“Procedure” on Friday morning

Not to fill your inboxes this week, but here I am again.

This time, I’m here to ask for prayers and positive thoughts for my “procedure” on Friday morning.

I’m set for a 6:00 a.m. arrive, 7:30 procedure time, to have stents placed in both ureters. I will be under general anesthesia, which alone makes me nervous. The tumors around the site give all of us (including the surgeon) pause, but I’m hopeful that they can work between those. I have to actively keep my thoughts on the positive. Luckily, I’ve had lots of practice with this. And a good medical team on board.

Thank you for any good wishes and visualizations and spiritual support that you can send my way. I appreciate your being there with me.

Love and blessings,
Marie

 

A bend in the road, or a new road?

As my friend Shira used to say, “I’m not sure if this is a bend in the road, or an entirely new road.” Either way, I’m along for the ride.

These two weeks were unbelievably difficult. It was almost a week after chemo before I got out of bed and downstairs. And even then, I didn’t travel further than our back patio and just plopped myself there.

In addition to the pain of my belly button slowly ripping open, I couldn’t get clear answers on how to deal with it. I had other pain that only a bath could resolve, so I was bathing every two hours, even through the night. The abdominal tumors hurt like crazy.

And on Friday night, I had a bowel obstruction. Normally, those are painful. This was my worst yet, and left me screaming in pain.

In the midst of the intense pain, I noticed that I was screaming two things. One was, “I can’t do this anymore.”

I found my limit. I never labeled my pain a 10 because I figured that it could get worse. This was an 11. I could not imagine enduring a worse pain than this. I wasn’t even sure I could endure this.

The other thing I screamed was, “I can’t do this alone.”

And I can’t.

First and foremost, I have to acknowledge my husband, about whom I rarely write. He reliably takes care of his day job as well as taking care of the kids and me and the household. Each one of those is big in a regular life. He comes home from work, figures out a plan for dinner (on the days when someone hasn’t brought it), determines which child needs to do homework and who needs to get exercise or go to their after school sport, then helps get them both ready for bed and asleep. He makes sure that I am doing okay, have whatever it is I can eat that day, and runs to the store or pharmacy if I needs something. Beyond the logistics, we have the emotional complications for the kids, my often-intense daily needs (I do not suffer in silence), taking care of the medical side of my issues, and the random things like end-of-school events, a flat tire or the house internet going down. He doesn’t get a spare moment to himself. Without him, none of us would function. At all. He is carrying all of us every minute of the day.

Our family is grateful to the folks with whom we interact every single day, who understand what we are going through (HUGE for us, that understanding) and lighten the load in a million ways. When my son couldn’t find his gym shirt, someone kindly understood that I could not make it to the school lost and found. So they searched for me and, when they didn’t find it, they provided one for him. Huge. Friends take the boys for playdates, or show up with food or flowers or a fun story, or send an email or text at the perfect time, share their medical advice and experience….the list goes on. We are grateful for fabulous support at school, a fantastic close-knit neighborhood, family who show up when we need them without question and take over for a bit and make it look easy, and friends who are willing to go the extra mile.

Even with all this support, there are times when it seems like it is just me by myself, like Friday night when I was lying on our bathroom floor, sick beyond all belief, feeling like this has to be the end of the road and partly wishing that it was so that the suffering would be done. And from that rock bottom place, I pray for help and then am able to give thanks that I am not truly alone there, either. In those moments in the middle of the darkest night, I give thanks for my connection to God and to all of you.

If you sometimes feel alone with your problems, and even if you don’t feel like you have a relationship with any higher being, I hope you are able to tap into the connectivity of us all and draw some strength from that. In my experience, it doesn’t make the suffering go away, but it does shift my relationship to it somewhat to make me feel less alone, and I wish that for you. As well as an understanding friend.

Love and blessings,
Marie

Help when we ask for it

When I was in bed on chemo, I fantasized about what I would do if I had blocks of time where I could move around freely and think more clearly, and where my schedule wasn’t bound by doctor appointments.

Now that I am on a holiday from chemo, I’m not really doing anything “big.” Mostly, I spend the time doing more of what I was already doing, like driving the kids around or running errands. I find it liberating to be able to plan for any day of any week, rather than only agreeing to do things that accommodate my chemo schedule or fit my prediction of good days.

At the start of my chemo holiday, I optimistically assumed that every day would be a good day. So I joyfully and confidently volunteered to lector at two Masses over Easter weekend: The Easter Vigil Mass on Saturday night and the 10 a.m. Easter Sunday Mass. Of course I would feel good!

