Tag Archives: cancer

Oct 23

TMI, perhaps?

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Some of you may see this photo and already know what it means. I’m prepping for my first colonoscopy, which means for the next 3 hours I’m drinking 48 ounces of Gatorade mixed with a bottle (a bottle!!) of ClearLax. And then another bottle and 48 ounces more tomorrow morning. The amount of ClearLax seems almost dangerous! It’s absurd! The only perk is that I get to use my giant sugar skull mug that tends to be too big most of the time. In this case, it’s perfect.

The primary reason I’m posting this is because this process makes me think of my dad. I’m doing this ten years earlier than most because of his diagnosis when he was 53. He had a tumor so large, it blocked his ability to evacuate. The doctor couldn’t even complete the colonoscopy because she couldn’t get past the tumor. They speculated it could have been growing for 10 years or more.

Now, as a 40-year-old woman, I look back and wonder how in the hell someone can live with that kind of discomfort for so long? When I spoke with him about it later, he admitted to the telltale symptoms, but simply brushed them off. Blood in the stool? Hemorrhoids. Inability to defecate completely? Constipation (which could also explain the bloating).

I look back at pictures just prior to his diagnosis and he looks swollen. But not in a way that looks ill, if that makes sense. He had always been a big guy, overweight. The quality of his gut (which has always been there, and had always been firm) seemed to change…it was broader, and maybe flabbier? But his spirit was no different. He was always easy going and funny. One of my favorite pictures of him is when Spence and I surprised him with a birthday cake during his visit to Florida. He was all smiles. He had a great time during that trip. But, god, he must have felt awful if he wasn’t able to evacuate his bowels completely, and if he hadn’t been able to for some time. He was diagnosed a year later.

One of the first things he said to me after he had surgery and started on chemo was that he hadn’t felt so good in years. In hindsight, that makes me so sad…that he lived in discomfort for so long.

Jul 20

The lead up to good news

SangriaMy mom was given a break from chemo three months ago. Her tumor markers were low–single digits–and had been for sometime. Her oncologist finally said, You know what, we’re going to give you a break from chemo. The numbers aren’t moving, so we may as well give your body a break. She was wary; she thought the moment she stopped chemo, the cancer would start growing again.

However, once the break started, and once she was reminded that this is the point of chemo–to get rid of cancer as much as possible so that you can stop taking chemo–she embraced it.

She gardened, she cleaned, she shopped, and she rode with me to Massachusetts and stayed with me for two weeks. (And we shopped and ate and shopped. It was great.)

When she left, I knew my brother would be visiting her within a week after getting back to Ohio, so I knew she would be entertained and not too sad about not being with me anymore (though we were both sad to be by ourselves after being together for so long).

My brother texted me this morning to say they were getting ready to go see mom’s oncologist for her three month update. I had totally forgotten that appointment was today.

I know loss and fear are are integral parts of the human experience, along with, of course, joy, happiness, love, anger. There is no way to avoid loss and fear, and there is no way to only experience joy, happiness, love. Being alive means constantly navigating the waves of these emotions, and knowing, as Buddha says, that none of them lasts forever.

So, I received my brother’s text and replied, then immediately felt like I had to put something out to the universe. Something to help mom as she approached this appointment. I am not a particularly religious person; my prayer tends to be one of gratitude directed out towards the universe, in general. But whenever I get to this kind of point in my path, my first instinct is to pray for things to be okay.

I remember, distinctly, lying in bed and saying prayers as a child, and repeating over and over “please let my mom be okay.please let my dad be okay; please let me grandma be okay. please let them live a long time; please let them know I love them.” I would say this over and over as if the number of times I said it increased the chances of it happening. (Side note: I also think, as I look back on my life and early adulthood, there is evidence of very mild obsessive/compulsive behavior, and eventually I’d like to write a post considering what it means to grow up at a time/in an environment where that behavior was viewed as voluntary and not compulsory. There was no diagnosing it; there was only the instruction to stop it. But I digress.)

Even as an adult in my late 20s, when my dad was living and dying with cancer and I was hundreds and hundreds of miles away, I would pray at night, “please let him have one more day. please please please.” And he did, and I got to spend the last 30 days of his life right next to him. But that had nothing to do with my prayer. The prayer was to make me feel like I was doing something.

And today, I received the text, and I thought I need to pray that the cancer didn’t come back. I need to ask god, the universe, anyone who’s listening to please let the numbers be low. But that’s not how prayer works. And I know it. You cannot ask for things to be different than how they are. Reality is reality and there is no altering it from moment to moment with entreaties to god. And when I acknowledge that, and remind myself, it is a fool’s errand to pray that something be different than it is, I come back to the wish for strength. Please let me be strong enough to handle the news. Please let my mom be strong enough to handle the news.

