Unexpected Gifts

Since my last post, I've been trying my best to come out of the fog that was my last chemotherapy treatment. I think in some ways, looking ahead to the holiday season, my mind, body, and spirit were just not ready for it all.  I keep reflecting back to December 28, 2013, my 40th birthday.  It was a gorgeous day and my mom hosted such a beautiful party - it was so great to see family and friends come from near and far to celebrate. I look at this picture and I think how crazy my life became just 4 months later and how quickly 2014 has gone.

We headed to Pittsburgh for Thanksgiving this year and I think the change of scenery was good for all four of us.  I know it was good for me, it was my first week since April that I didn't have any medical appointments.  The road trip and time with family was a good way for me to recharge my batteries, my can-do attitude that has gotten me this far.  I do, regardless of my current circumstances, have plenty to be thankful for and staying positive, accepting help, and helping others is how I've managed to cope (hopefully, this attitude has helped others deal with me!)  I'm glad I "met" someone to remind me of that.

We went to the Carnegie Musuems of Art and Natural History.  These, along with the Carnegie Science Center are excellent museums (Pittsburgh, despite some rumors, is a great place to visit).  We focused on exhibits that the kids would like and then we stumbled into one entitled, Maggie's Centres: A Blueprint for Cancer Care

Maggie Keswick Jencks was diagnosed with advanced stage breast cancer and died in 1995.  Because of her experiences as a cancer patient, she was determined to help people "not lose the joy of living in the fear of dying."  Even after given only months to live, she worked tirelessly with medical professionals, architects, and designers to create a different kind of support for cancer patients.

The first Maggie Centre opened in 1996 and focused on providing those diagnosed with cancer and their families a place to receive a variety of emotional and social services.  One visitor said, "Maggie's provided me with a refuge - a sanctuary - part of the real world but somehow detached.  The world hadn't changed but cancer had totally changed who I was and I needed help to learn how to live again."  Yes. That. Exactly.

As I walked through the exhibit, I was so energized by Maggie's spirit.  I couldn't wait to get home and read more about her and the centre.  No matter who you are, where you are, you can make a difference, big or small.  I am so very grateful to know that Maggie Keswick Jencks walked this earth.

Today is #GivingTuesday.  I hope my post inspires you to further research the causes that are near and dear to your heart and that you find a way, no matter the footprint, to help those in need.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” --Ralph Waldo Emerson 

I "HEART" Student Affairs

As I was going through chemo, heading into the Halloween weekend, I thought about my large family of student affairs colleagues.  A Friday Halloween followed by a daylight savings time change is just handing college students an invitation to be creative - in good and not so good ways.  I reflected on security plans, on-call protocols, plans, e-mails, texts, and so many conversations that at their core were about keeping students safe and helping them make good decisions.  While at BU, “Make Good Choices!” was often the Friday send-off to our student employees and on Halloween Friday, I had that moment of missing students, missing colleagues, wanting to be part of those conversations.  

I recently re-joined NASPA after a one-year hiatus and joined as an Emeritus/Retired member because it was what closest matched my current situation.  How funny, I’m retired!  Yes, I’ve been looking into a little beach shack.  Around the same time I joined, I also received an e-mail about the ACPA/NASPA committee on professional competencies.  I reviewed the current competencies and thought about how I’ve applied my skills; I feel like such a competent cancer patient!

