The Lady on the Bus

Chemo resumes today. If you are inspired to send any prayers or positive thoughts, please do. No pressure, but they make a world of difference and I am deeply grateful.

It was wonderful to be off chemo last week. Tiron and I got to travel to Arizona with the boys. Not only did we enjoy our escape from the blizzards in Boston and our stay at a resort in warm weather, we attended a wonderful and generous three-day series of parties hosted by friends to celebrate their birthdays and filled with the love of so many family and friends.

Occasionally during the festivities, I wondered whether I could ever believe that I would be well. I know that this belief is important, but I don’t know how to “make” myself feel that belief in a genuine way. I prayed for some way, some insight, something.

On our final morning at the resort restaurant, I bumped into Eric. Eric and I met this weekend for the first time. We barely spoke because there were just so many old friends to catch up with and new friends to get to know, but Eric clearly exuded positive energy and optimism and seemed to be easy to talk with and comfortable to be around.

That last morning, standing at the breakfast buffet, we shared small talk, then he told me that his best friend was diagnosed with pancreatic cancer. I started to feel my internal defenses rise against another story of loss but something made me trust him so I listened as he continued.

Eric received the news on his voicemail. Before he could return the call, he sat on a bus next to a lady who, unprompted, told him how she was once diagnosed with a specific type of pancreatic cancer (which he relayed but I don’t recall) and recovered.

At this point, he knew that his friend would be well, and, soon after that, he was able to call his friend and speak to him speak from a different place, from hope and optimism and an inner knowing that things could and would get better.

They later learned that his friend indeed had the same cancer as that woman, and though the road wasn’t easy, he recovered and is healthy and cancer-free today.

Eric talked a bit longer with me about my diagnosis. He shared his contagious optimism about my improving health, admitting that it doesn’t mean that the path ahead will be straightforward or easy, but again saying I am moving toward health and I can heal from this. He used the word “believe.”

I felt like Eric was my lady on the bus. Something inside of me shifted to believe that good health is not only possible, but possible for me.

Thank you for sharing your positive energy, your connections, your friendship and the friendships of others. Thank you for your prayers on my behalf, and for keeping me company on this amazing and sometimes crazy ride.

Love,

Marie

04 It’s Going To Be Alright [Album Version]

Miracle stories

Normally I would have chemo this week, but it is school vacation for the boys so I’m skipping it.

When I first entered chemo world, I adhered strictly to the schedule. The doctors and I were gunning for a cure, so we all followed the most promising regimen according to the schedule that was tested in trials.

After a couple of recurrences, the doctors and I began to veer further from the tested path. The doctors focused on chemo cocktails and quality of life while I focused on living with cancer, which was a new idea for me.

As I researched, I read about and then began meeting people who were diagnosed with stage IV cancer (many types) and given only months to live, but years later, they were quietly going about their lives, not only feeling good but cancer-free. They provide powerful examples of what is possible.

I LOVE these stories. They literally keep me going. Some of you have shared them, about your family members or yourself, and I replay them in my mind and my heart like favorite movies. Thank you.

I am currently fully confident that I can live with cancer (something I couldn’t have said a few years ago). My next goal is to reach the place where I am that confident that I can be cured, and these stories help me to believe that.

Cameron Von St. James generously shared his family’s story with me and asked me to post on my blog, so that others can also know that there is always hope, regardless of what anyone else says.

My Struggle with my Wife’s Cancer Battle

My wife has remarked a number of times how she can never understand how difficult it must have been for me when she was diagnosed with mesothelioma. I talked to her briefly about this only once before, but through this writing, I hope to share my experience with people who may be going through something similar.

My wife and I had been experiencing unprecedented joy because our first child, Lily, was born about three months earlier.  Our joy was cut short all too soon. When the doctor gave my wife her diagnosis, she cried and asked me if I thought we would make it through this ordeal. We would learn a little more about mesothelioma in the doctor’s office that day, and what we discovered terrified us.  Mesothelioma is a rare and extremely deadly form of cancer, and we were told that most people who are diagnosed do not survive for more than a handful of months. But, my wife and I were determined that she would not be just another statistic.

