Day 20 -- Homecoming Parade

It was Homecoming at the high school in the town where I live.  What is it about marching bands?  They always make me cry.  Even when my daughters weren't marching in them, they still made me cry.  I feel a sense of nostalgia and a swelling of pride.  Is that weird?  Then sitting at the football game again watching my daughter in the marching band, I thought of the games that I cheered at and wondered if I'll be around to watch my grandchildren march in the band at parades and football games.

Day 19 -- Laughter is the Best Medicine

Today while listening to NPR on my way to my haircut, I heard about some research showing how humor is improving the lives of Alzheimer's patients.  I think they said the research was done in Australia, but all I caught was an interview w/ an Alzheimer's expert at Mayo Clinics in Rochester.  He said that people who are able to make light of serious illnesses respond better to treatments and have a better quality of life.  Guess I've been taking the right approach by making jokes about my cancer.  Apparently laughter is the best medicine.

Day 18 -- The "C" Word

I knew it would happen. I just hoped it wouldn't happen quite so fast.  I knew that in the process of waiting for my next CT, I would start to question every ache and pain.  My throat is a little sore, and I'm trying to trace the source, wondering if it's the lymph nodes.  Several of my students have been out w/ strep throat and tonsillitis so I just have to pump-up my immune system w/ lots of fresh fruits and vegetable.   I continue to drink a Danactive every morning as I've done for the last five years.  Having some green tea w/ honey as I write this.  I just hate second-guessing my body.  After the brain aneurysm, I was asked if I worried about headaches.  I said, "No, not until you mentioned it."  I should've gone to the college volleyball game tonight.....cleaning house gives me too much time to think.

On a more positive note.....I guess..... While modeling an icebreaker speech for my students, I found myself talking freely about my health issues past and present as well as telling them that I'm not afraid to die.  I remember Mom said that to me a year or so before she died.  All I could do was look dumbfounded at her, kinda like my students looked today when I said the same thing.  My students have known about my diagnosis from the first day of the semester, and I've tried to keep my discussions about my health very light and positive.  One day when a student gave me a ludicrous answer to a question, I responded jokingly, "You're killing me!"  The students looked mortified until I said, "What? Someone w/ cancer can't say things like that?"  I'm making it my mission to take some of the fear and taboo out of the "C" word.  In convincing them, I'm convincing myself.

Day 17 -- Mammogram

I'm realizing that, while this blog has helped me through my treatments, it's forcing me to think about my cancer every day.  But then cancer has been a part of my life since I was four so rarely has a day gone by in 43 years that I haven't thought about cancer.  Today I was reminded about breast cancer when I went for my yearly mammogram.  They call it a screening, as if I'm going to see the opening of a new motion picture.  Well, this screening was a double feature.

Cancer is becoming as prevalent as the common cold.  And w/ as much research funded by various cancer organizations, they'll probably find a cure for cancer before they do for the cold.  When I talk w/ people about their cancer stories, and everyone has either a personal testimonial or that of a friend or loved one, we always talk about a patient's demise.  My mother's doctor's words still echo in my head, "It's not the cancer that will end your life," he told her, "but rather some residual effect of the chemo and radiation."  On my mom's death certificate, her cause of death is listed as pneumonia.  Is somebody looking at the stats?  Are they tracing all these residual deaths?  Are chemo and radiation therapies doing more harm than good?  Well, I got zapped w/ small amounts of radiation again this afternoon.  All these small zaps over months and years have to add to something.

Day 16 -- Getting Back to Normal

The lymph node in my neck is back to normal size.  The node above my left ankle is normal and no longer feels like it's bruised.  Crossing my arms over my stomach is no longer uncomfortable.  I got a little winded climbing the hills yesterday, but tonight playing tennis, I was running after balls like I was 27 rather than 47.  Now I wait.  My next CT is two days before Thanksgiving.  My biggest challenge now will be to keep myself up mentally, emotionally, an physically.  My students will help w/ the mental part; my friends and family will help w/ the emotional part; and my love for an active lifestyle will help the physical.  My prognosis is good. 