I changed my thoughts, my prayers, my wishes to that, and though it doesn’t satisfy the initial desire to drop to my knees and bargain with god, it helps center me nonetheless. I felt a bit sturdier. I reminded myself of the great time we just had together, a photo of her drinking a big ol’ margarita hanging on my refrigerator. I adore that woman, but we will not be here together forever. That is just a fact. I can barely think it without getting choked up, but it’s fact.

I first learned about my dad’s cancer due to call I received from my grandma. She left a message suggesting I call and talk to my dad. My stomach knotted and my skin felt prickly. I knew something weird was going on. When I called, he said, “I’ve got cancer, kid.” I started crying. And I’ll never forget one of the first things out of his mouth when I started crying was telling me we’d had 27 great years together, and to not be sad. I cried harder.

But he was right. He died when I was 30, and we had 30 great, great years together. Some kids don’t get as many. And my mom and I have had 40 great years together. And I hope to have 40 more (though I can hear mom say No Way to that many more years…she’s bit achey from all these years of chemo, and while she doesn’t want to go anytime soon, she also says she doesn’t want to be hanging around and in pain for years on end.)

I was at the office when I received the next few texts from my brother. When I saw it was him, my heart flipped. I knew they held the news I’d been waiting for yet afraid to hear. And then he said her numbers had only gone up a bit! They planned to let her stay off chemo for another three months. I was elated. That’s the complicating element in these health dramas… you’re filled with dread and nerves while waiting for the news, to the point of nausea, and when the news comes and it’s good, you feel giddy with relief.

And so three more months without chemo for madre. I am so, so happy, though I know we’ll all be going through this again three months from now. But for today, we’re all happy. I texted her how happy I was that her numbers were low. She texted back, me too, can you believe it?!!! We went to celebrate and have dinner. I had a sangria!

I told her she should have had several.

May 24

funeral prep

Today I went with mom to make her funeral arrangements.

She’s doing well and feeling good, and it seems those are the times she can talk about death and dying openly. When she’s ill, or when the spectre of death seems too close, the last thing she wants to think about are the details of funeral planning and obituary writing. It’s too scary. Only when the idea is abstracted can we face it directly.

I didn’t hesitate to say yes when she asked me to go.  My stepdad didn’t think she should do it, and he wouldn’t go with her to do it.  He defaults to dark humor to slap away any serious conversations about death and dying. I think it’s how he was raised…you didn’t talk about such things. Having studied Buddhism for so long, I know it’s a fool’s errand to pretend that we won’t die. One of my favorite quotes says, “The problem is you think you have time.” It’s attributed to Buddha and it says everything.

We arrived early to the funeral home, and I felt a bit awkwardo because people were also arriving for a funeral/showing. I always want to show the utmost respect for those grieving, and I wasn’t expecting our business to be handled in the same areas as people who were crying for a loved one. I mean, we were in different rooms, but I would have thought we would have been in a different part of the building. Maybe I overthink things.

Because we were early, we waited in a cafe (yes, the funeral home had a cafe and were serving Starbucks coffee. Say what?) One of the reasons mom wanted me to come, besides giving her general support, is because she plans to be cremated and wants to buy me and my brother a keepsake where we can hold her ashes. Something small so she’ll always be with us. The cafe also displayed a number of urns and other ways to remember loved ones. We were walking around, commenting on these items. We saw a brochure listing items that could be used as carriers for cremains, and it had a section for jewelry.

JEWELRY!

Now, I don’t know if you know me personally, but I love jewerly, particularly turquoise. It is my favorite stone and I wish to be bedazzled in it. And when I opened up the brochure, one of the first items I saw was a silver medallion with a turquoise bead.”I want that!” I said, pointing to the photo of the pendant like a child picking out a christmas present. “I love it!” 

We walked to one of the couches to look at the brochure, and I remembered I was not simply picking out a necklace. “Mom, I have to say this is one of the most bizarre conversations I’ve ever had. It’s kind of weird being so excited about a necklace, then remembering, Oh, Yeah, this is going to carry mom’sashes.” She laughed and said it didn’t bother her. This was the time to talk about such things.

The meeting took two hours and there were a lot of details to go through. I mean, a lot. It made me want to get my arrangements made just so no one has to do it for me because it’s a lot to deal with. They have all her family members’ names for the obituary, and some fun facts about her. I tried to get her to include her cat’s name in the obit, but she thought that wouldn’t look too good considering she’d opted to not name all seven of her half-siblings, which cracked me up.

