woman on a bike ride

There are few words more harmful to me right now than “we would like to give you as much time as we can.” Those words are being said to me often, though, and so I’m trying to adjust accordingly. I am in no way shape or form dying, but those words hit me right in the heart. How do I respond? I laugh. Not psychotically, but just because I need to. Let me explain.

When I was diagnosed, my baby brother, already dying, turned to me and said, “Welcome to the club, Kelsey!”

“Welcome to what club?” I responded, already smiling.

“To the cancer club, of course!” he said, a big grin on his face.

I laughed and laughed even further still when he started calling us the “terminal two.” I wasn’t terminal, but he surely was. And when he started going down to the point past possible return, he would still turn to me and say with a smile in his voice, “Kelsey, we’re the terminal two!”

I laughed. I always laughed. Because even though it wasn’t and is still not true for me, it was true for him, and laughing was the only way to get through it.

As my recurrences get more frequent and closer and closer together, I have my freak-outs and then I pause to laugh like a person who doesn’t have a care in the world. I would rather it that way.

Many people outside of my immediate family are still horrified at the ways in which we handle bad news. But they don’t understand that laughing is simply the best way to deal with the anvils that drop frequently and joking about bad stuff really does help in the wake of the destruction that those things actually leave.

I went on a relatively short and beautiful road bike ride through the trees this weekend. The fall colors were incredible. We kept biking through little pockets of cool air, and the trees looked like they were glowing and on fire. As we made our way down the trail, I realized two things: My muscles have atrophied because weeks of radiation following recovery from surgery is not conducive to a rocking bod, and that I was feeling lucky. It was during my euphoric realization of being happy that I crashed unceremoniously and slowly to the ground.

I fell twice on that ride — a road ride, an easy road ride — partly because I’m now too slow to unclip from my pedals fast enough to stop myself, and partly because my muscles get angry and tired and reluctant — really quickly.

During this current round of radiation, my body is really feeling it, and I feel as though sometimes my body just tries to give me the finger when I am pushing it.

As I brushed the scrapes and twigs and pebbles from my legs and arms and picked up my glasses from where they flew when I went down, I started to chuckle. I laughed at the ridiculousness of the fact that my body is actively fighting me, I laughed at the picture in my head of me slowly tipping over, I laughed with the beautiful day and the luck that I felt to be there. I laughed harder still when I got home and saw the bruises that seemed to bloom like weird flowers, the darkest of blues, absolutely covering my legs and arms.

“This is what my cancer looks like,” I thought. Bruises and pain and scars and not being able to ride my darn bike during treatment for fear that I will tip over. But I will do it anyway. And I will get better and stronger, and I will ski and jump and dance and act the fool that I am because if I do not do that, I am not giving my life the justice it deserves. At the end of the day, I would rather fall asleep with a trace of a smile on my face thinking about how absurd the world is than thinking about how scary it can be.

So when you see me in 80 years in my rocking chair with a cup of tea and a good book next to a fire and the person that I love, I will be the opposite of bitter, with a smile on my face and a laugh in the air.

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Two months ago, I lost my father to lung cancer. Years ago he had survived prostate cancer and treatment, but he just couldn’t win the battle against his stage 4 diagnosis.

As I sat with him in his hospital room, seeing him helpless and breathing through a ventilator, I wished he had caught the cancer sooner. I wished for him to be cured and be the dad I saw just 10 days earlier laughing with his granddaughter. That’s what most people who have a loved one diagnosed with cancer wish for, but in most cases, the wish doesn’t come true.

I admit that my spirit was a bit broken after he passed away. It wasn’t easy to go back to my job as the content manager for CureSearch for Children’s Cancer, an organization dedicated to finding pediatric cancer cures.

In fact, it was emotionally draining to write stories about children being diagnosed with Ewing sarcoma at 3 months old and about parents who had to watch their only child lose their fight against brain cancer. Every story I read reminded me of my father, and it reiterated that cancer can strike anyone, young or old, at any time.

