How To Be There for Someone with Cancer

how to be there for someone with cancer

“I have cancer.” The words are the most difficult I’ve ever had to say, but as much as I didn’t want to believe them, I desperately didn’t want to put the weight of my diagnosis on the loved ones around me. Maybe your friend or family member recently shared the life-changing news with you or with a good friend of yours. What do you do now? What do you say? Do you cry with them? Do you stay strong for them? How can you support them during this time? After my diagnosis, I had a lot of people on the internet reach out and ask me similar questions, and knowing that everyone’s experience is different, I was too timid to give them an answer.

But here I am, three years later, understanding that not knowing what to do is more than a problem for the loved ones of a cancer patient. It’s the factor that leads to the patient’s loneliness and feelings of alienation. It’s a tricky situation all around. Hearing the news of a bad diagnosis can be a crippling experience for the family and friends of a cancer patient, which leads to hesitation to get involved, reach out, or offer support, for fear of saying or doing the wrong thing.

I understand how at a loss you might feel in a situation when someone has just told you they have cancer. You may feel like crying. But do you cry? You don’t want them to worry about your feelings at this time. And you definitely don’t want them to think that you think they’re dying. But wait, are they dying? What do you even say? What do you do? It can feel like any decision you make is the wrong one. Let me assure you, there is no “right way” to react. But it’s okay if you react! If you think you majorly put your foot in your mouth, you can apologize for it later and make up for it by just being around them and offering support. In general, being authentic can be very refreshing at a time when everyone around them may be walking on eggshells. When people are tip-toing around you because you have cancer, it can make you feel like it is up to you put everyone at ease, rather than facing your own emotional and relational needs. So remember, be authentic. And just be there. How? Well, let’s talk about some of the trickier needs most cancer patients are dealing with, and then I’ll talk about more practical ways you can help.

cancer-emotional-needs

cancer-patients-are-lonely

Spending time with your loved one is the easiest way to be there after a cancer diagnosis, but it can seem so difficult to make the first move. I’m here to say, just do it. Hop in your car. Buy a plane ticket. Plan lunch. Bring coffee. Send flowers. Pick up the phone. Like I said, so many people don’t know what to do or say, so they just don’t do or say anything. And meanwhile, at a time when they most value connection and time with the ones they love, the cancer patient will often find herself alone.

cancer-patients-need-to-laugh

For me, just being around a group of friends was a great outlet and opportunity for laughter. It felt a little weird if nobody acknowledged what I was dealing with, but after quickly acknowledging it, I was desperate to just move on and partake in the usual fun shenanigans. If you’re not really a funny kind of friend, that’s okay! Take your loved one with cancer out to see a comedy show or a funny movie they’ve been wanting to see. Maybe just rent an old favorite movie and watch it at home where they can be comfortable. Maybe it feels like a lot of pressure to do something one-on-one, so ask a mutual friend to join you if you’re nervous! Planning a game night with friends would be a great idea.

I remember my friend Kara stopped by one day when I had Lucy down for a nap. We sat out on the patio just talking about life and laughing, and she pulled out a cigarette and said, “You want one? I mean, you already have cancer, so….” And I laughed hysterically and so appreciated her ease around me, which made me feel like it was just like old times, even though I had cancer and she was acknowledging it. No eggshells there!

cancer-patients-need-to-talk-about-their-feelings

Ask questions, and listen. Don’t assume they are scared or worried. I actually wasn’t scared or worried after my diagnosis. But that doesn’t mean I didn’t have feelings or sometimes fears. I hesitate to even offer advice about this, because everyone has different ways of communicating, and different levels of vulnerability. But having cancer may make someone more vulnerable than ever. Don’t be afraid to boldly ask, “Are you afraid?” or “Are you angry?” You could soften the questions with, “If I’m intruding, just let me know and we can talk about something else.” But sometimes it helps to have someone draw out feelings with leading questions, without relating your experience to someone else they know or something that they themselves had gone through. I would caution against making any comparisons to your experiences and theirs, even if you think it’s safe by prefacing it with “I know it’s not the same thing, but…” It may still feel like you are minimizing or distorting their experience to a degree. It’s safer to just stick to how your friend is feeling.