Day 15 -- Breaking Point

Today was a perfect Autumn day........clear skies, bright sun, no bugs.  I went for a three-hour hike at Fort Defiance State Park, found a lovely spot next to the creek, and wrote this poem:

Breaking Point

If I yell, "Uncle," will it stop?
Will She stop testing me?
I shouldn't have thought it.
Back in seventh grade confirmation class,
I asked, "God, please don't test me."
I had never failed a test before,
And this one was worth a lot of points.
My soul.
For 27 years She obliged,
And then She tested me with cancer, a brain aneurysm, and a child with Crohn's Disease.
My faith held.  We survived.
Five years later, She tested me again and took my mother.
My faith held. I survived.
Two years later She tested me again with another cancer.
Now I struggle with my faith everyday.
Each morning I wake with a hope that dissipates with the light.
How much more can I take?
At what point will I break?

The river finds a way.
Over a stone
Under a log
Around a bend.
The sun finds a way to
Burn through the clouds
Rise in the east
Set in the west.
I must find a way
Back to my faith
Forward to hope
Away from the breaking point.

Day 14 -- Final Infusion

I had my fourth, and hopefully, final infusion today.  They sped this infusion up so it only took about 90 minutes.  I must say, "I handled it brilliantly!!"  No side effects.  All lymph nodes that had previously been in an uproar have been silenced. I feel fantastic.   Three of my dear tennis friends went with me so of course we had to have lunch and do some shopping afterward.  Friends, food, and fun trumps an infusion and reminds me that the upcoming two months waiting for my next abdominal CT will be more easily borne.  This cancer is not a life sentence.....wait, actually it is.  It's a conviction and constant reminder to live.  I am very blessed, but I seem to need constant reminders to enjoy my life.  When I was sick in 2004, I heard a voice in my head telling me I was being given a second chance.  I knew I was cured and for the next several years felt a renewed vitality for my life.  These past two years, however, have been difficult w/ the death of my mother and my divorce, and I lost my zest for living.  I'm regaining my gusto and realizing that everything does truly happen for a reason.  Seven years ago the brain aneurysm led the doctors to the kidney cancer.  Now, seven years later, my checkups for the kidney cancer led the doctors to the lymphoma.  The hand of God is at work in my life........that's a life sentence.

Day 13--Youth Center

I'm typing tonight's blog at the Youth Center in the city where I live.  I've signed up to volunteer one night a month to "chaperone" middle school students from 7-9 and and then high school students from 9-11.  It's not really chaperoning since I get to play pool and ping pong and Kinect with them.  These are good kids....full of energy....full of life.  I think I may wish I could volunteer more than once a month!  Gotta run....someone just challenged me to a rematch at ping pong.........yeah, I'm pretty amazing!

Day 12 -- The Node Wars

I was reading another cancer survivor's blog the other night.  She talked about how our semantics for cancer usually involve combative terms such as battle and fight.  She instead suggested living a peaceful co-existence w/ the cancer.  I believe we all have small amounts of unhealthy cells that, when given the proper environment, become cancerous and invade healthy cells thereby gathering an army determined to take-over our bodies.  I agree that we must learn to co-exist w/ cancer, but first we have to regain the upper hand, regain our foothold on a healthy life.  And to do this, we must go to war.

I am at heart a pacifist.  Being too young to protest the Vietnam War, I instead watched my brother be drafted into it.  And when the next war came along, I was old enough to march and rally against our involvement in the Middle East.  Here in the States I was fighting my own war against an employer who wanted to restrict my wearing a black arm-band and a father who couldn't understand my need to wear it.  Sometimes wars are necessary for freedom or reunification, and sometimes it's necessary to go to battle against cancerous lymph nodes knowing that they cannot be eradicated but controlled.  Here in the U.S., we are famous for wars that can never be won.  Our war on poverty still rages.  Our war on drugs is never-ending.  The beginning of our war on terror just celebrated its 10th anniversary.  Perhaps instead of attempting to beat these enemies into submission, we should beat them back far enough to where they can no longer harm us. 

