We Know Those Waters

When I was going through cancer treatment a couple of years ago, on more than one occasion I would be talking to friend or coworker and while sharing a hardship they were facing, they would stop and say, “I am so sorry. I should not be complaining to you. You have cancer. My problems are small compared to yours.” I would always try and relay back that just because I had cancer it didn’t make their problems any less real or painful.

While in the midst of my own struggles, I have had friends and loved ones diagnosed with cancer. Some have died. Others I know have lost parents, children, and pregnancies. Some have faced addiction, lost jobs, or struggled to recognize life as they once knew it before COVID-19.

For whatever reason, I am the kind of person who has aimed to make sense out of life through poetry, prose, and music. And as I was recently reading the book, “Everything is Spiritual” by Rob Bell, I was reminded that not only are we not alone in our pain, struggles, and grief, but we are also connected by them. Rob begins to talk about the beginning of the Genesis where the world begins with chaos, formless void, and darkness hovering over the waters. He goes on to say this:

We know those waters.  Loss and pain and grief and wounds and not knowing what to do or where to go of how to deal with the agony of life.  We know those waters.  There’s Spirit in there, hovering, waiting to bring something new out of it.  This is why the people who inspire us the most always have been through those waters.  They’ve experienced the hovering.  They’ve seen that new creation.  There’s a mystery here, how the universe could be such an expansive place that the events we initially experience as heartbreaking and tragic and wrong could, given enough time, open us up and make us bigger and more loving and more grounded people.  The suffering doesn’t end the story, it unleashes a whole new story… That’s the question lurking there in all our dark waters, that the invitation that never stops coming our way, to see the whole of it to grow bigger, to expand along with the universe.  To learn all over again, that our bodies can include even this.

I found solace and beauty in this excerpt when I read it several months ago. I earmarked it. I’ve gone back to it. Today felt a little heavy for some reason, and I just wanted to share it. Because I know many of you are trudging those waters. And I have been inspired by so many of you who are working to see the new creation.

If there’s anything that cancer and COVID in the span of two years has taught me it’s that we are all part of something bigger. We are never alone.

XO-Mary

PS – This blog post is dedicated to my friend Lindsey (pictured here) who helped me so much with my own cancer journey and now is victoriously making her way to the other side of hers. Sisterhood does not need to be defined by blood.

Everything is Waiting for You

This week my scans, blood work, and circulating tumor DNA test were all clear for any sign of cancer. In 8 weeks, I will have been cancer-free (or as we say in the cancer world “No Evidence of Disease”) for two years. Today my oncologist told me that he didn’t need to see me again for twelve months, and that hitting the two-year mark meant my odds of cancer returning were greatly diminished. I walked out of the cancer center with a greater sense of relief today… a greater sense of victory. If I can stay on this path for three years, I will be deemed cured.

I have shared with all of you in previous posts that these last two years of my life have been challenging, recovering from chemo, radiation, and surgery, learning to live life without a major part of my digestive anatomy, and finding a new normal emotionally. Making sense of cancer, finding a renewed sense of purpose, and rediscovering myself in the aftermath of a serious whirlwind illness felt incredibly daunting. Oh, and then COVID was added to the mix.

But this week, someone urged me to read the poem Everything is Waiting for You by David Whyte. She said it reminded her of me and my journey. In this poem David writes:

Your great mistake is to act the drama
as if you were alone. As if life
were a progressive and cunning crime
with no witness to the tiny hidden
transgressions. To feel abandoned is to deny
the intimacy of your surroundings. Surely,
even you, at times, have felt the grand array;
the swelling presence, and the chorus, crowding
out your solo voice. You must note
the way the soap dish enables you,
or the window latch grants you freedom.
Alertness is the hidden discipline of familiarity.
The stairs are your mentor of things
to come, the doors have always been there
to frighten you and invite you,
and the tiny speaker in the phone
is your dream-ladder to divinity.

Put down the weight of your aloneness and ease into the
conversation. The kettle is singing
even as it pours you a drink, the cooking pots
have left their arrogant aloofness and
seen the good in you at last. All the birds
and creatures of the world are unutterably
themselves. Everything is waiting for you.

