Woman holding decorated sign that says last day of chemo aug 19

It seems to me like the rest of the world is often more comfortable when they hear stories of rosy optimism and conquering disease. I figured that out early. I could post glowing optimistic stories of each new victory I overcame and I would receive endless praise. It was great, it fed my ego, but it wasn’t always honest.

When I was first diagnosed with inflammatory breast cancer (IBC), the cancer machine whirred into action, and I was surrounded by well-meaning and compassionate people who offered to do almost anything. For someone like me, who is very self-sufficient and independent, it was difficult for me to accept the help. But I did accept the help, and I am forever grateful for it.

Now that I am through the hard parts, most of the people have disappeared. Some people might be more comfortable knowing that I am healing and recovering. They might not want to hear about the days I can barely get out of bed because I am so tired from over-exerting myself, or about the difficulty I have reaching things on high shelves because my arm no longer has the range of motion it once had because of the missing lymph nodes. They might not want to hear about the struggle for breath when I am walking a block or two. They might not want to hear about the depression, or the anger, or the loneliness that inevitably creates a barrier between me and the rest of the world. They might not want to hear about the insomnia or the drug addiction that can develop because of the long drug use. And they really might not want to hear about the chance of reoccurrence or worse.

When the bell has been rung, it signals the end of chemotherapy or radiation. It doesn’t signal the end. That distinction needs to be made because in the minds of loved ones, it can sometimes signal relief for them. When a cancer diagnosis is given, it can feel like a death sentence, and so the sound of the bell can sometimes feel like reprieve. It’s not. For the cancer patient, the sound of the bell is merely a beginning of a new battle. It signals the beginning of reclaiming everything that was lost when cancer ripped the ground out from beneath them. It signals the beginning of fear — the fear when the other shoe will drop, when or where the next lesion or tumor would appear, the fear of having to go through all of this again, the fear of everyone disappearing just when the next phase of the battle is beginning. These fears are realistic and can be probable.

Through my own experience, there are nine things I have discovered that are the most effective ways of continually showing love and support for someone recovering from cancer.

1. Endure the loneliness and depression. Cancer survivor stories are not always depicted honestly. The positive ones that depict overcoming great odds might skip over the hard parts of struggle, frustration, isolation and depression. The most loving thing a person can do is endure that with the ones going through it. It can be a long road back.

2. If the cancer patient wants or needs to talk about their final days — their wants and desires in the event of a poor prognosis, their expectations and blessings for those left behind after they do die, or their funeral — let them.

3. Don’t just say, “I’m praying for you.” This is no way is meant to minimize the power of faith, or to imply that prayer is not warranted. But often times, this statement can be used as a means of offering comfort, and this might not always be comforting to that person. If you feel compelled to pray, then just pray. But as a means of offering comfort, more practical ways could be reaching out and asking how you can help.

4. Offer physical support or time. Cancer, as with many other major illness, can be incredibly isolating. The most effective means of offering support can be to spend time with the patient. Even just sitting in the same room saying nothing can be more powerful than all the flowery words in the world. Watching a movie, or rubbing their feet, or bringing tea and mindless conversation can be more powerful and meaningful to the cancer patient.

5. Don’t focus on the disease, but don’t gloss over it either. This one might seem like a paradox, but it’s not. Cancer can take so much from the lives of those it infects, but it shouldn’t rob a person of their identity. Where someone used to be a prolific writer, or musician, or cook, or [insert interest here] — they are still that person. But to try to forget that a person’s life was irrevocably changed by such a powerful disease is to minimize their struggle.

6. Don’t expect there to be a time limit to their grief. Telling a cancer patient to just stay positive, or to have faith, or to focus on being grateful might make the rest of the world comfortable, but not necessarily the cancer patient. If the patient is angry, let them feel that anger. The stages of grief don’t have a formulaic time frame, and it is unfair to expect that from anyone. Cancer robs so much, not just time. Though the obvious struggle might be over, the loss can sometimes have a rippling effect. A limb or a body part might have been removed, chemotherapy might have caused infertility or put a woman into early menopause, there could be a loss of cognitive functioning as a result of “chemo brain,” there could be significant weight loss or gain, there could be a loss of muscle function, there could be a loss of sexual intimacy or function, and there could be a loss of identity. These things continue to cause no end of anger, depression or sadness. It could cause the breakdown of a marriage due to stress and conflict. It could mean the loss of dreams and expectations for the future. Cancer patients find that sometimes they lose friends because of cancer. The most loving thing someone can do is allow the cancer patient to feel those things.

