Close-up of gloved hands passing the surgical scissors

No, an Appendectomy Won't Cure Pseudomyxoma Peritonei


When people learn I survived cancer of the appendix, they often ask if I just needed an appendectomy.

If only.

Unfortunately, the vast majority of appendiceal malignancies are discovered as stage 4, when it’s called pseudomyxoma peritonei (PMP). Once found, tumors have burst through the appendix and spread to the outsides of various organs within the abdomen, and usually attach to the abdominal lining called the peritoneum. The specialists that treat our disease say it’s as if a bag of miniature peas has spilled within the abdominal cavity.

Once any surgeon sees such extensive disease, they know something is seriously wrong, but usually don’t know what they’re dealing with. Unfortunately, many patients with PMP go misdiagnosed by clinicians who aren’t trained to treat this rare disease that affects only 2 in a million people every year. Patients are routinely told they have only a year to live, because local pathologists can’t diagnose it, and even if they do, local surgeons don’t know how to treat it.

I was lucky my surgeon had seen one case of PMP earlier in his career, so he knew what he was dealing with. When he operated on me for what he thought was a burst appendix, he found my omentum studded with tumors (did you even know you have an omentum?), and he found a cancerous phlegmon surrounding my enlarged appendix. Because he recognized the disease, he conducted a right hemicolectomy, which means he removed the appendix and one foot of large intestine. This is just the beginning of treatment.

Once the source of the cancer is removed, specialists must then remove the tumors that have spread throughout the abdomen. Luckily, most cases of PMP are contained within the abdominal cavity. Although the tumors spread within that compartment, they typically don’t move outside of it. For patients reading this now whose PMP has spread outside their abdominal cavity, please don’t fear and read on, because we know patients who’ve had extensive disease and have gone on to be cured.

The specialists will take 10 to 15 hours to remove the PMP through cytoreductive surgery plus hyperthermic intraoperative chemotherapy (CRS+HIPEC). This is the standard of care for treating PMP. In plain English, this means these dedicated surgeons will take as much time as necessary to remove all the tumors, and then fill your abdomen with hot chemotherapy, which they circulate for one hour. This is serious stuff. Patients sometimes refer to it as the MOAS: the Mother of all Surgeries. If you need a specialist to treat your PMP, then visit PMP Pals for resources. Be sure to seek a specialist, because the literature tells us it is important to get care at a hospital that does many HIPEC procedures a year, with a surgeon that’s already done 130-140 HIPEC procedures.

If you have a low grade tumor, you might be done with your treatment. If you have high grade tumor, you’ll probably be doing intravenous chemotherapy, too. You’ll likely go through FOLFOX or FOLFIRI chemotherapy protocols for six months to one year. You can go here for more information on the chemotherapies you might take, their side effects and how you might reduce those side effects.

To see one patient’s recent journey through HIPEC, check out this fascinating article by STAT, an online health publication of the Boston Globe.

So, unfortunately… no, an appendectomy wasn’t the cure for my appendix cancer. But if you really want, I’ll be happy to show you my scar.

The Mighty, in partnership with Fuck Cancer, is asking the following: Share a story about one moment or conversation related to a cancer diagnosis or experience that made an impact on you. Find out how to email us a story submission here.

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Chris and his family.

What I Want Others to Remember After Being Diagnosed With a Rare Cancer


Approaching the Christmas season of 2004 I was at the top of the world with a new job at a pharmaceutical company, attending a top-tier business school and my wife was pregnant with our first child. On Christmas Eve, I learned I was also a cancer patient with advanced pseudomyxoma peritonei (PMP).

I was lucky my local surgeon had seen one case of PMP before in his career and mentioned hyperthermic intraperitoneal chemotherapy (HIPEC) as a treatment option. I was also blessed my father found PMP Pals on the internet. I traveled to some of the best health care facilities across the US and like many PMP patients, was told I had a year to live.

I then visited the HIPEC specialists, chose Dr. Sardi as my surgeon and began my year-long treatment that included chemotherapy, cytoreductive surgery and HIPEC.

Ten years later, I remain free of disease.

My body is changed from the surgery. Some days are difficult, but I’m grateful for the days I’m given.

