When good news feels like bad news

Buried in here is a silver lining if I could just hold onto it.

In January, my mom had an appointment to find out if her cancer was in remission.

Her doctor, who I both like and respect, was measuredly optimistic. The chemo was working, and most of the enlarged lymph nodes from previous scans were gone. There were two remaining grey areas in her chest and one of her adrenal glands. It wasn’t clear if they had ever been cancerous, or if they were now, but the doctor suggested doing two more rounds of chemo just to be sure.

Mom arrived the next morning for treatment and was told by a different doctor that with a scan as good as her’s she was done! Go home!

She did a happy dance in the oncology office.

Three hours later, she was called by yet another person, and told that her doctor wanted more chemo (duh, we knew that), could she come back next week. Three days after that, it was put off again so Mom could have more tests.

It felt like the scene in The Princess Bride where the Dread Pirate Roberts ends every day with, “Goodnight, Wesley. Sleep well. I’ll most likely kill you in the morning.”

For the fourth time in three weeks, Mom prepared herself for chemo.

And then…her doctor called the night before to say that she shouldn’t have it, for now. She explained that Mom was considered, “Pet Negative,” meaning her pet scan didn’t show any cancer.

I asked, “Does that mean she is in remission?”

“Some would say that,” the doctor said. “We can’t see any cancer, but that doesn’t necessarily mean that it’s not there.”

This was good news, right?

Hidden within the back and forth, and back and forth, is that Mom doesn’t have to receive more treatment, perhaps forever. She’ll have another scan in two months, but for now her calendar, and life, is wide open.

That wasn’t how I heard it, though. I was pissed.

Six months ago we were told that Mom was a shoe-in for remission, and my A-student sights have been set on that gold star ever since. This was not the cancer-ending crescendo I was counting on.

In fact, it sounded frustratingly familiar.

Eleven years ago, my white blob of a brain tumor was nearly removed. The doctors couldn’t risk taking all of it, so they left a little blobby reminder that I visit on MRIs every year. While I should be fine, there remains a chance that I’m not.

Talking to my Mom’s doctor brought me right back to where I was then. Feeling like our goal post kept getting moved. That it was up to someone else to let us┬ámove on.

It took me a couple days to see the bigger picture.

How lucky we are. How special this time is, in both of our lives. And the big one — that no one is standing in the way of us celebrating Right Now.

I could throw myself a pity party (okay, I just did) over neither of us getting the moment I believe that we deserved…or I could give it to us.

We have a celebratory dinner planned this week. I found a box of old photos in a closet, and will bring them so that we can share memories, and laughs.

As for my celebration, I booked a float sandwich. Great name, right? Sixty-minutes of peaceful floatation in a pool of warm water and Epsom salts followed by a Swedish massage.

Someone pop the champagne. We did it!

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Waiting for remission

This afternoon, my mom will find out if her cancer is in remission.

Right now, I have no doubt that she is in bed dreaming of a faraway, happy place. In fact, I assume that when I pick her up at 1:30pm she will have just woken up. She’s incredibly skilled at hiding when she doesn’t want to admit what’s really happening.

Maybe that’s a family gene. Ten minutes ago I rearranged the furniture in my office.

What’s troubling me is a feeling that she isn’t in remission yet. I realize the fact that ‘yet’ is even in that sentence is a blessing. The doctors have been talking about its eventuality since she was diagnosed in September. It’s a great goal post to have.

That doesn’t help today’s appointment though, or what it means in the short term. If cancer is still present, she’ll have her seventh round of chemo, and probably an eighth for good measure three weeks later.

And more chemo means more waiting. Another PET scan in a month to determine if it was successful. Another long sit in a doctor’s office to find out the news.

It feels like this waiting will never end.

There’s a reason for that — I’ve been waiting much longer than the eight months since a swollen lymph node first appeared on the bone behind her ear. A round, dense marble underneath her skin that she shrugged off at first until four more appeared on her neck over the course of a couple weeks. Some growing to nearly an inch in diameter. By the time she begrudgingly agreed to have a biopsy, she had lost count.

My mom doesn’t take care of herself very well. Eating poorly, smoking, avoiding the doctor…bad habits that tend to bite you in the butt at some point.

For what may be my entire adult life, I have been waiting for something to happen to her.

It’s terrible to say that, I realize. She is a good person. She raised me with lots of love; called me cutesy nicknames like Tinkerbell; practiced my spelling homework with me while making breakfast before she left for work; drove me to slumber parties, and sometimes picked me back up in the middle of the night when I couldn’t sleep. To this day, she has never let me leave the house without a twenty dollar bill in my pocket.

Strange how I forget those things while waiting.

I also forget that this is a gift.