My assumption, however, was wrong.

On Friday night before Easter, I had a painful intestinal obstruction resulting in approximately 2 hours of sleep. I fumbled through the next day’s hair appointment and childcare, figuring that I would rest at some point.

Of course, Saturday evening arrived without a chance to rest beforehand.

The Easter Vigil Saturday night Mass would be about two hours long. I decided that, if I needed to, I could leave after I did my part.

However, once I did my part, I realized that my energy was holding up. I actually stayed for the entire service. I may have been lifted by the spirits of the crowd, but I also believe that grace steps in and carries me when I really need it.

Once home and in bed, I suddenly had pain from tumors and AGAIN couldn’t sleep. The last time I looked at the clock, it it was 5 a.m.; the kids woke us at 6 a.m. filled with Easter excitement. I was slow to rally on three hours of sleep over two nights.

The boys opened their baskets and hunted for Easter eggs. Then at 9:00 a.m., I headed back to church. I had two roles that morning:

  1. Stand at the door and welcome people as they arrived and
  2. Lector during the Mass, which included reading two readings, out loud, from the Bible.

On the drive to church, I worried. Could I stand long enough to greet people as they arrived? And, could I read aloud? My voice is getting stronger, but it is still weak from chemo. It often has a strained tone that is hard on the ears, and it cracks and skips as I speak. When I am tired, it sounds even more strained.

I wanted to deliver a good reading to the overflowing Easter crowd. I wanted to vary my tone and expression, so that anyone listening had at least a chance to get something out of the readings, but I had little control over my voice.

As I drove, I talked with God. I told Him that I wanted to do this for Him and that I know that He always comes through and carries me when I need it. But this was cutting it close.

Then I thought about the event we were celebrating: Easter. I wondered if Jesus had a similar conversation during the crucifixion. Did he think, “I have more teaching to do to spread Your word. I haven’t reached everyone yet. This isn’t looking good. I know You will take care of me but this is cutting it close.”

Did he know that his answer would come three days later? Or did he feel like, okay, this is it?

While my problems are nowhere near crucifixion-size, this did help me to feel more like, whatever happens, God can save it. He can take whatever we offer and use it for good.

I was able to stand and greet people. When I read, my voice still had a funny pitch and it cracked, but it was there. It wasn’t what I imagined as perfect but it all seemed to come together well enough that, hopefully, everyone present got what they needed on that Easter Sunday.

Thanks for your prayers and for helping me to get what my family and I need. This situation is not what I imagine to be perfect, but it does seem to come together well enough that we generally get what we need, when we need it.

Now that I have a bit more time available, I’m so happy to be able to help others. I still believe the good moments far outweigh the difficult ones, and that we can be carried through the difficult moments when we ask for help.

I hope that your moments are beautiful, and that if I can help in any way, please give me the honor of stepping into that opportunity.

Blessings and light,
Marie

Forgiveness

Thank you for all your good feelings and good wishes last week. It helped so much. By Monday afternoon, I was on my way to feeling much better.

I was also on my way to see John of God, who was scheduled to be at the Omega Institute in Rhinebeck, NY. I recovered enough to drive there and, honestly, I believe I was carried there safely by spiritual entities. I am so grateful that I made it, especially because I knew that was where I needed to be at that time.

In the past, each time I saw John of God in Brazil, I experienced lots of fun coincidences. More than that, I walked away changed to my core and receiving at least one big message. I wasn’t sure what to expect from Omega.

The fun coincidences showed up. For example, my friend Kate told me to look for her friend Gillian. In a sea of 1600 people, all of whom were wearing white and doing introspective soul work, what are the odds? But the next day, standing in line, I turned to the woman behind me and said, “You wouldn’t happen to be Kate’s friend, Gillian?” Bingo!

Happily, I can say that I do feel changed as a result of this experience. In fact, I feel wonderful in so many ways. The simplest way to describe it is to say that I feel great peace and health.

Finally, I received a message this time as well: Forgiveness. This word came from many directions and in many forms. The topic came up in random conversations with strangers. People would spontaneously begin discussing ho`oponopono (a Hawaiian forgiveness prayer) with me. I heard that voice in my head that told me that now is time for forgiveness. When we said the Lord’s Prayer, the words “as we forgive those who trespass against us” sounded louder than the rest.

I don’t feel like I harbor any grudges or walk around bearing ill will. I assumed this meant day-to-day forgiveness, like toward people who are inadvertently rude to me or annoying. I got excited – I was up for that! I could be a light of forgiveness, with bad things just bouncing off and away. This would be awesome!