During my recovery I had the pleasure to become friends with Gabriella Graham, the founder of PMP Pals, as I lived nearby. I was a caregiver and a confidant but most importantly a friend. I’m grateful my family got to know Gabriella who was always a lady, no matter how difficult her circumstances.

Gabriella’s journey was different than mine. She was never free of disease and knew she never would be. But Gabriella made a conscious decision to focus on her blessings and be grateful for her portion, rather than focusing on her plight. Gabriella dedicated her life to helping PMP patients with a message of hope, tirelessly supporting them to the very end.

The point of this story is, no matter what your circumstances are, you need to know there’s hope. Maybe you’re afraid because you’re watching and waiting; please understand although this is difficult emotionally, it may be the best thing to do. Perhaps you’re depressed because you’ve had a recurrence. Try and have hope, because we know patients who’ve had many HIPEC surgeries before finally becoming free of disease. Maybe you’re disheartened because you can’t find a surgeon to help. We know patients who have been turned down by specialists but accepted by others.

The truth is, even if you’ll never be free of disease, there is reason to be hopeful. Regardless of your circumstances or the challenges of your disease, you can do great things in this world, just like Gabriella and other PMP Pals. I’m grateful to have the opportunity to lead an organization dedicated to giving you help and support while you navigate life with PMP.

If you want encouragement and support, visit the PMP Pals’ website at pmppals.net. It would be our pleasure to put you in touch with someone in similar circumstances.

PMP Pals has hope for you.

A version of this post originally appeared on PMP Pals here.

The Mighty, in partnership with Fuck Cancer, is asking the following: What’s the best advice you’ve gotten or a mantra that spoke to you following your diagnosis?  Find out how to email us a story submission here.

Catherine Knight's mother

What My Mom’s Old Photos Mean to Me After She Passed Away From Cancer


I’ve been snooping around my parents’ house, looking for old photos. My dad loves photography, and I know we have boxes of pictures around here somewhere.

There are few pictures of my parents that don’t 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 smiling, 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.

Catherine Knight's mother

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 went back to school to finish my bachelor’s as an adult while working full time.

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 it.

I used to picture death at home as something soft, and well lit, like Beth in “Little Women” or being on the “Oprah” show, where everyone looks good. I pictured something quiet, solemn and meaningful with 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 — it wasn’t soft, and she didn’t look good. Death at home is a hospital bed and the hum and sigh of an oxygen machine. It’s fights over eye drops and clamped mouths to avoid medications and oral hygiene. It’s bedsores that have turned into massive open wounds. It is sunken skin and lost hair. It’s changing diapers and suctioning secretions from your mother’s trach tube. It is not romantic or heartwarming. 

I was not really prepared. I don’t know how to really describe what it’s like to watch my mom, the strongest woman I’ve ever known, melt away to skin and bones in a hospital bed.

In early March 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 out the entire tumor, along with the lymph nodes nearby, and then radiation.

The surgery happened on April 1, 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 weren’t 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 wasn’t going to play by our idea of the rules.

So, instead of starting radiation, we prepared for a second surgery. This time, doctors also removed several inches of her jaw and grafted bone from her shin to reconstruct it. We were in for several more weeks of hospital recovery before it was finally time to move on to radiation and 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 she was lucky she had a good-shaped head. 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 dad 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 3 a.m. phone call that Monday: “You need to get up here.” My mom had been struggling to breathe, so they moved her to the ICU as a precaution and 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.

Catherine Knight's mother

By the time we reached 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 and 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 that could take her and provide dialysis. Within a few weeks, she was off dialysis completely and ready to get back to her radiation treatments. Chemo, however, was on hold indefinitely.

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 the 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 the 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 grayish color. Frankly, she looked dead or as near it as I had ever seen. 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 didn’t want machines keeping her alive if she wasn’t likely to 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.

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, and she was weaned off the various blood pressure and heart rate medications. Her kidneys never got bad enough to require dialysis, and after four 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 four 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 and 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’s 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, she 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 six 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 at 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.

Once I arrived in Phoenix after taking time off of work, 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 for taking a blood thinner, but the left side of her face was a purple and blue mess. 