7. Continue to offer help. Cancer patients can often take up to a year or longer to recover after their final treatment. Fatigue is a huge symptom that is hard to overcome. Fatigue is more than just feeling tired. It is an absolute feeling of moving through quicksand. It is mental, physical, and emotional exhaustion. Cutting the lawn, doing a load of laundry, shoveling a driveway, going grocery shopping, or cooking dinner can sometimes take every ounce of energy from a recovering cancer patient. There are good days, and that feels like a huge victory to them, but they are often short-lived. A recovering cancer patient might skip over these basic chores other people might take for granted in favor of sleeping on the sofa watching re-runs of “Friends.”

8. Don’t minimize or ignore their fears. No one wants to admit that a loved one could face this disease again, but those fears are realistic. It would be more productive to re-direct those fears. Help them face those fears. Let them know you will be with them every step of the way, and help them develop a contingency plan in the event that the cancer does return. Knowing that they have someone to face this disease with should it return is instrumental in moving beyond it and living for today.

9. Don’t disappear. This is often the most hurtful aspect of dealing with cancer. Life does continue to move on even though the cancer patient might feel like they are living in limbo. Making a conscious effort to remain present can be the single most important thing a loved one does. The cancer patient might feel like they have been a drain on the ones around them. They are not oblivious to the extra effort that has been put forth by those around them to help support them during the chemotherapy, radiation, and surgery. There may come a point where they will stop asking out of guilt or a feeling of becoming a burden, but they absolutely do still need their friends and family around them.

A version of this story originally appeared on Conceived.

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It was just supposed to be a mammogram. A few weeks earlier I had gone to my doctor to inquire about an unusual hardness behind my left nipple. I thought, in part, that I was a tad irrational. My doctor validated my fears during my first appointment and sent me for a scan. But it was only supposed to be a mammogram.

I arrived at the hospital where the breast assessment clinic is located, and I was late because I had never been there before. The woman operating the machine was irritated. I was apologetic but it didn’t seem to matter.

She smashed my breasts between the flat plexiglass that comprised the tortuous experience of having a mammogram, and within only a few seconds her attitude with me completely changed. I was no longer just having a mammogram, I was being sent for an ultrasound as well.

I tried not to cry. I tried to contain my emotion. I felt silly crying. I didn’t have a diagnosis yet. This was all still conjecture, a possibility, a potential reality — this wasn’t something that was confirmed yet. But an ultrasound turned into a biopsy. Within the span of two hours, my life completely and irrevocably changed. It was also my son’s 18th birthday. How was I supposed to remain calm and still celebrate my son’s milestone birthday with a looming dark cloud hanging over my head and my life?

It only took four days for the results to come back. Four days is nothing. Four days is insignificant in the context of a lifetime. But these four days felt like forever.

It was confirmed on a Monday. I had been diagnosed with inflammatory breast cancer.

I remember sitting in the grey examination room of my doctor’s office while medical professionals conveyed the gravity of my diagnosis. My whole body shook with raw nerve. I was completely undone.

In the four days between biopsy and diagnosis, I tried in vain to stay off the internet. I “Googled” survivor stories. I did not find any. I found statistics. A lot of statistics. They were grim.

But I had found a blog by a woman from 2009. She was faith-filled, positive and so determined that she was going to survive. In the early days she posted a lot about her treatment, her recovery and her hopes for the future. She was honest about her struggles and about her fears, which was hard to read but I appreciated her honesty. I loved her declaration that she was going to beat this, she was going to defy the odds and survive. It was empowering to read about her defiance of this disease. But then I read the last post. It was by a family friend. They informed the readers that she had died.

I threw my tablet halfway across the room. I cried. No, I sobbed. I sobbed an angry, bitter, sorrowful cry that echoed through my home. This was just the beginning.

