Changing habits

Thank you for all your prayers and good wishes. As we are all adjusting to this new regimen, it helps so very much.

The first time I received this new chemotherapy, I had a Benadryl hangover the next day. So for round two, we reduced the Benadryl, and I got a smaller hangover. The next time, which was about two weeks ago, we decreased the Benadryl even more, and, instead of a Benadryl hangover, I had huge, swollen, watery eyes the next two days. So we are still adjusting.

I find that I am adjusting in other ways as well. Over the years, I have been on two previous chemos  (FOLFOX and FOLFIRI), both of which left me exhausted. One minute, I would feel fine, and the next just hit a wall; as time went on, my periods of good energy became briefer. After years of this, I stayed home as much as possible and only made plans that could be cancelled.

On this new chemo, I have more energy. But old habits die hard: I continued to stay close to home and do very little. Noticing this habit, I decided to push myself a little more.

I’m thrilled that we were able to travel to Maine and visit friends. My husband was a huge support, and our friends (who are more like family) took great care of me and understood where I might be cautious and where I might want to push myself a little.

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Playing on the beach in Maine

On another day, I took our ten-year-old son and his two friends rock climbing, out to lunch and then swimming. I was a little nervous, committing to a full day of taking care of three boys, but I told myself that I could always take them home if I got tired. It helped that they are polite and well-behaved kids, and I checked in with myself during the day to see how my body felt. I was thrilled that we could do this! My husband went on a driving adventure and when he returned, I was actually able to actively listen to his experience without being distracted by some health need! I didn’t realize how I missed that.

We went as a family to the St. Anthony street festival, walking among the vendors and crowds on the city streets in the summer sun. This was a big risk – no convenient bathrooms, walking the whole time we were there, being in a crowd. But my husband was there and I knew that he would help me if I needed it. But I made it through!

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Eating our way through the St. Anthony Festival

And, all by myself, I took one of the boys exploring Faneuil Hall Marketplace in Boston. This was probably my biggest leap. I would be on my own and responsible for a child, with no convenient bathrooms (they are my little safety net!), and walking much of the time. Our schedule was not set. I worried about driving if I didn’t feel well, but then realized we could Uber back and forth. I decided to try it.

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Quincy Market and Faneuil Hall are side-by-side

Faneuil Hall Marketplace can be imagined as a large outdoor shopping mall. Salespeople stood outside their storefronts in the beautiful weather, chatting with passersby and handing out samples.

As we passed a make-up store, a young man stopped us to give a sample. He gave us a cheery greeting, then took one look at me, gasped audibly and said, “Oh  – your FACE!”

I had momentarily forgotten about my face. The current chemo drug often causes acne – one doctor described it as a rash and another called it a disfiguring skin condition, so you can imagine the range. For me, the “rash” is always present but changes daily. On this particular day, the skin on my face was a mix of red bumps, puss-filled bumps, and scabs of blood that I couldn’t get rid of – bleeding just happened whenever it happened and dried blood was on my nose, cheeks and forehead.

Yes, my face was a mess.

I anticipated that, at some point, I would get a comment from a stranger, and I planned to say, ‘It’s a side effect of some medication I am on.”

But instead I said, “It is a side effect of the chemotherapy I am on.”

I watched the statement sink in.

“Oh, the stress,” he nodded, as if he understood. “The stress must cause this.”

I felt like he was about to recommend a product, and I hated that he thought that my stress level was so high that it would cause this. (Okay, maybe it is, but still…) I tried to be educational, though I suspect that my tone sounded slightly defensive or even condescending, as I answered, “No, the chemotherapy attacks the cancer and, when it is working, it causes my skin to do this. It is the medicine itself, not the stress.”

His eyes got huge and I realized that he really meant well, but I would do us all a favor if we just moved on. So my son and I walked away and enjoyed the rest of our day.

This made me realize how rarely I am out in public. It felt good to be out, to spend time with the kids and do normal things, and to not drop from exhaustion or pain. In fact, I appreciated that I had enough energy to deal with his comment and find it only mildly annoying, and not energy-draining. And building new habits also builds my energy.

Thank you for all your support that enables this to be. It really helps us to have a better life. It’s the little things!

I hope that you are able to spend time doing things that give you energy, and that any inconveniences are reminders of the power you have to deal with them!

Love and blessings,

Marie

Every little action helps (or, where is my rosary and how do I say one anyway?)

A former student traveled to Rome and bought a rosary for me at the Vatican. Not only was I incredibly touched that this eight-year-old girl would think of me during her vacation, she also selected a beautiful set of wooden rosary beads that feels lovely to hold.

For awhile, I carried them with me to every chemo session, keeping them in their little white paper bag from the Vatican shop. I didn’t actually use them, but I felt better just having them with me.

Then about 8 weeks ago, I couldn’t find them. I have several different rosaries that I love, but I hate losing objects that are meaningful to me and I went into a panic. I dug through everything I own and worried that I may have lost them at Dana Farber while I was in a chemo haze.

I vowed that if I found them, I would pray the rosary every day. They didn’t show up.

