40 Days of Stage 4 Breast Cancer

by holli on November 17, 2017

Cancer is still a word I equate with death.

This past year, cancer has shifted my perspective in layers. The only comparisons I can think of are when I gave birth for the first time, or visited a refugee camp for the first time: both left me feeling utterly powerless, while empowered with a greater sense of humanity and love than I ever imagined possible. Intense doesn’t seem like a strong enough word to describe it.

I’ve shared some of the story about my experience losing my mom, but kept a lot of the intensity and full story close to my chest. Now, I’m ready to share. This is my experience of watching my mom die in 40 days. My intention is to share what I learned, and what I wish I had known before. Perhaps it’ll help someone not feel so alone, and be empowered to make hard decisions.

My mom came up to Seattle to help me. She and my step dad took care of our kids while I had my wisdom teeth removed and my husband was away for work. A day and half later, I was able to visit with them and enjoy their company. My mom told me she would stay for Thanksgiving, partly because she missed all her family up here, and partly because she wanted to see someone for what she thought was a lymphatic drainage issue affecting her breast.

You see, my mom has been attuned to health and wellness most of my life. She was always reading books on all the diets out there, traditional and herbal remedies, and exercised regularly. When she spoke about her own health, no one doubted her.

After Thanksgiving, I finally spoke up and asked her what she was doing, in practical terms to care for her breast. She started to share the changes she was seeing, and I knew it was more than some lymphatic trouble. I insisted to go see my Naturopath for a breast exam. But, of course being the week of Thanksgiving, she wasn’t there, but in the practice there was someone who could see her the next week.

November 29th – The breast exam

I took her to the appointment, and saw her exam. Her breast fully undressed, and the Naturopath’s blue-gloved hands doing a full exam, checking her arm pits for nodes and texture changes, and I knew it was something big. I knew and didn’t know, or didn’t want to know yet. It’s not real until it is spoken. The Naturopath was kind, spoke very little, but insisted that she get a Mammogram as soon as possible. My insides were shaking as we left, and bravely, as calmly as I could, made sure she had called to make an appointment for the mammogram.

Dec. 2nd – The mammogram appointment

A routine Mammogram appointment can last about 45 minutes. We arrive early to fill out paperwork. My brother came with us. We arrived before noon, and didn’t leave until after 5pm. Our mom had her first mammogram, an ultrasound and a biopsy. I was able to go into an inner waiting room with her and all the half robed women waiting for their appointments. I could not go into the room where they give the mammograms, but I was able to be there during her ultrasound. The woman doctor was kind, the nurse was kind to make sure she was comfortable, and then it got very quiet. The doctor’s voice cracked as she said, “This is breast cancer.” My mom’s voice replied very eerily calm, “Well, that’s what we came to find out.” And I couldn’t say anything. I wanted to scream or cry. Instead I just focused on breathing.

We were told she had breast cancer, but that there are various types and other factors, so we needed to wait for the biopsy results to learn more. So, we waited.

She decided she didn’t want any more pokes or prodding and wanted to find alternative treatment. I told her she had to tell her family she had cancer no matter if she had found a treatment plan or not. She needed everyone’s support now. She didn’t want to tell anyone until she had something to tell them, a plan, or more than just cancer. She didn’t want anyone to see her differently or start to treat her differently. It’s like she was embarrassed. But she was also very overwhelmed.

I called my sister and told her we needed her here in Seattle. She flew out immediately.

We all got along at first, and then when it came time for getting a plan in place, research done and more information, we were strongly divided. We learned that she had invasive ductal carcinoma, which is the most common type, and highly treatable. We heard stories from her friends, our shared acquaintances and alternative practitioners about recoveries and answered prayers.

She was determined to beat her breast cancer. And then the pain started to not just get worse, but it grew in stark stages, wiping her out most of the day. She started eating less. By December 24th, I held a family meeting and explained that we needed to talk about what she wanted to happen when things got far worse. I was going out of town to visit my in-laws, and knew that we needed to have this conversation before I left. I needed to know what her wishes were in case things kept getting worse while I was gone. It was the hardest conversation I have ever had.

We signed a power of attorney for health care document, and hoped it would not be needed.

December 31st – The breakdown.