I have since survived eight rounds of chemo therapy, a left radical mastectomy, 25 rounds of radiation, and I am now in recovery. I, like the woman I wrote about above, am optimistic, defiant and determined that I will beat this disease. When they removed the breast tissue from my body, they reported that I had no evidence of the cancer in my body. They have told me that is the best possible outcome they could have hoped for. That gives me hope.

But if you are reading this after I am gone, I don’t want you to despair. This disease is aggressive, but there are aggressive oncologists who are tirelessly researching new and improved methods for fighting this disease. This disease will knock you down and cause you to feel all kinds of emotions ranging from despair to anger, but when you encounter a new victory, it can give you renewed strength and hope to continue to the next phase.

And there are others. There are others all over the world who are living with this diagnosis. Some have passed away. But others are bravely facing each day and surviving. Some have two years, five years, seven years, twenty-eight years — they are surviving. It is possible. Do not lose yourself to despair.

I won’t sugarcoat this: IBC sucks. There are seemingly no good reports online I could find, now. But hopefully, in the future, there will be more good reports. Hopefully oncologists will have more data to compile that will provide answers. And I hope beyond hope that I too can survive, and this article is obsolete. I hope that I can continue to provide anniversary updates that announce I am still alive. I hope beyond hope that 20 years later I can say, you have hope because I am still here.

But if I am not, I will tell you this: I fought and endured so that you could have answers and so that you will survive.

Woman sitting in car with seatbelt on, smiling and looking at camera

A version of this story originally appeared on Conceived.

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“How are you?” you ask as we meet in the hallway.

“Pretty good.”


“Hanging in.”

I see the questions and surprise in your eyes.

“Wait, I thought you had cancer and were on chemo?” they might be thinking.

I could tell you how I’m tired, or how my fingers tingle from the cold, especially if it’s cold and rainy, how my hands are cracked, peeling, flaking, burning — tight and shiny.

Or how I have to catch my breath after getting up to cross the room.

I could tell you that sometimes I’m foggy or distracted.

Do you want to know about the occasional constipation? Or hurry calls? Probably not!

Or the weird, bland, sandpapery feel in my mouth — not a bad taste, per se, just kind of blah. Food just isn’t as fun.

How about the way my port sometimes gets tender, or irritated when my bra strap rubs against it the wrong way.

Or how when I’m wearing my pump how I have to deal with the intermittent buzz and the annoying pressure of the thick band of elastic around my waist, like I’m wearing Spanx, or a really snug corset.

And if it’s Tuesday, the day after my chemo session, how my cheeks will turn bring red and I’ll feel flushed for the rest of the day — maybe Wednesday, too.

And then there are the visits to the lab, where I get to be a pincushion for a zealous phlebotomist. Some of the bruises are legendary.

And don’t even get me started on the inability to shower for those days. Yeah, I do get to bathe, but it’s just not the same as the feel of nice, hot water running over my head, across my shoulders and down my back.

I’d like to swim, but the water at the pool is probably too cold — even in the so-called “warm pool.”

And I really miss drinks filled with ice, but don’t want to risk the same pins and needles in my throat that I get in my fingers when I pick up a soda can or grab something from the freezer case in the supermarket. Yep! I’m the one wearing gloves to grab frozen french fries out of the case.

You may have questions you aren’t asking.

No, I don’t have nausea and I still have my hair, but it’s drier now — and thinning, probably getting grayer, too, but that may not be the cancer.

I could tell you all of those things, but you may have already walked on.

I’m sure you care, but you may not want me to give you the “real” answers.

So I respond:

“Pretty good.”


“Hanging in.”

And you know what?

I am!

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Thinkstock image by Jason Reed/Ryan McVay

“It’s called Basal Cell Nevus Bifid Rib Syndrome.”

I blinked a few times and stared back at my doctor. He said it again, but it didn’t help. It took about five rounds of “repeat after me” before I could say it right. Even then, the diagnosis made as much sense to me as, “Basil Leaf Nimbus 2001 Syndrome.”