And as I rode the elevator down to the parking garage in Lemmon-Holton Cancer Center today after my appointment, I had this crazy change in perspective. What is before me is not daunting, it’s exciting. I beat cancer. I am healthy now. I have experiences I can leverage and a perspective to share. I remembered that I love to write. I have the freedom to seize new opportunities. I don’t have it figured out. But I am paying more attention. I am listening. I am watching – both to myself and to the world around me. I can (and will) choose to see my survival as a privilege instead of a cross to bear.

And thanks to all of you, I am not in this alone. I started this blog two and half years ago to keep my friends and family informed of my cancer journey. But sharing (and perhaps oversharing) my experiences and feelings turned out to be incredibly therapeutic for me. What I put out into the world came back to me tenfold in terms of the support I have received. I simply could not have done this without all of you.

This is not an end to the blog, but it does feel like the start of a new chapter… Stay tuned.

XO – Mary

The Giving Tree

Today was the memorial service for Chelsea. It rained, but not the kind of rain like the day she died in November. Rather, it was a soft rain of Spring and rebirth. Friends and family gathered to honor the woman that she was and her impact on their lives as a wife, daughter, sister, granddaughter, niece, neighbor, physician, and friend. I had not planned to get up a speak today, but it seemed wrong to leave having not said something about what she meant to all her fellow cancer patients that she helped and advocated for along way.

I have always been more eloquent in writing than in speaking in front of a crowd, but I did my best and asked the audience of friendly, wet eyes to bear with me. I told the group that I identified with a story told earlier about a little boy who anxiously awaited Chelsea to pick him up to walk him to the bus stop each day. I felt like the adult version of that boy, so selflessly guided by Chelsea. I talked about her intelligence, her wittiness, and how much I appreciated her friendship and willingness to help me and other colorectal cancer patients while fighting her own battle with cancer. I admitted that I hated only having two years with her and that I often spoke to her and asked her to send me a sign that her spirit was among us. But then I froze… And I ended by saying, “I guess I will be done now.” I regretted not being able to find just the right words in that moment…

As the service continued, I thought back to a text conversation Chelsea and I had a few months before she died. In a text thread, she told me that she was getting sicker and that she feared the end of her life was near. I told her that I couldn’t imagine a world without her in it. She replied by telling me that she was crying on the other end of the text thread. I told her I was doing the same. Since November, I have keenly felt her absence. I have navigated this world and the mark has left on me without her physical presence. But as I sat there today, I was reminded that all the people she loved and touched now carry a piece of her with us. I wish I would have thought to say that as I closed my remarks during her service today, but I figured it wasn’t too late to say it now.

Chelsea’s ashes were returned to the earth after the service today. On top of her ashes, a red maple tree was planted. I am not sure there is a better way for a fiery red head to be forever remembered. One of my favorite books growing up was Shel Silverstein’s “The Giving Tree”. In the book, a tree gives all that she can to a young boy until he is an old man, and she has only a stump to give him to rest. And in that moment, as the story ends the author tells us that, “The tree was happy.” It’s a beautiful metaphor for all that Chelsea was and all that she gave up to the day she died. Today, I believe the tree was happy. Chelsea was happy. And from time to time, I will go rest by that tree in the park, and remind her I am so grateful for everything she did for me and the lasting impression she has had on my life.

XO-

Mary

March Madness

This week, Shelley Irwin at WGVU radio gave me an amazing opportunity to do an interview to help raise awareness for colorectal cancer (CRC). In ten minutes, I literally put every ounce of energy, information, passion, and honesty that I had on the table. When it was over, I hung up the phone and sobbed. The preparation and the interview itself took so much out of me. I wanted to do a good job in memory of my friend Chelsea and for my fellow CRC patients and survivors. I was being given a chance, and I wanted that chance to count. And when it was over, I honestly cannot say that I have ever been prouder of myself for anything in my entire 40-year life than of those 10 minutes. Before I started to speak, I took a deep breath and asked Chelsea to be with me. I know she was.