When Mom was given a two-year prognosis, she vowed she would fight.  Ask any soldier and she'll tell you that a two-year deployment would be mentally and physically exhausting.  What if the patient soldier pushes her enemy back halfway and bids it to cross no farther?  She may live to fight another day.

Day 11 -- The Cancer Club

When I had renal cell carcinoma in 2004, I kinda felt guilty for only having surgery and not needing chemotherapy or radiation treatments.  When I would tell people about my cancer, I'd quickly add that I also had a brain aneurysm at the same time just to make sure they knew I was sick enough.  Sick enough to warrant membership in some imaginary Cancer Club.  A club of honor where people proudly wear colored ribbons.  A club my mother belonged to three times over and didn't need chemo or radiation until her third form of cancer.  In my mind the only true cancer survivors were the ones who had survived these toxic treatments.  Last night at the high school volleyball "Pink Out" night, cancer survivors were given a pink rose. I carried it proudly as I wore my pink hat w/ my survivor pins and ribbons.  I think my membership is secure.  Does this mean I'm turning into an elitist?

Day 10 -- Random Opportunity for Caring & Kindness (ROCK)

While walking the dog this morning, I met a woman who was first walking one direction then abruptly turned and walked in the opposite direction.  This act of confusion caught my attention and then I noticed she was carrying a plastic Fareway bag w/ a cookie sheet, a bottle of Mt Dew, some yogurt, and what looked to be the remnants of a HyVee deli bag of chicken.  As I got closer I noticed she was crying and clearly distraught.  She spoke first, "Does this town have a taxi service?"  "Pardon me?" I responded, uncertain if she was addressing me even though I knew we were the only two people on the street.  "Does this town have a taxi service?" she repeated.  "No. Where do you need to go?"  After learning that her destination was a couple of miles away and the skies threatened rain, I told her that I'd drive her there if she wanted to walk back to my house to get my car.  Over the next seven blocks, I learned that the woman she was living with had kicked her out, and that she suffered from chronic pain and migraines.  I used my best empathic listening skills and just let her talk.  (I must point out here that I'm not completely altruistic since I used this example in class w/ my students since we just happened to be talking about empathic listening today.)  I gave her what little money I had in my wallet and told her that if it hadn't been for a kind woman at a petrol station in Grindley Brook, Staffordshire, England, last summer, my brother and I would still be standing there.  Relying on the kindness of strangers has to work both ways, whether you're the native or the stranger.

The caring of friends also goes a long way too.  Tonight at my daughter's volleyball game, I told a woman about my Non-Hodgkin's Lymphoma (NHL) diagnosis.  She said that's what her mother had.  Her mother's been gone now eight years.  I'm used to the fact that when you tell people about a disease or illness, someone inevitably knows someone else w/ that same disease or illness.  When I had a brain aneurysm seven years ago, every other person I talked to knew someone who died from a brain aneurysm.  I must've looked shocked when this woman told me her mother died six-and-a-half years after her NHL diagnosis b/c she went on to tell me about the three different clinical trials that her mother had been adamant to participate in.  The last of the trials was w/ Rituxin, which basically removed all the cancer from her body and would've put her into a more permanent remission if her kidneys hadn't failed.  Her last medicine is the first medicine I'm trying nine years later.  This woman that I never knew cared enough to be part of a study that has come to help me.  Thanks to the kindness of a stranger, I have a better chance of beating NHL or at least surviving longer.