1. Advising and Helping -- Changing roles from advisor/helper to advisee/helpee has been rough - I’m pretty sure my control issues got a wee-bit worse!  How many times did I tell a student not to hesitate to ask for help?  I got better asking for advice, but I think my wake-up call was watching us struggle as a family and knowing I can’t be my own kids' counselor.
2. Assessment, Evaluation, and Research - Having a foundation in this area has been empowering because I can talk to my doctors and ask the important, research-driven questions...and help Steve get his scientific head wrapped around each step of the process.
3. Equity, Diversity, and Inclusion - To me, what is key here is openness.  When I was first diagnosed, I was scared and felt guilty, like I caused my cancer.  That made it harder for me to reach out for support, to learn from others who had walked this path before me.  Being closed- off like that was such a waste of time.  I expanded my reach to let others in, and the people I’ve met, stories I’ve heard, and places I’ve gone this past 6 months has taught me so much about cancer, research and fundraising, and our healthcare system, including our military’s health care.
4. Ethical Professional Practice -  I loved working with college students for many reasons and especially enjoyed it when they challenged us to think about policies, procedures, etc.  These experiences made me a better consumer-patient; I had to quickly assess the Boston medical team and the Fredericksburg medical team and ensure I was confident in their practices.
5. History, Philosophy, and Values - Having a passion for the student affairs profession has helped me greatly.  Channeling my desire to best understand the who, what, where, and why of my cancer has led to learning more about oncology as a profession as well as discovering interesting history related to HER2 positive breast cancer like Hollywood money is basically saving my life with Herceptin.
6. Human and Organizational Resources - Making a connection to this competency is a stretch.  Except that my career path definitely helped me to resolve conflict with students and employees. Being a mom is tough work, being a mom with cancer has its extra challenges.  So, resolving conflict and de-escalating crisis is handled on a case-by-case basis and we know when to bring in HR (aka Granny).
7. Law, Policy, and Governance - For me, this connects to assessment, research, and practice and I’m trying to use my investigative spirit (I believe student affairs professionals were detectives in their previous lives) to learn more about how our state and federal functions impact cancer diagnoses, research, and treatment.
8. Leadership - I have been using a lot of cheerleading techniques to get my kids to rally around mommy’s booby problem.  Participating in the Making Strides Against Breast Cancer walk was a really great way for the kids to feel like they are a part of something, that they aren’t alone.
9. Personal Foundations - This has been key to facing cancer head-on.  Maintaining a balance as best I can and staying positive gives me the strength to fight.  Communicating each step of the process with the kids and modeling positivity will hopefully help them now and in the long term.
10. Student Learning and Development - I miss the opportunities to employ theories and practices with college students, however, I love staying connected and hearing about what my colleagues are doing.  I continue to read journals and such because a) I never stop learning and b) I have plenty of time during chemo treatments!

What I came to realize is that so much of what being a student affairs professional is about, prepared me for walking this path with cancer.  Even better, I recognize that these are ever-evolving competencies that I can continue to develop.  I bet if you have anything going on in your life right now, you just might feel the same way too.

Thank you, Mums

It was a year ago today when Mums died.  I like to think that she, the irreplaceable Grammy, became our guardian angel that day.  Given all that has happened since her death, I just have to believe she's guiding us through some pretty rough, uncharted territory.

Grief is such a mysterious black box.  For me, it is like an ocean with low tides and high tides.  The bitch of it is, I don't have the timetable for when those huge waves of emotions are going to hit.  I never know when something I see, hear, or smell can trigger those emotions - the love that Mums gave me when she welcomed me into the Schaffer clan, along with the pain that comes from knowing there are no more moments to be shared.

I see a commercial for fried shrimp, a Mums favorite, I cry.  I see an old outfit she bought for the kids, I cry. Mums loved classic country music and whenever our station slips an old George Strait song in, I just start crying like a baby.  I'm sure I'm getting known as the bald, crazy lady driving and crying around Fredericksburg!

Since being diagnosed with cancer, I've often thought about Mums and how concerned (pissed off) she would have been about my health and prognosis.  I have more time (unemployed) and more things to tell her now (cancer patient), but of course, wish I would've called her more back then.  Intellectually, I can work out the guilt, but emotionally, I think that's the baggage that will stick around for awhile.

Steve would call Mums on Sundays and always said hello by saying the state or city we were in at the time (e.g., "Massachusetts calling"). It saddens me that Steve never got to say "Fredericksburg calling." In my heart, I have to believe that Mums knew we had hopes to move back down South in the future so that we could be closer to family.  Her death solidified that for us - we had to get the kids closer to one another.

The kids.  Corey, Dillon, Matthew, Logan, Jack, and Anna are the living embodiment of all that was their Grammy.  It's moments shared with them now that make us realize how truly fortunate we are and thankful that Mums got to love (spoil) her grandchildren.

They love and laugh deeply because of you, Mums.  Thank you for that.

We love and cherish you, always.

Just Like Me

Before heading to NYC for the Today Show's special program, #PinkPower, Steve and I talked to the kids to prepare them for a) my time away from home and b) the possibility that I would be on TV.  For as much as they could understand, Jack and Anna seemed equally excited for me and disappointed that they wouldn't be able to come.  I definitely owe them a train ride.