Two years post-diagnosis, I am finding my way through cancer survival, and as I have noted in other blog posts, the emotional part is pretty difficult. I had naively thought that when the physical torture was over, I would just put this all in the rearview mirror. But it’s been really hard to put the experience away and live life as did before. March is colorectal cancer awareness month, so with all the messaging around the disease, a lot comes back. And in preparing for my radio interview, I relived things in my mind that were really hard. I am becoming more and more aware that my experience with cancer will probably never been completely in the rear view. At least not if I am using the gift of my life to be a voice and support system for others…

And I want to use that gift, so I am going to keep working through the emotional part and seek some extra help in that process. I have been trying to do it on my own, and it’s taking a toll on a lot of things in my life. I am going to keep writing, advocating, putting one foot in front of the other, and accepting my best rather than picking myself apart and focusing on all the things I wish I had done better or differently. It’s a process, but I am thankful to you all for your ongoing support.

When I was preparing for my interview this week, I had asked some of my fellow CRC patient friends what they wished somebody would have told them before their journey began. Especially those with early onset, said that they wished they had known the prevalence of CRC in young adults and some of the signs to watch out for. So, in case you didn’t catch the interview, I wanted to use this blog post today to share some of that information.

The Stats

Colorectal cancer is the 2^nd leading cause of cancer death in the United States (Colorectal Cancer Alliance).
And TODAY the fastest growing segment of CRC cases are between the ages of 20 and 29!!
People who were born after 1990 have a two-fold increased chance of getting colon cancer and a four-fold increase of getting rectal cancer than those born in 1950!
Unfortunately, because doctors aren’t typically looking for CRC in younger patients, symptoms are often misdiagnosed so young patients are typically diagnosed at later stages with poorer prognosis.

The Importance of Screening

The sharp rise in young onset is a large reason behind the decision to lower the standard screening age from 50 to 45 and if you have a family history, it may be even earlier than that.
But right now, during COVID, screening has dropped dramatically! According to the Colorectal Cancer Alliance only 1 in 3 Americans are up to date on their screening for colorectal cancer.
Colonoscopies can seem scary/embarrassing, but compared the experience of cancer, it is really not that bad. Due to cancer, I have had 3 minor surgical procedures, 2 major surgeries, 8 rounds of chemo, 30 rounds of radiation, and endless blood tests, CT Scans, and MRI’s.
There are also other less invasive screening methods your physician may use such as fecal tests and blood tests which can indicate if there is inflammation in the body.

Signs Not to Ignore

Pay attention to your body and your stools! If something does not seem right, speak up.
Blood in your stool
Unexplained weight loss
Change in bathroom habits- constipation, diarrhea, narrow stools
Persistent cramps or lower back pain
Fatigue
Feeling bloated
Anemia

Remember

Stage at diagnosis matters!! The 5-year survival rates for Stage 1&2 are 90.2% vs. stage 4 drops to 14.3%. Catching it early is KEY!
And the good news is that over ½ of all cases and deaths are preventable and based on risk factors YOU can modify such as smoking, unhealthy diet, alcohol consumption, physical inactivity, and excess body weight so leading a healthy lifestyle is critical, especially if you have a family history of CRC.

Large online disease communities like COLONTOWN can help you to connect with people who understand your journey and can provide CLINICAL/SCIENTIFIC and emotional support (for you and your family). Thanks to the educational resources and support I found in COLONTOWN, I learned about a drug therapy and circulating cancer DNA test I would NEVER have known about if I wasn’t a member of COLONTOWN. I took this information to advocate for myself with my medical staff, and they were VERY receptive. (www.colontown.org)
Local support groups – Through hospital systems in your area, Gilda’s Club, etc.
The chemo chair right across from you – It’s how I found a young mom just like me who was going through the same struggle (Chelsea Boet)

If you are a Colorectal Cancer Patient Where Can You Find Support?

In the radio interview this week, I think I used the word poop about 12 times and admitted to the listeners of West Michigan public radio that I took a picture of my poop and sent it to my doctor (insert hand slapping forehead emoji). But honestly, I am not embarrassed. That picture saved my life… And if I can impart anything on you it’s that you should never be embarrassed to be an advocate for your own health either!

XO- Mary

PS – If you want to take a listen to the interview, you can find it here: https://www.wgvunews.org/post/mary-hannon

Dear Chelsea

Today is a grey and rainy morning in Grand Rapids. It’s like the world knows it should be weeping. Last night my friend Chelsea passed away peacefully in her home after a two- and half-year battle with colorectal cancer. She was 37. Her story is not mine to tell, but I will say that she fought HARD. Until the end she was advocating for herself and other colorectal cancer patients. She was a daughter, sister, wife, mother, and doctor. She was living life on her terms, making as many memories as possible right up until the end. She leaves behind a husband and two small children.