If they feel alone because nobody around them understands what they’re experiencing, and you actually do know someone who lived through a similar experience, offer to connect them by having lunch with each of them at the same time, or connect them on Facebook. I found a support group page for people with my rare form of cancer on Facebook, and that has been a great outlet to find others who understand what I’m going through. This could be a helpful suggestion, though some people might be resistant.

In general, I would say that you probably know your friend better than me, so it is up to you to try to gauge the conversation so you don’t push them too far. If you try to have a serious emotional talk, and there is resistance, maybe it is a better time to offer an escape, a laugh, or just a fun time.

how to be there for someone with cancer

physical needs of cancer patients

Because everyone’s needs and feelings are different, and often changing from day to day, my first thought is that you should just ask your loved one how you can be there for them after their cancer diagnosis. Maybe they will give you an honest answer. Or maybe they don’t know what they’re feeling or needing, or they (like me) are a bit too prideful to let you know. Oftentimes those diagnosed with cancer don’t want to be a burden to their loved ones. So keep that in mind, and if you suspect that might be the case with your loved ones, there are some practical ways you can help meet their needs while assuaging their pride. Most likely some of these struggles below will affect your loved one, and you can help without having to say, “Let me know how I can help.” (Because they probably won’t.)

cancer-patients-need-help-driving

I had to drive three hours a day, round-trip, to my cancer treatment which lasted five weeks. It was exhausting, expensive, and could have been very lonely. My mom went with me most days, my mother-in-law and cousin pitched in, and one time a friend accompanied me, which actually made the trip a lot of fun! If your loved one is up for it, do something fun right after treatment. I have to caution you, depending on what treatment they received, they may just need rest afterwards. But if you’d like to share some fun experiences with them, don’t wait until they’re halfway through their treatment regimen. The side effects get worse and worse, so doing fun things during the first couple weeks might be the only opportunity until after they’ve recovered.

cancer-and-hunger

Depending on the treatment they’re receiving, your friend may be struggling to eat. Bringing food for the rest of the family can be helpful, especially if the cancer patient is the one who usually prepares meals for the family. Keep in mind that the cancer patient herself might not be able to eat the same foods as her family. Ask her or her family what she’s been eating, and bring that to her home. I lived on smoothies, so I needed lots of prepped vegetables, fruits, milled flax seed, and that sort of thing. My issue was that my mouth wasn’t producing saliva, and every time I tried to salivate (which was when I saw yummy food or put anything in my mouth) I would break out in painful blood blisters on my cheeks and under/around my tongue. Other people may have lost their appetite altogether, or may feel extremely nauseous and can only stomach certain foods. This is so frustrating and emotional for the patient, and having someone take care of your food can at least minimize the frustration as much as possible. My grandma loved ice cream when she went through chemo. I tried eating ice cream during my treatment and cried because I couldn’t taste it and it just gave me blisters in my mouth. For someone who is used to going to food for comfort, it’s a very emotional experience not being able to eat or taste food.

cancer-patients-are-tired

Cancer patients still have to go to work in most cases, and those patients with children are always on the clock. Offer to take the children to the park, library, or a fun destination that will get out their energy. Tell your friend to use this time to rest and take a nap. Before you leave, change the sheets on their bed, start a load of laundry, and finish the load when you return. Or maybe take laundry with you and bring it back clean and neatly folded the next day. That leads me to my next point.

Cancer patients have housework. How can you help?

Think of how difficult housework is to keep up with in your own home. And then imagine how difficult it is when you are losing hours a week traveling to doctors appointments, and then feeling zapped of all energy once you’re home. The cancer patient still feels like she should be contributing to housework, as ridiculous as that may seem. She still likes a clean house, and her children and pets still create messes while she rests on the sofa. The toilets are still being used, and dishes are piling up beside the sink. You know what I’m about to say. Go over there and be her housekeeper!