Two or three years ago I wanted to start an organization known as ROCK (Random Opportunities for Caring and Kindness) where average people see someone in need and help that person meet that need.  I failed miserably w/ my first attempt when I stopped at a house and offered to paint their playhouse in the backyard.  The wife hadn't discussed it w/ her husband, and when I returned w/ paint and brushes, he gruffly told me to leave.  I pushed too hard, too aggressively.  Caring and kindness can't be forced on people, but today reminded me that random opportunities do arise for us to make a difference in the lives of others.

Day Nine -- Great Grandma Annie

I don't think I could've crammed any more living into this day.  After teaching three classes, holding office hours, and spending five hours w/ my younger daughter and other friends at a volleyball tournament, I've decided I didn't waste any minute of this day.  In my Mourning Glories blog, I think I mentioned that my great grandmother, Annie, kept a journal from the late 1880's to the 1930's.  Most of her entries involved her daily activities, much like this blog is doing, as she dealt w/ Crohn's Disease.  Well, at that time they called it tuberculosis of the bowels, b/c Dr. Crohn hadn't put his name to it yet.  Despite usually feeling quite tired, she still managed to bake and sew and cook and clean and tend a garden.  When she says things like, "I didn't accomplish much today," but then goes on to list the four pies and three loaves of bread she baked, and the clothes she ironed.  But every once-in-awhile she tells stories of how the doctor removed her older daughter's tonsils while the little girl sat on her lap at the kitchen table, and how the neighbor lady committed suicide leaving a husband a several small children.  I think Mom gathered strength from her grandmother's journals, especially since she never got a chance to know her.  I hope that if God feels it's necessary to call me home before I get to meet my grandchildren that they'll come to know me and their great and great, great grandmothers better through my blogs. 

Day Eight -- Dad's Birthday

I ended my whirlwind weekend at my dad's to celebrate his 86th birthday.  I left early from my brother's house so I could go to church w/ Dad and make sure everyone knew it was his birthday, which meant informing the minister so he could announce it from the pulpit.  The birthday wishes he got from his fellow church members made his morning.  I'd like to think that my presence made it too, but I'm never sure w/ Dad.  But I know I'm just as guilty......we neglect the ones we love the most.  Well, I'm not sure it's neglect.  I think my family sometimes takes one another for granted.  We assume and expect one another to be there, and don't always enjoy and appreciate their presence.  At the age of 86, Dad is learning to see the presence of friends and family as the best present.  I'm trying to learn this lesson a little earlier since I may not see 86.

I'm feeling fine today.  The lymph node on the left side of my neck continues to shrink.  It was somewhat bothersome this morning, but right now I don't notice any discomfort.  The lymph nodes under my arms are causing a little discomfort w/ the one on my left being worse.  I had some slight lower back pain just as I was leaving Dad's this afternoon, but the three-hour drive home and the three Ibuprofen seemed to ease it.  It was the kind of pain that catches you off guard and drops you to your knees.  Not sure if this has anything to do w/ the Rituximab.  It could just be the three-inch-heeled boots I was wearing today.  My chiropractor would definitely say the latter.  Sitting on an ice-pack when I got home certainly helped.

Day Seven -- Third Infusion

I had my third infusion today.  They again suggested increasing the speed of delivery to 90 minutes, but I still wasn't comfortable w/ that rate.  It was probably the nurse telling me that a side effect of the Rituximab (Rituxin) is convulsions.  Yep, convulsions.  I do remember reading about that in the materials Dr. Inwards gave me a month ago, but I was trying not to focus on that.  Well, for fear of shaking uncontrollably, I asked if we could arrive at a happy medium.  So after two hours, I left the infusion therapy center tremor free. I have my last infusion next Saturday.  I think I'll feel more comfortable with a 90-minute infusion then.

I was more tired after this infusion and took a three-hour nap after returning to my brother's house.  The Benadryl they give me before the infusion always makes me tired, but this time it didn't really hit me until several hours later.  It could, however, be that this past week was especially busy, and my body just needed to recharge.  My lymph nodes seem to be in less of an uproar these days, but I had more night sweats last night than I've had before.  I'm going to all these as positive ways my body is expelling this illness. 