We were stuck in the middle of Oregon with car trouble. My brother called and said that things were getting worse, that I needed to get home as soon as possible. Our mom was in so much pain they took her to the ER where she was immediately run through an MRI, and needed a lot of medication to get on top of the pain.

We sorted out our car trouble enough to get me and our kids in a rental car headed to Seattle. It was snowing, and raining, and dark when we pulled into the hospital parking garage at 9pm. Of course, the hospital is so big, we parked in the wrong garage and had to walk/run around to another block to enter the hospital. It was just what we needed to shake off a 5-hour drive.

After the kids left the room, my brother told me the full diagnosis: her cancer had metastasized all over her body. It was on her liver, her hip, her vertebrae, her skull and in her chest cavity. My response was, “We should ask her how she wants to die.” Our sister got up and walked to the bathroom to throw up. This was news too harsh to bear. These were decisions too painful to talk about.

Once our mom was awake and ready to talk, she had the same calm voice I heard in the exam room of her initial breast ultrasound. She said she didn’t want to give up, and wanted to know her options. A couple more days of tests lay ahead of her. And, I never asked her the question, “How do you want to die?”

She was strong enough to undergo one round of Chemotherapy. Her pain came back with a level I have never seen in anyone before. The Palliative Care team showed up on day 6 or 7. They told us their job was to help make sure she was being seen as a whole person, to double check her dosages, comfort and care, to transition to hospice or other care as needed.

Her rooms changed 8 times during her 12-day hospital stay. Each day was a different test or medication change. Her oncologist visited every morning and evening to check on her. He spoke kindly, and compassionately. The words he used were, “tight spot,” and “not many other options,” and “strong kidneys and heart” and never once mentioned her chances of survival. There were no predictions or statistics or percentages given for each choice. We never asked.

It was a lot of care to manage: her oncologist, her Palliative care nurse practitioner, her kidney doctor, her brief heart monitor doctor, and the rotating shifts of hospital doctors not to mention nurses and assistants.

The nurses were mostly wonderful. Almost all of them were helpful, kind and more informative than the various doctors, explaining things to us like tests we had never heard of or seen before. We stayed with her around the clock in shifts: my brother and his fiancé, my sister and her husband or me, my step dad and me or my sister. We helped out as much as we could. I’m not sure how much we helped her as much as we helped each other through each day. There were some gaps in transferring her care such as what arm or leg should be used for a blood pressure reading. It was such a consistent detail that was missed that I brought a printed sign in each day and taped it above her hospital bed.

She had a handful of visitors during her stay. At first she didn’t want anyone to see her in such disarray, and then she finally said she didn’t care what she looked like, she loved seeing everyone even if she took short naps and woke up to the sound of our voices talking. She had an army of people praying for her.

The hospital chaplain came and visited a few times making sure we had someone to talk with or knew she or he were there when needed.

The chemotherapy started to work. It wiped her out the day of and after, but then, the third day, it seemed hopeful. The numbers looked good. She was transferred to a shared room. We started to feel really hopeful.

January 12th The shortest, longest day.

I remember the morning sunshine. It was a bright day. Full of hope. We managed our changing shifts with mom. Then, test results came back. Another room change. Once in her new, single occupancy room, the hospital doctor spoke plainly about how her professional opinion was that she had less than 24 hours left. That was around 1 or 2pm.

I called my husband first. He was away at a conference, and I needed him home.

We called and texted family to come say their goodbyes as soon as possible.

My sister’s husband took over for me, getting our kids from school and attending a dress rehearsal for our daughter’s school talent show. I could not leave the hospital.

By 4pm, the hospital waiting room was full of family members, and we managed short shifts so everyone had a chance to see her. In her last 10 minutes, she was surrounded by her three kids, her two grandkids, son-in-law, soon to be daughter-in-law and husband. Her breathing was getting slower, her heart monitor beeping less frequently, and our grip on her held tight. We all told her how we loved her, and then my brother gently said the kids should go, so I took them out to sit with the rest of the family and was glad my husband had just arrived to be with them.

I returned to hold her hand one last time. Her breathing had stopped, and then her heart. It didn’t seem real, but it was. Some of us cried out loud and others witnessed silently. A nurse checked all her vitals and recorded her death close to 7pm. They took off all the monitor cables and let us be as long as we needed.

