This week’s adventure

Today, the day after the presidential election, the mood here in Boston and Cambridge feels a bit somber and quiet. The nice thing is that we are all shoring each other up. That feels good.

In the meantime…

I was hoping that this week, I wouldn’t need to be at Dana Farber or the Brigham, but that was not to be.

On Sunday, I landed in the Emergency Department. When I realized that something in my body was awry, I called my husband, who was in the middle of a Cub Scout adventure. He figured that something must be horribly wrong, as I never ask to go to the ED. Our son wasn’t thrilled to leave Scouts, or to be in the ED with me. Watching the nurses work on me was pretty scary. After a few minutes, he yelled out that he had a tick (he did not) so that someone would take him out of there. Thankfully, they fixed my problem and I headed home the same night.

As a follow-up to that visit, I need to have one of the stents replaced ASAP. Thursday (tomorrow) is the soonest they can do it, and it is with a doctor I haven’t yet met, though he comes recommended by the urologist I trust (who is too booked to do it himself).

Until that procedure, I am supposed to take antibiotics to ward off infection. They prescribed the gentlest one that they felt would work, but my nausea was out of control. After not eating for a few days, I had to stop them and rely on hope that there is no infection.

So I would deeply appreciate prayers and positive vibes for no infection and a smooth procedure. Thank you so very much!

I hope you are doing well today.

Love,
Marie

 

Cowboy Up!

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

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!

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.)

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:

Change in Plans

Normally, I get my CT scans done at Dana Farber, but today’s scan was scheduled at a suburban location of Brigham and Women’s Hospital. I was to arrive at 8:30 a.m.

As scan locations go, it was actually perfect. It was close to my son’s school, so I could drop him off with a comfortable amount of time arrive for the scan prep. The building was easy to find and had ample parking. Walking in, the lobby was bright, the signs were clear, the halls were uncrowded.

When I entered the waiting area for the scan room, one other patient was calmly waiting in a seat. They had two people available for check-in. Both chatted in a friendly, welcoming way.

I decided that I would ALWAYS come here. Boston’s normally packed waiting room was filled with frenzy and anxiety. This place was calm and the air felt clean.

I filled out the form they handed to me….it was a different form than the one in Boston, but the questions were similar enough. One stood out, though: Are your veins difficult to access?

Since mine are, I really appreciated that question. To have any hope of finding a vein, I needed to be well-hydrated, which I was not. My veins roll, so the needle has trouble going in and they need to fish or re-stick. If and when they do get in, the valves are close together, so they typically don’t get a return and need to try again. All this results in huge blood bubbles under my skin and black and blue on top of my skin that doesn’t heal for a week or me.

I used to be polite and say okay. I didn’t want to hurt their feelings, and I wanted to be open to the chance that it might work. But they always gave up and said I needed an IV nurse, and I always arrived home with bruises. So now I know.

I told the nice nurse that I needed to use my port. She pointed to a vein on the back of my hand that looked good, but I know that vein is just a tease – it looks attainable but then rejects the stick as soon as they jab me.

No. I can come back another time.

She left and returned 10 minutes later. She said that she checked the schedules at all the locations where they have an IV nurse and they are full.

I can come another day.

They found an appointment for me at 4 p.m. today in Boston and verified that an IV nurse would still be there. So, I returned home to eat before I have to fast again, write this little note to you to ask you to continue to send good energy this way, and then will prepare to arrive in Boston at 2:30 (to allow time to do the port access and drink the drink).

I’m actually pretty calm about all this – the place felt too good to be true! It’s a bummer to lose this whole day to the scan, but that is the way it is going to go today. The primary bummer is that I repeatedly assured my son that I would pick him up from school, which I can no longer do. One by one, in his world, I am becoming the Queen of Broken Promises and Disappointments.

Thanks so much for your support. I hope the logistics of your day are much smoother, or, if there is a glitch, it is for the better!

