Through a hard place to the good

During my entire life, I watched my parents take care of other people. They prepare meals for those who need them and, when their family or friends can’t drive, they take them to the store, post office, doctor visits and any place else they need to go.They are the ones who show up in your hospital room, who care for the elderly, who regularly visit their loved ones in a nursing home, who sit with their friends as they are dying, who show up for a funeral.

Every month for the past seven years, since my diagnosis, they drove over 600 miles each way to take care of the kids, my husband and me during three of my chemo days. During the times when I had surgery, they stayed for longer stretches.

My father – who owned a grocery store and was a butcher his entire adult life – did the grocery shopping and made sure we had fresh food in the house. My mother cooked every meal (even delivering hot lunches to my kids at school) and maintained the kitchen. I loved that she was at home there and ran it like her own. They played with the kids and supervised their schedules. They kept the house clean and made sure that life was easier for my husband. They kept me company as I lay in bed or figured out which drugs helped with nausea and which simply made me a crazy person.

Because I watched them take care of so many others, I took for granted that taking care of me was just part of “what they do.”

This past winter, they didn’t come to visit and help. Granted, we had record snowfall this past winter in Boston, so I assumed that kept them at home. Plus they were getting older (I didn’t like to admit that) and the drive was long.

I missed having them around but was fine with it. My basic assumption is that help comes in many forms and not to hold expectations of what others should do for me. I’m blessed to have help at all!

But the other weekend, my husband shared with me that my parents are coming less frequently because it is hard for them to watch me go through this. Yes, I have good days, but because they are here to help, they see me on my not-so-good days. And to be honest, even my good days are not “normal;” even when we visit on Christmas (for example), I spend a lot of time sitting or in bed.

I don’t like to think that the people I love are suffering because of what I am going through, so I mostly ignore that. But here I was, face to face with the fact that two of the strongest people I know, people who do this as a way of life, find this hard. How difficult it must be. And if it is difficult for them, as adults, how difficult it must be for my children to live this every day. I was deeply sad.

I wondered if I should just stop, if that would be easier for everyone. Then anyone who needs to could mourn for a bit and get on with their life. I know, spoken as one who has not lost a parent, sibling, spouse or child.

I don’t like to feel sorry for myself so, after whining to a friend, I showered then took the dog for a walk.

A few houses away, the dog stopped to relive himself. I noticed that it was in a neighbor’s front lawn, but it was on some rocks near a flower pot. Probably not ideal, but at least their grass wouldn’t turn yellow. Besides, it was just another thing on my list of things that I cannot do anything about.

I felt like it was okay.

Another neighbor did not. She saw this and let me know in no uncertain terms that my dog was not welcome there. I was feeling so down that I couldn’t look at her. I just apologized and walked on.

As I walked, I continued to think. I was now sad AND angry. Who was she to talk to me that way? I tried to remind myself of who I was, of the good and strong things I have done. I wanted to feel like I was better than her. I told myself that, if this was her biggest worry then how small her life must be.

I also knew that when I am down, I tend to attract a lot of negative energy, and I was certainly down. I had to get out of this cycle or more crap would be coming my way. How could I break this cycle?

I tried to be generous and think positive thoughts about this woman. Maybe something heavy was on her mind this morning? Maybe her life is challenging in some way that I couldn’t see.

I hated that I didn’t stand up for myself. In my mind, I considered what I might say if I had a do-over, how I might handle it.

And at the bottom of all this, I kept wondering, why I am still here? Life felt crappy. I didn’t want to be here. Why doesn’t this all just end?

Walking back toward home, I noticed this woman still in front of her house, hosing down her driveway. I stopped in front of her, intending to tell her….I don’t know. Something.

She kept hosing the driveway and didn’t look at me until I spoke.

“I want to apologize,” is what came out of my mouth. “I’m sorry. I don’t usually walk the dog around here. You won’t see us again, but I want you to know that I didn’t intend to cause a problem.”

She started telling me about the rules for walking a dog, where they can go to the bathroom, etc., and I listened. She was clearly upset and focused on this issue, and it felt bigger than just me and my dog.

When she finished talking, I apologized again, and my eyes welled up with tears. She tried to console me.

