Thoughtful Thursday

Until I had cancer, I never realized how much craziness – terrible and beautiful – could occur in one week.

It’s been seven days since Chemo Round 2. I have to say that this round overall was filled with much less anxiety. My clinic appointment was a little later than usual so I had the opportunity to do yoga at my favorite studio and have brunch with Brian before going in. That set the stage for a much more relaxed experience. During chemo, I even had the chance to meet a new friend. Chelsea is my age and has been battling Stage 4 colon cancer for a year, while raising two small children, working as a physician, and actively advocating for the colorectal cancer cause. I have found her perseverance and advocacy inspiring and glad to have made a friend who can identify with my experience (and who rocks an iridescent fanny pack with the best of them).

With one round of chemo under my belt and some new meds on board, my overall side effects from round two were manageable. It took me about a day longer to be feeling on the “upswing” this time, and some other side effects like neuropathy in my hands and mouth sores reared their head. But all of this is normal, and I just keep reminding myself that this experience will make me stronger.

That might sound cliché, but honestly I am already finding this experience has made me wiser and has made my heart more open. My first boss Terry Meredith always used to remind us that “we had two ears and one mouth, and it was important to use those gifts with that in mind”. So much of this journey so far has been about listening (and as someone who LOVES to talk, this has been good practice). Mostly, it has been about listening to what I know my spirit and body need. So often in my life I have been BUSY – preoccupied with work, the house, errands, etc. While going through chemo, I have been forced to sit down more and work less. And in doing so, I have been more present. I have enjoyed more quiet moments with my boys, whereas two months earlier I would have been scurrying around picking up toys instead of just being with them.

Over the past couple of weeks, I have also had the opportunity to build bridges with some family members and friendships in my life have become richer and deeper. Some have asked me if I am angry to have cancer. And the truth is I don’t feel one bit angry. I feel like this is my path, and although parts are (and will continue to be) very hard, it will bring many amazing gifts along the way.

Week after week, I have been lifted up by the beautiful gestures of love and support from friends and family. But I will admit that by yesterday some anxiety of the unknown began to sink in. What if this treatment doesn’t work? What if my cancer spreads? Am I being too optimistic about my prognosis? It was then that a gesture from a friend and room full of little strangers was there to lift me back up…

A friend of my friend Sarah Miller is an elementary school teacher. Thursdays in her class are deemed “Thoughtful Thursdays”, where the children are given the opportunity to participate in acts of kindness. This week the students of Room 119 spent their time writing me cards to lift my spirits “because they knew it had been a hard month for me”. These children have never met me, and yet they were creating beautiful cards with things that I like (rainbows, yoga, Notre Dame, my dog, poetry, and the colon cancer ribbon). They urged me to be brave and strong and to “fight like the Fighting Irish”. I have watched this video about 20 times today, and I am still speechless. To Sarah, Laura, and the kids of Room 119, you have given me one of the most best gifts of my life and at a time when I could not have used it more.

Life is complicated and hard, but its worth living for all the wonderful things in between and to experience the love and human kindness that will always prevail.

XO – Mary

PS – To see the kids of Room 119 in their act of kindness this week, you can tune in here:
https://m.youtube.com/watch?v=tTNck9gSdBc&feature=youtu.be

An Irish Jig

I have been toiling for the last few days over how to accurately put this last weekend into words…

Every year, Spectrum Health puts on a 5K run/walk called the Irish Jig the week leading up to St. Patrick’s Day. This year, the race proceeds benefitted colorectal cancer. With my recent diagnosis in mind, my high school friend, Ashley Brennan, organized a group of my friends and family to take part in the race on my behalf.