If you can’t clean the whole house, at least do dishes or take their laundry with you and bring it back neatly folded the next day.

It is incredibly awkward letting someone in your home to clean up after you, especially when you’re right there sitting on the sofa, feeling like a lazy bum, even though you’re just a cancer patient. So I recommend you team up with another helpful friend who will take your loved one out of the house while it’s being cleaned. They can do something fun and relaxing, like a pedicure, massage, or go to a movie. Then, the next week, you can go out and do the fun thing while your helpful friend stays and cleans.

Having a clean house is so refreshing, and can lift pounds of stress and anxiety from the shoulders of someone relaxing at home during cancer treatment. If you’re not able to clean for her because of distance or time, please consider hiring a regular maid service to help her for a month of two. She might not ever consider doing this for herself, but this sacrifice on your part might be the most support she’ll receive during her experience with cancer.

Cancer patients have children. How can you help?

As I mentioned before, offer to get the children out of the house so your friend can rest. Or offer to stay at home with the kids while he or she runs errands or does something fun with another friend. Maybe your friend needs a date night, or just a night of uninterrupted sleep. Why not offer to keep the children overnight, or stay at her house to help out with babies and children through the night? I had cancer and a small baby at the same time, and having help with kids made me feel refreshed and stronger than ever.

Cancer-patients-have-financial-needs.-How-can-you-help-

Cancer takes a toll emotionally and physically, but it is incredibly overwhelming to most people financially. Many people would not admit to floundering financially, and would not feel comfortable taking money. But that doesn’t mean you can’t assist anonymously if you’re able. We had our church call us one day and tell us that someone anonymously wanted to know how much money we needed to pay off all of my medical bills. We were very uncomfortable with this, even though we believe this is what the church family is for, so we told them an amount that would certainly help (but would still leave us with debt), and then we received a money order for that amount in the mail. Of course I cried all the way to the bank. Another friend arranged a fund amongst some of my friends from the old days of scrapbook blogging and message boards. They all gave what they could, and it added up to be very helpful to pay some of our bills. Yes, I cried again.

Maybe if you feel like your friend won’t be comfortable with receiving money (anonymously or otherwise), you could send gift cards to grocery stores, gas stations, or retail shops. Retail gift cards might seem like an impractical way to help, but I know that if I received money, it would go directly to my medical bills, and I would feel guilty spending it on anything else. Giving a retail gift card gives that person permission to indulge in some retail therapy, or provide a Christmas for their family that they once thought was impossible after their cancer diagnosis.

I remember wanting to go on a trip with Phil, because I didn’t know what our future held, and I felt the immediacy of my relationship with him, and of course with my whole family. But we didn’t have the money. So we never did. Someday, I want to be so on top of our finances that I can afford to buy a getaway for a friend who, God forbid, might have cancer, so she can have some quality time with her husband. This is just an idea for those who are well off financially and who want to know ways they can dramatically support a loved one with cancer.

what makes a shadow

what not to do for someone with cancer

First of all, I know these might not be true for everyone, but they were true for me. And if you said or did one of these things to me when I was diagnosed, please don’t feel bad. I’m just glad that you cared enough to reach out and try to be supportive. But also, just know that these aren’t the best things to do or say, so if you want to be sensitive to your loved one with cancer, read about the things that I’d suggest staying away from.

Don't offer to connect them with your homeopathic doctor.

You might ask them if they’re happy with their care, and if they’re not, you may then ask if they’re interested in alternative medicine. If the answer is yes, then by all means connect them with a homeopathic doctor you trust.

Don't tell them a story about someone you know who had cancer.