Catherine Knight's mother

My dad seemed to be keeping himself going just by remaining in nearly constant motion. To give him the chance to run errands, I learned how to use a portable suction machine, pushing a small tube down my mother’s trachea to suck out the thick secretions that she wasn’t strong enough to cough up on her own. I had a refresher course on how to give her meds through a feeding tube that was placed in her abdomen and then directly into her mouth when the only meds left were 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 seem to be looking at nothing. 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 spent hours berating myself for all the milestones she’ll 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?

In the last few weeks, she cried inconsolably at night because she didn’t want to die, and she didn’t want to leave my dad and me because she was scared. I didn’t even know what to say to this except, “Please don’t leave me,” which was 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. As she lay dying, she was more than thin. She’d been turned into nothing but sharp angles and wrist bones.

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.” 

Catherine Knight's mother

Then one 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 2:30 p.m. she stopped breathing. We knew this would come, and 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. She wouldn’t have wanted that either, so instead, I carry the photos I found of her from her wedding day, my parents’ honeymoon and the time right after I was born.

I will use them 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.

A longer version of this post was originally published on Books Beauty Bling.

The Mighty, in partnership with Fuck Cancer, is asking the following: Share a story about one moment or conversation related to a cancer diagnosis or experience that made an impact on you. Find out how to email us a story submission here.

Heather Von St. James with her daughter, Lily (Photo credit: Kevin Wood Photography)

To My Daughter Who Was Just a Baby When I Was Diagnosed With Mesothelioma


Dear Lily,

Eleven. How can you be turning 11? It seems like just yesterday your dad and I were anticipating your arrival. Yeah, we took those silly 9-month belly pictures of me, but frankly, I’m too embarrassed to show them to you, not because of the belly, but because of how silly they are.

Of course, you’ll probably just laugh at us, like you laugh at most things. I’m so proud of the girl you’re becoming, and I can see glimpses of the woman you’ll grow into. I’ll be honest, I wasn’t so sure I’d be alive to see your second birthday, let alone your 11th!

All those years ago when I was given a “death sentence” of mesothelioma and was told I had five months to live, you were just 3 and a half months old. You were still so tiny, so serious, still breastfeeding and trying to figure out the difference between night and day.

Our world came to a screeching halt that day. The only thing I could think about was staying around to raise you. I refused to take a death sentence as a prognosis. A baby’s first year should be full of milestones and memories. All the firsts like the first Halloween, first Christmas, first Easter — all those milestones are tainted with the memory of me fighting cancer.

When you look back at the photos, your dad and I look like we’re a million miles away. We tried so hard to not let my mesothelioma diagnosis affect you. We made sure of one thing — that you were surrounded by love and care at all times. You were just a baby, but I swear you knew something was happening. You were such a good baby. You rarely cried, and you just took in everything around you. We called you an old soul.

Our lives took a turn we didn’t anticipate, and we didn’t want you to pay the price. When I had to fly across the country for my lifesaving surgery, we made sure you were taken care of. You don’t remember living with your grandparents for those three months while I recovered. What you do know is that a tight bond was formed in those months that will last a lifetime.

Your dad and I try not to dwell on the fact that the first 18 months of your life was overshadowed by my cancer treatment. I guess it’s a blessing in a way because you don’t remember any of it. You don’t remember me laying on the sofa, recovering from chemotherapy while you played and brought me toys. You don’t remember rubbing my back asking, “Mama OK? Mama OK?” while I retched over the toilet because radiation made me so very sick.

You don’t remember much about those first few years, and for that I am thankful.

I’ve been so happy to mark the years with your birthday celebration. It’s how I keep track of my years of survival — and now we are coming up on 11.

I can’t tell you enough how proud I am of you. I’ve watched you grow and tried to provide you an example of how to treat others. It makes my heart sing when your teachers tell me you try to include everyone in your group or reach out to the kids that others ignore. I love how you love to give and how you’re always thinking of others.

When, for your 10th birthday, you wanted to raise money for the Humane Society instead of getting presents, I was beyond proud. You told me not long after that you like helping people, like I do. You brought tears to my eyes when you told me that.

Every day you do something that makes me laugh out loud. Your sense of humor is too old for a typical 11-year-old, and you understand more than most kids your age. But then again, your dad and I probably have a different outlook on parenting than most because of my cancer battle. It shaped all of us and continues to shape you.

I can hardly wait to see what 11 brings. Every year, I say this is my favorite year. I imagine 11 will prove no different.