Day Six -- Footprints

(NOTE:  I'm writing this on the 17th due to traveling on the 16th, but I composed this entry while driving.)

When I was first given the diagnosis of Follicular Lymphoma, one of my first thoughts was to write letters to my daughters for them to open at the important times during their lives when I might not be there.  You know, times like their weddings, birth of their children, etc.  Letters that would offer them advice and encouragement as they face each new chapter in their lives and promise them that even when times are difficult, remember the significance of being alive to endure them.

In the ensuing months after my initial diagnosis, the need to leave this trail has subsided, however, I still think it's a good idea for anyone, whether they've been given a cancer diagnosis or not.  Writing down our impressions, hopes, and dreams for future generations leaves a footprint.  Right now in my time, we're consciously trying not to leave a carbon footprint.  I'm not sure which kind of footprint I'm leaving w/ these blog entries, but maybe I'll write some letters this winter.

Day Five--"I Get By With a Little Help From My Friends"

Went to a concert tonight w/ my friend Lora where we saw other friends. I've come to the conclusion that anything is tolerable and doable and workable when you've got friends.  Lora made the comment tonight that despite my illness, I'm much healthier and happier than I was last school year when going through my divorce.  I had friends help me through that too, but I felt in greater turmoil than I do now.   There's research that supports the importance of interpersonal relationships in combating and controlling cancer, and people who are socially isolated are more likely to suffer from heart problems.  All this gives credence to the song, "I get by w/ a little help from my friends."  For me to fight this cancer, I must remain health physically, emotionally, spiritually, intellectually, and socially.  That's quite a balancing act.......but what a ride.

Earlier today I decided it was time to reconnect w/ some other friends that I hadn't talked to in awhile.  My Aunt Jean told me that a few months before Uncle Jack died he called up some of his old buddies that he hadn't talked to in years.  She's convinced he knew he was dying even then even though others didn't suspect.  I know my death isn't imminent, and I don't think my illness is the motivator behind wanting to rekindle past friendships.  It's not like I'm tracking down every friend I've ever had and lost contact w/.  I'm not sure I'd have enough time to do that if I lived another 50 years.  But I am trying to gather as many friends around me as possible so I guess in a way I am "circling the wagons."  I just don't plan on this being my last stand.

Day Four -- Sitting to the Occasion

No day should be wasted regardless of whether you have a terminal disease or not.  I've always looked back at my days when I get to the end of them and ask, "What did I accomplish?"  Usually it's a lot, sometimes it's a little, and rarely it's nothing at all.  I wasn't brought-up to just sit, but it's ironic that I've created numerous sitting areas inside and outside of my home.  Inside my house I have two family rooms and a living room.  Outside my house I have a deck, a fire-pit area, benches in my rock garden and shade garden, and a canopied swing.  I've created all these places to sit and relax, yet I rarely do either.  Maybe I need to get to a point where my biggest accomplishment is learning how to just sit.

Day Three -- It's Melting

I keep hearing the Wicked Witch from The Wizard of Oz saying, "I'm melting, I'm melting," but it's not her I envision but the tumors within my lymph nodes.  And as they're being eradicated, they're lashing-out for one final flare before they blaze out.  I don't expect them to go meekly or calmly, and that's okay.  I'm stronger than they are.  So melt, you bastards.  This body isn't big enough for all of us, and I was here first.

Day Two--Emotionally & Physically Fit

If I was in an anatomy and physiology class right now, I could definitely pass the test on the lymphatic system.  I could personally identify the location of all lymph nodes throughout the body b/c I'm feeling every single one of them.  It's not really a pain, more like a dull ache; the kind you get when you've got the flu.  But I feel fine....fine enough to teach three classes today and play two hours of tennis tonight.  I'm at a good place emotionally too.  There isn't a day that goes by that I don't remember that I have lymphoma, but I certainly go for hours without thinking about it.  I'm sure once I'm in remission w/o the flu-like symptoms I'll forget for days, maybe even weeks and months.  When reality does hit me know, it's not like the reality I felt after Mom died.  That was like getting hit in the chest w/ a sledge hammer.  This reality-check is a soft-nudge to remind me not to waste time.  I wasn't always at this point emotionally.  Right after my diagnosis I cried......a lot.  All I could think of was only having 10 more years and how that wasn't enough time to see my daughters set in their own lives.  Now I see 10 years as the minimum, not the maximum. 