The Saturday before I departed for the show, we went to Maymont Estate in Richmond. This is a beautiful historic property on the James River with lots of trails, a nature center, and a farm.  It was hot climbing back up from the river, so I took my head-wrap off to cool down.  Jack instantly said, "Mom, put your hat back on, the kids are going to laugh at you."  It caught me off-guard and I knew I had to respond, but not chastise him.  I didn't do such a great job at that.  I sharply said to him, "Look, Jack, I'm hot, I decide what I wear, and I'm sure there is some other bald person here."

I think that was just too much emotion and information for Jack to process, so he made sure to find an alternate path to hike - preferably with his non-bald dad.  He didn't mention the hat to me again and overall, the day was quite nice, but that moment shared with Jack crystallized for me how hard it must be for a 6-year-old boy to have a hairless mom with cancer.  There is palpable anxiety when I'm at his school (we can't get out of there fast enough).  When meals get delivered to our house by a parent from his school, he's highly vigilant about who is delivering it (I wonder if that's because he will be horrified if the meal is from one of his classmates).  I know it's probably crazy to try to make my cancer an everyday, "normal" thing for the kids, but that's what I try to do, so that I can also make it "normal" for me and survive it...you know, and not totally lose it.

The exciting and nerve-wracking part about heading to the Today Show was not knowing how it would all work out.  I wanted my mom and sister to have a good experience as well, even though I know those two can make any situation fun.  Like going to Guy Fieri's American Bar because touristy, basic food seemed the way to go for my chemo-controlled stomach.  Winner Winner Chicken Dinner.

I thought it would be great to get on camera with other women who were bald so that I could say to Jack (and Anna), "see, those women have a booby problem just like mommy."  Of course, if I got to spend time with the hosts or any celebrities, that would be icing on the cake.  From the moment I heard about the event, I just knew I had to go and I'm glad I never second-guessed myself, even when I got nervous or anxious.  The entire experience was exactly what I needed, what my family needed as something positive and energizing to reflect on whenever we lose our way.

The cast of hosts spent time with us, especially Hoda Kotb, a breast cancer survivor. Every single person felt loved and supported by her - she came to see us at 6:30am and was with us throughout the morning playing Pharell Williams "Happy" on her portable i-Pod stereo; evidently, she carries it everywhere.

And then, I got to spend some time with Carson Daly.  Our sons are both named Jack and we had a good laugh about watching The Voice with them.  His grace and kindness really shined through given he truly understands a mom's fight.  Carson may be a celebrity, but he's also just a boy at heart, a son who has lived with the roller coaster that is having a mom with cancer (his mother has been in remission for over 10 years). I was so glad I got to show Jack this picture and let him know Carson's mom was "Just Like Me" and her doctors helped her and she's doing great.

 

Being able to stand beside Joan Lunden and ask her a question on national television was pretty surreal. Like anyone with cancer, you are thrown into a new life you didn't plan for and not only is she fighting for her own recovery, she's a tireless advocate for everyone else.  For me, #PinkPower was an event that then turned into a state of being.  We can use our #PinkPower to keep fighting, educating, and empowering with hopes of eradicating.

Jack and Anna ask to see me on TV just about every day now and are far more comfortable with my appearance.  I kind of wish every month was Breast Cancer Awareness Month because it definitely helps keep the conversation going with them.

I met so many wonderful people and heard so many amazing stories, but there is one person in particular that will stick with me.  Our trip had come to an end and we were getting on the elevator to head to our car at Union Station in DC.  A man in the elevator with us simply lifted his wrist to mine, he had a pink "Making Strides Against Breast Cancer" bracelet and said, "My Grandmother, 1956-1957, she lived until the age of 98. Keep Fighting."

I get up each day knowing that I have so many wonderful people helping me with this journey, this marathon of fighting one ugly disease.  Thank you so much for your love, prayers, and support.  It all adds up to make a huge impact!

Please remember to schedule annual exams and encourage your loved ones to do the same.  In case you didn't get to see the segment on the Today Show, you can view it at: http://www.today.com/video/today/56155141

Secret O' Life

My mom will be quick to tell you that she's my primary caregiver (Steve accepted this back in the 90s).  She has pretty much dictated my after-chemo rest schedule.  I had chemo right before Labor Day weekend and then went to my mom's house, alone, at her request.  I think my mom wanted me all to herself, back at my childhood home, so that she could see and feel like things were progressing, that everything will be o.k.