Despite the difficulty of easing back into my job, I immersed myself in it. It was what I needed to do to move on, and it was what I wanted to do to learn more about this deadly disease. Through my organization, I learned more about the 43 children diagnosed with cancer each day, the 60 percent of cancer survivors who cope with late-term effects like heart failure and secondary cancers and the more than 15,000 parents who will hear the words “your child has cancer” this year.

I learned that on a national level, pediatric cancer research receives only 4 percent of
funding, and that researchers who want to find cures for cancer are the most vulnerable to these federal funding shortages.

It’s always shocking to hear statistics and facts like this, especially when they refer to children. However, it is easy to feel detached when there isn’t a specific name or face associated with it. 

That’s how I initially felt until I started hearing firsthand from parents and cancer survivors. I talked to Board member Annie Gould, a mother who lost her daughter, Eloise, to rhabdomyosarcoma. She has made it her mission to keep the memory of her daughter alive and to raise awareness for the need for research. To date, she has raised over $250,000 in walk and hike events to go toward cancer cures.

I attended a local walk event in Virginia where the featured speaker was Beau Swallow, who was diagnosed with Ewing sarcoma when he was 12 years old. He is a survivor and now attends college, and he never takes for granted a single day of his life. After he spoke, as part of every CureSearch walk event, parents and loved ones released gold balloons into the air. They were in memory of the children lost to cancer. It was heartbreaking to see, but when I looked around at all the people standing here for a common cause, it made me feel that although I may have lost one member of my family, I just gained many more.

Then I learned that a father, Ralph Currey, is going to donate money from his CureSearch Legacy family foundation to help fund research for Ewing sarcoma. Ralph’s son, Nick, survived leukemia as a young boy, but he later developed Ewing sarcoma and passed away at the age of 19. Childhood cancer survivors are nine times more likely to develop a sarcoma or experience devastating side effects that result from toxic therapies, and that’s exactly what happened with Nick. Ralph is going to donate thousands of dollars toward the work of Dr. Mary Beckerle, whose goal is to find new and improved therapies for Ewing sarcoma that either represent a real cure or are less toxic than conventional chemotherapy.

These are the stories of real people who have been affected by cancer, just like me. These are the stories of people who continue to push for a cure so that people like me won’t have to deal with the devastating loss of a loved one. These stories inspire me to move beyond my grief and to do something that matters.

I’m honored to work for an organization that I’m personally connected to and whose mission is to put an end to cancer.

If you are someone affected by cancer, consider making a donation to CureSearch and give at least one of the 40,000 children undergoing cancer treatment in the U.S. some hope.

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I am a 32-year-old wife and mother who was diagnosed with stage 4 adrenal cancer in 2015. This means I am terminal, and that likely every time I see someone I haven’t seen for a week or more, I look worse to them. As in skinnier, weaker, more tired, etc. This list is meant as a peek into my perspective to help make the remaining time my loved ones and I have together as meaningful as possible.

The list is also meant to be my opinion only. I don’t claim to know how others with disease feel about the things people say to them, but if others in my similar situation read this article and find they relate, I ask they leave comments below to let me and others know this is more than just an individual experience.

1. “How are you doing?/How’s your health?”

This a question I get across the board, from nearly everyone I see. It definitely has its place as a question from my caregivers who need to know how I’m doing day-to-day, and from close friends and family who are deeply concerned with my health and well-being.

The other group of people who ask me questions regarding my health are the doctors and nurses I see on a weekly basis, sometimes more, that I have to describe my every bowel movement to. To state the obvious, I find no enjoyment in these visits.

That means questions like these, about my health, aren’t something I like talking about and it takes a lot of time and effort for me to explain. It also means when visitors come and ask, “How’s your health?” I know it’s because they care, but I also feel at a loss of how to answer.