Even if the story had a happy ending, it can across as desperate for good news and encouragement, which inadvertently tells them that their situation is so sad you need to manufacture hope. Your friend with cancer is unique, and the struggle they’re embarking on is unique. Everyone’s diagnosis is different, as is their treatment, prognosis, and certainly the type of cancer. I was in a unique position because the type of cancer I have is extremely rare, and it isn’t made up of cancer cells like most others. It is cancerous in behavior only, and there’s not much known about the tumors themselves. Most likely nobody personally knew someone with my same type of cancer, and even if they did, our stories would be vastly different. This is another reason why suggesting forms of treatment or doctors is a bit ridiculous. I doubt if many homeopathic doctors know anything about cancerous paragangliomas, and it’s just exhausting trying to explain this to people who brought up alternative treatment ideas. So I would usually just smile and nod, and be a bit worked up on the inside.

Now this is not to say that you can’t say something like, “My brother-in-law has cancer too.” Or, “My aunt has cancer too. I’m not quite sure how to be there for them.” This is a way of connecting, and isn’t necessarily relating someone else’s experience to your loved one’s experience. I guess if you’re wondering, you can always ask, “Does it frustrate you when people tell you stories about other people they know with cancer?”

don't-give-them-brochures

Again, feel free to ask if they’re interested in more information about new treatment options or centers you’ve heard about, or about support groups that could be helpful. If the answer is yes, then by all means, provide them with material. But I would always ask first.

cancer-merchandise

Perhaps you bought something with a ribbon on it to donate your money in support of those with cancer, and you’d like your friend with cancer to know and feel your support. So you give it to them as a gift. But I personally wouldn’t know what to do with something like that practically speaking, and besides, why would donate to a charity supporting those with cancer, when someone in need of financial support is right in front of you? Maybe it’s awkward to offer financial help, but I already mentioned a bunch of financial ways you can that might be less awkward than just writing a check. I guarantee however you could financially help, it will be more appreciated than the cancer tchotchkes.

cancer industry conspiracies

As convinced as you may be that your loved one is being fleeced by a flawed medical industry, telling them about it is not helpful. It makes their experience more about you and your ideas than about them and their plight. Clearly they have confidence in their doctors and the medical field or they would be pursuing alternative forms of treatment. Just spouting off your theories and vitriol of the industry will shake up your loved one and may take away one of the few confidences they have— confidence in their caregivers. 

just-be-there

These are all good things to think about and consider, but the best way you can help someone with cancer is to quit overanalyzing everything and just be there for them! Show your care and concern. Offer your prayers, and don’t feel the need to always tell them that you’re praying. Just pray, if that’s what you’re convicted to do. Tell them you’re thinking about them. Send them flowers. And let them know that they are loved will never be forgotten.

For those interested in my cancer journey, here are some past posts I’ve written about my experiences.

All illustrations are created by Adrienne Adams for the 1962 children’s book “What Makes a Shadow?”

When Cancer Isn’t Just a Bad April Fool’s Joke

My cancer experience- Making Nice in the Midwest

We’ve all done it. Made bad jokes in poor taste. Laughed really hard only to find out what we were laughing at wasn’t a joke. Well, it was April first 2013, and I was sitting in a cold, sterile room at the Cleveland Clinic with my mom and my eight-month-old baby, Lucy. It had been a little over a week since my intense six-hour surgery to remove an extremely rare and aggressive paraganglioma from my carotid artery.  We were waiting to see what else the surgeons had found while they were in there. Hopefully nothing. My neck was the size of a football, I was swollen, sore, and I had trouble taking off my coat, so I just left it on. I was perched awkwardly on the edge of the tall, vinyl patient’s chair, staring across at my mom who was bouncing Lucy on her lap, because I couldn’t.

“Are you nervous?” she asked.

I said I wasn’t. Well, not really, I said. I wondered if I was telling the truth. We waited. The resident surgeon came in and checked my stitches, checked my nerve function, and told me Dr. Scharpf would be in to see me soon. I wanted to yell after him, “Just tell me! Please, just tell me! Am I going to die?” A few minutes later, my surgeon walked through the door, made the obligatory cute baby remarks, and shook my hand as he looked into my eyes, his own reflecting compassion and concern. I think that’s when I knew what he was going to tell me.