As I entered the East Grand Rapids gym on Saturday morning before the start of the race, I was overwhelmed to see 40+ friends and family members there to support me. In a sea of green and shamrocks and leprechauns were friends from grade school and high school, friends of my brothers, co-workers, and even parents of friends that showed up. My high school prom date, Matt Korte, brought me flowers that were reminiscent of the nosegay he gave me on prom night in 1998. My brothers and sisters-in-law had coordinated to have “Mary Princess Warrior” t-shirts made, and Ashley had “Team Mary” fandanas printed. There was also a huge sign that said “Five Hopes for One Fear” in honor of this blog and my journey. As I saw my friends Derek and Matt holding that sign above the crowd in the gym for the first time, I was completely overcome with emotion and gratitude. Throughout the race, I had friends join me at the finish line and even had friends that were unable to make it but sent me loving texts and messages to tell me they were with me in spirit.

Through this journey I have already learned so many things, but the depth of gratitude I have felt is probably the most unbelievable and life-changing for me. How grateful I am is the first thing I think about when I wake up and the last thing I think about before I go to sleep. I have said this on my blog several times before, but I don’t know how I will begin to pay back the love, support, kindness, and prayers that all of you have offered to me without any expectations attached. At some point, I know I will figure it out. And I will never again under estimate the power of “showing up” for people when they need you in whatever form it might be.

Looking back over my life, it seems many of my experiences of God’s love have come in times of hardship and they have often come through the actions and humanity of those around me. This weekend is the perfect example. It is clear to me that just as much as I need this reflection of God at the moment, I must also strive to reflect that love back.

For those of you that know me well, you know one of my idols has always been Mother Teresa. My Aunt Mary introduced me to her and her works at a young age, and I have come to appreciate her even more in adulthood. She wrote and said a daily prayer I have loved for a long time, but it has come to have so much more meaning over the last few weeks. So for tonight, I will leave you with that prayer…

Dear God, help me to spread Thy fragrance everywhere I go. Food my soul with Thy spirit and love. Penetrate and possess my whole being so utterly that all my life may only be a radiance of Thine. Shine through me and be so in me that every soul I come in contact with may feel Thy presence in my soul. Let them look up and see no longer me but only you. Stay with me and then I shall begin to shine as you shine, so as to shine as to be a light to others. Amen.

Thank you again for a weekend that is going to help carry me through this tough road.

From the bottom of my heart… XO

Turning a Corner

On Sunday, as my chemo pump was detached and the intravenous nausea meds were wearing off, I hit my low point. I felt as though aliens had snatched my body and not one single solitary type of food or drink sounded palatable. It was then that the anxiety set in. How long would I feel like this? Could it possibly get any worse? How could I be a good mom, wife, friend, and co-worker when I felt this awful? Again, I started to panic. I cried on Brian. I cried on my parents. I cried alone.

My mom, dad, and Brian reassured me that it was ok to meltdown and feel angry. My mom (also a cancer survivor) reminded me that it was completely warranted for me to use the F-bomb as much as I wanted. But they also reminded me to take a deep breath and that things would get better. Because my mom had been through this before, I did my best to trust her.. For the rest of the day, I worked with the nursing team to dial in my anti-nausea meds and distracted myself with HGTV and movies with my boys.

When Monday came along, the sun was shining, I was able to keep down an Ensure for breakfast, and things seemed a bit less dim. I listened to my body and mostly rested so that I could have some quality time with the boys when the got home from school and work. And then came Tuesday… I only had to take one dose of anti-nausea medication and was able to do work from my new home office (my bed). Texts, cards, fuzzy socks, flowers, prayer shawls, and other thoughtful gifts continued to arrive as if to say, “You can do this. We are with you.” When today rolled around, my appetite was starting to return, and I felt like my old self. I was back to the office by the afternoon, and it was so good to see my co-workers and get back to “real life”.

With one round of chemo down and time to see the side effects through, I know now I can do this and what I can do to help manage through it. I would be lying if I said that 7 more rounds sounds a little daunting, but just going to take it one at a time. I was reminded by someone sharing a similar health struggle that four months will be over before I know it. And although I had a few dark moments this week, I was also reminded that cancer CANNOT take away my spirit and my essence (or as my old boss coined it my “Mary-ness”). That is here to stay.

