I’ve been snooping around my parents house, looking for old photos. I know we have them, my dad loves photography, and I know we have boxes of pictures around here somewhere. Snooping is probably too strong a word, really I’m just searching around. I’m trying to find as many photos of my mom as possible. Most of the photos that are around the house are studio portraits, or other photos of me, from school, from dance. There are few adult pictures of my parents that don’t also include a younger version of me. I want to find these photos because I want to have as many visual reminders of who my mom was, physically, before the cancer came. I want to remember her holding me while I suspiciously suss out Donald Duck, or holding me on her lap in a blue chair that’s almost just as much a part of my childhood memories. I want to remember her smiling, and vibrant, and sometimes, clearly annoyed with the photographer (my dad.) I want all of these as a constant reminder that my mom is so much more than the emaciated woman, lying mostly unconscious in a hospital bed.
I knew we would be here eventually, mom in a hospital bed at home. Logically I understood that fact, we had talked about what she wanted should the chemo not work, but knowing something and actually seeing something are two different things.
I’ve done a number of things in my life that people would consider difficult. I’ve run five half marathons, and one full marathon. I’ve fundraised thousands of dollars for charities. I competed in Irish Step Dancing at the local, Regional, National and World level, and I went back to school to finish my Bachelor’s as an adult, while working full time. All of those things were hard in their own right, with many challenges and obstacles along the way. I’m proud of those accomplishments, and find value in doing things that are hard. However, watching cancer take my mother has been the hardest thing I’ve ever done in my life, and I would never want to repeat this.
I used to picture death at home as something soft, and well light. Like Beth in Little Women, or being on the Oprah Show, where everyone looks good. I pictured something quiet, and solemn and meaningful. Long conversations about shared memories, and wisdom. I’m not sure why I thought this, I’d seen my mom close enough to death in the ICU twice, and it was not soft, and she did not look good. Death at home is a hospital bed, and the hum and sigh of the oxygen machine. It’s fights over eye drops, and clamped mouths to avoid medications and oral hygiene. It’s angry; bedsores that have turned into massive open wounds. It is not romantic, or heartwarming, it is sunken skin, and lost hair. It smells, and is changing diapers, and suctioning secretions from your mother’s trach tube, and I was not really prepared.
I don’t know how to really describe what it is to watch my mom, the strongest woman I’ve ever known, melt away to skin and bones in a hospital bed. This all started in December of 2013, with a cold that wouldn’t go away. By chance, my mother happened to see her dentist in February of 2014, who noticed something strange in the back of her mouth, which lead to an appointment with her primary care, a referral to an ENT, and finally a meeting with an oncologist who specializes in head and neck cancers. In very early March of 2014, my mother was diagnosed with Stage IV Squamous Cell Carcinoma of the soft palate. The recommendation was an invasive surgery where doctors would take the entire tumor, along with the lymph nodes nearby, and then radiation. The surgery happened on April 1st, and while the recovery took several weeks longer than expected due to pneumonia in the hospital, my mom was ready to move on to radiation at the end of June. The doctors were confident, so she had her scans done, and met with a radiation oncologist, who was not as pleased with the results of the surgery. Either the surgeons were not able to get the entire tumor, and/or more had grown, and spread. This should have been our first big red flag that this beast was not going to play by our idea of the rules. So, instead of starting radiation, we prepared for a second surgery – going back in, this time also removing several inches of jaw. Surgeons grafted bone from her shin to reconstruct, and we were in for several more weeks of hospital recovery before it was finally time to move on to radiation, and also chemotherapy.