That diagnosis happened about 10 years ago when I was almost 13 years old. Since then, I’ve learned a lot about Basal Cell Nevus Bifid Rib Syndrome. I learned this rare genetic condition was the reason I had 5 massive keratocysts in my jaw as a 13-year-old girl. I learned it was the reason for my abnormally large head at birth and is likely the reason for the blindness in my left eye. I learned there’s a lot we still don’t know about the condition because of its rarity and relatively recent discovery. And several years after my original diagnosis, I learned it could apparently be called a much nicer and easier to pronounce name: Gorlin syndrome.

The most important thing I learned about Gorlin syndrome was brought to my attention when I met with a genetic counselor as a young teen. She gave me pages and pages of research articles to read, one of which included a full breakdown of the symptoms associated with my new syndrome. In this article, under the “Morbidity/Mortality” section I was reassured that Gorlin syndrome was not likely to kill me or shorten my lifespan, which was comforting to hear. But just one sentence later I was told about the basal cell carcinomas (skin cancers) that I would inevitably start getting soon, no matter how much I avoided the sun. I was told about the scars and skin damage, and was told because of those scars, “a poor cosmetic outcome can lead to social difficulties, including difficulty maintaining employment.”

So as I read this section of the article as a teenage girl, my basic understanding of it was this: The good news is you’re not gonna die! The bad news is 30-year-old you might look like you got a facial from Edward Scissorhands. And, honey, that’s not much better!

Looking back on this article, it sometimes seems easier to brush the writers off as “mean” or “insensitive,” but the writers themselves were not the problem. In reality, the article simply demonstrated two disturbing truths about our social world. One, is that conventional beauty and social and economic success are astonishingly correlated in our society. So much so that even research professionals believed scarred or damaged skin could get you fired from your job or destroy your relationships. That is a huge problem in and of itself, and it’s one I’ve been advocating to fix for years. But that’s not all. The article also draws attention to a common and demeaning belief in our society that skin cancer is by and large an “ugly” disease.

In today’s world, pictures of big abnormal moles and stitched up facial wounds are used as “scare tactics” to discourage tanning. We’re told how tans may look sexy now, but the disfiguring scars will make us regret it later. I seems like an effective strategy at first — constantly tanning can be dangerous, so we should use whatever argument necessary to convince people to stop? But the fact is, there are significantly better arguments for why skin cancer sucks. “It’s gonna make you ugly” should not be number one on that list.

In November of 2016 I was diagnosed with my first basal cell carcinomas. I had two on my scalp and one on my left temple. They were just the first of many I will get throughout my lifetime. The skin cancers on my scalp were “scraped” off, and treated with a topical cream called imiquimod that costs $10 or $20 with insurance, but can cost hundreds of dollars without it. Full treatment and excision of the carcinoma on my temple cost almost $1,000 in medical bills, even with good insurance. Carcinoma removals can sometimes cause permanent nerve damage at the area of excision, and can be a little scary at times because when someone cuts into the deeper layers of skin on your temple, you hear your skin make a weird “crunching” noise that it nothing short of creepy. Healing time can also be painful, especially if you’re used to falling asleep with the stitched and bruised side of your head resting on the pillow. But the truly sad part of all this is none of those things were the reason why I cried on the day of my excision.

I only cried when I looked in the mirror.

I looked in that mirror and for one split second my confidence cracked. I looked at the inch and a half long wound on my temple and knew it could be the first of many. I imagined a scar like that on my check, my jaw or my forehead. For a split second I wondered if the researchers from the article or the creators of those anti-tanning campaigns were right. I thought about my future scars and wondered if they could someday make me “ugly,” “undesirable” or “unwanted” to my future friends, my future husband or wife, or even my future employer. And in that moment, I cried.

Even if it’s the slow growing and “easy” to treat kind of growth, skin cancer is still no “fun.” It’s costly, nerve racking, sometimes painful and frankly just a tiny bit annoying when you realize that you will now be monitoring the UV index on your phone every single day for the rest of your life. But there is one thing skin cancer is not: it’s not “ugly.” The skin cancer scars I have (and the ones I have yet to get) do not disfigure me. They are not ugly and they are not evidence of my “damage.” They are evidence of my strength. I know there will be times in my life I will forget that —  times I look in the mirror and feel something in me start to crack. But I also know this: if I surround myself with the right people in life, there will always be someone there to remind me of the truth.