I’m usually unsure about how much they know about stage 4 adrenal cancer (which for 99.99 percent of the general population is about the same as they know about the eating habits of Australian stick bugs), and how much the question is asked out of really wanting to know or of wanting to be polite.

Either way, I don’t want to be dismissive of questions, but there are some days my only reply has been, “Fine,” or “I’ve been better,” and I feel guilty for not expounding more.

Instead of asking for a health update from me, try asking one of my caregivers. Or if the question about my health is to show me concern, then it might be best to steal clear of this question because I really, really, really, really hate talking about my bowels unless I have to.

2. “So… what do you think about Trump?”

I love to sit and talk, but have found it increasingly tiring to do so when conversations turn to politics, personal drama (my own and yours), or arguing. I find these types of conversations tiring as it is, so when I am 5 percent of my normal self and exhausted, I definitely don’t have energy to talk about charged subjects.

It’s nice and actually gives me energy when people come over when I’m home bound and keep conversation low-key. Such as sharing memories we had together, interesting new things going on in their life, etc. And to any questions along the lines of, “So…what do you think about Trump?” all I have to say is, “No comment.”

3. “Give me a hug!”

As I said before, I am at about 5 percent of my normal self, and usually I would go right for the hug and squeeze until my face turned blue. Now, however, any hug or attempt to touch me in anyway sends my body into a quiet panic.

If I reject someone, it’s never personal or because I don’t want to touch them, it’s because my whole body hurts and I can’t risk someone hugging me too hard or too awkwardly and causing me unnecessary pain. Also, if I have to reject someone, it’s nice if they respect my situation and stop making comments about it. I realize it stinks to be rejected for a hug, but it’s not personal, really.

Instead of going in for a hug, let me feel safe and in control by waiting for me to initiate physical contact. Additionally, soft and gentle touches to my hand and shoulder are a safe and welcome way to show affection.

4. “I hate seeing you like this/I’m so sorry.”

I appreciate being able to cry about my situation to loved ones and counsellors in order to vent my anger and process what I’m going through. I also want to be a shoulder for my loved ones to cry on and to share their grief about anything in the world, as long as it’s not about me. I am here for my loved ones, but I ask that no one grieve about me to me.

There is something called the “Ring Theory” of kvetching that ever since hearing about it has changed my life by helping me to set healthier boundaries.

The basic premise of the Ring Theory is to put the aggrieved or afflicted in the situation, in this case, me, at the center of the circle, then closest to suffer, my husband, mother and father, are the first ring outside the center and so on all the way to the lookie-loos (people who don’t know or care about me, but are interested in my disease and/or dramatic life situation).

The rule is that all dumping and complaining moves only from the center of the circle outward, and all comfort moves from the outside in. Any complaining, grieving, crying, etc. that moves into the center is against the rule because it damages those relationships and puts unnecessary stress on the afflicted.

This rule also helps ensure that I’m not the one comforting people, but that I and my close caregivers are on the receiving end of comfort and care.

5. “Let me know if you ever need anything.”

Similar to how the Ring Theory works, I don’t think the afflicted person should ever be asked directly what they need, as they should be focused on resting and getting better, not on reaching out for help.

Ninety-nine percent of my friends and family end their phone calls, texts and emails with the request that let them know if I need anything. This statement is well-meaning enough, but after hearing it the hundredth time over, it has started to frustrate me.

I’ve tried imagining what it would look like for me to actually take someone up on this offer. For example, calling Jenny, a friend from college that lives in Oregon, out of the blue one day and saying, “Hi, remember when you said to let you know if I need anything? Well, I am too tired to make dinner tonight so could you help take care of that?”

I would never do that. It’s simply unrealistic and would probably be more trouble than just making spaghetti myself. Therefore, if you think about it, telling someone in my position to let them know if I need anything takes the responsibility off of them to reach out to me anymore, and in a way relieves them from the burden of having to actually do anything for me.