XO- Mary

Chemo Round 1

Friday was quite the day. At 10:45a Brian and I marched our way to the Hematology Center of Michigan at Lemmen-Holton. I was ready to get started, but the day was honestly harder than I anticipated it would be emotionally. As some of my friends pointed out, it was quite fitting that my first chemo treatment fell on International Women’s Day, and I was definitely channeling the strength of the women before me and the women around me to get through this day.

When I arrived at the clinic, I was immediately struck by how sick everyone looked around me with skin ashen in color, seeming tired and smiles vanished. I felt completely out of place and praying that I would not become one of these “sick” people.

They quickly got my port hooked up with hydration and steroid medications flowing, followed by anti-nausea meds and folic acid (an agent that helps my particular chemo work more effectively). Then it was time to get the 5FU (aptly named) going. I will admit that at that moment I was fighting back tears and beginning to panic. This was really starting. There was no turning back. I have cancer, and I have to do this.

After a few deep breaths, I was able to settle in to a warmed blanket, Brian’s company, and some episodes of the Marvelous Mrs. Maisel. The time went by pretty fast, although it was hard to feel 100% comfortable. I was the newbie in the ward, trying to figure out the ropes and manage my IV pole and tubing while making my way into the bathroom (and trying not to feel like a fool). I just kept telling myself that I will get used to this, and it won’t be so bad.

I was set up with a pump for 36 hours of Oxaliplatin (my other chemo drug) and we were on our way home. I am still getting used to carrying the pump along with me, but it is pretty easy to get around, shower, and sleep. When I got home Friday we explained to the boys that they needed to be careful, but that it was still ok to hug and touch me. Noah wasn’t sure exactly what to do, so he just kissed my knee. My tears flowed.

Side effects on Friday and Saturday were pretty manageable. I felt a little off and nauseated, but was able to have a pretty decent Saturday, even walking a mile with Brian at the YMCA. Sunday has not been so great, but they have been working with me on a combination of meds to help. I am working to accept and adapt to my new normal one day at a time.

I could not do this without the continued love and support of my family, friends, and co-workers. You keep showing up day after day, and it helps to have people rooting for me.

I especially could not do this without Brian. I am pretty sure that he had no idea what “better or for worse” would mean with me from endometriosis to fertility treatments to two c-sections, post partem depression, and now this. He is my favorite person to be with sick or not sick, and I cannot thank him enough for helping to take care of me, while keeping up at work and with the boys. He has promised in old age to get me back for all of this. I will gladly accept.

XO – Mary

What’s in a Name?

It occurred to me that I jumped right into the content of this blog with the “I have cancer” bit. And I got so sidetracked with that, I forgot to tell you more about how this blog got its name.

For about as long as I can remember, I have loved poetry. It started with Shel Silverstein (“Oh Homework Machine”) and evolved to others like Emily Dickinson (thanks to Laurel Mason for sparking my interest in female writers and poets). Then when I got to high school, my freshmen year English teacher Mr. Tubbs assigned me an essay comparing the work and themes of e.e. cummings, Igor Stravinsky, and Pablo Picasso. It was from then on that I came to love e.e. cummings for all his modernity and crazy sentence structure. More than that, I was drawn to his content which often focused on love and intimacy.

As I was thinking about the name I should give this blog, the e.e. cummings poem “though your sorrow not” came to mind. For me, this poem captures the duality that is life… sorrow and joy, hope and fear. Without one, we may not fully enjoy and appreciate the other. This is not to mention the fact the experience of life and death are fully each our own. I am not sure I could explain this current cancer journey I am on any better. So without further ado, I give you e.e. cummings.

though your sorrows not
any tongue may name,
three i’ll give you sweet
joys for each of them
But it must be your
whispers that flower

murmurs eager this
i will give you five
hopes for any fear,
but it Must be your
perfectly alive
blossom of a bliss

seven heavens for
just one dying. i’ll
give you silently
cries the (whom we call
rose a) mystery
but it must be Your

XO-Mary

Preparing for Chemo

Today was a big day in prepping for chemo. In the morning I received my port. This is a procedure done in interventional radiology under heavy sedation and local anesthesia. Although in Mary fashion I was awake and talking to the doctor (comfortable and in no pain) the entire time. I cannot remember most of what I said and praying it wasn’t inappropriate.

