scan) to learn about the progress of the condition.

Genius turned to her friend Jessica and said,

"Uh...this is AWKWARD..."

Not so funny Mr. Professor-man.

Chapter 3

Trying to stay up until 10 pm (so that I wouldn't be up at 2 am) I flipped channels on the TV in search of something, anything, to watch.  Ah, another medical show to watch - and lo and behold a woman (6 months pregnant) is taken into one of those serious doctor conference room and told....gulp...you...have...lymphoma. Treatment would be chemotherapy.  Now the show had my attention.  My full attention.  And by the way, there were not two doctors in a nice conference room breaking the news to me gently - HA.  The woman had to decide whether or not to deliver the baby early and start treatment...or wait and who knows what.  Now I had to watch the WHOLE show to learn the outcome.  There was some intervening dramatic details, but in the end she had a c-section and started treatment.  Not a word about hair loss, nausea, aches and shakes, and treatment outcome.  BARF - nothing exciting here.  Sucked in by dumb TV.  I better write my own scripts in the future.  I want details on the treatments, the chemical impacts, and for crying out loud the RESULTS.  Would probably end up on PBS with the only commercial endorsements from hemorrhoid remedy companies but I'm good with that business.  My whole family, the entire extended clan, would tune in for sure and call in during the phone-a-thon to raise money for the station. Hell, they'd be working the phones.

Three for the Money

During the last week the van had an irrepairable flat tire, the saturn flunked the safety inspection and the dishwasher circuit board burnt to a crisp...(thank heavens we have six dishwashers at home.)  A typical spring "in like a lion" response to our bad appliance karma.  We almost always buy extended warranties and the manufacturer loses money on us.  In the context of life these events seem not so big deal.  Glad to have the "three" behind us.  While it seems like the not-so-nice things happen in threes, the great stuff seems to know no limits.  Lots to report in that area:  friends invited me to lunch, chocolate dipped strawberries (huge, like baseballs) showed up on my desk, another new scarf (among many)showed up in the mail with awesome earrings (ah, Suz, you are like Santa and the Easter Bunny all rolled into one each week), errands run by darling daughters, dinner with the beautiful and witty sons,a field trip to see the tulips and daffodils downtown by a thoughtful friend, gorgeous yummy organic eggs from a friend's nearby "farm"...on and on it goes.  The universe has a way of over compensating for the threesome...and ain't that grand. AND, got through another week.  Still another week till chemo comes around again - and that is the biggest pleasure of all.
Love is a many splendor thing,
Mary
P.S. And I didn't crank, not once, about my chemo-ed state in this post.  SAWEEEEET.
P.P.S.  Just counted - only 7 weeks till my 8th chemo (Maybe a good title for a country western song...hmmm)

I'm getting what I asked for...oh yeah baby

I decided to give the chemo permission to do what it needs to...
A hall pass
A green card
Full house access
An all day ticket
Free play zone
A shopping extravaganza
Pass go every time...and collect $200
Bingo up, down and sideways...AND ACROSS EVERY ANGLE (heh, heh)

WHEW...

and chemo in turn slurped it all up and went to town and back again and TO TOWN AGAIN!!!  Good on you chemo...I'll take that fatigue and those quirky body shakes as a nod to your extreme success.
MUWAH (air kiss on you)
Mary

Anyone Out There Up for A Challenge???

I'm sick of chemo, sick of being tired, sick of drug induced annoyances...yaddah yaddah yaddah...so anyone up for a challenge? I'm challenging myself to do 5 push ups a day - the cheater "girls P.E." kind...cause that's all I can do.

You in??? The gauntlet has been thrown...if not 5 push-ups, then what you good for??? Huh??? Get your tough on. It's time.

I Thought It Would be More Like Going to the Spa...

