A little update after last chemo

Thank you for your prayers and good intentions. I made it through chemo without getting sick.

However, I was passed out for the entire process. Before I got chemo at all, I talked with Mike (who I sometimes see instead of my doctor) and started to feel nauseous. So I took an anti-nausea med right then.  About 10 minutes later, I was feeling nauseous again. He warned me that if I took another med, I would pass out. I warned him that if I didn’t take another med, I would surely vomit.

After that, I did make it to the chair in the infusion room, but the next thing I remember is my nurse waking me to say that it was time to go. She also joked that I was so passed out that someone thought I was dead and came to find her. Makes me wonder how often someone actually dies while getting chemo.

Thankfully, that wasn’t my fate and I am still here. A few days later, my white cells dropped (a side effect of chemo) and I caught a chest cold and lost my voice. I’m going on four days with no voice. The kids don’t seem to notice – they will be on another floor of the house and yell things like, “Mom, call me when dinner is ready.”

I’m scheduled for a CT scan on Friday, but between the drinks required and the contrast injected into my body during the scan, that can’t help me heal from this cold. Plus, my frequent coughing makes it hard to stay still for the pictures. So I will postpone that study. More to follow…

Sending my love and gratitude,
Marie

Taking care of each other

Of all the worries that happen along this path, what might happen to my children tops the list.

This week, I read about a fifteen-year-old Florida boy, Davion Only. He was born to a mother who was in jail, then spent his life in the foster care system. He is currently living in a group home with 12 other boys, and understandably had anger issues and bad grades in school.

Recently, he decided to take control of his life. Though his circumstances remained the same, he worked on his anger issues and dramatically improved his grades. Still, he wanted a family, someone who would love him for the rest of his life. So he stood up in church, in a borrowed suit, and asked for what he wanted.

“I’ll take anyone,” Only said during his speech, his hands sweating. “Old or young, dad or mom, black, white, purple. I don’t care. And I would be really appreciative. The best I could be.”

As someone who wholeheartedly feels that there is always room at the table for one more, this pushed all my buttons. My heart expanded as I thought of him making these big personal changes on his own, when it is hard enough for me to make personal changes even with support and someone who believes in me. I was pulled toward his initiative, his appreciation for what he may be given, and my belief that every person and certainly every child deserves someone who loves them. The systems are not set up for love and caring.

And it is there that I worry about my boys. I hope that, if there is ever a time that I cannot be here for them, the world will take care of them. I like to think that we take care of each other, but, as Davion’s story shows, that doesn’t happen easily.

He simply wants what so many of us have and take for granted: To be loved, and to have someone to love.

I think about how one of our sons, though internally driven to practice gymnastics, still sneaks a look here and there to confirm that I am watching him. I know that our other son is smart but does much better schoolwork if I simply sit next to him as he works. Knowing that we matter to another person helps us each to be our best self.

Taking care of each other seems like the biggest honor on earth right now. I so wish that we could provide Davion with a forever family, and hope that whoever is lucky enough to adopt him feels like it is an honor as well.

That feeling of honor often gets lost in our daily noise. But after we turn out the lights at night, I love listening to the boys talking together before they fall asleep.

“Do you think that Lance will be in gymnastics after his concussion?”

“It is dangerous to do gymnastics with a concussion.”

“He is pretty good. He might be able to do it.”*

It warms my heart beyond words to feel their connection with each other, and I am reminded that it is an honor and blessing that I get to be part of it all.

Each person I am able to help provides no less of an honor and blessing. I hope that you feel blessed for all the help you have given to me and my family, as I know that I feel blessed when I have the opportunity to help as well.

Love always,
Marie

*Lance didn’t actually have a concussion after all. Whew.

No chemo today

Thank you for your good wishes and prayers.

But, well, I bagged. I couldn’t go through with it. For the first time that I can remember, I declined chemo mid-process.

The anticipatory nausea started when I entered the blood draw area. I was holding it off, but then the nurse injected TPA into my port, which made me light-headed and more nauseous.

When I left the blood draw area an hour later, I noticed that the waiting room was PACKED and abuzz. There should not be this much cancer in the world. The air felt heavy as I walked through the waiting room filled with a sea of people of every age and type suddenly floating around me – bearing surgical scars, breathing through oxygen tubes, slouching in wheelchairs and wearing masks and gloves.

