Miraculous Medal and Procedure Results

Thank you for all your support this week, through all the ups and downs. Especially the downs.

I recently lamented that I don’t see the everyday miracles like I used to.

For many years, I looked for a religious trip to Medjugorje. Medjugorje is a city in Bosnia where, in 1981, the Virgin Mary initially appeared to six children, and continues to appear to some of them today. Healing miracles have happened there as a result.

A few years ago, a friend strongly suggested that I go, but I didn’t. Then, through a series of happenings at my parish church, that friend and I were able to attend a talk by the one of the children (who is now an adult) and to hear the story of a local man (Artie Boyle) who was famously healed after his trip there.

I was newly inspired to go. I knew that I couldn’t do this on my own, and my casual search for a tour turned up nothing until about 2 weeks ago: Caroline Myss was organizing a trip. BUT it meant that I would miss the first week of school for the kids. One of boys would be getting settled in a new school and I felt that it wasn’t fair to him if he needed my support. The deadline passed, and I didn’t book the trip.

I continued to mull over my decision. Did I miss an opportunity? I felt physically and emotionally stronger than I had in a long time, and wondered if this was my good chance to travel there.

I didn’t wonder for too long though, as the events this past week overtook my life. Still, it remained in the back of my mind.

On Thursday, the day before my procedure, I needed something to distract myself. So, I opened the stack of mail gathering on my desk. Inside one of the envelopes was a Miraculous Medal! It felt like Mary was saying, you can’t come to me, but I can come to you. I am here.

I carried that medal with me, obsessively repeating the prayer for it, until the nurse made me hand it over before surgery.

Wow.

Okay – the surgical procedure. I have been so afraid to go to Brigham and Women’s hospital. My image was that you do things their way, that they have the knowledge and experience, and that I need to just let go and trust. I know myself well enough that I would get frustrated in that setting.

I was so wrong. I wanted them to use my power port, not a vein, for the anesthesia. They did discuss it with me at length, but in the end, I got to use it! There are a few drugs that I HATE and they found substitutes for those. Everyone had a good attitude and was quite pleasant. I cannot say enough good things about my experience there.

As for the procedure itself…The doctor was able to place the stent in one ureter. The other one seemed to be blocked. So, next up for me is a bigger surgery, where they make a hole through my back, into my kidney, and try to wind the stent through that way. I will have to stay overnight in the hospital for that one. (Blecch, but maybe I will again be pleasantly surprised.)

I was able to go home after I woke from the anesthesia, but I only remember waking up in my own bed. That was a little disorienting, but not as much as this: I started having hallucinations. I was having full conversations with people only I could see and hear. At 3:00 a.m, I thought a friend of mine was calling and I had a loud conversation with her over the phone. (My poor husband, awake all night with this) I kept trying to hang up and she had “just one more story.” Still hallucinating, I had another loud conversation with my oncologist. I woke up in a panic that I slept through my surgical slot; I started yelling hysterically, and I couldn’t understand my husband as he tried to explain that the procedure already happened. I woke another time in a panic saying that the kids were late for school. (They haven’t yet started school.)

My husband kept asking me questions like, “What is your name? Do you know where you are?” Sometimes I answered correctly. It all sounds funny now, but at the time, it really scared the kids. The household was a bit crazy.

I couldn’t stand or walk without help, and each time I tried to sit anywhere, I misjudged the distance and my husband caught me.

Finally, around noon today, I felt well enough to get up and take a shower. Yay!

Next steps:

  • I have chemo on Thursday next week, primarily because Tuesday is fully booked in the infusion center.
  • I will have the stent surgery sometime after that, probably the following week. They will call me to schedule it. I am trying not to think too much about that, but it keeps screaming out for my attention.

That’s about as far into the future that I can look!

Again, thank you for all your support, your prayers, love and caring.

Love and Blessings,
Marie

Birthday milestones

The boys had their birthdays this weekend, turning 13 and 10. One is becoming a teenager, and the other is entering double digits. A significant birthday for each of them.

It is significant for me too. I am keenly aware that I was diagnosed shortly after they turned 4 and 1 years old. I am in grateful awe that I am here to witness their growth and to share in these milestones. I honestly didn’t believe that I would make it this far, and that in itself is a miracle.

I am also grateful that this birthday for them is BEFORE I get the results of my CT scan on Tuesday. I can (try to) fully enjoy the day before dealing with whatever the CT scan may force me to deal with.

The doctors, I believe, anticipate growth. I wouldn’t be surprised at that news, based on some recent changes in my body. I can physically feel the growth of one of the tumors, I have pain more frequently and in new spots, and some lymph nodes are newly enlarged. None of those are good signs, though there is always a chance that things are “basically stable.”