I stopped my neighbor in the street this morning while walking my dog to ask if he could stop by this week to give me an estimate on replacing my gutters.  I could tell he had been crying and was quite distraught.  When I asked if he was okay, he broke down saying that he was sick and might have colon cancer.  He drove away before I had a chance to offer any words of encouragement.  The response I hate the most when I tell people I have lymphoma is, "Oh, I'm so sorry, Mari."  Then come the puppy dog eyes and droopy face.  I tried not to do that w/ Mike, but I too said, "I'm sorry to hear that."  What I would've liked to have said is, "It's going to be okay.  Just take it one step at a time.  Don't let your mind race to every possible negative scenario.  The tears and fear are necessary, but then you have to move past them and use them.  Use the tears to buck-up your emotions b/c it's going to be a roller coaster ride for awhile.  Use the fear to buck-up your physical strength b/c the appointments, tests, surgeries, treatments are going to drain you.  Sitting on the couch solves nothing.  Trust me, I wasted several days on the couch, immobilized w/ tears and fears.  You just have to keep moving b/c if you stop, someone places a mirror under your nose and orders a headstone."  Well, he might not be ready for that last line, but I do hope he stops by this week so I can assure him he's not alone, and this isn't the end.

Day One--Recap of first two infusions

For the year after my mother died, I kept a daily blog about my mourning process (www.mourningglories-mari.blogspot.com).  By doing this, I emerged a stronger person, which is even more necessary now as I deal w/ my recent diagnosis of non-Hodgkin's Lymphoma.  Therefore, I'm making the same pledge that I made after Mom died.....I'm going to write in this Moment with Mari blog every day for a year to work through the myriad of emotions a cancer diagnosis brings.  I feel it's appropriate that on this, the 10th anniversary of the 9/11 attacks, I begin a remembrance of my own that hopefully 10 years from now I can look back on as a survivor and not a victim.

On Friday, 02 September, I drove to my sister's in Minneapolis so she could drive me to Rochester for me to begin antibody therapy at Mayo.  Unlike chemotherapy, the Rituxin targets only the B-cells so I won't have all the negative side effects.  That first infusion on the 2nd took about five hours b/c they had to administer it slower since they didn't know how I'd react to it.  I did have a slight allergic reaction about halfway through.  My throat got scratchy and the inside of my ears started to itch so they stopped the infusion and gave me a large dose of Benadryl through my IV.  Once this reaction subsided, they restarted the infusions at a slower rate.  Aside from being tired due to the Benadryl, I felt great. 

On Saturday, 10 September, my friend Lora drove me to my second infusion.  This one only took about four hours, and I had no allergic reaction.  I have been mostly asymptomatic w/ my red and white blood cell counts being fine, no fevers, fatigue, or night sweats.  The only enlarged lymph node that I can actually feel is on the left side of my neck.  This, according to my hematologist Dr. Inwards, will be the most immediate indicator as to the effectiveness of the Rituxin.  I have noticed that this node feels like it's shrinking, but I also seem to have more symptoms like night sweats and fatigue.  I mowed lawn today and had to stop after an hour b/c I was exhausted......this just isn't me.  It felt today like all the lymph nodes in my body were revolting against these treatments.  During the first treatment I envisioned the antibodies shooting the b-cells and eliminating them and then hosing down the inside of my lymph nodes to fully cleanse them.  That's the vision I have to keep.  These treatments will work.  I will stay strong and force this disease into remission.