I really don’t remember anything he said before it. I only remember straining my neck a bit to look into his eyes when he softly said, “Unfortunately, your tumor was malignant.” He paused. Probably not for dramatic affect, but boy did I feel the drama of that moment. The weight of it.

I couldn’t look at him any more, as he waited for me to respond. So I relaxed my neck and looked ahead at my little baby Lucy. Malignant, eh? I looked into her big brown eyes, and what did she do? She started giggling histerically. Her little baby mouth opened wide and she just laughed! Her cute little face broke out into the biggest, slobbery smile, completely oblivious that her mama had just heard the scariest news of her life. Lucy just laughed. And it was the best comedic timing for the worst April Fool’s joke I’d ever experienced.

So I turned back to the doctor, smiled at the irony of the moment, and asked, “So, now what?”

Her cute little face broke out into the biggest, slobbery smile, completely oblivious that her mama had just heard the scariest news of her life.

I never expected to have cancer in my twenties. Even when they first found my tumor, they had told me it was benign. I used to pray to God to never let me get cancer at a young age, because I wouldn’t be able to handle it. I knew it would make me angry at God, and I wasn’t the kind of person who could fight cancer. I just knew it. Or at least, I thought I knew it.

I had been spared from the knowledge of my own cancer during my pregnancy, though I was still aware and quite afraid of this rare, mysterious tumor in my neck. I had joined a paraganglioma and pheochromocytoma Facebook support group after finally discovering the group during one of my scary, late night “paraganglioma tumor” Google search sessions. I was mostly just really afraid of either not making it through my surgery, or living the rest of my life with a feeding tube or the inability to talk, because of damage that could easily be done to the nerves that were bundled around the tumor. My doctor described the tumor resection as cutting out a meatball that’s tangled up in bowl of spaghetti (symbolizing the nerves from my brain). The red visuals of pasta sauce and tumors didn’t help me feel any better. Because of the support group, though, I was able to connect with other people who had lived through the same surgery, and they all offered me such support and encouragement, and only some of the people I initially talked to were living on feeding tubes or dealing with other frustrating side effects or recurring tumors.

But still. The idea of surgery on my carotid artery was super intimidating. I would lay awake at night, staring at Lucy, wondering if she would have to grow up without ever knowing me, with only pictures and stories to communicate her mother’s love for her. I then began thinking about death a lot, and how near it constantly is. People at my church would tell me, “For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you.” But quoting scripture at me didn’t ease my concerns. I believe that we live in a physical world where physical things go wrong regardless of what we do, what plans we make, or what God wants for our lives. Bad things happen as a result of choices other people make for us, poor timing, or weird genes. I thought, what if I’m dead in a year? That might be what my future holds, even if it isn’t God’s plan for me. Telling me “you’ll be okay, God is faithful” certainly didn’t ease my worries, when my mind was going a mile a minute.

My cancer experience- Making Nice in the Midwest

my cancer story

A friend of mine agreed with my thoughts about how silly it is when people tell you “everything will be fine.” She said, “We don’t know if it will be fine. But there are things we do know.” And then she reminded me of all of these little miracles that I had completely forgotten.

She said, "We don't know if it will be fine. But there are things we do know." And then she reminded me of all of these little miracles that I had completely forgotten.