Nevertheless, at my last appointment, for the first time, the doctors presented new chemo options for me to consider during these two weeks. This is so that, should the CT scan show growth, I will have had some time to mull the options and can make an on-the-spot decision about where to go next.

My two choices are FOLFOX (which includes a drug that gives neuropathy – I’ve had that before and it is not easy to live with) and Erbitux (which results in a “disfiguring” facial rash – also lovely). While I am grateful to have options, you have to admit that this is a difficult choice.

So I am hoping for stability and the ability to stick with the “devil I know.” In the meantime, I will celebrate the boys’ birthdays with a gratitude that I can!

Please send good vibes, as I send them straight back to you!

Love,
Marie

Good vibrations

These past few summer weeks have been filled with life events. We were sad to learn that our dear aunt and wonderful person on this planet passed away, joyfully attended a beautiful family wedding, received a visit from overseas friends (who brought Georgetown Cupcakes!), made a visit to the ER for stitches for one of the kids…I’m sure that the list isn’t complete. Oh, I had my CT scan last week – I get the results on Tuesday.

In the midst of everything, one of the boys decided to play the Tibetan bowl to help us to relax.

There are probably lots of ways to do this, but we play these bowls by first banging the mallet against the side to get it started (if you are good, you don’t need to kickstart it in this way!). Then we run the mallet around the edge of the bowl to keep the vibrations going and to change the frequency.

IMG_2303

J-man got the idea to add water to the bowl and then play it. At first he added a little water and, after he played for awhile, we noticed beautiful vibrations rippling evenly in the water. Then he added more water, and, because some of the water was already energized, we didn’t have to wait as long for the ripples to appear. And more water.

When the bowl was about three-quarters full, we saw this:

IMG_2306

The water started jumping straight up, like it was dancing! It was so fun to watch. Since our bodies are made of water, I figure that the vibrations from the bowl must energize those water molecules in a good way too.

Since I went through that really bad spell in March and April, I have slowly been regaining my strength and energy. As I recover, I’ve been especially conscious of what drains my energy and what gives me energy.

I hope that you are able to fill your day with whatever gives you energy, things that make every cell in your body vibrate together and dance.

Love and blessings,
Marie

Summer camp

Chemo today, Tuesday. Very much appreciate your prayers and positive thoughts for an easy but effective chemo session through Thursday, and also very much appreciate your understanding and support of our family as we go through this. Thank you.

The kids are done with school and we are transitioning to summer. The first couple of days are always bumpy for us as we switch to summer mode. I noticed that other moms went on a mom-son trip for the first days after school. What a great idea! But I didn’t do that and we bumbled along, adjusting to a new routine.

Fortunately, that lasted only for a couple of days. Our younger son started baseball camp on Monday. It was a last-minute decision and we didn’t get to check and see what other friends might be attending, but he was excited nonetheless as I dropped him off.

My personal highlight was that I got to pick him up at the end of the day. Since I got really sick in March, I haven’t been able to pick him up from school. The fifteen-minute drive, the waiting in the pickup line, and the drive home was just too much.

But, yesterday, I was able to pick him up after camp! He got into the car, bubbly and excited about his day. His bright smile was nonstop and he smelled of summer. And, without prompting, he talked with me about his day! I heard that many friends from his current school were in camp, as well as a friend from his old school who he was thrilled to see again. He got to practice catching grounders and pop-ups, and he felt like his skills were solid enough that he wasn’t going to embarrass himself. He had no problem passing the swim test, though the water was “probably 33 degrees!” (Fahrenheit)

It was energizing and fun and I felt more connected to him and his life. I miss the opportunity to hear that detail. Admittedly, it is rare – my boys don’t tend to talk about their day at all. But I was glad to be there when it happened. By the time he got home, his mind was onto something else.

Because I will have chemo, I can’t do the drive the rest of the week. I’m grateful to those who are driving the boys around. I don’t hate my life, and I do appreciate what I have. But it is these daily events that I miss the most and can leave me feeling disconnected.

It’s cool but clearly summer here in New England. Wherever you are, whatever your life is today, I hope you get to enjoy the daily events that keep you connected to your life and to the core of who you are and want to be.

Much love,
Marie

Cowboy Up!

We had a fabulous family vacation at a dude ranch in Arizona.

Front of Ranch

Going into this vacation, I wasn’t sure what to expect. Our older son loves horses, but they only allow kids to ride if they are in the kids’ program, and group activities are not really his thing. Our younger son loves groups, but he broke his wrist and it would be in a cast. My husband has a lifelong fear of horses. And given my current physical state, I would not be able to ride. It didn’t look like a winner of a trip.

But I have learned to listen when I am guided to do something, so we set off.