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Thinkstock photo by: Marco_Piunti

Von Hippel-Lindau syndrome (VHL) is a disease caused by a genetic mutation of the VHL gene. The VHL gene is involved in many other forms of cancer; it controls the major feeding pipeline to every tumor cell. The disease causes the development of multiple tumors in a number of sites throughout a patient’s lifetime, from early childhood through adulthood. Sites at risk include kidney, retina, spinal cord, brain, pancreas, adrenal gland, ovaries, lung, liver, and inner ear.

VHL has been affecting my life from as long as I can remember. My mother was diagnosed with VHL at an early age; she was constantly in and out of the hospital from brain surgeries, kidney surgeries, and was blind in one eye. Due to VHL, she was told she could not have any children but sure enough, she had me!

Growing up my mother did absolutely everything she could with me knowing that VHL would soon take over. I really did not understand anything that was going on, I was simply too young. My family never really explained to me what was going on because they did not want me to worry. As years went by seeing her in and out of the hospital I started to read about VHL and it freaked me out, so I just ignored it. My senior year in high school is when this disease started affecting her the worst; she went into a coma for a few months, and we were unsure if she would even pull through. It really took a toll on me that year; I would hardly go to school, showing up only for the classes that I needed in order to graduate. Thankfully, they understood my situation and allowed me to finish with night school. My mom really wanted to watch me graduate high school, and sure enough, she made it to see one of the most important days of my life.

A few months later, both her kidneys were removed and she was put on dialysis, which had to be done three times a week. All of this put a huge toll on her body leaving her incapable of doing almost everything. It was a struggle each day for my family and me. She seemed to be in and out of the hospital every week, not knowing what the outcome would be. We received calls quite a few times saying that the family needed to come in to say our last goodbyes, but she somehow continued to pull through. Everyone would say, “Carole, stop scaring us like that!” She would just smile and laugh. She always had the best attitude towards everything.

Throughout all of my mother’s years of sickness, my stepdad never once left her side. I have seen their difficulties, but most importantly, the love he had for her. He had so much patience for years and years, he was my mom’s caregiver and supporter. My stepdad is a wonderful man and we are so incredibly lucky to have him in our lives. They both taught me so much over the years.

Knowing that VHL is genetic, I had to get regular checkups. Each year I got my eyes, ears, and abdomen screened to make sure I did not show any signs of VHL. Luckily, I did not! As a result, my mom thought I did not have it, so I eventually stopped getting screenings. Unfortunately, I had no idea how important it actually was to continue these screenings.

After a few years into this never-ending battle with my mom, I found out I was pregnant. About two months into my pregnancy, I got extremely sick and ended up in the emergency room. They did an ultra sound to make sure the baby was OK but found cysts on my pancreas. I then had to set up an appointment with endocrinology. When arriving to the hospital that day I did not think it would be too serious. My doctor sent me to get my brain, spine, kidneys, and eyes checked. It turned out that I had one tumor on my cerebellum and one retinal tumor in my left eye. At this point, I decided to go to a genetic counselor to get a conclusive diagnosis. Because of my VHL diagnosis, I was considered a high-risk pregnancy and closely monitored.

A couple months later, my younger cousin found out he also has VHL and would having surgery for a brain tumor. He and I support each other and encourage each other to get our screenings, to make sure we stay as healthy as we can.

When my son, Hunter James was born, we immediately took him to meet his grandmother. She was the happiest we had seen her months. Unfortunately, that was not long lived. Three months later, my mom decided she wanted to stop dialysis and the ventilator, which would shortly result in her death. This time, we really were gathering to say our final goodbyes. This had to be the toughest day of my life. Of course, she was in good spirits, cracking jokes to all of us. She never lost her sense of humor! The last words she said to me was that I better finish school and I had better tell Hunter all about her! The next day my stepdad went up to the hospital and sat with her until she passed away.

After delivering Hunter, I completed further screenings so they could see if anything had popped up during my pregnancy. Once again, I was back in that MRI machine for hours at a time, which revealed two brain tumors on my cerebellum and two in my kidney.