My treatment is going well right now, but, I do sometimes think about the what ifs and future not-so-good scenarios (I think all my loved ones do).  It's hard not to worry, but if there's one thing I've learned from my mom, I can't let worry control me.  I can't let anything control me, not even the cancer and the really crappy party favors it brings with it: nausea, headaches, constipation to diarrhea back to constipation, and pain in places I didn't even know existed.

I'm glad I spent Labor Day weekend with my mom.  It gave me time to truly rest, but I was also able to hear some family stories I hadn't heard before and revisit a box of old souvenirs and mementos; it was an unexpected gift, a little bit of therapy.

There I sat, in the living room, looking at my father's beautiful handwriting on a 1982 Webster's pocket dictionary he gave me for Valentine's day, reading a note about fried chicken from my Southern Belle Aunt Sally, and laughing hysterically at my 1989 journal and programs from REM and Paul McCartney concerts. Boy, my mom was so sneaky.  She knew that appreciating my past would help me deal with my present.

My mom is a very strong, independent, positive woman, but honestly, it's shocking how positive she is considering all she's witnessed in her lifetime.  The impact of The Great Depression and World War II, mental illness, gun violence, and suicides have all been at my mom's doorstep.  She has every reason to be bitter, negative, raw, but, she isn't.

Even when it seems impossible to do, I watch my mom face each day with conviction, faith, and hope.  I wake up every day and try to do the same - I try, I fail at times, and I try again.  As mothers ourselves, my sister and I are blessed to have Sara Ann Goodman Bounds as our mother, teacher, and role model.  Of course, it took us a little while to figure that out!  But that, as James Taylor says so well, is the Secret O' Life.

The secret of life is enjoying the passage of time.

Any fool can do it, there ain't nothing to it.

Nobody knows how we got to the top of the hill.

But since we're on our way down, we might as well enjoy the ride.

The secret of love is in opening up your heart.

It's okay to feel afraid, but don't let that stand in your way.

Cause anyone knows that love is the only road.

And since we're only here for a while, might as well show some style.  Give us a smile.

Isn't it a lovely ride? Sliding down, gliding down,

try not to try too hard, it's just a lovely ride.

Now the thing about time is that isn't really real.

It's just your point of view, how does it feel for you?

Einstein said he could never understand it all.

Planets spinning through space, the smile upon your face, welcome to the human race.

Some kind of lovely ride. I'll be sliding down, I'll be gliding down.

Try not to try too hard, it's just a lovely ride.

Isn't it a lovely ride? Sliding down, gliding down,

try not to try too hard, it's just a lovely ride.

The secret of life is enjoying the passage of time.

"More Than A Woman"

Music means a lot to me. It keeps me connected to memories of my dad, he was such a great musician and lover of music.  Last night, we took the kids out to a restaurant that is located across the street from one of our old apartments.  We ate outside and enjoyed the eclectic mix of old tunes playing.  When the Bee Gees' "More Than A Woman" came on, it was as if I got my marching orders from dad to get this blog post done.

During the summer of '79, my mom couldn't keep up with washing my favorite iron-on, Bee Gees t-shirt.  I loved the Bee Gees - dancing to their songs is just pure fun.  Recently, Barry Gibb has been in the media talking about being the only living brother, touring alone for the first time, and dealing with the roller coaster of emotions that all of that brings.  I can certainly relate to those peaks and valleys; I have so much love and support surrounding me, but I can still feel alone, lonely in my struggle.

Right now, I'm losing my hair rapidly.  I will probably be bald by Labor Day.  I try to remain positive, especially for Jack and Anna.  I remind them, and myself, that all of this is not permanent and we can have fun trying on different hats and wigs.  This is really hard to do when you are confronted with commercials that have celebrities talking about the latest advances in hair color or how shampoo technology has improved to make your hair as strong as rope.  I never thought that I would hate going through the hair care aisles in CVS so much!