She was also my friend. Shortly after my cancer diagnosis, Chelsea reached out to me. We had two mutual friends who suggested we might connect given that we were both young, professional mothers facing colorectal cancer. From then on, she was a constant support and sounding board whether it was in the chemo chair across from me, the hospital room down the hall (literally), or via text. I once referred to her as my “cancer mentor”. She laughed and said, “How about we call it cancer whisperer?”

Several weeks ago, I got a text from Chelsea that I had been preparing for and dreading. She was stopping chemotherapy treatment and starting Hospice. I stopped by her house shortly after, and she gave me the best hug. As I closed the door to her house behind me, it dawned on me that might be the last time I would see her. It was.

Before her last breath, I needed her to know how much she meant to me, so I sent her a letter. I thought about sharing that letter with all of you, but decided it belongs to just the two of us. I now have no regrets… except that I now live in a world that Chelsea doesn’t.

I will never know why some of us get the chance to live beyond cancer and others don’t. It will forever be a source of guilt for me. But in honor of Chelsea, I will not take for granted this life I have to live, and I will not stop advocating for and supporting other colorectal cancer patients. I will not delete her text thread, stop collecting memes, or finding joy in llamas.

And as I said to her in my letter, “I carry your heart with me (I carry it in my heart).” Please know that I will carry your heart with me always. You have left a lasting impression on it and on my life.” Chelsea, like your tattoo said, while on earth you were the storm. Now you can rest in peace.

XO- Mary

Scars

Hi Friends,

It’s been awhile! The last time I wrote to you, I was just coming off my ileostomy reversal surgery. I was so grateful to be alive and cancer-free. Marching out of the hospital in my Uggs and Christmas pajamas that December day, I was expecting to “ride off into the metaphorical sunset” to my old, typical life.

But I wasn’t as fully prepared for what was about hit me emotionally or physically in the weeks that followed. Having had an ileostomy for a couple of months many of my pelvic muscles were weak and out of practice. This is not to mention that the piece of colon pulled down to make a “rectum” after mine was removed, didn’t really “know how to be a rectum”. I was a 39-year-old woman wearing adult diapers and having to visit the restroom OFTEN (in the beginning it was not uncommon to make 30-40 trips to the bathroom in one day). This condition is called LARS (Lower Anterior Resection Syndrome). I was told by my surgeon that for some people this is something that resolves itself in a matter of months or a couple of years, and for others it never gets better and they resort to a permanent colostomy. I thought I may never eat a raw fruit or vegetable again. Luckily for me, I was able to find a regimen of Metamucil, Bentyl, and pelvic floor PT that has made a dramatic improvement. Things aren’t perfect, but I have much better bowel control and can live/eat pretty normally.

Worse than the physical ailments, however, are the emotional ones cancer has left behind. After being out of chemo treatment for some time, I was no longer actively fighting cancer with powerful drugs like chemo. I felt extremely anxious about cancer returning. I found myself obsessing over the food I was putting in my mouth, the supplements I was taking, etc. Going into my first post-surgery scan, I practically came unglued. The gravity of what I had been through was coming down heavily on me. And I was also feeling tremendous survivor’s guilt knowing that other patients I had met during my treatment were still fighting very hard battles with more grim prognoses.

I have been able to breathe a little easier now that I have had two CT scans and two blood tests looking for residual cancer in my blood which have all come back 100% clear. Emotionally, I have good days and bad days. Some days there are triggers… The smell of the IV tubing when I have to visit the Cancer Center for a blood draw or oncology appointment, the death of Chadwick Boseman, catching a glance at the fanny pack that I used to hold my chemo unit, seeing a picture of myself taken right before I was diagnosed (and wanting to scream through the photo, “YOU HAVE CANCER!!!”)… It’s a journey, and it probably won’t be one that always has an upward trajectory.

But there are victories to be sure. The clear scans. Advocating for myself to utilize a new ctDNA blood test as part of my ongoing surveillance (and hearing that my oncologist is now using it in his treatment of other cancer patients). Adding most fruits and vegetables back into my diet. Getting back to an active lifestyle. Connecting with other cancer patients and survivors on Colontown (an online support group). Being there for Luke to start Kindergarten. And most recently, to get my port removed.