I thought (let's be honest, HOPED) going through chemo would be more like going to the spa...and since I've only been to one I had high expectations. On my 50th birthday my sibilings sent me to the Four Seasons Hotel Spa. While some nice spa person attended to my "situation" I would lay back and read a book, flip lesiurely through a magazine, or watch all my favorite movies while I grazed lightly on whatever food tickled my fancy. At the least I hoped it would be a respite from my daily routine so that all those minor, but annoying, home projects and activities got caught up on...sigh...sigh...Well here's to dashed hopes and chemo reality. Today I decided to not follow my now established post chemo morning rituals and found myself crumpled in a lump in bed. The Chief Researcher offered help but I knew what needed doing. He asked what sounded good to eat (nothing sounded good.) Too tired to read, fell asleep during a movie (twice, but what's new), and NOTHING sounds good to eat (ridiculous.) Whah, whah...ate anyway, took some aleve, finished watching the movie (thanks Mar and Carl) and took number two nap of the day all before 10 am. Food has a different meaning when you're counting grams of protein (need to eat 60-90 grams per day.) Gross - but I always feel better when I get protein in the system. Couldn't face eggs this morning so I opted for a PBJ (2 pieces of bread 8 grams, 2 tablespoons peanut butter 9 grams) and milk (1&1/2 cups of milk 12 grams.) And just think, there's a protein shake to look forward to later...ewwwww...

A False Sense of Energy

Twice in as many days I blew my top...in a big fireworks way.  There were circumstances (aren't there always??) but the facts are irrelevant to the explosions in some ways.  Besides the obvious reasons (oh let me count the ways) I wondered what was really going on with me.  Thought if I would just sit still for awhile the answers would come to me.  They usually do if you let them.  Trust the Oprah show to provide the answers...seriously.  I've never watched an Oprah show until I moved to Katie's place in January.  Now I secretly hope I get home from work in time to catch the afternoon's repeat of the broadcast.  Good thing this is the last season.  Michael Douglas was being interviewed yesterday by Oprah about his recent bout with throat cancer.  Oprah asked him about how he had used anger in the past throughout his life.  His response?  "Anger is a false sense of energy...it fades away."  So there it is.  Just like that.  The anger doesn't equal energy - trust me on this.  It simply makes me feel, for a very brief spell, that I do have my old surge.  Immediately afterwards I was wasted of course.   Both times. Looks like I depleted my energy bank reserves a bit and may be bouncing checks for a few days.  Now that I've laid out my confessional I hope to be a better person today.  Katie hopes so too - she had to call Camie in on Monday to steady the boat.   Slept better last night and I'm not so shaky this morning so the chances are good that I'll start afresh today.  Once again, the future hasn't been written.  Isn't that nice.
Hugs,
Mary    

Five Strawberrrrry Shortcakes....(crashing noise to follow the announcement)

Those that remember the early days of Sesame Street will recall a baker that would announce a number and then tumble down the stairs with the same number of baked goods he was carrying being tossed everywhere. Well here are the five strawberry shortcakes that tumbled my way yesterday during Chemo #5:
1. My sister Denise (better known as the "Pixie Packer")and my wild and crazy Cuban brother-in-law Emilio came to visit and to tour the chemo bar with me. After a prednisone inspired breakfast of delish pancakes (and Denise making me a lunch including a tuna sandwich that did not have too much mayo and did have pickles chopped up in it) we headed over to the scene of the crime. The Packer gave me a lovely hand rub while the poisons were starting to flow and Em took on the other hand (tho he rubbed it like he was sanding a piece of wood...good try Em.) Just as I went into benedryl la-la land they took off - but only after Em whispered in my ear that he had ordered a book for me that we had been discussing and I wanted to read. They were off to their beautiful daughter Mimi's college graduation. I was jeal to not be a part of it but was happy that I had enjoyed the pleasure of their company since Wednesday afternoon. And yes, the visit did include me jumping into bed with my sissy and Em tolerating the tradition.
2. Canoe Schaefer rearranged her school schedule and gave her students at the UofU a day off so she could dote on her mother at the chemo bar. She handed me bits of lunch to stave off the nausea, gave me a foot rub, rubbed my shoulders and even put my shoes on for me when it was time to go. Everyone at the chemo bar (that were still awake) looked on longingly for some of the same treatment for themselves.
3. Since it was not my regular chemo day (usually Friday not Thursday) there were two new chemo nurses. Paula, the mighty force on Fridays, was there doing her usual greatness. Tammy who I didn't know deftly placed the needle in my port and when it came time to have my after chemo shot to boost my immune system she wisely suggested having it in my belly versus my arm. It's always stingy in the arm, and I now know that there is a purpose for belly fat...not a bit of ouch occurred. Also had the kind service of Joan who turns out is in the Masters Degree Program that my darling Ryan Rasmussen (chemo counseling texting muse)attends. Great peeps - Joan says "doctors cure and nurses care" although I think the nurses do both.
4. The Chief Researcher in Residence held the fort at chemo as well, only leaving to run errands for me. After chemo he suggested a soft ice cream cone, which is the preferred snack by most chemo patients following treatment (yep, the research showed this). It hit the spot. When we got home I shared my tumbling array of side effects about every five minutes with him, and he told me one of the side effects of chemo was patients telling people their issues every five minutes and wearing people out...and I laughed really hard. Then he made me a cup of the most wonderful tea that I have ever tasted.
5. Em and Packer watched a bit of the movie called 500 days of Summer after we dined with kids Wednesday night (thank you Em and Packer for the divine fruit custard tart from The Bakery). My favorite scene from the movie is when the guy gets the girl and the next day as he is walking to work everyone smiles at him, bursts into dance, fountains spray, and a blue bird of happiness comes and lands on his shoulder. Em said that is what he witnessed when he was at the City building with me, people shouting greetings, high fives, and hugs from all I met. That is why the bluebird of happiness followed me to chemo even when I felt crappy. The bad stuff passes but the bird stays perched on my shoulder.
ANNNNDDD...as a bonus to the Five Strawberrrry Shortcakes, Allyce (my once upon a time weight lifting pal, exercise partner, and now treasured friend) sent this ode to five via email after chemo:
"I was thinking about you today and rrrround 5. I strangely thought of the number 5 and here's what I got...high 5...$5 footlong Subway's...5 little monkeys...a hello wave...talk to the hand...and come closer so that I can slap you. Good-bye round 5...and rest well Mary.
P.S...I met you in YOUR 5TH decade, and this is the last one. I STILL can't do 5 of Jill's 'perfect form' push-ups...) Now I'm done thinking about the number 5." (And in case you can't tell Allyce is a Preschool teacher - so she really knows her numbers!)
Five down three to go,
Mary