Having a new baby under the best of circumstances is wonderful but also physically exhausting. Managing my wife’s medical appointments and getting up the learning curve with her diagnosis added to that. On top of this, I was mentally and emotionally exhausted because everything happened so quickly. One minute, we were excitedly preparing for Lily’s first Christmas, and the next we were being told that Heather would soon be fighting for her very life.  However, I knew that my wife and daughter needed me; therefore, I had to make sure I was prepared to be there for their support.

During this time, I was so angry with everyone.  I would often yell profanities at anyone who crossed me. I felt that my family was being cheated, and it wasn’t fair that we had to go through this. I knew that I could not continue to be as angry as I was, I needed to get my emotions under control in order to be there for my family.  Furthermore, I did not want my wife and daughter to see this anger.  I had to be their support system, especially my wife’s support system, and I knew anger would prohibit me from being there for them.  It took a lot to come to terms with our situation, but in the end I simply had to realize that fair or not, these were the cards that we had been dealt.  All we could do now was stay together and be strong, and fight as hard as we could for Heather’s life.

The additional responsibilities that I now had seemed to be much more than I could handle.  From driving my wife to her appointments, taking care of Lily, and taking care of the rest of our home needs, I truly felt overwhelmed.  I had never been one to prioritize things, but that soon changed. I knew that I needed to get organized and make a plan, or I would soon be consumed by all my responsibilities.  I started managing my time better, making lists and tackling the most important tasks first.  I also had to be willing to delegate certain tasks to others. Our friends and family stepped in to help, and I had to learn to let go of my pride and accept their kind offers.  Once I did this, a huge weight was lifted from my shoulders. However, even with their help, there were still times when I simply felt overwhelmed.

I can clearly remember how stressed I was when Heather flew to South Dakota to be with her parents and Lily. Heather stayed there for two months because she needed the rest to be able to handle her next round of mesothelioma treatments, which would include chemotherapy and radiation.  I had to stay behind to work, as the bills were piling up and the only way to keep our family above water was for me to stay at my job. Furthermore, Heather would require very attentive care during her recovery, and I would not be able to provide her with that while working full time.  I wanted to be by her side constantly, and being away from my family was torture, but I knew that the best thing I could do for them during that difficult time was allow Heather’s parents to step in.  They were incredible and we can never thank them enough for all the support they gave us.

One weekend, I wanted to see my wife and daughter so desperately that I drove through a snowstorm for 11 hours at night.  I knew that I could only spend a few hours with them before I had to turn around and make the same 11-hour trip back home, but it was worth it.

Being away from my wife and my daughter was so hard.  However, I know that it was for the best.  With them being away, I was able to continue to make a decent income.  If they were home with me, I would have had to quit work to take care of them.  These choices were so hard, but I am so grateful that life allowed us to have a choice in these decisions.

My wife’s mesothelioma diagnosis was hard on me emotionally as her husband and physically as her caregiver, but I learned that with family, friends, and the ability to make choices, we could get through anything. Through all of our struggles, Heather is still here and still healthy.  After her treatment and recovery, she has beaten mesothelioma and has been cancer free for nearly six years. I hope that our story can be a source of hope and help to those currently battling cancer.

Every word is a prayer

Again, I cannot describe my gratitude for your prayers and positive thoughts and the measurably positive impact they have on my life. Even if you don’t pray, your words and thoughts have impact and power that I can feel. Thank you.

Yesterday, I found myself in an hour-long conversation with our parish pastor. While that may sound like a common event in my life, it is not. Not because of him; he is a pretty cool guy. He is from a large Irish-Catholic family, has an easy sense of humor and is comfortable around people. Before he joined our parish, he was the priest who worked with oncology patients at MGH (while I was there). He seems to be around my age, so he doesn’t fit the mold of the authority figures from my Catholic school days.