Just don’t grow up too fast, OK? I hope part of you will always want me to snuggle with you before you go to sleep, and I hope your love of stuffed animals lasts a few more years. I’m not quite ready for you to grow up that much yet.

I know this for certain, no matter what the future holds for us as a family, you will be OK. You are strong, resilient, smart and kind. I love you more each day and thank God I’m here to celebrate 11 years with you!

I can’t wait to celebrate many more.

All my love,

Mom

Follow this journey at www.mesothelioma.com/heather.

The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here.

Happy young cancer survivor enjoying sunlight

The Issues We Need to Discuss as Young Women With Breast Cancer


A cancer diagnosis is obviously devastating at any age. Forget chemo-induced puking and hair loss, the issues facing younger women going through cancer treatment run much deeper, but are often ignored and belittled by healthcare professionals. However, with 10 percent of breast cancer patients being diagnosed under the age of 45, and approximately 850 a year under 35 in the UK alone, these issues need to be discussed openly:

1. Mortality rates. A cancer diagnosis is scary enough, but to find out that you’re more likely to die if you are diagnosed under 35? Well, that sucks! We have more life to live, yet are more likely to die from it. This is due to the cancer normally being more aggressive when it’s diagnosed at a later stage. It’s picked up when symptomatic, rather than at an early stage on a mammogram. Plus prognoses are often spoken about in one, five, or 10 years…but that only takes me to 43. I want to live much longer than that.

2. Fertility issues. Chemotherapy can cause infertility, and some women will be on drugs for the following 10 years, so even if they are not left infertile, the 10-year delay can push them past the “child-bearing age.” This issue is often the most heart-breaking side effect for younger women – having to mourn their infertility while their healthy friends are happily procreating around them. There is the possibility of freezing embryos and eggs, but only if there is time and funding is available, or they have the cash to fund it themselves. Shockingly, many young women don’t have their options discussed before starting treatment. That needs to change.

3. Having a young family. If infertility isn’t an issue, they may already have young children or babies. Many are diagnosed while pregnant or breastfeeding. They have to “carry on as normal” throughout their treatment, juggling the 101 things moms have to do, alongside constant hospital appointments, surgery, treatment and dealing with all of the “yucky” side effects. Alongside this, they have the heartbreak of explaining what is happening to their children and dealing with their children’s reactions and fears, while facing the very real possibility they might not be around to see them grow up.

4. Career. Many young women are diagnosed in the throes of their career. The constant hospital visits for surgery, scans, blood tests and treatments and the resulting side effects and recovery times make it almost impossible to continue a 9-5 job, let alone put in the additional hours. There are also other lingering side effects that continue long after treatment has finished, such as extreme fatigue and “chemo-brain” (cognitive impairment as a result of chemo that can make your head feel really foggy and affect your memory and ability to concentrate which is extremely frustrating) that can make it almost impossible to perform like before. I know of far too many young women who have missed out on promotions or been demoted following their cancer diagnosis. With the pressure on young women to prove themselves, this creates a huge hurdle and can lead to financial issues.

5. Early menopause.
Boom! Straight into hot flashes (volcanic lava hot), insomnia, night sweats, mood swings, anxiety, weight gain and dryness (whispers) *down there.* Rather than being eased into menopause over many, many years, our hormones are prematurely turned off and the result can be extreme. And since the plan is to lower estrogen as much as possible, it is difficult to take hormone replacement therapies (HRT) or natural remedies, and we are often left to just deal with it.

6. Body issues. I know we all have body issues regardless of our age, but even I have to admit that mine are fewer in my 30s than in my 20s and teens. My body is unrecognizable since my treatment and chemo. The younger you are, the more you don’t want to be seen as “different” and many are single and have yet to meet their life partner. To be left “one-boobed,” overweight and scarred can severely knock the confidence in many young women.

7. Isolation. No matter how amazing your friends are, they are less likely to understand, as we just haven’t had other friends go through cancer at our age. They also have their own busy lives to get on with. In hospital for my treatments and surgeries, I was often the only one under 50 — cue lots of tilting heads and pitying looks.