The ranch offers a variety of activities. On a typical vacation, we do everything together, but here, there was so much going on that we also did things on our own. The counselors for the kids’ club were fabulous with our older son, and he took group riding lessons every single day. Our younger son LOVED the kids club; he attended every hour that it was open and talked about it when it was not. My husband rode daily and overcame his fear of horses. He also did a lot of mountain biking. And I was able to do a hike, some writing, and relax.

I also got to meet a blogger I follow, as well as her family. That was a fun surprise!

Karen and me

Toward the end of the week, we all attended a BBQ. It was outside, with fire pits, s’mores and a guitar player crooning country songs. (Obviously, we arrived early. It did get hopping after awhile.)

Ranch BBQ

The kids ran off to play together, with our younger son in the thick of things. I watched the group from afar, and suddenly, it looked like another kid was kicking him. Soon, our son and another boy ran over to me.

The other boy spoke breathlessly. “That kid keeps kicking Lefty, for no reason!” (Our son had picked up that nickname early in the week, and it stuck.)

The kicking kid slunk up behind them with a mischievous smile. I don’t typically discipline other people’s children, so I just said to the group, “No kicking. None of you.”

And they ran off.

A little while later, I glanced over at the kids. It was much darker and harder to see, but it looked like our son was getting kicked again. A lot. And he was.

By all accounts, that same kid just went crazy, kicking him for no reason anyone could give. We figured that the best bet was to separate the fight, remove ourselves (all of us) from the situation and head back to our room. The parents of the other kid were handling him; it sounded like this wasn’t the first time this had happened, and I felt for them.

Lefty had a bruise and cuts on his leg, scratches on his face, a cut lip, and a bruised ego.

The worst part, he noted, was that the two of them would be in kids’ club together the next day. He felt like he couldn’t go.

We assured him that we would figure something out, and we all went to bed.

The next morning, we told him that he didn’t have to go to kids’ club. Everyone had seen what happened and I’m sure we could figure out a way for him to ride the horses outside kids’ club.

But he loved the time playing with his other friends there. He didn’t want to give that up just because of this one kid and this one episode.

He thought about it over breakfast and decided that he wanted to attend the kids’ club after all, if his father and I could talk with one of the counselors.

Of course, we did. She had seen the altercation, so we simply reminded her of what happened the night before and asked if they could help to manage the dynamic. And though Lefty was still a little hesitant, he was also still determined not to miss a minute of fun, so he walked into the kids’ club with his favorite counselor and pushed through any discomfort.

He had a fabulous day. And by two days later, the boys were actually friends.

I hope to remember that when something is really hard. Do I want to give up the other things that I really enjoy in order to avoid what makes me uncomfortable? When I am in a lot of discomfort, do I want to give up on the fun things in life? Just like we talked with his favorite counselor, I may need some help laying the groundwork, but maybe from there, I could get going again?

On our next-to-last day, Lefty was riding a new horse, who bucked and threw him to the ground. He rapidly crawled away, determined that he was okay and got back on the horse.

This is unusual there – they don’t aim for the guests to get bucked. As a result, he got a strong reputation around the ranch as the kid who got bucked and got back on the horse. One of the cowboys loaned him chaps for his next ride, which made him feel like a real cowboy, and they gave him a lasso of his own to take home.

They signed his cast with what is now my new motto:

Cowboy Up cast

A week in the life

At the start of my most recent chemo week, I looked ahead at the schedule. On Monday, my husband would be leaving for a four-day conference on the other side of the country. On Tuesday, I would start chemo.

This meant that my husband would be gone from Monday through late Thursday, and I would be home but physically and emotionally unavailable to the kids from Tuesday through Thursday or Friday (depending on how the week went).

Fortunately, we have a fabulous au pair, but my kids are at an age where they simply cannot go for 3-4 days without at least one parent on board, especially when one is sick. Their emotional bank risked being drained.

Alarm bells ringing in my head, I alerted the school and tutors. While they are all fabulous, none are or should expected to be a parent figure, but I knew they would do what they could.

So, on Monday, off goes my husband to his conference. On Tuesday, off I go to chemo.

As chemo weeks go, my treatment proceeded smoothly. Well, other than one glitch: I showed up at Dana Farber only to learn that I wasn’t actually scheduled for chemo. Part of me wanted to say “Great!” and run home, but I stayed put and they managed to find a slot for me.

Then I went home with my little “to go” bag of chemo pumping itself into my port, and I planted myself in my bed for the next few days.

Monday, Tuesday and Wednesday seemed to go fine. Everyone got to their scheduled classes, homework was completed and outside activities were attended.

However, on Thursday, one of the boys got into “trouble” at school. He works hard to appropriately manage his energy during the school day, but on that Thursday, he had few inner resources remaining to control his giggles. His behavior disrupted the class and needed to be addressed. We were grateful that the school handled it well, but, especially because he works hard on this, he felt horrible about himself and his life on many levels. He felt like he failed. Although I tried (pathetically, from my bed and hooked to a tube) to tell him it was okay, this was a tough week and at least it was the giggles and not something really bad, he accepted no excuses for his behavior.