It also puts the responsibility on me then to reach out for help, even though I don’t have the strength nor energy to do so. There have been month or more long stretches where I have been completely isolated and alone, but too exhausted to try to initiate a phone call or text. It’s during these times I wished my friends and family would reach out to me.

Instead of saying this well-meaning but unrealistic statement to a loved one in need, call their caregivers to see what ways you can be of help. The caregivers will have no problem finding something for you to actually do such as sending a care package, calling me to say “hi,” bringing over a family meal, etc. Or if calling a caregiver seems like too much, a simple card in the mail telling me you’re thinking about me can be very powerful and give encouragement and light where there is only darkness.

6. “My coworker’s cousin has non-Hodgkin’s lymphoma…”

Receiving a cancer diagnosis (along with an estimated one out of every two male and one of every three female Americans), I did not suddenly become interested in cancer nor a cancer expert. In other words, I’m neither interested in your second cousin’s pancreatic cancer, nor do I know anything about pancreatic cancer.

Personally, as a cancer patient, the last thing I want to talk about is cancer. Similar to how I don’t wish to discuss specifics of my health unless I have to, I also don’t want to talk about cancer and disease unless absolutely necessary.

There are are thousands of types of cancers out there, each one affecting each person uniquely, so it is also unrealistic to think I would have knowledge of anything outside my own rare disease. It’s like expecting someone who just got a their first golden retriever puppy to be able to discuss the controversial breeding practices of the American bulldog.

7. “You’re so brave and strong.”

As I said, one out of every two to three Americans will get cancer at some point in their life, and each one of these millions of people will battle (or not battle) cancer in their own way. And whatever path they choose is the right one. Not because they are strong or brave, but because they have no choice.

Since cancer is not a choice, it seems unnecessary to me to praise a cancer patient’s reaction to their disease. Often their reaction arises from their circumstances. For example, I may appear strong and brave to others because I underwent chemo, radiation, etc. But others in my similar situation might have chosen alternative treatments or no treatment at all. Does that make them weak? As I said before, there is no right or wrong, brave or timid, strong or weak choice when it comes to cancer and disease.

Instead of praising someone for how they chose to approach their disease, praise them for things relevant to them such as a new haircut or a pretty sweater they knitted. These sorts of compliments make the receiver feel seen and loved, while complimenting someone’s strength may make them feel like they can’t show weakness or like their disease is what defines them now.

In the end, us cancer patients and our loved ones are all trying our best to understand and support one another. My hope is that by reading this, we all might gain a deeper understanding of one another and how best to cope with this wretched disease.

It was a beautiful spring morning. I had the day off from work and was enjoying the birds singing and the warmth of the sun on my shoulders. The phone began to ring. Answering it, an unfamiliar voice asked to speak to me. Stating it was me, she proceeded.

“This is Dr. Hash from the dermatology center. That biopsy I did last week has come back as positive for a very rare form of cancer…”

At that moment, everything suddenly seemed to go into an echo. I suddenly felt as if my legs became weak, and I quickly moved over to a nearby chair. My throat closed up, and my mouth became so dry, I could barely form words. I sputtered in my speech, asking her to repeat the rest of what she said. “You have a very rare cancer, called dermatofibrosarcoma protuberans. Get a pen, and I’ll spell it out for you. Then I want you to research it and call me back. Then I can answer your questions. I’d like to get you scheduled for surgery as soon as possible.” I was numb at this point.

On a cold November afternoon in 2009, I got thrown off a horse I’d recently adopted. I
landed in the emergency department with two fractures of my left hip and pelvis, three fractures of my left shoulder, and a mild concussion. I was out of work for three months recovering from all of that. I had developed a rash on my right arm that wouldn’t go away. Finally, after all the fractures were healed, I made an appointment with a dermatologist about the pesky rash.