However, the good news is there are some brilliant resources out there for young women – and they proved invaluable for me. For breast cancer, Breast Cancer Care runs Younger Women Together weekends and there’s a brilliant secret Facebook group called Younger Breast Cancer Network (set up by my friend Vickie who was also diagnosed in her 30’s) with over 2,500 members all under the age of 45 in the UK. It provides support from diagnosis to beyond treatment, as well as those whose cancer has spread. It also offers the opportunity to meet others of a similar age and at a similar treatment stage local to you. Vickie also works tirelessly to make things better for us young folk with charities and hospital trusts. For those facing other cancers, Shine Cancer Support is for those in their 20’s, 30’s and 40’s and has regular local meet-ups and workshops. Just connecting with others your age going through the same thing is therapeutic and makes you feel less alone.

For those of us lucky enough to still be here, we try our best to go on and fulfill enriching, happy lives with many of us doing things that act as good examples to those in the early stages of diagnosis. Many women I’ve met through my cancer journey continue to fundraise, speak publicly, set-up businesses, campaign for better care or drug availability and and have created charities and support networks. They are all determined to make something good from something awful.

A cancer diagnosis is devastating at any age. We need to make sure the relevant help and support is offered to each and every person.

The Mighty, in partnership with Fuck Cancer, is asking the following: What do you wish you had found on Google when you were first diagnosed? Find out how to email us a story submission here.

Justina Bonilla’s mother

To the Radiation Treatment for My Mom’s Cancer


Dear Radiation,  

When Mom was diagnosed with stage three liposarcoma cancer, her surgeon had to act fast to prevent it from spreading. Mom was immediately put on a cancer treatment plan. A part of that regimen was post-surgical treatment with you, instead of chemotherapy. Since Mom is diabetic and has high blood pressure, it was believed you would be easier on her system.

The first radiation specialist Mom saw said, “You won’t feel anything for the first two weeks. Then you might feel some moderate nausea, fatigue and diarrhea. But all these symptoms could be easily dealt with with medication.” As uncomfortable as Mom was with starting treatment with you, she knew if she didn’t, her liposarcoma would get worse.

On the fist day of treatment, we all held our breaths, praying you would take it easy on her. At first, she didn’t feel anything. We were optimistic. Then, two hours later, she started to have severe stomach pain and cramping, and her blood pressure rose quickly. She was able to take medication to calm her stomach and blood pressure. Wiped out by her experience, she went to sleep only to wake up with dangerously high blood pressure. Mom had to go to the emergency room.

After that experience, it has been a rollercoaster of pain, suffering and emergency room visits for Mom. She suffered from stomach pain, constant fatigue, crippling cramping, unstable blood pressure and her entire gastric system being inflamed. She could hardly eat or rest. It became so bad that she was rapidly losing weight. Her insides felt drier than the Sahara Desert.

Since the side effects were overwhelming, Mom went to a second radiation specialist for help. He assured her what she was feeling was normal. But after the third week had passed, everything continued to get worse. With her multiple medication allergies and sensitivities, most of the medication recommended to her made her even sicker. She went back to the second specialist, begging for any kind of ideas of how to deal with the side effects — medication, a home remedy, anything. He simply told her, “I can’t recommend anything for you because you probably won’t take it. So no there is nothing I can do.”

Stunned by what the second radiation specialist said, she asked him three times if there was anything he could recommend. Maybe they could lower the radiation and stretch out the treatment over a longer period of time. He just shook his head and said, “You have to understand radiation is a science. It took many years to develop. And so everyone gets the same treatment.” 

Mom still begged for ideas. Instead, he cut her off, almost scolding her: “You have to understand this is a highly specialized and strong treatment, and you have to accept the collateral damage. OK, so you wind up with these problems, but at least you’re alive.”

Mom has a little over a week left of treatment with you. Every time she walks in, you see her a little more worn than before. I know the cure can be more painful than the initial illness, but please take it easy on her. Even though Mom is the strongest person I have ever known, every time I see her after a treatment, she looks more and more weak. At times, I’m even afraid of touching her. I’m afraid if I hug her too hard, she will fall apart in my hands like fragile clay.

Radiation, you are more powerful than you realize. You can destroy life just as easily as you can save it. As difficult as it was seeing Mom suffer after her tumor removal surgery, it’s twice as difficult to watch her suffer now. It’s overwhelming.  

So please ease her suffering if you can. I humbly ask this as a child whose biggest fear is losing her mother to cancer.

The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here.

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