Then I did what worked for my ring – I prayed to St. Anthony, but this time laughingly. I had looked everywhere and this was a silly last resort.

But yes, less than 24 hours later, there they were, next to my bed. Crazy.

Wooden Rosary from the Vatican

I happily said one rosary, even though I don’t really know how to say the rosary. Yes, I looked online for instructions, but it seemed like you are supposed to meditate on different mysteries depending on the day of the week (with some exceptions, of course – why can’t this be straightforward!) and THEN, for each set of prayers within the rosary, meditate on a different mystery within the major category. It all felt so complicated.

I know that for each little bead, you say one Hail Mary. I seem to recall that on the larger beads between the sets of 10 little beads (decades), you say one Glory Be and an Our Father. But I don’t know what prayers to say at the Cross or at the funny little symbol that connects them.

So I did what I knew and called it a really good try.

They next day, I didn’t seem to find time to say the rosary until late at night. The day after that, I started to say one after I went to bed (counting on my fingers instead of the beads) and fell asleep shortly after starting.

The subsequent days, I only thought about doing it.

On Thursday night, walking down the hall to say goodnight to our sons, I passed by the rosary beads. As I continued walking, I said something like, “Mary, I’m going to need some help with this.”

On Friday morning, I went to a Mom’s Spirituality Group, where the group leader provides a topic and structure for our weekly discussion and we work within that structure. This week, the topic was stress, worries and anxieties. We were to write down our individual stress, worries and anxieties, then pick a buddy and discuss.

I don’t like to focus on these things, but I pretty much do what I am told so made my best effort. Janet and I finished first, so we paired up. After discussing our assigned topics, we started talking about life in general. At one point, seemingly out of the blue, Janet shared that a friend of hers told her to pray the rosary. Janet wasn’t sure where she would find the time, but realized that she spends so much time in the car that she could easily do it while she was driving.

She also told me that she doesn’t pray the “official” version of the rosary, just her own version. She believes that is okay because even doing that shifted something inside her, and events began to change for the better in her life. She assured me that Mary works to answer our prayers.

Though I appreciate all the details she shared, my favorite is simply that the topic came up at all.

I received direct help on how to get going on the rosary and the assurance that it can be meaningful without being a big event. Of course, that makes me stop in amazement and gratitude.

I want to thank my young friend for the beautiful rosary and the wave of miracles that unfolded because of her lovely act of kindness.

I thank YOU for every little action and thought from your heart. Regardless of how big or small it feels, each one is meaningful and has a beautiful ripple effect as well.

Love,
Marie

The Power of Prayer

Thank you for your prayers and good wishes. They make a world of difference. I will give you three examples from the past seven days.

#1
Years ago, when I initially (thought I) finished chemotherapy, I had a ring made in commemoration. Heavy and beautiful, it was meant to remind me not only how heavy the process was, but also how beautiful life became.

Over a year ago, we were going on vacation so I hid it somewhere in the house, then  promptly forgot where I put it. Since that time, I searched the everywhere. I would wake in the middle of the night with new ideas. But never found it.

As you may suspect, I pray to God and a myriad of saints. Among them is St. Anthony, to whom I pray for my healing and the healing of my friends (providing a long list of names and specific healings for each).

Last Friday morning, I suddenly remembered that somewhere I heard that St. Anthony is the patron saint of lost items. So, I threw in an extra prayer to help find the ring.

Less than 30 minutes later, I heard my husband call out, “Look what I found!”

#2
On Thursday, I had a CT scan and I appreciate your prayers for good results. The following Tuesday, I met with my doctor to get the results. These meetings make me feel like Alice in Wonderland: I walk into the office feeling my normal size, information is shared, and I leave the office feeling larger or smaller.I suspect that is why they take your weight before you see the doctor.

The good news is that, in spite of skipping two of my last three chemo treatments, I learned on Tuesday that all tumors are smaller. Woo hoo!!! Thank you for your prayers to this end!

#3
When I returned to Dana Farber today to get my pump disconnected (I’m connected to chemo from Tuesday – Thursday), everyone was very nice. I even saw my friend Chuck, which usually makes me happy. But I had just spent three days vomiting and was on the verge of more. So instead of talking with Chuck, I found a seat away from everyone and collapsed into silent tears.

“God, I just need to know that you are here.”

I felt a hand on my leg and looked up. I feared that it was Larry, a well-meaning man who visits each person in the waiting room asking if they need anything. I don’t mind him but didn’t want to see him right now.

Instead, I saw a young woman with dark skin and a kind face. I saw a tear falling from one of her large, beautiful eyes. She said that she could feel me in her heart, and she asked if she could pray for me.

She placed her hand on my leg for a long time and prayed outloud, certain of my healing, peace, grace and all good things through God. I felt calmer, more relaxed, and less like I was going to lose my insides.

At the end, I thanked her and she asked if she could hug me. I warned her that I had not bathed for three days but she laughed and said, “You are filled with the scent of God, more beautiful than the most beautiful flowers. Honestly, that is what I smell.”

God bless that amazing woman. God bless all of you. I am constantly in awe of the power of prayer, and thankful that you include me in yours. May your life be blessed, always.

Love,
Marie