Draft: Craig's List Ad

Bald entertaining city government employee seeking good natured person to make a trade.  Will clean bathrooms for one entire year in exchange for body double to attend chemo treatment on Thursday 10 am.  Also willing to throw in an entire (extensive) hat collection to willing participant. Exclusive offer will reward participant with an unparalleled  life altering experience. Outcome guaranteed.

Tradition, Tradition, TRADITION (please sing out loud Fiddler on a Roof Style)

With Glo and Ernie in town there were some traditions that had to be followed.  It's the law.  First, jumping into bed with them to poke and tickle and prod the "toddlers" (my new name for the dynamic duo of Harold and Carolyn.)  Does everyone still climb into bed in the morning with the parental units??? My sisters and I always have and always will...not sure if my bro does, will have to check.  Second, jelly orange slices.  When you send Ernie into the drug store for an item or two you can be guaranteed he'll emerge with jelly orange slices and a variety of other candy goodies.  He did not disappoint.  Third, Glo will always say that she's had too much good food and doesn't need another bite...until the next meal appears.  Good work Glo - I'm with you all the way.  Fourth, we had to swing by the Motherland Country of Tooele and review the old homestead that my Pops left over 70 years ago.  We gave a shout out to Edna and Theo (beloved grandparents) and Aunt Lil and Uncle Byron up at the Tooele cemetery.  They were all enjoying the scenery. Fifth, inevitably Ernie will share with some unsuspecting friend that he is celebrating the 49th anniversary of his 39th birthday - you do the math.  Sixth, before the trip is over Glo and Ernie review the wonderfulness of the events that have transpired and how blessed they are in this life.  Aren't they just the cutest little bunny-wunnies you ever met?  What a great send off to chemo number 5 on Thursday.