“I’m sorry. I just had a really hard morning.” And I found myself telling her about it.

Her entire being changed, and she hugged me. She apologized for being so hard on me and told me why she was fixated on this topic this morning. She cried with me.

We talked about other things in our lives when she suddenly said, “God wants you here for a reason. And you have to take care of those boys. They need you.”

Unprompted, it was the answer to my question and exactly what I needed to hear. Maybe the path to get to this message was painful, but that path got me where I needed to be, and I could finally move forward from here. A gift, from an unlikely source.

So I need to remember, not only the message she gave, but also that when a moment is uncomfortable, it may be taking to me someplace I need to go.

Hopefully, you can get your messages in more fun ways than this. And hopefully I can too!

Love,
Marie

Note: A few details of this story have been omitted and a few have been slightly changed to hide the identity of the woman. I am grateful for all that she did, but she would be mortified if others knew who she was. I really believe she was doing God’s work, but I would hate to add to any burden she feels.

Complicated blessings

Chemo went smoothly this week with far fewer side effects than is typical. Plus I didn’t get hip pain from the Neulasta shot. I’m grateful.

The only real problem I ran into was this: On Thursday night, I couldn’t sleep. On Friday night, I did sleep…for two hours. On Saturday, totally exhausted, I went to bed around 8:00 p.m.

Our younger son fell asleep in our bed and, like many kids, seems to expand at night. The dog curled up at my feet – well, really, where my knees would be. I folded myself into the postage-stamp size space that remained and actually fell asleep.

Before too long, I woke to three long, piercing beeps that indicate our clothes dryer is done. My husband was leaving on a trip the next day and probably doing laundry. I was sure he would get the clothes so I fell back asleep.

But no – he was off doing something else and didn’t even hear the beeps. I know because about ten minutes later, the beeps went off again. Too tired to get up and empty the dryer for him, I put the pillow over my head and went back to sleep. But then it happened again. And again. I finally realized that he must have the Wrinkle Guard cycle going – where the dryer periodically turns itself back on and fluffs the clothes a bit so they don’t wrinkle. If you don’t stop this, it will continue for hours. So I dragged myself out of bed and turned off the dryer. (Yes, I checked to see if anything needed to be taken out. It was fine.)

I returned to my tiny space in the bed, which got even smaller since I left it, and fell asleep again.

Around 12:30, our older son appeared at my bedside.

“I can’t sleep.”

This often happens if he uses his iPad before bed, which we don’t allow but happens anyway.

I was annoyed and tempted to tell him to just go back to bed, but I remembered that I am not always able to get up and walk him back to his room.

So I did. But my anger brewed: He used his iPad, and my sleep suffers.

Without thinking, I gave him a hard time about it, which wasn’t conducive to either of us getting any rest.

Eventually, though, he drifted off. And while he did, I reminded myself again that I am fortunate to I feel well enough to get myself out of bed and help him.

Then I took it further: I am lucky to have someone who will turn to me for help.

Thinking back over the annoyances of the night, it felt nice to have a child and a dog so close, and my husband nearby.

My life has become much smaller in many ways. I don’t get to socialize in the ways I used to, and I miss connecting personally with friends and sharing in a meal, some exercise, or entertainment. I am often in the house for days in a row, with my husband and sons as my only social contact and our dog as my constant companion. I became grateful that, even if they were keeping me awake, they were there.

Our son fell asleep relatively quickly, and I returned to my room where I slept through the night, remembering that the things that bother me are often integrated with their very blessings.

Many blessings to you, with their complications and all, and joy through it.

Love and light,
Marie

Exceptional Patient

One of my favorite curious medical phrases was used on the old TV show Friends, when Monica and Chandler were having trouble conceiving a baby. The doctor told Monica that she had an “inhospitable uterus.” Monica’s response was something like, “I’ve always tried to be a good hostess!” So many medical terms can feel like blaming the patient, and even if we try not to take them personally, they can get into our psyche.

So, I prioritize how my doctor talks to me. My oncologist is generally upbeat and focuses on the positive, but I also know that I have no control over what comes out of his mouth. To protect myself, I often avoid topics that might head in an unpleasant direction.