Love,
Marie

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

Parenting during a cancer diagnosis

We deeply appreciate the support that everyone gives us, in so many ways. We could not do this without you, and often, your strength carries us. Thank you.

Cancer can be isolating in many ways, and most especially when it comes to parenting. Your support holds us up so that we can be there for our kids, helping our children and our family as a whole.

Sometimes, though, I need to talk with someone who understands, someone who is in the trenches, someone who lives this. And while I would never wish this diagnosis on someone (okay, maybe I did once), I know that there are other people in this situation. I just don’t know them personally right now.

Plus, our kids can use some kind of support that they aren’t currently receiving, and I can’t put my finger on what that looks like. I know that there are many parts of this “lifestyle” that they find unsettling and abnormal, and for as much assistance (from family, friends and professionals) that we are fortunate to have, I can’t help but feel that they also need a community who understands their life situation and among whom they can feel normal.

I talked with the Dana Farber gastrointestinal social worker about this. She listened generously and heard our underlying need.

Most of the cancer world, as far as I can tell, is segmented by disease type. Breast cancer patients go together on the same floor and have their own designated topics for discussion and means of support. Colorectal and GI patients are grouped. So are blood cancers, bone cancers, and others, each with specific informational sessions and discussion groups.

But this social worker pulled together other professionals across those lines to create a half-day workshop to support families who have a parent dealing with a cancer diagnosis. Any kind of cancer.

I signed us up.

When the day arrived, I was post-chemo exhausted and no one in my family wanted to go, but I dragged myself and them. Our group consisted of approximately 16 adults (some who came as couples, some as singles) who brought children ranging from (I estimate) ages 4-14. During the first two hours, the children were in one room doing an activity and the adults were in another having a discussion.

We quickly found common ground. First of all, every family had a parent who was diagnosed with stage 4 disease.

Secondly, the aspects of our daily lives were surprisingly similar.

We related when someone talked about plans they made with the kids, then cancelled at the last minute because we felt too sick or tired. We chimed in about dealing with developmentally-appropriate discussions that come up but feel loaded (e.g., it is hard to discern when a child brings up death because they are processing their thoughts on what might happen with their parent, or they are simply learning about death as a general concept). We discussed helping our children deal with the overwhelming anger they can feel about the situation, often when they are still learning to recognize and label their feelings, and knowing that this anger can’t be directly resolved and doesn’t simply pass with time. We talked about not being as involved with our children as we would like, and needing to step back and let others do activities with them that we so desperately would prefer to do ourselves.

We recognized the strengths in each other, and we compared notes on ways to handle certain situations: How do you get a twelve-year-old to communicate? What is the best way to leave some essence of yourself and your teachings and beliefs with your children?

We commiserated on situations that we all face but none of us knew how to handle, like how do you enable a child, as they grow, to push you away as they naturally would without having them feel guilty about not spending enough time with you while they could? At what point do you tell a child that their parent is about to die?

And we talked about not being the parents we envisioned or having the family life we wanted to craft. Not even close.

I got a sense of normalcy from being with everyone in this group. Our boys connected with the other kids, one strongly enough to exchange information and want to stay in touch.

As you might imagine, we all arrived home EXHAUSTED. I find that I am still processing this – the benefits I got, the feelings that it stirred. Probably our biggest gain, individually and as a family, was a sense that we are not alone. We are feeling our way as our children grow, there are no good answers, but…we are not alone in this.

This group is not scheduled as an ongoing entity. I’m not sure it should be – I don’t have the energy to do this regularly! But it was helpful and I hope to always tap back into what I learned and the feelings it generated.

As we move forward, our family appreciates that you share your strength, your energy, your culinary skills, your caregiving, and the myriad other things you do and are. It surrounds us and carries us and helps us to find our way. And I have hope that, if something should happen to me, this energy as well as your presence will help to carry our family forward.

With love and gratitude,
Marie