I plowed ahead to the elevator to see my doctor, as scheduled. During our conversation, the nausea let loose full force. Multiple times. Lovely. Thankfully, I travel with vomit bags. Handy dandy for times like these.

Usually, after seeing my doctor, I have to sit in that waiting room to wait for my chemo to be ordered and my infusion to begin, but the DFCI people are SO NICE. The nurse arrived and walked with me through the back entrance, bypassing the waiting room and going directly to my chair in the infusion center. After I sat, I was barely holding it together and every time I looked at the anti-nausea meds I was supposed to take, I would vomit again.

My chemo was scheduled to start at 10:15. At 12:30, I was still sitting there, sick and crying and saying that I really couldn’t do this. The man next to me had the TV blaring. The woman across from me was meeting with a dietician and discussing food options. Lunch was being delivered on a cart. I tried to be zen about it all.

“Let’s try giving you some fluids,” seems to be the answer to every problem.

“I don’t want fluids. I just want to stop vomiting,” I said, two words at a time, between bouts.

The nurse gave me some IV anti-nausea meds, then, when my stomach calmed down, asked me to think it over.

I thought that I should continue my treatments. I thought about the kids, that I should do absolutely everything for them. I thought about just getting this one round underway and done. I considered that it might get better. I thought about fulfilling my commitment to 8 sessions, much like we expect the kids to finish whatever activity for which they ask us to sign them up and pay for. I thought about how I would handle the situation if I were the mom and this were my child resisting and begging not to do it. I don’t know what I would do, but  I vowed to be kinder the next time my kids resist doing something.

The social worker magically appeared to help me think through this. Perfect timing. Love the serendipity.

At 1:30, the doctor, nurse and social worked all asked what I wanted to do. By now, Tiron had arrived to hold my hand.

“I want to go home. I’m tired. I feel sick. This doesn’t feel right.” Not that chemo ever feels right.

This is unusual for me. Once a process is underway, I suck it up and go with it, no matter what. If it is stopped, it will not be because of me. But I just couldn’t do this round. It felt way too hard. I guess I do have a breaking point.

Once home, I showered to create a fresh start and groggily picked up one son from school. I thought he would be thrilled, but instead he reminded me that surprises aren’t always his thing.

“Why didn’t you tell me? I didn’t expect you.” Back to the real world, and so grateful.

Love,

Marie

St. Rita Returns!

St. Rita returned!

Unfortunately, so did the abdominal pains. Actually, the abdominal pains came first. They followed their usual pattern –waves of pain that intensify by the hour until it makes me scream (worrying my husband and scaring my kids), soon accompanied by violent vomiting. Not the easiest way to spend the night.

In the midst of all this, I prayed for relief. The last time this happened, I prayed to St. Rita and offered a trade: ANYTHING instead of this pain. At that instant, the pain vanished and my nose started bleeding like a faucet.

This time, I tried praying to St. Rita without trading: Just help me. But my pain remained. Maybe she answered my prayers. Maybe the answer was, “No.”

In desperation, I finally offered the same trade as last time: ANYTHING instead of this.

The good news is that the abdominal pain disappeared, but I immediately needed to vomit again. Suddenly, my throat burned intensely from the stomach acid. Seriously? I now couldn’t swallow and was up the rest of the night dealing with that. Okay….we are where we are.

It isn’t that I don’t appreciate the help. I do. But St. Rita and I can surely find a way to work together that doesn’t involve my getting hurt. In the dark of that night, I decided that I needed to ask my friend (who has some big connections to St. Rita) for a better way to pray to her.

The next day, before I could contact my friend, a package arrived in the mail. From her. Inside, she wrapped a bottle of blessed oil from the Shrine of St. Rita AND a prayer to go along with it.

What are the odds?

Four days later, I am still trying to heal my throat. I can drink only some liquids, and slowly. I can eat very few solid foods. Though it is both painful and inconvenient, it still beats the abdominal pain. I stand in awe of how events are linked and our wishes granted, albeit in unexpected ways.

Thank you for your prayers on my behalf, and know that, if stuff like this is happening in my life, it must surely be happening in yours. Please call for help whenever you need it. I pray that it comes through right away, and without a trade!

Love, Marie

Woe to the complacent in Zion (Amos 6:1)

Thank you for all your prayers last week. As chemo weeks go, it was a good one. I was thrilled to be scheduled as the lector for the 8 a.m. Mass on Sunday, and I even felt well enough to get my body out of bed and to the church on time.