Then I randomly met Donna at lunch. We soon discovered that we not only had mutual interests but a mutual friend. Later, I ran into her again, and she made a comment that went straight to my core and illuminated grudges that I harbor that are so old and so much a part of me that I don’t even realize I am carrying them. These are the kind of grudges that drive my daily behavior, that define who I am. Dropping these grudges would be like cutting out a part of me.

Forgiveness suddenly did not feel so easy or fun.

I know that when I get these messages, I need to listen and act. Not knowing where to start, I began with trust. I asked for help and promised to do the work that is in front of me, even if only one step at a time. Here goes.

With love, gratitude, and, hopefully, the beginning of humble forgiveness,
Marie

 

All about me. Or not.

My life tends to be all about me. My comfort. My health. My happiness. The happiness of people I love. My blog. Me me me. It feels good to step outside myself, but sometimes it is a conscious effort.

The other week, I attended a Mass led by an unfamiliar priest. I did know that he was a Jesuit so I assumed that he would at least have a good homily.

When we got to that point in the Mass, he started out by saying that he just got a call from a friend, who was at his mother’s bedside while she was dying. I looked at my sons, who never appear to be listening to these things but often ask relevant questions afterwards. They seemed to be unperturbed, so I listened while the priest continued on.

His talk was not a downer, though it covered a lot of death and specifically, death of a mother. He continued long enough that the man in front of me started visibly rolling his hand in a “wrap it up” signal, high enough for the priest to see, which made me laugh inside and a little out loud.

I learned a lot about St. Joseph being the patron saint of a good death, about the role of adult children as a parent is dying and the grace of God appearing at what can feel like the worst time in your life, but I didn’t get that soul-satifying feeling that happens when you connect with a talk. I suspect that everything in the world isn’t always a sign personally for me, though I seem to be surprised every time.

The priest eventually wrapped it up and the Mass continued on. At the end, my sons ran off to see if there were donuts today and I, knowing there were none, lagged behind. I walked past a friend who was still sitting in her pew. We said hello and she looked like she had lost her best friend.

“Are you okay?” I asked her.

“My mother died on Wednesday.”

I thought of that sermon. Crap. Was that awful for her? I hoped she was okay.

“The homily….” I started.

“That spoke right to my heart,” she said with a sense of relief. “Every word. It was exactly what I needed to hear right now. In fact, I took notes.”

It is so not always about me. Thank God.

Love,
Marie

Chemo resumes next week

Thank you for your prayers and your good wishes, your presence, your texts, your emails, your comments. I feel a bit like you are cheering me up Heartbreak Hill on the Boston Marathon route – it definitely keeps me going.

The good news is that everything we covered today with the oncologist was familiar territory. Yes, there is growth, but all in the areas where there was known tumor. Yes, I feel bloated, but they found no ascites (fluid that the tumors can generate) so it is likely due to tumor on my colon slowing down the works. And yes, I am short of breath, but that is probably due to my diaphragm being squeezed from all the crowding in that space, not because of new lung tumors as I had feared. And yes, my CEA (tumor marker in my blood) was higher, but it has been that high before and we got it back down.

In fact, it was hard to find the spots on my lungs, so that was good news. As for chemo, there was no room at the inn today or tomorrow, and I don’t want to have chemo Thursday – Saturday, so I will start next Tuesday. That is the physical side. The emotional and spiritual sides of me feel strong and happy. I poked into the dark and dusty corners of my mind and heart (places I usually don’t like to examine without a trained professional) to see if any scary thoughts or emotions were hiding there. But I really do feel good. My amazing cousin, her son and her fabulous friend were all visiting today and that makes me happy. Life overall is good. While I am not crazy about going back on chemo, I’m glad to have it as an option. The doctor made a remark about the gastrointestinal floor being the busiest one and how they are working to provide more space. I inferred that meant that they see a lot of GI cancers. So keep those intestines moving! Eat good foods, drink lots of water and keep your body moving. Get tested when you should and if you feel the need for a test and you can’t seem to get it, advocate for yourself or change doctors. You don’t want to be another one in this crowd!

I spent the past week preparing seemingly endless meals and snacks for the kids and their friends, delivering yet another glass of lemonade to a thirsty child, wiping sticky popsicle drips off the kitchen floor, telling the kids to go play outside, driving them to the pool, taking care of various animals. I wondered if I was frittering away my chemo holiday.

