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