I am not without scars… some of which are visible and some of which are not. Since December I have been on an impossible quest to find the “old me”. Until recently, it didn’t dawn on me that I would never find her. She’s gone. Some things at the core will never change, but I must find a way to live with the heaviness I was dealt. To make sense of it. To make meaning of it. To make the suffering count. To not take things for granted. I am surer today of who I am and what I am capable of, while at the same time more vulnerable. I am healthier. I am stronger. I am learning how to best use my voice. My faith is deeper, albeit more complex. I am grateful to be alive. I am exploring the new me.

XO – Mary

I Pooped Today!

Hi Friends!

There is no apology that can make up for how long it has been since I have written you last. The truth is that I was struggling over the last couple of months to find the words that typically come so easily to me. After my lower anterior resection (LAR) procedure in September, I was forced to really slow down for the first time in nine months. And with that time to slow down, everything that I had been through in last year came crashing down on me like a ton of bricks… the sale of my company, my uncle’s death, my grandpa’s death, and then last, but not least, cancer. Following my LAR, I had six weeks off work, which I really took to heal physically and mentally, processing all the above.

Having said all that, I do apologize for my time away, but I am excited to share an update with you now. So here goes…

Let me start by backing up to my September LAR procedure and the results. That procedure took a little over 4 hours, and in that time, Dr. Dujovny meticulously removed almost my entire rectum (including the tumor), a small portion of the colon, and 41 lymph nodes in the pelvis. The pathology that came back from this procedure was so promising. The complete tumor was removed with negative margins. Post-chemo and radiation, my tumor had been downgraded to a Stage 2 (insert raise the roof emoji), which was also a very positive development. The mesorectrum was completely intact, which tends to be affiliated with a lesser risk of cancer spread, and out of 41 lymph nodes removed only one was positive for cancer. Talking with the doctor about these results post-surgery, I was assured that this was an excellent outcome and that I could be very hopeful about living a cancer-free life in the future.

As part of the LAR procedure, I received a temporary ileostomy (AKA “poop bag”). This was also an adjustment, but I received great education at the hospital and had excellent support from home nursing to help me quickly get the hang of it. And of course, my boys just loved the idea of me having a “poop bag” attached to my body (so much potty language and humor).

Knowing that I would need help and support in my recovery, my in-laws dropped everything and came from Kansas to live with us for three weeks. I cannot thank them enough for their help with the kids, the house, the cooking, getting me to appointments, and reminding me to take it easy and rest (which I typically do very poorly). This is not to mention the countless loads of laundry, meals, and childcare that my parents helped with before and after my in-laws’ visit. I have told them it’s proof you are never too old to need your parents.

After my initial 6 weeks of medical leave, I was back to work with the news that I would be able to have my ileostomy taken down in early December. I also had a visit with my oncologist, who based on my scans and surgical outcome, was able to give me the diagnosis of REMISSION. There will be five years of regular scans and bloodwork, and I will have to get through all of those before we can say I am CURED, but for now, I will take remission to the bank. When I initially got that diagnosis, it didn’t sink in right away, and it felt almost too good to be true. It took me a minute to put it in writing for fear of jinxing it. The prospect of the “what if” will probably be in the back of my mind for some time, but I keep trying to focus on all the positives.

That brings me to this week… On Monday, I had what is hopefully the final procedure in this journey to “take down” my ileostomy. Overall, this surgery has been a much easier recovery than the first. My pain has been very manageable, and each of the last three days I have been able to walk a mile around the floor tugging along my IV pole adorned with tacky blinking Christmas lights. As my colon is learning to function properly again, I have had some hard days with gas and nausea, but I have been under the care of such amazing nurses and doctors at Spectrum Blodgett who have worked tirelessly to get me feeling comfortable and ready to come home. All week, they have been encouraging me, empowering me, and reminding me to celebrate the small successes (ie. “I pooped today!”).