During the procedure, a small plastic disc was placed under my skin in the upper chest area and was attached to a catheter tube that was threaded into the jugular vein. This port will allow the chemotherapy to be delivered in the best manner to the bloodstream, while also reducing the number of arm pokes I have to get on a regular basis. The port will show as a slight lump in the skin, and as my soon-to-be sister-in-law Jenn says, “will serve as my warrior badge”. I like thinking of it that way.

After the sedation had a chance to wear off, Brian and I headed down to our chemo education and meeting with the social worker and financial counselor. It was a lot of information, but honestly, much of it was really reassuring as the chemo therapy I will receive often has pretty manageable side effects. Today was a testament that knowledge is power. And I was so impressed with the way that the team at Lemmen-Holton gave me so many tools today as well as the permission to advocate for myself.

Not knowing exactly how chemo will affect me is a little scary and unsettling, but I am feeling positive going into Friday and will just take it as it comes. In the meantime, I continue to be so thankful for all the prayers, well wishes, cards, texts, and goody bags. I have my “chemo bag” ready to go with reading material, ginger chews, blankets, cozy socks, and chap stick. I am feeling so much love, and that I almost don’t feel worthy. But I will accept it nonetheless.

XO – Mary

The Journey Begins

Well, it’s not every Wednesday you are diagnosed with cancer, and there is no easy way to deliver this news. A week and half ago my gastroenterologist was performing a colonoscopy to look for signs of ulcerative colitis or Crohn’s disease. Unfortunately, she found a 3cm cancerous tumor at the top of the rectum instead.

Since then, life has been a crazy whirlwind. Within a matter of two days, I had met the surgeon and undergone a battery of labs, CT scan, and MRI. Scans have confirmed that the tumor has not metastasized to any other organs or distant lymph nodes, which is a huge relief. The tumor has, however, spread slightly in the fat and two lymph nodes just outside the rectum. This makes my tumor what they call a Stage IIIb. I know that sounds scary, but after meeting with my entire care team on Friday, they are very positive about the outlook for this given its relative localization.

Due to my young age and horrible family history, my surgeon and care team have suggested an aggressive form of treatment known as TNT (total neoadjuvant therapy). This will involve 8 rounds of chemo therapy using a drug called Folfox. I will receive this at the Spectrum Health Lemmen-Holton clinic every other Friday, and then go home with a pump for two additional days (queue the awesome fanny packs). After chemo is complete, I will have two straight weeks of radiation every day. Surgery with a temporary ileostomy will follow. Genetic testing this week will inform if other organs should be removed during the surgery such as ovaries, etc. As my surgeon said it, “We are treating a fly with a sledgehammer.” But if this course of therapy allows me my life and a chance to watch my boys grow up and grow old with Brian, I am all in.

The last two weeks have been very overwhelming with sobs over my Barium cocktail prior to CT scan and after touring the area in which I will receive chemo. But I appreciate that we caught this awful disease before it had metastasized. This is making me feel positive. I appreciate the care team I have behind me including an amazing surgeon, oncologist, radiological oncologist, dietician, and nurse navigator. I can already tell Carrie, my nurse navigator, is going to rock! I also have such loving family, friends, and co-workers who have sent flowers, prayers, well wishes, cards, and goodies. To all of you who have offered your support and told me your were in my corner, I cannot tell you how much this has meant. When I get on the other side of this, I will be spending every waking minute of my life tying to repay the kindness and show my gratitude to God and to my support system. And to my brothers, who helped me to have a sense of humor, I thank you also. I actually laughed out loud when my surgeon used the word anus on Friday – LOL!!

This week will be a big one… I have genetic testing and chemo education followed by port insertion and chemo to begin on Friday. It’s the start of quite the nine-month journey, and I thank you for coming along with me.

NOTE: After this blog was posted, it was learned that the tumor size was actually 4.5cm in size based on MRI results.

XO – Mary