We told my mom you could barely see the scar, which was true, but the incisions, which went from the middle of her bottom lip, down her chin and around under of her jawline to her left ear, created a cleft that hadn’t existed before. My mom joked with family and doctors that she had wanted to lose 15 pounds, and hoped she accomplished this while being fed through a tube. Both treatments had pretty awful side effects. The usual, loss of hair didn’t bother my mom, and I teased her that she was lucky she had a good shaped head. Being bald actually looked pretty good on her. She wore turban like hats when her head got cold, and kept pushing forward. The radiation damaged the hearing in her left ear, and kept her from sleeping. The chemo, however packed the biggest punch and made her sick to the point of hospitalization in September. My mom’s younger sister had been visiting, and convinced my ad to take my mom to the ER on Saturday. She was admitted, and on Sunday things took a turn. It was bad. I got a 3am phone call that Monday, “you need to get up here.” My mom had been struggling to breathe, so they moved her to ICU as a precaution, to keep a closer watch. It was decided she should be intubated and have some assistance from a ventilator, and while she was having the tube put in, she went into cardiac arrest. The doctors were able to get her heart beating again, but in addition to the damage from the cardiac episode, her liver, and kidneys began to fail, and she required continuous dialysis. When my dad picked me up at SFO, he tried to prepare me, he said the doctors had warned him that if my mom didn’t regain consciousness within the day, it was unlikely she ever would.
By the time we reached the hospital, and my mom’s ICU room, she was sitting up and awake. In fact, the first thing she wrote (because she was still on a ventilator, she couldn’t speak,) was “why are you here? I don’t want you to get in trouble with work.” From then on, my mom made a recovery that surprised even the ICU doctors. She was released to a facility outside Marin who could take her and provide dialysis, and within a few weeks was off dialysis completely, and ready to get back to her radiation treatments. Chemo however was on hold indefinitely. My mom finished out her radiation treatments, was moved to another facility before being released home just after Thanksgiving. I was able to be home with my mom for Christmas, and through part of the new year, thanks to Family Medical Leave. I was there so I could take her to doctors appointments, and my dad could go back to work with a little less stress. I took my mom to get her scans done to check the results of her completed radiation sessions, as well as to see how effective the chemo had been before it had nearly killed her.
In early January, we got the results from the scans. There was good news, and bad news. The good news was the radiation had worked, and there was no sign of cancer in her soft palate. The bad news was the cancer had spread. She had a small growth on the bone just above her left eye, and there were now tumors in her lungs. We went back to radiation for the small growth above the eye, and tried half doses of the chemo for the other tumors. By St. Patrick’s Day, she was back in ICU. On the plus side, the chemo had shrunk some of the tumors, and kept the growth of the cancer at bay. So, once she was strong enough, it was back to the half doses of chemo, and again in September, she was back in ICU. This time was worse. My dad called me mid day, at work, and was in tears on the phone. He wouldn’t even leave the hospital to pick me up from the airport, so I took an Uber to UCSF.
My mom had had another cardiac episode, and this time, the ventilator was breathing for her, not just assisting. She was on three medications, which were pumping her heart, while a fourth medication managed her heart rate, all of these medicines were at the highest doses possible. Machines were doing nearly everything for her, and she was heavily sedated. Her face was shrunken, her skin was a greyish color. Frankly, she looked dead, or as near it as I had ever seen. Her skin was grey, her face was shrunken, and I felt almost certain that this was it. doctors asked us about her Advanced Care Directive, did we want them to perform compressions should she go into cardiac arrest again? We said no, they asked if we wanted them to pursue dialysis should her kidneys get worse and fail? Again, we said no. My mom had been very clear; she did not want machines keeping her alive if it weren’t likely she would recover. We were told that should she not show signs of recovery within the next day or so we would need to make a decision about the medications, and the ventilator. While my dad and I drove from the hospital, to the temporary apartment my parents had been staying in while they sold their house, in preparation for retirement, our conversation was about logistics. It was a holiday weekend, if she passed over the weekend, how quickly could we get a Wake and Rosary scheduled, along with a Funeral Mass? Even though my mom wanted to be cremated, she also wanted all the Catholic pomp and circumstance. My dad thought she might like having the mass at St. Mary’s Cathedral, so he’d have to see if he knew anyone to contact there. My heart was in my throat for days. All four of my mom’s brothers came to see her, and her youngest sister also came. Her older sister had broken her hip and couldn’t come. Everyone seemed resigned to the fact that this was the end.