We decided that we were going to get Hunter genetically tested. After waiting for what seems like a decade to get these results back, we found out that Hunter does have VHL. Thankfully, the genetic team was reassuring of the process we would have to follow for Hunter.

Three months after Hunter was diagnosed, I found out I was pregnant yet again. Landon was born in November 2014. We have yet to get him tested for VHL. I’m not sure if I am prepared to hear the outcome, but I know it is something we have to do. Whether it is good news or bad news, I will be just fine. After all that I have gone through, I think I can take on anything. That is why we call ourselves #VHLWarriors!

It is very scary not knowing what can happen in the future. We have learned to take it one step at a time. Everyone has bumps in the road of life; my road just happens to be a little bumpier at times. I try to stay positive towards every situation and put people in my life that will help me on my journey.

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Thinkstock photo by Mike Watson Images

I was always a high-strung, fretting, nervous wreck of a worrier. I always found a way to see the bad that could happen in every situation. Murphy was my cousin and I lived by his law.

My mother died at the very young age of 27 from a very rare disease called von Hippel-Lindau syndrome (VHL). VHL is a cancer syndrome where blood vessel tumors grow and continue to grow throughout various parts of the body where blood vessels are prevalent — important parts of the body such as the brain (cerebellum), spinal cord, kidney, pancreas, inner ear, adrenal glands and of course, the eyes.

Although VHL is inherited, it treats every individual differently, even within the same family. VHL tumors can be removed but they always grow back. That’s the “beauty” of VHL. Kidney tumors can grow into cancer once their growth increases past a specific size. Brain tumors and spinal cord tumors can be removed if people experience problems that affect our quality of life. Otherwise, people with VHL may prefer not to operate and must live with tumors and cancer.

In the 1960s and ’70s, when my mother was first diagnosed with VHL, there wasn’t much knowledge about the disease. Which meant every time a brain tumor popped up, she had brain surgery. It was the many surgeries themselves that ultimately killed her. I was 6 years old when she died.

In my 20s, I was incorrectly diagnosed with polycystic kidney disease and didn’t think much of it until I had my first and only child in my 30s. It was a few years later, I was finally diagnosed with VHL.

Because my family had no real knowledge of VHL, I dubbed VHL as a killer. And I was scared. I was scared for my daughter. I was scared for me. I was scared for the future. And because I was always such a worrywart, I knew I wouldn’t be able to handle the stress of this disease. Especially when my daughter was genetically diagnosed with VHL.

Eventually, I found an organization, the VHL Alliance. They taught me about my disease and how to take care of myself. They taught when to screen, how to screen and when to operate. They know where in the world I can go to find a facility who knows about VHL and doctors who are experienced in VHL.

The VHL Alliance was not around when my mother was alive. She and my grandmother never got a chance to meet others with VHL. They never understood the disease nor did my mother’s doctors. They were utterly alone.

Because those with VHL, like me, have to deal with tumors and cancer their entire lives, including dealing with family members with VHL (brothers, sisters, mothers, fathers, uncles, aunts, daughters, sons, grandmothers, grandfathers, cousins), it can be a lot to bear. It is a heavy, never-ending weight and there is no cure.

When a VHL patient gets a brain tumor or a kidney tumor or kidney cancer (which is what I have, amongst other tumors), they have to carefully monitor these tumors. We can’t always run to the operating table. We have to deal. We have to relax and learn to live with the tumors. We have to learn to live with the fear of possible effects of our tumors. Some of us lose our eyes, lose our organs and some are even paralyzed.

Because of the reality of my tumors and the affects they could have on me and my daughter, I have learned to relax — to not freak out every time I have a new growth. I have learned to enjoy and appreciate life more. I have learned to spend each day without worrying about every little (or big) tumor. Living life with tumors and cancer has taught me to live life with less stress. It has taught me to see the good that may come, instead of the bad. For none of us will never know what may come and worrying about it is a waste of precious time.

VHL has taught me to live a Very Happy Life.

To learn more about VHL and hear other VHL patients’ stories, visit the VHL Alliance’s website.

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Thinkstock photo by lolostock

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