Forever in the clan,
Mary

Calamity (Mary)Jane Meets Kindness and Good Fortune...AGAIN

Thursday afternoon Gloria and Ernie rolled in from Houstonland...and after a nutritious snack of locally made Gelato I deposited them at their hotel for a couple hours. My right eye seemed to have a big floater in it - which happens to us near sided folks from time to time. The next morning the floater was still there along with a gelatin looking something in my eye and little gray specks. Katie and Kelley had been to an eye doctor in Salt Lake this fall so I gave his office a call and explained my circumstance (including, of course, the chemo routine.) They graciously offered me an appointment an hour and a half later...nice peeps for sure. When I met the doc he told me to call him Bob. After a nice long review of my eye he advised me that I had a tear in my retina that needed laser surgery. He even included Glo and Ernie in on the review and they were ready to adopt him before we were done.  He called a retina surgeon who generously offered to see my at 5:30 that evening to fix it up. He assured me I would be ok but that we needed to fix things up as soon as possible. Bob, now my friendly eye doc for life, said he would show me where the retina doc's office was located. Looking out the window he said,"See that building with the 2 on it?" Me,"Yes." Bob,"That's not the office...but it's my favorite joke." From down the hallway his staff shouted out,"It's not funny." Bob was cracking himself up over the non-joke joke...Anyway at 5:30 pm the retina doc and his able assistant de-germed their office for me and then lasered the tear closed after numbing my eyeball. He said that it might be uncomfortable during the laser procedure - but when I asked if it would be like a bone marrow sample he laughed and said no. I sure know a lot about the anatomy of my eyeball now. The floater was blood from the tear. Apparently the blood thinner I'm on aided in this episode - maybe the chemo as well. A little strange to be blind in the eye for a few minutes after the laser but a great feeling to have sight restored. All I can say is  who are these wonderful people???  They whisked me into their offices and without a hitch fixed me up according to what I needed, not according to their schedules...so cool. In addition, they were just plain kind and you can't over rate kindness on any count.  I did coin a new phrase for Bob -I said I had a sblob in my eye. He figured that was a combination of a splat and a blob. I told him he could use the phrase in the future. Anything to help the human race further the world of medicine. Anywho - enough fun for me for awhile. Robyn told me to show some sign of weakness so the Universe will quit piling it on...I ain't saying "uncle", no how no way (but if you're listening Universe enough already.)
Yours with an eye to the future,
Mary

Too blessed to be Stressed

This morning on Good Morning America, Robin (yeah, we're on first name basis - I mean I hadn't watched TV for 18 months and now I watch it every day so we're like tight me and R.!!) said when she was in the Bahamas she saw a bumper sticker that said "Too blessed to be stressed."  Have been thinking about "stress" and the waste of energy that can be.  I mean when you get in a place like I am you really gotta start thinking about when and where you are going to use your limited resources of energy.  The one big stress that I have experienced during this adventure is when my dearest Maggie Lou told me that she had a mass and was going to have some serious surgery (really, do we really have to do EVERYTHING together...sheesh).  That was a lesson in understanding how others that love me felt when they got my news.  That was a biggie, that and the ridiculous flip out I had when I thought I had lost my contact.  Fortunately that was short lived (Annie as my witness as she was on the phone).  How silly to waste my precious life tickets on a contact...even if I am freakin blind and would need to get a new prescription and multiple visits to the eye doc...and blah, blah , blah.  The funny thing is the night before I remember trying to be sooooo careful when I put my contacts in the case.  The contact wasn't lost - I just put two lenses in one side of the case.  Oh boy - I'm a little off kilter.  Seriously, stress is a self imposed handcuff.  It's like turning on a vacuum and hooking it up to your energy port.  Ridiculous when you think about it.  Choose not to stress - that's my new mantra.  This weekend, while trying to come off the chemo drugs, I got shakey (blood sugar dropping from dying blood cells) and it made me feel nervous, jittery and YES physical stress.  Decided to let it go...just like that .  Deep breathe and let it go and face it for what it is (drug reaction, not my choice.)  So, when my tooth fell out I decided to just let it be...do need some glue tho.  Good thing my dentist is a number one pal and friend and will no doubt bring some cement to his house and meet me there and fix it up (like he did just before chemo - same tooth, same problem.)  And, of course, the sequel to the stress issue is that the blessings FAR out way the need or drive or desire to take on any stress.  In addition to the many, many blessings from last week alone I've been graced with lunch visits from some darling ladies and gents (you know who you are) that took me to the moon and back on a single day. Hence the title of this rambling...too blessed to be stressed and ain't that the real deal truth.
Love and peace,
Mary

And I Know You're Reading This Camie!

Today is a big, big day (think Grand Canyon big)...Camie turns 27 years old.  I wanted her to be born on my birthday - mostly because she was overdue and I was sick to death of being huge pregnant.  She insisted on her own day just out of sight of mine.  For 27 years she has graced my life with her wit, wisdom and charm.  From day one she has been a word devour-er.  A letter eating monster - ravenous for the offerings of a page.  She would sneak books to the dinner table to not lose any ground reading...and always had a book with her on any occasion just in case she ran out of print.  Spare books were tucked into the crannies of the van - her 72 hour emergency kit to ward against the loss of alphabet goodies.  She wore out a set of Anne of Green Gables books.  She lapped up words like slurps of delicious soup and topped them off with a big whipped cream splat of more...always...Now she is an author "C.A. Schaefer" - better known to us in the inner circle of her life as "Canoe Schaefer" (thank you spell check.)  I was 27 years old when she was born.  She seems a whole lot smarter today than I was then - and not just because she is past the midpoint on receiving her Phd.  She is the peanut butter to my jelly - she is the cherry on top of the ice cream sundae of life...she is life in technicolor fanatastic goodness.  Thanks Camielitta bobbitta...love you gobs and gobs.  You make my heart sing.