While in the exam room with the dermatologist, I was busy showing her my arm and going on about the rash. The exam gown I had on had slipped off my right shoulder. The next thing I knew, she was staring at my shoulder and touching it, looking puzzled.  She then said, “I’d like to get a biopsy of your shoulder here. I’m not happy with this shiny area.” It was something I’d had on that shoulder for many years and never really paid any attention to. In a few minutes, an assistant was bringing a tray into the exam room with a scalpel, sutures, and a syringe with numbing medicine in it. I sat there as the dermatologist injected the local anesthetic on my right shoulder, took the biopsy, then sutured up the area. It all happened very quickly.

Walking to my vehicle, I dismissed it all from my brain. I was sure the doctor was simply being overly cautious.

After getting off the phone with Dr. Hash, I quickly began reading about the rare form of cancer. I discovered that it’s slow growing, grows outward, is found mostly on the torso, arms, legs, and sometimes on the shoulder.

If successfully removed, it has a good prognosis. I called her back and we discussed my
findings. She sounded optimistic, yet already had her assistant schedule me for the following week for surgery.

A week later, I was being wheeled into the operating room. It actually took two surgeries. The first surgery was performed by a specialist, a MOHS surgeon. The second surgery was done by a plastic surgeon to reconstruct the gaping foot-long wound over my entire right shoulder. The MOHS surgeon had to remove everything right down to the bone, so the area was very deep and long. The plastic surgeon was able to get it all back together without a graft, but the skin was pulled so tight, I wasn’t able to turn my head to the left for over two months.

It wasn’t the surgery and scar that caused me great pain. Yes, of course there was physical pain from all that. But the emotional scar of having cancer, and always wondering if it will come back. It makes you feel as if you always need to look over your should because it is stalking you. Even though I go for follow-up visits, I still never feel free. It makes me realize how precious each day truly is. It makes me work harder to get my message out as an autism advocate.

Even when you are in remission from cancer, that word stays in your mind, tucked away, and affects you for the rest of your life.

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My sister was diagnosed at 21 with a cancer usually only seen in older adults. She had become somewhat unique. Luckily, a talented surgeon and incredible oncologist kept her with us. I am so thankful for that to this very day.

But what no one told me about after her diagnosis was the guilt I would experience. They didn’t tell me that I would wish every day it was me and not her. That I would have nightmares about losing her every night for the next five years. And that despite the melatonin or sleep aids I took, I still had those nightmares.

They didn’t tell me that when my sister became emotional, I wouldn’t be sure how to help. That when my mom cried, I would wish I could take away her pain and fear. But there was nothing I could do. I felt guilty. So I became a “fixer.” I tried to fix everything around me. I tried to fix things to make up for the one thing I could not fix. I started taking over housework, cleaning, trying to make everything right.

The advice I have for those people struggling, given to me by a trusted mentor, is to let your guilt go. This place, this Earth we live on was meant for us. It was meant for us to cherish our moments. Laugh. Cry. Get angry and love each other. It was meant to help us learn to love and to make and foster families. Cancer should not stop that.

The longer I spent moping around and crying at the thought I could lose my sister was the more time that I was losing with her. So now, she and I travel the world, looking to spend more time together than we had ever spent prior. She’s my plus-one to events and I spend a little extra more on her birthday gifts than I used to. But I have learned that all these things, material things, are nothing without her.

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Getting a diagnosis of any kind is scary.

When you hear words like “cancer” or “chronic illness” come out of a doctor’s mouth, it’s easy to let fear take over, causing your body and mind to go on overload.

I remember the first time I had cancer. I was 26 years old and went to see my family physician to get some cream for an unsightly rash on my arm.

I didn’t think much when he said he wanted to run a few tests because he was always looking to earn a few extra bucks with labs.

What I never expected was to be sitting across from him a week later as he was showing me the baseball-size tumor sitting on my heart and giving me a referral to an oncologist. I heard something about limited options and positive odds, but there was too much noise from the screaming in my head to really understand what he was saying.