Her urn is a beautiful biodegrable box with buterflies carved in to it. It’s a work of art. She loves it. We specified the details of her very small service. There were so many details to consider. So many.

When we left, she thanked me for being there with her, helping with decisions and asking questions. I asked her if she felt better.  She said she felt much better now that it was all taken care of. 

And that is what matters.

Feb 10

10 years since then

I dreamt about my dad last night.

We were in my childhood home; I was visiting and aggravated he was still using the microwave from when I was a kid. It was, like, 85 watts or something, and I couldn’t cook anything.

“Dad, why are you still using this microwave?” I asked. “I’ll get you another one. We could probably find one at Goodwill.”

That’s all I remember.

My dad died on February 19, 2006–the ten year anniversary is next week. I’ll be in Florida then, visiting with dear friends; a welcome celebration of life and living.

However, the week leading up to the day of dad’s death is also saturated with beautiful and painful memories. 

It all started on the 13th, when I took him to a new oncologist for a second opinion.

I could smell sickness on his breath. He had shrunk and his dark circles surrounded his eyes.

I won’t go into all the details, but we left that meeting with a glimmer of hope about the future, though the future was much shorter than we could know.

He wanted to stop to buy his girlfriend flowers for Valentine’s Day. He couldn’t walk far, so I told him I’d go in and pick out things. I bought a bouquet and a stuffed animal, and when I came back, I climbed in and he said, “I should have told you to get something for yourself, kid.”

I’ll never forget that sentence.

He insisted on paying me and wrote me a check that I never cashed. I still have it upstairs in my office. Probably the last time he ever wrote his name.

We surprised his girlfriend completely. I left the flowers in my car until I could sneak them in. When she saw them, there were tears and laughter. She was amazed he’d think of her while feeling so lousy. Six days later, he’d be gone.

I’ve been working on the following essay for quite a while…a few years, I think. I’m trying to strip the language down to make it precise and lyrical. I don’t know if it will ever be “finished,” but on this anniversary, I thought I’d share it:

People were making foolish decisions on The Price Is Right. Underestimating the cost of cough syrup. Overbidding in the Showcase Showdowns. “What are they doing?” I asked dad, who was reclined on the hospital bed Hospice had provided. It took up space next to the woodstove. “Don’t these people have any idea what things cost?”

*

When he dozed off, I would march out in the frigid, February air to get more wood for the stove. As a teenager, I couldn’t keep a woodstove burning. I would arrive from school to a cold, empty house, and curl up in my heated waterbed until dad returned from work. He’d tease me for my inability to get the fire going, and ignite the woodstove with little effort. Now, throwing wood in the stove and adjusting the air grates, I don’t know why it was so difficult when I was younger. Add oxygen and the fire burns. Deplete oxygen and the fire goes out. 

*

At night, we would watch Becker, his favorite show. I’d fall asleep on the couch, and the days before Hospice had given him his hospital bed—the days when he had to sleep upright in his recliner because he felt like he was drowning when he lay flat on his back—I would wake often to see him staring at the television, blue light dancing across his ghostly face, dark circles ringing his eyes, the volume nearly inaudible so as not to wake me. “Are you alright, dad?” I’d ask. “Yeah, I’m fine, kid.”

*

On a Monday in February, we went searching for a second opinion. The doctor who had been treating him for colon cancer for the last three years had already said there was nothing more to do. I stood in the new doctor’s office, sick with fear, anticipating this doctor to reiterate the last doctor’s prognosis. Instead, she gave him the gift of hope. She said, all was not lost, all had not been tried. I left there upbeat, because this bit of news made him feel a little better. “Are you afraid to die?” I asked him as I drove us home. “Kid, none of us know when it’s our time,” he said. “I’m not going to go before the Man upstairs calls me, so there’s no reason to dwell on it.” I could sense he didn’t want to discuss it any further. 

*

Six days later his oxygen waned. We had a tank of it in the house and his girlfriend put a mask over his mouth, told him to breathe in. He didn’t feel right. We didn’t know that an artery had given way—that he was quietly bleeding out through his colostomy bag. I couldn’t wait for the Hospice caretaker, so I called the squad. When they arrived, a young woman tried to take his pulse, but couldn’t find it. “How are you feeling?” she asked. “Not too bad. Just having a little trouble breathing,” he said. I rushed to my truck, and watched as they lifted his gurney into the back, his eyes open, alert. I followed the squad. They stopped at a traffic light near the highway, and sat there for several minutes. I could see the top of dad’s head through the windows of the back doors as emergency workers moved around. They switched on the emergency lights and sirens, and the vehicle rocketed down the highway. I watched from my truck, unable to keep up. I called and woke my brother.