I cut a bit of her hair off, and shared it with my siblings. I don’t know why or what I’ll do with her hair, but it just seemed like the step I needed to take.

The staff brought in a gift basket of snacks. No one felt like eating. Her oncologist visited one last time.

We cleaned out her room, gathered all her belongings, and by the time we were leaving she looked like she was gone. There was paperwork that had to be filled out, decisions about her body.

We left, and regrouped in the days following making all the rest of the hard decisions about how to say goodbye with her community.

. . .

Forty Days of Cancer taught me that cancer doesn’t care if you’re healthy and young or old and frail. It doesn’t matter what gender or age you are. It just happens. While there are types and treatments for each type, the experience varies widely. It’s not like you see in the movies. What one woman’s breast cancer experience has been will be as different as childbirth – each as unique as the person.

 

Forty Days of Cancer taught me how to have hard conversations.

 

Forty Days of Cancer taught me that there are still large gaps in our health care system. Especially between alternative and traditional care practitioners. The communication about options and risks and possible outcomes needs to be clearer. When our mom had chosen to do a round of Chemotherapy, the nurse administering it took my brother and I outside her room to verify that she understood the risks. With tears in her eyes she asked if she knew how much pain would come next?

 

Forty Days of Cancer is still teaching me, almost a full year later.

 

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Let’s Talk About Birth And Death

by holli on August 1, 2017

My beautiful Mom, hosting a Hawaiian themed birthday for my Aunt, her younger sister. This blurred photo captures the way I saw her for much of my childhood: beautiful, capable and giving. I’m the little girl in the right corner.

For my Birthday, my Facebook page is bright with messages of well wishes and greetings to mark the day. This photo popped up from my Aunt, and I adore it, even if it brought me some tears today. A bittersweet memory that she’s physically gone but always a part of my life.

Why do we share birth stories with everyone whether or not they want to hear it, but don’t also share the stories about those last days or hours for those who have died?

I think the reason is that we enjoy the “miracle” of when a life begins, but we are afraid of the discomfort death brings. The topic brings up a well of emotional responses, sometimes trauma of loss is often more than we can articulate. Just like birth, there are those whose stories a similar and stories that stand out, strikingly unique.

There’s a saying that you don’t grow up until your parents die. I have not idea where that originated, but I’ve been thinking about it a lot since my Mom died battling breast cancer in January.

I still have a Dad alive and well. So, I’m not an adult orphan. But, I do have a big wave of grief washing over every special moment in life right now. Everything I would have called to tell her sits and shifts quietly, reminding me that she’s in fact really gone. I am at a loss to fully describe this part of loss except to say it’s strange.

And, I’m learning more than I imagined or ever pondered to ask. Death is part of the life cycle, and I have decided to be more open to sharing this experience. But, I’m not going to tell every single person I run into at the grocery store – unsolicited birth stories aren’t cool, and so death stories are likely the same.

A recent example is when I was interviewed on the Podcast, Bare Naked Bravery. The host, Emily Ann Peterson, was full of questions about topics like my heritage, creativity and collaboration, and then grief came up. I was surprised at how good it was to share despite how painful it felt. And that is what sparked this whole question of sharing more about death.

While I was researching the phrase, “You grow up when your parent(s) die,” I found a few interesting articles to share:

Adult Orphans: when parents die

Scott Simon: We don’t fully grow up until we lose our parents

The main message I’ve learned so far is that there is no right or wrong with death. Yes, there’s the ideal of dying at a very old age, and there’s the benefit of dying young – being remembered as having been at a youthful prime, but they both don’t hold true: dying is hard no matter what age.

All this to share that I know nothing about death, except that I’m willing to talk about it.

 

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Kaarisa’s Palette: Dutch Baby Recipe

June 16, 2017

Once your oven is on, fill it. 2 is better than one! Dutch baby is easy to make and bake,  2 Lodge Logic 10 inch skillets are used side by side. Once your oven is on fill it. The 10 inch is a single serving for an adult. Top it hot with whatever you want. Sausage, […]

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Six Months Into Grief

June 12, 2017

Today marks her 6th month since passing away. Everything I had learned about grief before she died is insufficient. It’s a new level of grief I didn’t know existed. I view mothers as anchors now, and I think I finally understand the old cliche tattoo of  “Mother” on a banner over an anchor that sailors […]

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