A theme of the readings on Sunday included helping those less fortunate. I reflected on my past 24 hours. Living in a city, we often see individuals at traffic lights, walking among the stopped cars asking for money. Though I am totally random when it comes to giving in that way, I had given money to someone the day before. And after Mass, I put money in a basket for women and children working to change their lives after sex trafficking. I probably have a ways to go, but I felt okay about my sharing, at least recently.

In my life, that kind of self-satisfied, or maybe complacent, feeling, no matter how mild, is like foreshadowing. I know that by now, but I can’t seem to stop it, so I basically think “uh oh” and go about my day.

When I left the church, my husband and kids met me with our dog. I scooped up the dog and drove straight to Fresh Pond to meet my friend, Mary, and her dog. The air was crisp and clean under a beautiful blue sky and the fall leaves stood out against the blue pond water. I felt good enough to walk, so, in the car, I happily changed from my skirt into yoga pants. I considered changing my shirt –who cares if someone sees my bra for a minute – but decided that it was too awkward to pull my blouse over my head in the car. (Turned out to be a good choice.) So I stayed in the same top, kicked off my dress shoes and got out of the car barefoot to retrieve my socks and sneakers from the back seat as the dog ran off to play with his doggie friends.

I opened the back door to the car and stood between that open door and the back seat to put on my socks and shoes. While doing this, I was happily chatting on my iPhone with my friend, Kathy.

Suddenly, a man appeared RIGHT NEXT TO ME. Not only did he invade my happiness circle, he was shoulder to shoulder with me.

I turned to face him. He held a cardboard takeout coffee cup holder with three cups of Dunkin Donuts coffee that appeared to be fresh. At first, I thought he was about to offer a cup of coffee to me.

Instead, he said something about my bare feet but it sounded confusing. I was suddenly aware that I had zero personal space and the car door behind me made it impossible to back up. I don’t generally mind talking with strangers but I do need my space. Plus, I wanted to finish my conversation with Kathy and find Mary, who was waiting for me.

From there, our conversation went something like this:

Me: “You are too close to me. Step back.”

Him: “I want to talk with you.”

“You need to leave.”

He got a little annoyed. Or maybe he was angry – I couldn’t tell – there was too much going on with my socks and shoes, my interrupted conversation with Kathy, the car door, and the funky vibes this guy was throwing off. I couldn’t process all of it, much less factor in how he felt.

“You need to leave. Right now.” I was surprised at how firm I was and how calm I felt.

“No.”

“You are creeping me out. You need to leave.”

I was able to move so that I was no longer stuck between him and the car door. I still had my cellphone in my hand. Apparently I am unwilling to let that go, even in a crisis. I must be more addicted to it than I think. It also kept me connected to Kathy, an expert in getting her way with difficult people. Her connection on the phone provided inspiration.

“I just want to have a conversation,” he slurred.

“I DON’T. You need to leave.”

He turned around and walked away, muttering nasty things about me as he did. I watched him walk until he was on the other side of the parking lot, where he seemed to meet up with some other guy and they walked together to the street. I put on my socks and shoes and stayed on the phone with Kathy until I found Mary.

Recounting the incident with Mary, she told me that he had approached her, too. Their conversation also felt creepy but she managed to ask how he was. Clearly, Mary has a kind heart. He told her, “I’m stoned and f’ed up” (though he didn’t leave out the letters).

So much for helping those less fortunate. Always room for improvement.

I felt okay about how I handled it. I was strong and clear and direct. But maybe there was a better way that wasn’t all about me. He wasn’t looking for money. I didn’t feel fear, so I wasn’t working from that. Maybe he just wanted to connect. It was not yet 9:30 a.m. and I had interacted with my husband and kids, talked with people at Mass, laughed with Kathy on the phone and looked forward to meeting Mary for a walk. Clearly I had an abundance of connections and communications that I took for granted.

It’s a tricky business to communicate with someone in an altered state of mind. I don’t know that any kind of conversation would have made a difference, any more than I can know that giving money to a homeless person makes any real difference. Still, I try.

It did remind me, though, that I often have more than I am consciously aware of, and that there is plenty to share.

Thank you for sharing your life with me, your time, your blessings. Thank you for being connected to each other, as it builds our huge web of social support. Thank you for your prayers. Though it may seem like a little bit, it makes a real difference.

Love,
Marie