Forced to slow down once again, this week I have been taking in the season looking at the Christmas lights outside my hospital window and watching Christmas movies while also making the time to catch up with family members, connect with other patients on the floor, and to acknowledge all the things I have to be grateful for… and hopeful for…

I will be discharged today, walking out free of cancer and ready to take on 2020 with a new sense of myself. And there is probably not a better time to do it than in this Season of Hope. People have recently asked me how I have made it through the last nine months with a positive attitude. I think it’s partly how I am wired, how I was raised, and the support I have received from work, the medical community, friends, my parents and in-laws, and extended family. And some days haven’t been all smiles. But attitude it also something I can control in a world full of many things I can’t. And by shifting my attitude and my outlook, it is amazing how much the universe, God, and all of you have given back to me.

XO – Mary

The Day Awaits

Today was my last day of work for the next six weeks. I am gearing up for surgery Monday afternoon, and shifting my focus to what is hopefully the last leg of this cancer journey.

I would be lying if I said that I wasn’t nervous about the three-hour procedure as well as the recovery and ileostomy that will result, but like every other step in this process, I know I have to do it. And better to do with a positive attitude than a dismal one.

I would also be lying if I said my head hasn’t gone to some scary places in the last couple of weeks. I think I am almost panicking a bit that my treatment is almost over. And then what if it comes back? I actually asked my oncologist last week if it made sense to get some additional chemo after surgery just as an “insurance policy”. He and my nurse navigator Carrie assured me that I didn’t need more chemo at this point and urged me to stay positive. I needed that reminder.

It’s shortly after that, where I came upon a piece of writing seemed all too timely. As part of my book club at work, I was reading a chapter of “More than Enough” by Elaine Welteroth. In this chapter, as Elaine was reflecting on some of her personal experiences, she wisely noted, “What’s done in the dark will come to light”. And then it dawned on me that I was coming to the end of this darkness. And I believe that I will emerge healthier, more appreciative, stronger, and more courageous than when I started this journey last February. I will have found my own personal light.

When I was a freshman at Notre Dame, I received a prayer book at Freshman orientation from my rectress Nancy Cook. Because I am very sentimental (and probably a bit of a pack rat), I have kept this book with me and still look at it from time to time. Several nights ago, I went back to a prayer I had ear-marked back in 1998. Little did I know, it would be so relevant to my life 20 years later. Called, “I am a Mirror”, it goes like this:

God of Light,

I am a mirror, giving back to you

the opposite and reverse of all you give to me.

Make me a glass- stained glass – or a prism.

Let me take your gifts and diffuse them

in splashes of dancing color,

of brilliance, joy, and delight.

Amen

So here’s to Monday, saying good-bye to cancer for good, and getting a point where my mirror is dancing with color and I can share my light.

XO-

Mary

PS – Surgery is scheduled for 4p EST on Monday. I will accept any prayers and positive vibes you can send my way during that time. Brian and I will keep you updated on how things go.

Straight Outta Chemo

Since the last time I wrote, I hit a very important milestone in my cancer journey: my last chemo therapy treatment. Overall the treatment went smoothly, and since I wasn’t getting the Oxaliplatin on round #8, it made for a pretty quick visit as well. Lucky for me, I was placed in the clinic right across from my favorite cancer buddy in crime, Chelsea Boet.

As my infusion was winding down, I moseyed over to Chelsea and the two of us carefully choreographed a hug, keeping our IV poles, pumps, and ostomies from tangling – LOL! As I hugged her, I was overcome with emotion. I was so grateful for her friendship and mentorship through this journey, all while she is fighting her own battle. I was grateful for my amazing chemo nurses. And I think I was also relieved and in disbelief that I was done. I had trouble getting a hold of my tears.

After also hugging (and crying on) my nurse Alex, Brian and I headed over to infamous “bell”. This is a bell that cancer patients ring when they have completed their chemo therapy treatment. But I will be honest. I was a little scared to ring the bell. It felt like a jinx. The bell is also centrally located in the chemo clinic, and I wanted to be sensitive to the fact that hearing the bell ring for somebody else could be really hard, especially if the end to chemo for them is indefinite. So I took my picture standing next to it with a tear-streamed face and called it day.

file1-2

A week after finishing chemo it was time to go back in for a round of scans. This was both exciting and nerve wracking, since my last set of scans was in April. In this round of scans, I received an MRI and CT Scan. The MRI gave very detailed photos of the rectal tumor itself. It showed that the tumor had shrunk by 1.5 cm and that it had not spread into the fascia of the rectum (thumbs up… this gives the surgeon a better chance of getting clean margins when removing the tumor). The CT confirmed that the cancer had not metastasized to any other organs (also great news). It did, however, show a couple of enlarged lymph nodes in my chest around the bronchial area just above the lungs. From the scans it was unclear if these lymph nodes were cancerous, which meant I would need to undergo another procedure called a bronchoscopy the following week.