And yet, somehow, she started to turn around. Her liver function got better, she was weaned off the various blood pressure and heart rate medications. Her kidneys never got bad enough to require dialysis, and after 4 and a half weeks, she was moved to a step-down facility in order to get the physical therapy and occupational therapy needed to get her home. She spent a total of 4 months between two sub acute facilities before she and my dad were able to drive to Phoenix where they planned to retire near my mom’s family. That was December 2015.
Once in Phoenix, my parents bought a house, adopted a second dog, and my mom met with her new medical team at the Mayo Clinic. Because she reacted so poorly to even half doses of chemo, the doctors recommended she try a monoclonal infusion instead. It is supposed to act like chemo without the same side effects. She went ahead and got through her infusions, with the only side effect being fatigue, and in April had more scans done to determine the results.
This was the tipping point. Not only had the infusions NOT done anything to shrink the existing tumors in her lungs, they had grown, and spread. The oncologist gave my parents an estimate of 6 months. My mom agreed to try chemo again, not wanting to give up. This time, she made it through two infusions before landing in the critical care unit with pneumonia in both lungs, bacteria in her bloodstream, and an infection in her bowels. After two days in the hospital, and meeting with the doctors, and her oncologist, my mom decided to stop treatment and pursue hospice care. She spent about a week in an in-patient facility while doctors assessed her, and the social worker ensured we would have all the equipment necessary at the house to keep her comfortable. I had to return to Los Angeles and work before my mom was able to go home. I came back to visit a few weeks later over Memorial Day, and while my mom was hanging in there, the decline was clear. My dad and I came to an agreement only a few weeks later. I had ten weeks of Family Medical Leave available to me, or until my mom passed. At that point, the FMLA was void, and I would have 3 consecutive paid days off from work for bereavement. Any extension was at the discretion of my boss. I sat down with my two supervisors and let them know I intended to take as much of the 10 weeks as possible, and requested an extension on the bereavement time. My boss felt comfortable extending my leave through “the following Monday,” and I packed up my car and drove to Phoenix the following Wednesday.
Once I arrived, reality began to sink in. It had only been a few weeks but my mom looked awful. She was losing her hair again, and had a terrible scrape on her face and arms from when she’d tried to get out of bed in the middle of the night. She had always bruised easily, at least for the last 10 years or so in taking a blood thinner, but the left side of her face was a purple and blue mess. I tried to throw myself into helping my dad with the day to day. My dad seemed to be keeping himself going just by remaining in nearly constant motion. To give him the chance to run errands, like grocery shopping, and picking up mail at the post office, and taking the dogs in to get baths, I learned how to use a portable suction machine, pushing a small tube down my mother’s trachea to suck out the thick secretions she isn’t strong enough to cough up on her own. I had a refresher course on how to give her meds first through the feeding tube that was placed in her abdomen, and then, just directly into her mouth when the only meds left are Morphine for pain, and Ativan for anxiety and breathing.
I don’t know how to describe how it feels to look into your mother’s eyes, pupils just tiny black dots in a watery sea of blue green that seems to be looking at nothing. Worse, when she is asleep most of the day, and can barely open her eyes. When she can’t speak, and doesn’t have the strength to write words, and you want nothing more than to tell her how much you love her, but she can only move her lips a little and blink at you, and you’re not sure if she even knows who you are. You tell her she’s the best mom, the greatest mom, the mom you would choose again and again if you could. You want her to know, really know that she didn’t ruin your life all those times you screamed those words at her, and slammed doors. You want to tell her you would take this from her if you could, because it’s all so unfair.