My hair loss is another example of something I can't control and of course, that royally sucks.  I feel less like myself, less like a woman, less like the girl Steve fell in love with (I know that my long, brown, curly hair must have had something to do with it).  Of course, the irony is, like many people, I often hate my hair!  I have had a lifetime of struggles with my thick, curly hair, so perhaps I should take this as a gift of starting over. I've been told that my hair may come back different -- so stay tuned for that one.  In the meantime, I'll try to keep reminding myself that these changes, these struggles make me more, not less of a woman and if all else fails, I'll cue up Saturday Night Fever...

Mommy's Booby Problem

I've sat down a few times to write about my cancer through Jack and Anna's eyes, but each time I tried, I just closed the laptop and walked away.  I didn't know where to start or how to really convey how much it sucks for a 6-year-old and a 3-year-old to live with their sick mom, the uninvited breast cancer (and all the doctors that came with it), and their dad who really isn't o.k. with it all either.

From the very start, I give credit to the Dana Farber website and my doctors for helping me find age appropriate ways to talk to the kids about what was going on with me, in baby steps, one day at a time. That approach worked pretty well with the early stage of appointments, procedures, and surgeries.  Steve and I sat them both down and reassured them that the doctors were helping me get some bad stuff out of me.  Of course, being inquisitive children, they asked, "where is the bad stuff in you, mommy?" and I pointed to my chest, my right breast, and from that point on, Anna referred to my cancer as "Mommy's booby problem."

Now that things have become more intense with chemotherapy treatments and the related symptoms of nausea, vomiting, and hair loss, the questions have definitely become tougher.  The ability for Jack and Anna to cope with what they see and hear is all the more challenging for them; adding to it is the fact that everything around them is new.  Their house, their yard, their neighbors, their friends are all gone - nothing looks right.  It is really hard to ask your kids to stop yelling and crying, in a 2-bedroom apartment nonetheless, when in actuality, they have every freaking right to hate all this.  In their world, this thing, my cancer, is happening to them.  But, they can't yell at those shitty cells in my body, so Steve and I will have to do.

Jack has asked questions like, "when is this going to be all over?" and "what if you don't get better?" I try to use times I have alone with him to be more specific, provide details in a sequence that hopefully reduces the abstraction.  Last August, when I was sick with viral meningitis, he asked if I was going to die, so I know he has the ability to create doomsday scenarios in his head.  So, I sit there with him, hoping something sinks in, he shakes his head, shrugs his shoulders and in split-second fashion, switches gears and tells me the cool, new Dude Perfect stunt he saw on-line and that Alabama Crimson Tide is SO much better than LSU.  That makes me feel better and here I'm trying to make him feel better.

Anna loves to play hair salon - she really has amassed quite a collection of salon tools.  We usually take turns doing each other's hair.  A couple of days after I got my hair cut short in preparation for chemo, Anna stopped asking to take turns with me.  She just wanted me to do her hair and I didn't push her to do my hair or to tell me why things had changed.  But, recently she said to me, "I want your hair back to the way it was Mommy."  I had to stop myself from saying something that wouldn't make sense to her in that moment and I didn't want to scare her by starting to cry.  I reserve my crying for the bathtub, at about 2am, it works for me.  I asked Anna, "how do you want my hair to look?" and she replied, "long, you know, about to here (she points to her shoulders)."  Knowing that Anna loves to shop, I said to her, "well, let's go see if someone has my hair out there in a store and maybe it will be purple."  This seems like a good fall project, right?

Parenting is constantly adjusting and making it up as you go along.  Cancer is the housemate that has forced us to be even more patient, creative, and spontaneous.  And when we are, those little moments that bring such life, laughter, and love happen.  Spur-of-the moment trips like going out to Fairview Beach (tims2.com) and showing Jack and Anna a little bit of the Redneck Riviera/Parrothead fun that helps mom and dad deal with the insanity of life (Jack seems to be interested in Keno already).  And, our timing was perfect because we just made, in seamless fashion, the pontoon shuttle that Steve worked on almost 20 years ago.  I might have been thinking of my booby problem, but I knew in that moment our kids weren't and that meant the world to me.

And then this happened:

Me: Jack, tomorrow I go for my chemo.
Jack: You get to go to the restaurant tomorrow to play Chemo?!?

Not a bad idea, Jack.  Let's see if I can get my chemo moved to the Keno bar.