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.

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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

Chemo #5ish

Well, at some point it was probably inevitable that I would face a challenge or a setback in my cancer treatment, and last Friday was that point. About 30-45 minutes into my chemo infusion, I suffered an allergic reaction to the Oxaliplatin (one of the two chemo drugs I am taking). My face became bright red, I was having trouble breathing, and my heart rate was 148! I thought maybe it was just in my head, but then Brian took note of my horribly red face, and I knew something must be off. Luckily I was in the care of great nurses, who knew exactly what they were dealing with. They immediately unhooked my chemo and administered IV Benedryl and steriods. Within minutes, I was feeling better, albeit sleepy and unable to make a sentence with thinking very hard about it first (that IV Benedryl is no joke)!

Some have asked me if this it is normal to have a reaction 5 treatments into the process. I had the same question, and the nurses told me that sometimes it isn’t until the drug has built up in a person’s system after several rounds that they face a reaction like this.

After this episode, they stopped my Oxaliplatin infusion for the day, but I was able to go home with my 5FU pump and at least continue with that part of the treatment. My oncologist happened to also be onsite at the time of the reaction, and he felt it best that we switch gears for a bit. This will mean 6 weeks of radiation treatment 5 days per week. After that, we will finish out my last three rounds of chemo while admitted to the hospital, so I can be carefully monitored. They will infuse the chemo more slowly over 8 hours and administer IV Benedryl and other steroids prior to the treatment.

I will be honest, that it was a little bit mentally hard to switch gears on the treatment plan, but I know this is the best thing. It is also hard to know that I am up against 6 straight weeks of radiation. The side effects could be different from day to day and become more severe over time. I am a bit nervous to think about navigating my work day with radiation and the impending side effects – some of which include some bowel issues. But my co-workers have been VERY supportive, and I will just take it day by day.

I have my consultation with the radiological oncologist on Wednesday and should know a lot more after that. At that point, I will either be more or less nervous. We will see – LOL.

Over the last couple of weeks, there were days that I wished I could forget I have cancer for awhile, but it always seems to be in the back of my mind. However, at the same time, after recovering from my allergic reaction, I have felt pretty good physically. I have been able to enjoy the zoo with my boys, celebrate my friend Katie’s 40th birthday (she was kind enough to bring the “party” to me and didn’t mind that my 4-yr-old joined in), and had an excellent Mother’s Day starting with family time and ending with yoga. For these things, I am grateful. I am choosing to continue to focus on gratitude because at the end of day this could be so much worse and the good moments are still outweighing the bad.

I recently read Man’s Search for Meaning by Viktor Frankl. In this book, he says, “The way in which a man accepts his fate and all the sufferings it entails, the way in which he takes up his cross, gives him ample opportunity – even under the most difficult circumstances – to add a deeper meaning to his life.” In this journey, I am allowing myself to feel sad, angry, and defeated, but I am also putting that in its place. I am thinking hard about how I have accepted this fate and am embracing the opportunity to understand how it will strengthen me and add depth to my life and my being. This is yet to be seen, but I am looking forward to beating this so I can see the result.

XO – Mary

PS – A piece of good news! CT Scan results post Chemo #4, show no metastasis and tumor is stable (so no further growth). Woo hoo!

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

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