Mind Matters: how I was pathetic yesterday morning...but not all day

The week following chemo is crappy...I know that it is and I can count on a downhill slide through the first 10 or 12 days.  The weekend following the treatment is usually the worst of it.  Yesterday I sat on Katie's poisonous couch thinking over and over and over:
I don't feel good
I don't feel good
I don't feel good
I don't feel good...
Something on the morning news provided the opportunity for a single tear to drip down my face.
Katie, on her way out to an early morning class, said,"Well Mom, the one advice I have for you is get dressed and get to work as soon as you can."  Of course Genius was right.  I had to straighten my self out:
I'm ok
I'm ok
I'm ok
I'm ok...
Got showered and dressed and off to work and low and behold:
I WAS OK.
If you wonder if all the baloney and haloohey about self talk works I'm telling you IT DOES.  What you tell yours MATTERS...seriously, no kidding, yes indeed.  I always hear about the power of the mind and I'm here to witness (holy moley revival tent intensity) that it really, truly matters.  I personally think that you have to acknowledge where you're at and then decide where you want to go with that big ole powerful brain.  My very wise friend Barbara use to tell me that every morning she would say "how am I feeling and what do I need."  If you think that is easy to do it isn't.  Being clear about where you are at and what you need is an interesting exercise - like yoga stretches for the noggin.  And please note, this post is a self lecture as I type.  Trying to locate where I am on the mental map this am so I can self direct my morning.  Fortunately, yesterday's pity party was time limited cause I had other things to do.  Will probably be back reading this post to myself again soon.
Hugs,
Mary

Dear ole Body of Mine...

Dear Body,
I've been meaning to write to you for a awhile now but you know how things get away from you when you are involved with the day to day stuff.  I have a few things that I need to tell you - you know, get off my chest (I know you understand what I mean.)  I haven't always paid attention to you like I should have.  And still, I know that you've always been there for me.  I won't even go there about all the crap I've eaten over the years and how you just stood by me...but you have to admit I've also done some really good organic, healthy chowing for a good long while as well.  Especially in the not to distant past.  I admit, the last few years I've really put you through the paces...zumba an awful lotta times a week and weight lifting and turbo jam...well we all know that that's behind us for right now.  I didn't know that you had lymphoma - I mean I feel really bad about not knowing that was going on for the last few years.  You really came through for me and you got everything all built up and strong so that I could just turn around and battle what you knew you already had.  (Ok, this is getting a little weird, but stay with me here.)  I have a whole new world view of you now - not like the magazines that talk about fitness, and strength, and a good core, and being your best body now, and 10 ways to lean down before the holidays...well, you get the picture.  I think about the sweetness of breathing, and the loveliness of walking, and the kindness of arms and legs that carry their own weight and the way you can think and sing and listen and learn and dance and basically enjoy every moment.  I just want you to know I really appreciate you hanging in with me even though I'm dosing you with chemicals and asking you to buck up and stand tall and just "deal" with things.  It means a lot to me.
Yours in the flesh,
Mary

Yesterday I was Floating on a Big Fat Cloud

Yesterday was my birthday and when I think about it today I feel like I was floating on a big fat cloud. It was like being in a movie - you know when they they have a party scene only they show freeze frames of the event?  Click, click, click  - you see these happy things happening one shot at a time.  That is how my brain is trying to process what happened to me.  I got led out to a balcony on the third floor of the City County building (think Evita) to look down on a crowd (big, like a movie, like who are those people??)  Then I realize that I know all these peeps and they are singing to moi - and there are flowers and balloons and rose petals and birds singing and pieces of confetti and bands playing and fireworks and....okay I made up a lot of that stuff but I'm just saying that's how it FELT to have that kind of thing happen.  Inside my head and my body I was feeling chemo wibbly and fuzzy and even now I'm wondering how much of this I might have made up (HEE) but realizing that it was a really terrific and amazing day.  And that doesn't even count all the individual greetings from the darlings that surround me.