But I continue to carry with me the image that priests are unapproachable, or at the very least, only meant to discuss “big” things, so I was surprised to find myself talking with him for so long. He was probably surprised too, but for a different reason. He was having one of those days where he didn’t get to even the first thing on his to-do list. At 4:00 p.m., he was about to finally start tackling that list when I stepped into his office “with a quick question.” I don’t think talking with me for an hour was on his list.

Regardless, he stopped and made time as our conversation unfolded. One topic was how children learn their faith.

Though I grew up in a Catholic family, we aren’t exactly a group of holy rollers. All of us went to Mass at least once a week, received the sacraments, and got married in a Catholic church by a priest. We baptized our children in the church and held Catholic funeral masses for our grandparents. But outside the formal structures, we don’t talk about religion or pray together, and we only say grace together before meals on special holidays. Our general beliefs were kind of assumed.

I live in a different environment now. In fact, I crafted an entirely different environment for my family and me where we used to joke that science was our religion. Though I may have morphed over the past few years, returning to my faith, that doesn’t mean that my family has been similarly inspired. I teach religious ed to kids at our church, but I have little clue about helping my children grow in their own faith, outside the formal structure of religion.

When my friend Genevieve talked about the way her grandmother wove her faith into their daily lives, I felt myself say, “Yes! THAT is how I want to be!” I want my children to be able to know God and access that part of themselves. When they are older, they can make their own decisions about the role of faith in their lives. While they are still young, I want to do my part to show it to them.

Father Thom suggested starting small. He noted that when you pray, God will meet you where you are. He will take what you offer and work with that. He suggested maybe just saying grace before a meal.

Ha, my internal voice said. We barely pause before we dig in. Besides, I have an agnostic husband and one son who insists that he does not believe in God. I was open to the possibility of it happening. I just had no idea how it would.

He and I didn’t pray during this conversation. We just talked. When we finished, I picked up my son from swimming. It would just be the two of us that night – me and my “I don’t believe in God” son. We were talking about his day as we sat down to dinner. When I took my first bite, he suddenly stopped and said, “Mom, we should say grace.”

Accepting the good

CT results good – everything stable. Of course, I had to ask whether there was any exception, but no. The doctor also reminded me that these are tiny.

Big exhale and a thank you for hanging in there with me! PLUS….assuming everything stays stable OR better yet, improves in the next 8 weeks, it will be time for a chemo vaca. Woo hoo! So keep those good vibes coming!

John of God will be in Toronto March 15, 16 and 17. I am told that the experience is different than in Brazil but still quite powerful in its own way.

http://johnofgodlive.gailthackray.com/live/canada/program-info/

A friend of mine has an extra ticket. If you might like to go, let me know and I will share her contact information with you.

Right now, I am sitting in a chair in the infusion room, waiting for chemo.

Before coming to Dana Farber this morning, I was out with my son. We were introduced to a facilities manager and as that man walked away, someone said, “He knows more about this building than anyone else.”

Meaning to be friendly and conversational, my son responded, “Well, not everyone. The architect knows more.”

I cringed, knowing full well that whatever bothers me in someone else is usually something that bothers me in myself. Actually, my first tendency is to blame my husband, but I had to admit my part it in. It just feels a little better to share the blame. Plus, I’m sure we model this conversational style for our children, looking for the exception to any fun fact they discover, and then helpfully pointing out the flaw in their thinking. I also do it with my friends.

Well-meaning, happy person: “Look, the sky is so blue today.”
Me: “Yes, except for that one puffy cloud over there.”

Or

Cheerful dinner companion: “Dinner was really good.”
Me: “Overall, yes, but the vegetables were a little overcooked.”

My comments are rarely informative. Regardless of the words I am saying, the other person probably just hears, “You are wrong. You are wrong. Not only that, I am smarter.”

So I sit here waiting for chemo, grateful for any good you send my way and pausing to practice accepting the good without exception.

Love, Marie