During the bronchoscopy, I got a nice little Propofol nap, while a pulmonologist put a tube with a camera down my airway to examine and biopsy the lymph nodes. It was a little stressful to have to undergo an additional unplanned surgical procedure, but everything went smoothly, and results from the bronchoscopy confirmed that the lymph nodes were not cancerous.

So needless to say, it’s been another crazy couple of weeks, but the good news is that I am now marching toward the last step in my journey, which is surgery. I met with the surgeon last week, and we have a plan to do a lower anterior resection (removal of rectum and sigmoid colon) on September 23rd. I will receive an ostomy during this procedure, which will be reversed in about three months. I am nervous about the recovery from surgery (5 days in the hospital, 6 weeks off work) as well as managing the ostomy, but like everything else, I will take it one day at a time. And that will be one day closer to full recovery.

At this moment as I am reflecting on the last few weeks, I continue to be completely overwhelmed with gratitude. I have so many people to thank, and it’s hard to find the right words. This is especially true when it comes to my husband Brian. He has been with me at EVERY chemo treatment and every surgical procedure (the poor guy stayed with me while I had a sigmoidoscopy… that’s love). When I was hospitalized for the weekend, he somehow balanced watching the boys, while also keeping me company and saving me from hospital food. He has taken on the brunt of cleaning, cooking, and childrearing for the last six months, when I simply did not have the energy to do it.

When Brian was 24 years old and promised to love me and honor me in sickness and in health, the poor guy had no idea what he was in for. But he has more than lived out his vow. It was with this experience in mind, that I wrote the speech I gave at my brother’s wedding. I will leave you with this excerpt that sums up Brian and why I am so lucky to have him:

As I reflect on this wedding day today, it has me recollecting the many times I have heard people say that marriage is hard. But honestly, I think that actually it’s life that is hard, and that marriage is a gift. How lucky to have a partner that you can be with in the great times and horrible times, and that has your back no matter what? How beautiful to have someone that knows you at your best, but also loves you at your worst?

To Brian, and to all of you, thank you for sticking with me. Plain and simply put, I am grateful.

XO-

Mary

Nobody Puts Mary in the Corner!

I have to apologize for the tardiness in this blog post. The last six weeks have been such a whirlwind. And within the matter of the last 14 days I have had inpatient chemo therapy, my company sold to private equity, my brother got married, my grandpa died, and I completed (sort of) my second to last outpatient chemo. With all of this going on, I am just trying to keep my head above water and breathe.

At the end of July, I completed 28 rounds of chemoradiation therapy. That encompassed four chemo pills everyday of a drug called Xolota and 3D radiation treatments. The treatments themselves where painless and the staff was nice (they knew that warmed blankets were soothing to me and always had them ready each day when I walked in). A few weeks into radiation treatment, I did begin to suffer from fatigue, bowel issues, and a mean diaper rash, but all of those symptoms are slowly fading now.

After a couple of weeks, it was then time to start my last three chemo therapy sessions. Given that my last round of chemo in May resulted in an allergic reaction to the Oxaliplatin, my 6^th chemo was given inpatient at Spectrum Health during a three and half day stay. It was LONG three and half days, including unexplained fever and a bout of pleurisy, but I received excellent care from the oncology nurses that weekend, and was able to win the challenge over Oxaliplatin with lots of premeds and a careful and long titration of chemo drugs. As my oncologist, Dr. Chandana, came in to release me, he was feeling confident that I could finish out my last two chemos in the outpatient clinic over a longer infusion time. He also shared with me that he was really encouraged and excited to see my next set of scans, with hopes that the tumor is gone or significantly smaller going into surgery.