Whoooowee...fantastic over and over and over.

P.S.  But I gotta admit, I kinda wished that it was my "end of treatment" party but it's not.  It's my launch into Phase 2 of chemo - four down four to go.  What a send off.

Welcome Back Baby Phoma...7 lbs. 3 ounces

Gotta spread the joy that Baby Phoma is back on the scene thanks to chemo 4.  After each chemo round I awaken to a swollen belly, thanks to the many bags of saline and drugs that get pumped into my port (I have a very cool port in my chest so that I don't have needles in my arms- hooorah!!) during my four hours of drug dosing at the chemo bar.  I look pregnant the next day...seriously...Baby Phoma weighed 7 lbs. 3 oz. this week. It is certainly the love child of Ms. Chemo and Mr. Prednisone...After the first chemo I couldn't believe it and sent some very unsavory photos of this wonder to some select family members and very close allies.  Sorry, lymphoma has removed all my filters (did they exist before??)  I'll hold back this one time.  Hopefully, Baby Phoma will be down today thanks to my excessive water drinking.  

I met some new chemo friends at the bar on Friday...you meet the nicest people in the strangest places.  And the drug dealers at the bar are so kind.  They really know how to hook up a port in a blink without any fuss.

(Not so) Secret Millionaires

To calm my jitters prior to chemo round 4 on Friday I decided to jump online and watch a little junk tv - an episode of the Secret Millionaires.  Have you seen it?  A millionaire gets sent to somewhere in the country to live and do volunteer work for a week in an impoverished place (subsisting on the same amount of food money as someone would have on welfare that week.)  At the end of the week they give away a gob of money to the folks that they have met that are doing good.  Don't know if it was the prednisone coursing through my veins or just life in general but that dang show had me crying all the way to chemo - in a good way that is...I mean who wouldn't want to give away fistfuls of money to people who are feeding the poor, training young people to build houses, or sweet people who endure dialysis everyday for years on end? And listen, the surprised gift receivers are bawling, the millionaire is weeping, it's a whole give-alot-get-alot fest!!  I've been thinking how part of my reaction has a whole lot to do with my life right now.  I have so many not so secret millionaires surrounding me at  home, work, through email, text, the phone and mail...people giving, giving, giving to me all the time.  I got jazillions in love and support coming my way.  People ask me how can I be so strong on this quest and I think how can I NOT be strong with the super net of folks behind me all the time.  Why if I leaned back just a little there are all kinds of hands holding me up.  If you think things don't matter that you do, even little things, they matter.  Prayers, candles lit, a shout out down the hall at work (can you imagine working at a place where people yell down the hall that they have a cold and can't come close but they love you and think of you???), an arm around my shoulders or a squeeze, a text, an email, a card, a pot of soup, a hat, a poem, a special treat in the mail, a good thought my way, an errand run, research done on my behalf, a meal shared, a hand with a project, flowers on my desk...the list seems endless.  How can I possibly give back all that is being given to me???  I got a lot of doing to do to fling back to the universe all this glorious bounty...I better get cracking.
Endless love,
Mary
P.S.  The Chief Lymphoma Researcher in Residence found online that if I take my prednisone in two doses throughout the day that it lessens the emotional and physical impacts on me...awwww, now that's how you spell r-e-l-i-e-f...much better...

I Get High with a Little Help From My Friend(ly oncologist...)

Today I started taking my mega dose of prednisone as a precursor for heading to the chemo bar tomorrow...I take it for five days.  It makes me higher than a kite, my heart racing and my mind spinning like a gerbil wheel.  Get this, these are the listed side effects:
Difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes;nervousness.
Good time, eh??  I got so wound up during one round that I arranged all of Katies clothes by color - and style...I can't wait to get my hands on her sock/underwear drawer this round.  She has given me the stink eye every time I even get near her dresser.  My mighty spouse, Scott (Chief Lymphoma Researcher in Residence and co-creator of the fabulous foursome) tells me that the prednisone is like the nut-cracker for the cells so that they can receive the chemo impacts.  Ok already...but it still makes me nuts.  On Tuesday, following the five day adventure, I can look forward to an emotional and physical crash.  Last round when I hit bottom and started crying Cray reminded me that it was ok to just go in my office and take a break.  Smart thinking.
Back at ya soon - gotta go find something to organize...NOW...
Hugs,
Mary