*

When we got to the emergency room, he was behind a curtain. The nurses were talking amongst themselves, and I heard one say she needed a colostomy bag for him. I had one with me—his girlfriend had anticipated this need and gave me one before I left for the hospital. “I have a colostomy bag,” I said, and I moved into the private, curtained area. I handed it over to a nurse and looked at dad. His pupils were fixed; his eyes glided effortlessly back and forth in perfect, mechanical time. 

There was oxygen, but the fire had burned out. 

Sep 9

Bonus moments

I wept on my return drive to Illinois.

Specifically, I cried while leaving Newark, and making my way west through Columbus. I am sometimes so struck by grief at the passing moments, and the people who’ve passed; I often feel completely engulfed in mourning and joy, simultaneously. This world, this orb we walk upon is so damn extraordinary. It is weird and beautiful.

As Oliver Sacks recently wrote before leaving this world: “Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”

It is such a privilege, filled with elation and pain.

My mom. My mom, my mom, my mom.

She is my favorite person on this big ol’ planet. She and my father, both, but dad died nine years ago, so he lives with me in a different way.

She is a good listener and good conversationalist. The longer I live, the more I realize how rare are these traits. How often I’ve been with people who ask nary a question after I’ve asked them several. Conversations are hard to start that way. When I find people who are good listeners and good conversationalists, I hold on to them for dear life.

But mom. She’s a good listener and she remembers my stories. If I’ve mentioned a co-worker or a friend more than once, she will remember their names; she will remember my history with them; she will ask after them; if they were facing a particular dilemma that I told her about, she will ask how things worked out. She prays for us. For our guardian angels to keep us all safe.

Mom has cancer. She has been living with cancer since 2000. The first was breast cancer. A lumpectomy, followed by a partial mastectomy and a chemo called the Red Devil because it makes people so violently ill, and the cancer never returned. Four year laters, though, ovarian cancer showed up.

She found the cancer at a fairly early stage through a series of events that seem so random and arbitrary that it makes even a cynic like me wonder whether there is some divine power involved–but that story will be told another time.

For now, mom. Who has experienced chemo side effects that would have been fit punishments in Dante’s Inferno. It boggles my mind to see and hear some of the side effects she’s known in her life with cancer. It’s frightening how much the body can hurt.

But. She has been well as of late. Her tumor markers are rising slowly, but her maintenance chemo seems to be holding them within a reasonable level. And she feels okay. Even after chemo, she feels not so bad. She’s enjoying herself–in spite of her neuropathy, her constantly watering eyes, her leg cramps, her general achiness. When we get ready to go shopping, she pops some pain medication in anticipation that all the walking will make her sore. But, damn it, she is ALWAYS ready to go shopping.

And she enjoys herself. A song called “Honey, I’m Good” came on the radio when we were in the car. “This is the song I told you about!”she said while turning up the radio so I could hear it in the backseat. “Isn’t it catchy?” With its twangy country feel, I wasn’t impressed. “I think I hate it,” I said and she protested and told me to keep listening.

The next day it was just the two of us going shopping in the next city over. “You know, I can play that silly song you like whenever I want,” I said and she lit up and said she wanted to hear it.

On the way to the store we were too preoccupied with chatting, but on the way back she asked me to find the song. “Ugh,” I said while searching through Spotify, and she poo pooed my protest.

When the song came on, she started dancing in her seat. Moving her arms and head with the music, changing up her moves as necessary to fit the beat. And I laughed. Hysterically. If I had video, it would have gone viral. I laughed through the entire song. My sides ached from laughing. And she was totally earnest in her dancing, keeping it up until the song finished.

And this is my mom: so many surgical scars, numb feet, blackened fingernails, thinning chemo hair, yet still dancing. Still laughing.  Still making me laugh. Still shopping.

The Tibetan monk Thich Nhat Hanh had a stroke some months ago. His recovery has been challenging, but he accepts it with grace. A friend of his said that every moment he has with Thay now are bonus moments, and he’s just so grateful for them.

There have been many instances when I prepared for the worst regarding mom. There were scenarios that didn’t look like they’d get better. But then the did. She jokes that she has outlived her expiration date.

And I cry when I leave because I know a day will come when a bad scenario won’t get better. It will happen to us all, of course, but it feels more tangible when the person is going to the doctor regularly for news about her health. 

And I dread that day. Just the thought if it chokes me with grief.

Every time I leave her, I hope that we’ll have a chance for another fun visit where she is feeling pretty okay.

I am just so thankful for the bonus moments. They are precious and fleeting, and bring me such joy.