Fast forward two weeks, and I was back in the outpatient clinic yesterday, feeling positive. Unfortunately, 30 minutes into my infusion of Oxaliplatin, I began to have an allergic reaction again – shortness of breath, lobster red face, rash, etc. They quickly got a regimen of Benadryl going, and I was doing fine within minutes. Given that I reacted again, we will no longer be able to continue with the Oxaliplatin. But no need to worry. I am still able to finish out these last two rounds of chemo with my infusion pump of 5 FU. This is the heavy lifting drug that will make the most difference in my outcome, so this is very reassuring. As my nurse recently explained to me, “Your chemo regimen is like a cupcake. The 5 FU is the cake, and the Oxaliplatin is the frosting. But the 5 FU is doing 95% of the work.” Given that Oxaliplatin is one of the more toxic chemo options, it’s just one that not everyone can tolerate. But I was able to get 5 and half solid rounds of it, so I will take that to the bank. I am a little discouraged that things didn’t go according to plan today, but I know this is something I cannot control, so I am moving on.

And I have to say that in the last few weeks, though crazy, I have had some amazing and positive moments. A few highlights:

One day I arrived at work and my co-workers had arranged to wear purple shirts in my honor. They paid their own money to wear shirts that said, “Nobody puts Mary in the corner #yougot this”. They decorated my office with selfies of employees wearing the shirt, a big sign to match the shirts, and shirts for my husband and boys. As I walked around the office and production floor, I sobbed and received tons of hugs. I work with some of the most caring people, and it was so uplifting to have 100+ people cheering me on.
Our company recently sold to a private equity firm and will now be a standalone company once again. Though I will miss my Hillrom collegues greatly, this is a really positive thing for the Aspen team. In my 12 years with Aspen, we have never been in a stronger place operationally, and now we have an investment partner ready to support meaningful growth. On Day 1 after the close of the sale, we had a celebration with our employees, and the environment was electric. All the Aspen red and smiles in the building made me so proud. I haven’t been so excited to come to work in years. Aspen’s back baby!
My brother David and Jenn got married. Amid many other hardships for my family this year, this event was such a bright spot. Jenn was gorgeous, the church was gorgeous, and the reception site was gorgeous. Both Jenn and Dave seemed so happy, and the love in the room was contagious. I have also not danced so hard in my entire life. Backstreet boys, N’Sync, Whitney Houston, and Usher were all in the lineup. We were surrounded by close friends and family, including my Grandma and Charles that flew in from LA. My heart was full.
Although my Grandpa Frank’s death was a sad event, I had lots of great moments with him over the past 6 weeks. Two days before he died, I paid him a visit, and he was still able to speak and open his eyes. He was weak, but I was able to give him one last kiss and tell him I loved him. He told me he loved me back. He had 93 wonderful years, he knew he was loved, and he was ready to go be with his God. I am not sure I could ask for more out of such a scenario. I lived to be almost 40 with all my grandparents in my life. For that, I am so lucky.
I have been surrounded by the most amazing caregivers… When I left my radiation tech staff, I got into my car and cried (How demented, right? I should have been elated). They gave me a certificate when I finished by treatment and lined up for hugs. Then there is my oncology night nurse Lindsay… She made sure to ask for me to be her patient each night of my inpatient stay for the chemo rechallenge. She was so caring and smiley, and the consistency of having her there each night was really comforting. I was amongst a lot of sick people on my floor, which was hard to witness, and she kept me thinking positive. This is not to mention that my nurses on the infusion team at Hematology Centers of West Michigan are just the bomb. Lindsay, Alex, Claire, Hillary, and the MA Mike have now helped to save my life TWICE given allergic reactions to chemo. They simply rock. Last but not least, I have Carrie Gillette, my nurse navigator who is my bulldog and Dr. Chandana, my oncologist, who is my cheerleader. What a smart and creative doctor he is. He is the one who keeps reminding me that we are doing everything in our power to get to a CURE.

So, as I reflect back on the last few weeks, I am going to hang on these positive notes. Yes, I have cancer, but I am so lucky in so many other ways. And there is light at the end of this tunnel. I have ONE MORE chemo in two weeks and then onto surgery in September or early October. I promise to keep you all filled in. But in the meantime, thank you all for the things you have done to support me and make my life full and beautiful. Oh… and I will continue to live by the motto, “Nobody puts Mary in the corner”.

XO – Mary