I would sleep during the day, I couldn’t sleep at night, because somewhere, at some time I heard that most people pass at night or in the early morning hours – and I would lie in bed, cocooned in the sheets and blankets, having taken my own dose of Ativan, and melatonin in a desperate plea for sleep. But every sound in the house is my dad coming to tell me she’s gone. My whole body felt so heavy under the covers that the strength needed just to open my eyes, or move my arms was too great. When I knew she has to go, and I didn’t want her to suffer, and I wanted her to be peaceful and pain-free, but I couldn’t imagine my life without my mother. I spent hours berating myself for all the milestones she will miss because I didn’t get my act together soon enough. I can’t believe I didn’t insist on getting married while she was healthy, and why couldn’t I have just gotten pregnant, she’d have been such a great grandmother. What the hell was wrong with me that I couldn’t just take a traditional path and graduate from college like everyone else?
It’s the big picture thing, knowing she won’t be there for all those big things. It’s also all the tiny things that fill in those big pictures. Realizing I won’t go wedding dress shopping with my mom, or have her put on the veil she wore, and my cousins wore, and my grandmother wore. Knowing if I have a miscarriage, I can never ask her what it was like for her, losing at least one baby this way. I’ll never be able to sit and cry with her over that loss, and find out what kept her going. I’ll never know what it was that made her so sure about my father after only two months of dating. I’ll never be able to ask her for advice if I do have children. “How did you ever do it all?” I’ll never know, and it all felt like so much wasted time. Time I had squandered being selfish.
In the last few weeks, at night, she cried inconsolably, because she doesn’t want to die, and she doesn’t want to leave my dad, and me, because she’s scared. I don’t even know what to say to this except, “Please don’t leave me,” which is selfish, and horrible because I know no one lives forever. I wasn’t prepared for the kind of heartbreak I felt when I realized she was confused, and when I asked if she knew who I was, she just cried.
My mother was never a soft woman, physically. Even in my memories as a child, my mom was very thin. Slightly knobby kneed and elbowed. I always attributed it to the Rheumatoid Arthritis she was diagnosed with at 13. Even still, she could give a good hug, and wasn’t forbidding, or standoffish. We were never an overly affectionate household, but there was love. As she lay dying, she was more than thin. She’d been turned into nothing but sharp angles, wrist bones, and phalanges clearly outlined against mottled skin, with the scars of her knuckle replacements a stark contrast to the bruising. Kneecaps and shinbones, hip bones and ridged vertebra, almost hollow, but not quite. She didn’t really want anyone to touch her, or hold her hand anymore. Everything was uncomfortable and the daily movement involved with changing her diaper, and the dressings on her sores was painful enough to warrant multiple doses of morphine. Just a few days before she would reach out for our hands, beseeching us to hold her, but in the end you could tell, even her skin must have hurt. One afternoon, after trying to swab her mouth, my dad, defeated, looked at my mother, and said, “I really hate this.”
The process of waiting, watching someone you love die, it feels like having an anvil suspended above your head, with the rope fraying a little more day by day. You can see when the rope is nearly broken, and you pray simultaneously that it will snap and that it will hold forever, because you know when it does fall, it will crush you.
This afternoon, my dad and I stood at my mom’s bedside. Her breathing had become very shallow, and we held her hands, and were with her when at about 2:30pm she stopped breathing. It was not fun to watch, it felt like watching a goldfish who has fallen out of its bowl – but we knew this would come, and we just as she wished, we were there with her. I am heartbroken, and truthfully, I don’t know how long this hurt will be this raw. But, I am incredibly grateful I was able to spend this time with her, and that she is no longer in any pain, and doesn’t have to fight so hard.
Because my mom was so sick for so long, I don’t want to remember her as she was when she passed today. She wouldn’t have wanted that either, so instead, I carry the photos I found of her from her wedding day, and my parents’ honeymoon, and the time right after I was born. I will use the to remind me not just of the images I remember of my mom while I was growing up, but of the young woman who laughed easily, and helped others, and gave everything she had to life.