As I sat here today with the dog at my feet and my son on my lap, trying to write this post despite constant interruptions, I got this message.

The days go by with so many little things that don’t seem to matter
until they’re no longer there
and suddenly, they’re all that ever mattered.
-from StoryPeople by Brian Andreas

Enjoy the little things that make up your day. They matter. They are love and life.

Blessings and love always,
Marie

A day in the life

We are home from vacation and the kids started summer camp. This particular week, one child attends a camp in Cambridge and the other attends a camp in Newton. We live in Cambridge, and Newton is not far, but both camps are on the OPPOSITE end of the close side of town.

In addition, both camps start at 9 a.m.

I love logistical problems and this is how we solved this one.

7:40 a.m. Leave the house for an 8:00 drop-off for the Cambridge camp. We drive 20 minutes, park, then walk him to the building. Return to the car by 8:20.

8:20 a.m. Start the rush-hour, 50-minute drive to Newton. Drop off around 9:00 (sometimes 9:10).

9:00 a.m. Drive home, arriving around 9:40.

Basically, driving the kids to camp is a two-hour gig.

Their pick-ups are at 3:30 and 5:00, so I leave the house around 2:30 and make the loop in reverse, arriving home around 6 p.m.

I honestly don’t mind all the driving. It is only one week. Besides, it is what I am supposed to be doing. And I can do it! It feels like a dance.

However, even on my chemo holiday, health challenges interrupt my week. For example, on Monday, I had debilitating shoulder pain (that is now thankfully gone). And I have had a pain in my leg for the past three weeks, plus the pains in my abdomen. Though I am not fully functioning all the time, I can do a lot and try to maintain some degree of normalcy and routine for our kids.

My CT scan is scheduled for Friday and causes me to miss the end-of-camp shows. Bummer, but I think the kids will be okay. I called the hospital to ask them to scan my leg while they were scanning my chest, abs and pelvis.

“Come in immediately for an ultrasound. It might be a blood clot. I got you in for a 1:45 ultrasound. It will take 30 minutes, then the doctor will see you at 3:00. Be prepared to stay in case they find a blood clot.”

Life upended and I tried to stay calm. A 1:45 ultrasound works if they run on time. But three o’clock is right in the middle of my pick-up rounds. Plus, be prepared to stay? What does that mean for childcare when you have kids?

As I said, I love a good logistical challenge, but I couldn’t think straight and this threw me into a tailspin. I looked at the clock. It was almost noon. I didn’t have a lot of time to figure this out.

A friend in California offered suggestions via text messages, though I couldn’t see any solutions I liked. A few lucky friends happened to email me at the time and I complained to them. They offered to help but honestly, who can drop their plans at the last minute for a multi-hour, traffic-laden gig for kids who will be understandably upset about a sudden change and worried about their mom? I texted a neighbor to see if she could take at least one boy after camp, but there was still the pickup puzzle.

Eventually, I decided to scoop up the Newton camper on my way to the ultrasound (though it wasn’t exactly “on my way”) and take him with me. The au pair, who was out for the day, could be home in time to pick up the Cambridge camper at 5:00.

My son and I arrived 15 minutes late for the scan, and the folks at Dana Farber could not have been nicer. We were admitted right away, and the tech rubbed the gel on my leg.

As I lay on the table, my phone rang. It was the director of the Cambridge camp. Our son wasn’t feeling well and could we pick him up?

I thought I was calm, but I could again feel my life unravel as I called the au pair. No answer, so I left a message. Argh. Hopefully she was on the T (Boston subway), on her way home earlier than planned, but I didn’t know. As the tech slathered more gel on my leg and pressed down with the ultrasound probe, I took a deep breath and called another friend. Even though driving in Cambridge traffic is her own personal version of hell, she agreed to be on standby.

Just then, the au pair called. She had indeed been on the T when I rang, and was now almost home. She could pick up the Cambridge camper without delay.

The heavens opened, light appeared and angels sang.

About 10 minutes later, the tech told me that there was no blood clot.

And just like that, life returned to normal.

I would love to have no glitches in my life, especially no health glitches. I would love for the boys to have some consistency and to feel like they can rely on me, that I am there for them. I know that we are doing the best we can, and I am grateful to God for helping me through these moments, even when I forget to rely on that. Now, if I can just trust during that space between the moment when life turns upsidedown, and the moment it is righted again….

I hope that when you are in that blank space, between a problem arising and a solution arising, that you feel taken care of and can trust that it will all be okay.

Much love,
Marie