The next couple weeks where a blur of well-wishers informing me of secret diets and bad tasting herbs that cured my particular cancer. What was even worse was listening to untold stories of somebody’s aunt or cousin who was cured spontaneously. Since that didn’t seem to be happening for me, it just made me feel bad.

People mean well, but there are some really bad recommendations of what to take or do out there in the world. Through six different diagnoses of cancer and autoimmune disease, I feel like I’ve experienced them all.

I’ve sifted through the bad advice to find the gold nuggets I wish I’d had when I got the bad news.

Here’s the best advice I can give you after a devastating diagnosis:

1. Slow down there, partner – Panic is an easy “go-to” when you hear terrible news. Your body automatically goes into a fight-or-flight response when you’re scared, which is why you want to run out of the room screaming. Remember to breathe. When you feel the rush of adrenaline coursing through your body, close your eyes and take 10 deep breaths. This pattern interrupt is scientifically proven to help change the stress response you feel and get out of “freak out” mode. I still do this exercise whenever I need to get labs or tests done to keep calm and carry on.

2. Do your homework – The first thing your doctor may tell you is to not Google your diagnosis. Although there is a lot of information that may not be in anyone’s best interest on the internet, I think it is important to get as much information possible about your disease. Also, make sure you take notes and have a list of questions to ask at your next doctor’s visit.

3. You don’t have to be quick to share your news – Hearing a loved one has serious health issues can be traumatizing. I spent much of my time in the early phase of diagnosis consoling my friends and family and reassuring them I would be all right. It was even more exhausting than having to deal with my own concerns. Feel free to spread your horrible news to the grocery checker, the postman, or clerk at the dry cleaner, and not tell anyone you truly care about until you are emotionally ready. It may fell unbearable to not blurt it out at the dinner table, but you can sit with your diagnosis for a moment until you are strong enough to handle them. Remember, they are scared too, be patient.

4. Find a doctor who will participate in your wellness, not your illness – Many health professionals are treating the illness, not the person. If you doctor is checking his watch or dismissing your concerns, do not hesitate to find another one. They work for you, not the other way around. Even in HMOs you can request a different practitioner if you are not getting your needs met.

5. Clean your house – There is no room for energy drainers in your life right now. Unload activities or people who aren’t serving you. It’s time to unapologetically put you first and clean out anyone or anything cluttering your life with drama.

6. Get uplifting support from folks who understand – Not all support groups are created equal. Some like to wallow in misery. Facebook as some great private groups filled with people just like yourself. Find the one that fits the best, and get to know the people there. They can also answer your questions about symptoms better than medical professionals sometimes because they have physical experience with them. Doctors only have book knowledge about your disease.

7. Don’t be afraid to explore other options – Stay grounded in your treatment, but don’t neglect other possibilities to treat your whole body. I found many complementary modalities to help speed my recovery. Find what works best for you.

8. Clean your internal house too – Your body needs all the loving support it can get. Take a deep dive into your kitchen pantry and get rid of anything with more than three ingredients on the label. Would you put cheap gas in a Rolls Royce? Start eating more real foods that come from the earth. For more tips and recipes check out these resources.

9. Ask yourself this question: “What if this where happening for me and not to me?” – We’ve all bellied up the the pity party bar at some point and poured ourselves a strong one. Once that is done and you are ready to move forward with your recovery, it’s time to turn your medical trauma into wisdom. Ask yourself why this is happening for you and the lesson may reveal itself. Then follow the answer to find your deeper meaning.

10. Never lose hope – Winston Churchill famously said, “If you’re going through hell, keep going.” He also said, “Never give in. Never give in. Never, never, never, never.” No matter what your diagnosis, keep moving forward in your search for wellness. You may not be perfectly healthy but you can always strive to be the best version of yourself no matter where you are in your healing journey.

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