  1. When I was in the hospital for a mysterious illness with symptoms that mirrored those caused by active paragangliomas, the doctors kept searching for the cause, and ended up discovering this inactive tumor that otherwise would have gone undetected. They never did find out what had caused the initial symptoms that had sent me to the hospital, but the illness went away shortly after they discovered the tumor. (You can read a bit about it here.)
  2. Initially they told me the tumor was benign after an investigative biopsy. Doing a blind biopsy on such a tumor is actually extremely unsafe (they didn’t know what it was yet since scanning wasn’t recommended during pregnancy), but I was spared from any side effects of the biopsy, and the benign results, as false as they were, caused me to go through my entire pregnancy without stress or worry about having to choose cancer treatment or a healthy pregnancy.
  3. I had been told by surgeons that I could keep an eye on the carotid body tumor for years, because they are typically slow growing and mine was benign (they didn’t find out it was actually cancerous until after surgery). But Phil was told that he would no longer have a teaching job, and while we asked God why all of these bad things were happening (job insecurity plus lots of hospital bills), we felt like I was being led to have the surgery immediately since we might not ever have such good health insurance again. I would have waited to do the surgery if Phil had that job security, and the aggressive cancer would have spread throughout my body and would have been untreatable by the time it would have been detected in my other organs.

I began to think about these little miracles, and my perspective slowly started to shift. I had been stressed and endured sleepless nights because everything in my life seemed like it was spinning so out of control. But then I realized I never really had control to begin with. Control is just an illusion, isn’t it? Before that month, we thought Phil had job security, but who really has job security? Nobody. We never know what tomorrow holds. I had been bitter about my debilitating sickness back in May- the one that led to my tumor discovery. But it made me realize, the things that we perceive as bad may actually be the perfectly formed pieces of a grander scheme.

my cancer story

What makes us decide something in our life is bad? Because it makes us feel bad? Because it makes us hurt? We think cancer is bad because it makes us sick, and because it makes us sad. So, cancer=bad. But I began to learn that just because something makes me feel bad, doesn’t mean that it is bad for me. My person. My soul. Just like physical training is difficult and painful, but necessary for building an athlete. People say, “Why do bad things happen to good people?” But now I ask myself, why do we see certain situations as bad? Because our personal perspectives limit us. And preparing for this major, uncertain surgery totally destroyed my personal perspective. Little did I know, a cancer diagnosis would push my limits even further and take me to places I had never wanted to go, but would never undo if I was given the chance. 

My perspective also began to change through prayer and reading scriptures. Every day, Phil prayed with me that God would take away my fear and give me peace. That same friend who had reminded me of the ways God was working good through the bad in my life confessed to me the grip that worry and fear had on her life. She gave me a set of notecards with Bible verses that speak peace into her own life. I read verses like Psalm 46 in my friend’s own handwriting, “God is our refuge and strength, an ever-present help in trouble. Therefore, we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. Selah.” We continued praying for peace, my friends asked God to give me peace, and my heart was transformed from fearful to steady and sure. Psalm 55:22 says, “Cast your cares on the Lord and he will sustain you; He will never let the righteous be shaken.”

My cancer experience- Making Nice in the Midwest

my cancer storyFinally the day of surgery came, and they wheeled me down the long, cold hallway, away from my waving family, while I managed to smile and hold back my tears, lest my emotions become contagious and plague them in the waiting room. This was it. There was no more waiting. “See you soon!” I said, though I thought, I may never see them again. And I thought how sad Phil would be if the doctor’s had to tell him, “We did the best that we could, but…”

 This was it. There was no more waiting. "See you soon!" I said, though I thought, I may never see them again.

The doors closed behind me, and I finally let the tears slide down my face. The man who was transporting me to surgery put his soft hand on my shoulder and assured me in a low, friendly voice, “You’ll be okay, sweetie. It will be over before you know it.”

I sighed a shaky sigh, but the touch of his human hand had broken down the dam I had built up against my emotions, and I just felt even more scared and alone. He told me all of these nice, reassuring things as he wheeled me around turns, over bumps, and through doors. And he even told me God would protect me. I’m not sure if transport people are allowed to tell you that, but I sure was glad he did. I started breathing easier again. He parked me in an alcove next to my surgery room, and I waited there, alone with my thoughts for about a half hour until they finally wheeled me into the OR. I thought, I’m either going to wake up feeling like crap in the ICU, or I’ll wake up and see Jesus face-to-face. And I suddenly felt calm. And I was okay with either scenario. I really was.