Last week, however, a friend suggested that I talk with my doctor about how I am doing overall. I sometimes feel like I am out there on the skinny branches and, to be honest, I wanted to hear from him that I was doing a good job with all of this. But because asking “how am I doing?” would open me up to any answer he might give, I plunged in tentatively.

He responded that I am an “Exceptional Patient,” and I laughed out loud.

I know that he didn’t mean that I am scoring all A’s on some patient scorecard, and he certainly didn’t mean that I am so wonderfully compliant with his advice.

“Exceptional Patient” turns out to be medical speak for a patient who does not conform to the norm or to expectations.

He talked about his other Exceptional Patients and how the norm is constantly being redefined (because current statistics are based on past data, and all of us are creating new data every day we live). He explained that we don’t really know what creates an Exceptional Patient, though it involves some degree of luck regarding where the cancer migrates and how quickly it grows.

Even if it was a medical term and not the result of anything I specifically did, I liked hearing a positive phrase, especially a positive medical phrase. And chemo went pretty smoothly last week – I think that positive talk helped.

I would be remiss if I didn’t also acknowledge your positive thoughts and positive talk, which  keeps me going and often arrives just when I need lifting or encouragement to continue. Thank you. Your words are powerful and I’m sure you see the impact they have on others as you go through your day. What a gift you give. I hope that you are lifted by the good words of others as well.

Love and blessings,
Marie

Energy boost

After the last chemo, I laid around for more days than I would like. My energy was low and I didn’t have much to write; each day looked like the one before it.

Despite my low ability to get around, we decided to go ahead with a planned trip to Naples, Florida. Last Tuesday, with quite a bit of help, I was able to travel with my family. Once we arrived, I spent the first two days in bed while they explored the beach and pool. For me, it was more of the same, just new surroundings, but the kids were having fun and it was nice to have some new scenery.

A friend of mine, a wonderful woman I met on one of my trips to see John of God in Abadiania, Brazil, lives in Naples. She had JUST returned to town (again from Abadiania, Brazil) and texted me on Wednesday morning that, that very night, there would be a crystal bowl meditation with a focus on the Divine Mother. Did I want to go?

Wow. Crystal bowls, meditation and Divine Mother. Any one of those would get me there. Yes.

With some effort, I got dressed, put on make-up and made my way downstairs, where my friend picked me up.

The meditation was being held in a salt cave. More coolness (even literally). We arrived early so that I could sit near the large crystal gifted to the owner from John of God and the entities. (That is a story in itself.)

Before the session began, the owner showed my friend and me some of the bowls she would be playing, and I suddenly felt Shira beside me, smiling and laughing. Of course. Shira was the first one to introduce me to crystal bowls and sound healing, and she owned a few that she played beautifully. They gave her much joy. And another connection: Shira traveled to Brazil with my friend even before I did! I loved feeling her there with both of us.

The meditation lasted about an hour and a half, and afterwards, I got to visit with my friend, staying up later than I had in weeks. These events shifted my energy for the rest of the trip. The next day, I could get out of bed early, leave the room, enjoy the resort, and even eat a couple of real meals of solid food! That may not sound like much, but it was a big shift for me.

I remain surprised and grateful for the things that arise to keep me going. Deep gratitude to my friend for initiating all this.

And I hope that, as you read this, you know that you are on your way to your next energy boost as well. You never know where it will come from, or whose energy you will boost by your thoughtful actions!

Love,
Marie

Angels around us

Despite the woes of the past three weeks, this week has been fabulous so far. I’ve been up and around and even able to go to our son’s baseball game! So things are looking much better than they were last week (though still working on that clean out…details, I suppose.)

I have to share this story from early in the week, because I LOVE this kind of thing!

Wanting to give my colon every chance to work, I put myself on a (mostly) liquid diet.

One day (I think it was Monday), I started the day with almond mylk that a neighbor and friend generously (and regularly) makes for me.

A few hours later, I stared into the fridge. My dilemma: Without “eating,” I didn’t have the energy to juice or make soup. I could have almond mylk again, but I didn’t see anything I could really eat.

The doorbell rang and I was happily surprised to see Phyllis standing there.

“I brought food,” she said, running back to her car to retrieve it.