It wasn’t until I wrote about my brain tumor diagnosis eight years after it happened, that I realized the gift that I had been given back then. How I had an MRI in December 2004 after an ear infection wouldn’t go away, and when the doctor called me, days before Christmas, he said nothing about the results except that we could discuss them in person in January. I assumed everything was fine.

I have no idea what I did that holiday, but I can tell you what I wasn’t doing: waiting. I was blissfully unaware of what was about to happen, and I’ll be forever thankful to the doctor for granting me that stretch of time.

My experience back then isn’t all that different from where my mom and I find ourselves today.

If it’s true, which it is, that something will eventually happen to all of us and the people we love, the minutes, days, and years of waiting between now and then are a big deal. They’re our whole lives.

I feel sad that my mom is sick. Writing this makes me more sad, actually, because I’m reminded how much I love her. How immensely sad it will be when she’s no longer here for me to worry about.

Today likely isn’t that day, though, no matter what her doctor tells us.

It kind of opens it up then, doesn’t it? No matter what happens, we have this afternoon together. We are buying groceries, driving to the appointment, and then having dinner.

That’s a pretty good day. One I will treasure in the future when I think back about all the time we had to wait, together.

Which means I might as well start treasuring it now.

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What to do when someone’s in crisis

I really thought I knew how to be helpful when someone was facing something scary. Turns out I know less than I thought I did.

Being the one in a hospital bed is very different than being the worried loved one sitting next to it.

In the last two months since my mom’s diagnosis, I’ve been the recipient of so much love and support, some of it coming from places and people I wasn’t expecting. I have them to thank for these tips.

 

1) What to say

  • “I’m sorry.”
  • “I believe in you.”
  • “You are strong.”
  • Nothing.

It’s easier to say, “I’m here if you want to talk,” than it is to actually be that person. Most of us want desperately to say something, the right thing, anything that will help our loved ones feel better about their situation.

If you really want to help, do a lot of listening.

And if the person is silent — this is important — that doesn’t mean you need to fill the silence. It means the opposite. Sit there for as long as possible, and let us speak when we are ready.

The fact that we aren’t talking means that we trust you, and don’t feel like we have to take care of you. That is a really good thing.

~~ My friend, writer David Hicks, provided another suggestion. Ask, “What’s it like?” Most people in crisis want to share what’s happening, but don’t want to be a burden on others. This question may open the door.

 

2) What not to say

  • “You’ll be fine.”
  • “He’s in a better place.”
  • “You must be relieved.”

People often see another’s tragedy from their own point of view.

What do they see? Unbearable discomfort. Their own, because the person in front of them is hurting, grieving, not who they were the last time they saw them. Many freak out by other people’s pain, so much so that they need to say something SO THEY FEEL BETTER (not the person actually in crisis).

This isn’t about you.

In fact, those four words should be what you say…to yourself. Your wish that we’ll be fine or relieved that our loved one isn’t suffering any more is only your wish. Pay attention to how we talk about what’s happening. Repeat our words back to us if you need something to say. Or say nothing.

If you are worried that saying nothing isn’t helpful enough, please know what a difference it makes, how much it has meant to me. You may also want to repeat those four words to yourself again.

 

3) What to do

  • Show up.
  • Do something without asking.
  • Check in regularly to say hi and don’t expect an answer.

Your first reaction may be to ask, “What can I do? or “What do you need?” and chances are high that unless a specific job has surfaced in the last five minutes your loved one will have no idea what to tell you. They are likely so immersed in what’s happening that thinking about what they need is a luxury of time and energy that they don’t have.

When people asked me, I said, “I wish I knew; I’m sure I could use the help.”

If you really want to help, be prepared to come up with your own answer.

Three examples that blew me away recently:

On the day my mom was admitted into the hospital, I was beyond worried and overwhelmed. I sent texts to a couple close friends as I headed to the emergency room, and within 30 minutes three of them showed up. There were tender hugs, advice when asked for it, and friendly faces when she and I needed them the most.

By the next day I could email more people, and the love kept coming. One colleague left me a voicemail saying she was thinking of me, to not worry about calling her back. She then called again a few days after that and said the same thing. I could feel her support without anything required by me to keep it coming.

Saving the best for last. A close friend from Washington, DC couldn’t show up in person because I was with my family in upstate New York, so later that week there was a knock on the front door of my parents’ house. Two brimming baskets were delivered by the talented local chef Leslie Robinson with Culinary Accommodations — Mason jars filled with homemade, nourishing soup enough to feed an army.┬áSome of the soup is still in the freezer two months later. I couldn’t eat it all!

When I thanked my friend for buying these, she said, “You’re busy taking care of everyone else right now. These soups are to take care of you.”

Every time I heat up a bowl, even now when my mom is home doing well so far with chemotherapy, and life is relatively back to normal, I feel comforted.

I had no idea what I needed. These friends had to figure it out, and I’ll be forever grateful that they did.
 
 

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