Shortly after that, our other son tearfully told me that he still hopes that I will be healed but he now feels like this is it, this is how life will be: Treatments where I am in bed, days where I lounge around recovering, and then some good days, only to be followed by treatments again. On the plus side, his comments opened the door for us to talk about many aspects of his feelings. For example, he wondered aloud, might it be easier if I just died, because then all our suffering would be done and maybe we could all move on? (I have felt that way many times.) He asked about God and why he would let this happen. He didn’t know how he could continue to handle the stress of living with all this. I get it.

While I am glad that he was able to access and articulate his thoughts and feelings, this was one of the most difficult conversations I have had in my life. I wanted to be fully present for him at the same time that I just wanted to be anywhere else. But he was in a deep hole and it was awful for him and I needed to be there for him in any way that I could, no matter how crappy and inept I felt.

So, there we were. The kids were unraveling in their own ways, and I was not feeling like myself (to say the least) and unable to support them.

My husband arrived home late Thursday night, and we all started to rebuild the pieces of our lives. Slowly, one step at a time. By then, I was finally unhooked from chemo and had a long shower. We were back together as a family. We could move forward.

Luckily, my physical recovery was faster than usual and we were able to have friends visit on Saturday and Sunday. The normalcy of their presence halted our spiraling, provided healing, and brought us back to day-to-day life.

One step at a time, we regained our footing and our daily dynamic returned to what it was, slightly shifting in ways only visible (I think) to ourselves. I hope this experience helps the boys to be resilient in some way, but we are in the middle of the journey, so it is hard to know exactly where this will lead.

We are grateful to be doing this together and to have family and friends who are in this with us, who keep us heading down the path of light and joy and grounding and love. Thank you.

Blessings,
Marie

Climbing aboard the party train

Our nine-year-old wanted a birthday party. Normally a reasonable request (though, one would think he wouldn’t have to request it), but to me, a commitment to serve dinner to my family can feel like pressure. A party????

Again, though, he is nine, so I told him that I could do a small party, maybe 2-3 friends. It wasn’t his vision – he wanted a big blowout that included all his classmates plus some other friends – but he happily shifted gears and thought hard about who to invite. If he could have only 2-3 friends, who would they be?

We came up with a theme, venue and activities, and I ordered coordinated little toys, erasers, candy, etc. for the goody bags. I figured that was all I needed to do in advance, and entered my chemo week.

When I emerged from chemo to take care of the final details, I discovered that the themed goody bag stuff would only arrive AFTER the party. We weren’t sure how to get pizza delivered to the venue, and we had to somehow decorate the place before the party. Oh and buy decorations. The thoughts alone were overwhelming.

I first did what I do when overwhelmed: I made lists. I listed what needed to be done to pull the party together, what we needed to buy, what we needed to bring to the venue and when.

My next go-to when I am feeling overwhelmed: Turn to friends to help me maintain perspective. Facebook friends generously shared suggestions for where I could shop for all this stuff in person and made it feel manageable. One even offered to do it for me. (Thank you, all!!!)

And finally, I act. Although I normally rest after chemo, we all trekked to the closest recommended party store, where I sat and directed while the boys toured the store looking for the items on my list.

They veered from the mission at times,

Masks in Party City

but we did end up with a treasure trove of items with which we could decorate the room and fill the goody bags.

Then, I was spent. I did nothing but rest for the next 24 hours.

Undaunted, our nine-year-old assembled the goody bags for his friends, thoughtfully choosing matching colors of candy and little toys so the bags would look good, and he carefully placed the finished products in a safe place.

The next day, he went with his father to decorate the venue. They hung a Happy Birthday banner on the wall and laid a tablecloth and confetti on the table. On the way home, they picked up the cake, which he selected. Back at home, he found birthday candles in the drawer, counted out nine, and placed them aside.

While I watched him do all this, I felt horrible that I could not throw a simple birthday party for him. Not only that, while he was counting the hours until his party with great excitement, I was counting the hours with dread. Would I have the energy? How would I do it? I can’t even go out to dinner. How would I last through a multi-hour party, with children?

Tonight, when I put our son to bed, he was giddy with excitement for his big day. It was that little kid kind of excitement: pure, bubbly, trusting that it will all be great. And I finally noticed: I was focused on my expectations – that I could throw a party that he wanted, that doing all the work would be my gift to him. He didn’t mind that the party wasn’t a big shindig. He didn’t mind doing the work. His friends were coming to celebrate his birthday, everything was ready, and he felt special. He would have his very favorite, carefully chosen people around him, and it would be wonderful.

I’m climbing aboard his party train, and grateful that I can do what he needs of me, which is to be present.

Party on, with love,
Marie