Not only was it nice to see her, but Phyllis is a retired professional chef. Her food is amazing, and I was grateful. I hadn’t planned dinner for my family and was glad that she had it covered.

She returned from her car carrying a tray of chicken parmesan, a container of homemade tomato sauce and three broths. THREE BROTHS. That I could eat.

She could not have looked more like an angel if she were showing wings and a halo.

Here’s to all the angels around us who deliver these miracles like it is no big deal.

Love,
Marie

Talk Dirty with Me

Last week, my life was, at its heart, a shitshow. At times, literally.

This is likely to be a relatively graphic post. If you might be squeamish or uncomfortable, especially about bodily output, feel free to exit now. However, if you decide to come along for the ride, please know that, in rectal cancer, sometimes things get yucky.

Let’s go back to Tuesday of last week, when I went to Dana Farber for chemo.

Lisa drove me there, and I told her that she could just drop me off, but I am so grateful that she stayed. I don’t know how I would have made it through that appointment by myself.

When I met with my doctor, we chatted about my past week: The open bellybutton wound, the various pain sites, the horrible intestinal blockage from the previous Friday, my trials with trying to get advice from them over the phone and, oh, by the way, I’ve several days of constipation.

He looked worried at that last one and told me they would have to do an x-ray before deciding on chemo.

Before deciding on chemo????

Well, he said, the constipation could be due to a tumor blocking the colon. If that were the case, no chemo today and surgery ASAP to remove that part of the intestine and move my colostomy bag to another place.

I’ve been through that surgery twice before, and, while it is not fun, I know that I can do it. Still, I focused on no blockage.

I thought he was done but no. He wanted to show me what was behind Door #2.

Another possibility: Tumor is weighing on my colon, making it difficult for the colon to move and process nutrition. If my colon cannot move, I would need a permanent G-tube and 24/7 IV nutrition. Would I work with the surgeon I love (who is at a different hospital) or should he find one here for me?

Select a surgeon? I was still stuck on “permanent G-tube and 24/7 IV nutrition.” I don’t like to leap ahead at possibilities, but his talk of picking a surgeon left me spinning and stunned and wondering if I would ever be able to eat solid foods again. I tried to focus on the present moment, that maybe instead I could have “what was behind the curtain” or even run off the stage and choose none of the above.

Instead, Lisa and I (in my zombie state) left his office and took an elevator, the bridge, and another elevator to get to X-ray.

Lisa insisted that we pray (thanks!), then I did the X-ray and returned to the doctor while Lisa waited for a copy of the disk (that I could bring home for my husband to scrutinize if needed).

On my way back to the doctor’s office, I stopped behind one bank of elevators, sat on the floor, and cried.

While there, my phone dinged with three texts. The first was from a woman I know, not in person, but through this blog. Her mother read my blog but has since passed away. The daughter and I became friends and stay in touch as we can, though not with regularity. Her words in this unexpected text reached my heart, as though she and her mother were saying it would, somehow, be okay. Another text arrived from a friend simply checking in. And the third text, from a friend who is an energy healer, asked if I might need some help.

So I took a deep breath, soaked in the love, and ventured on to see my doctor.

The good news is that, while I am officially full of crap, nothing obvious is slowing down the works and I was able to get chemo last week. (Don’t you love it when chemo is the best case scenario?)

In the days that followed, I continued my chemo and recovery at home, in bed, really sad. I never before had considered the thought of a feeding tube; I don’t know what I would choose to do.

Then one morning, as I lay in bed looking at all the green, leafy trees outside my bedroom window, I noticed one dead branch hanging in front of them.

Often, when I need perspective and strength, I think of my grandfather (who loved good, fresh food) and hoped he was with me now. It felt like a fantasy, and I don’t like to make deals with the spirits, but I suddenly said to him, “It sure would be nice to see a cardinal on this branch to say that you are with me.”

I kid you not, a cardinal almost immediately landed and stayed for maybe a minute before it flew out of sight.

I know that I dodged a bullet last week, and for that, I am grateful. But as I continue to work through the slow colon issues, I can’t help feeling that Door #2 could be looming. Wish me luck. And thank God and the universe that you can eat and poop!

Love,
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