There were two surgeons and a room full of nurses, residents, and one anesthesiologist during my surgery. Someone asked another person in the room if my pregnancy test came back, and I interjected with a laugh saying, “It had better come back negative! I don’t think I’m ready for any more surprises!” And then I saw my surgeon, the kind, blue-eyed Dr. Scharpf who proudly wore a Cleveland Browns scrub cap. He was my ENT who would be resecting the tumor from beside my carotid artery while the head of vascular surgery, Dr. Clair, stood by “just in case.” Because I guess you just never know what’s going to happen when cutting out a rare tumor with unknown properties alongside of a carotid artery.

I had an incredibly difficult time coming out of anesthesia after what was only supposed to have been a three-hour procedure, but had turned into an intense six-hour surgery. I was groggy and miserable, and I couldn’t speak, but I had enough of my wits about me to detect the look of concern when Dr. Clair came into my room and told me that he was glad I was awake and that I win the prize for being the most difficult surgery he has ever done. Wow! I thought, should I be honored? Scared? Relieved? Thankful? Then he said they were concerned because of how aggressive the tumor ended up being, but I was a bit too groggy to put two and two together at that point. He said they had sent in the resected tumor to pathology and they would get the results back in a week or so.

My cancer experience- Making Nice in the Midwest

my cancer storyWell, after a pretty long week of waiting for the pathology report, there I sat in the doctor’s office, facing an adorable laughing baby and the ugly reality of cancer. He said malignant. Malignant? Yes, malignant. I had cancer. I didn’t know what stage it was, what treatment I would be receiving, or what my future held, but I had this incredible feeling of peace. I scheduled an appointment with my oncologist (I had my own oncologist? Crazy town!) and went to the cafe to get coffee and treats with my mom and little Lucy.

“Is it weird that I feel relieved?” I asked Mom as I munched on a a chocolate filled, artery clogging, who-gives-a-crap pastry.

“Is it weird that I feel relieved?” she replied, absolutely surprising me.

They had found cancer in my body. But they had found it. It had been found. I would never have to wonder if maybe they had missed it, and it was growing in hidden places inside my body. I don’t know why, but I had this weird peace, and that same peace that God had given me, he had given to my mom and to Phil. I looked around the hospital cafe and wondered if anyone else there had just learned they had cancer. Was anyone there facing death too? There were people from all over the world, all seeking healing and treatment for physical ailments. And I wanted to reach out and touch each of them, somehow transferring some of God’s peace from my heart through my limbs, out from my fingertips and into their own hearts.

But instead I just washed my chocolate pastry down with some hot coffee and wondered how I was going to tell my family. The timing was incredibly awkward, because after we drove home to Canton from Cleveland, our family had to prepare for my grandma’s calling hours that night. She had just passed away over the weekend. Everyone’s emotions were vulnerable. I didn’t want to burden them with my news. But everyone was in the same room. And they were all asking the same questions. 

“Did you get your pathology report?” “How did your hospital visit go?” “Did you get good news?” I shifted my eyes to Phil. He shifted his eyes to me. I shifted my eyes to my mom. And then the hard part began.

My cancer experience- Making Nice in the Midwest

Telling people I had cancer was the hardest part of my experience. But oddly, it at times was also the most gratifying. I’m not typically one to open up easily about how I really feel inside, or what God is doing in my heart. But I felt vulnerable, and wondered if I was going through this for a reason. And there was also the freakish peace that never left me through the course of my treatment and recovery. So, as my family and friends’ eyes welled up with tears, I was able to embrace them and comfort them saying,  “I’m okay! I’m really okay. I promise. Don’t be sad. I don’t know what will happen, but it will be okay.”

I think people thought I was putting on a brave face. But I am telling you, I have never seen a sick person healed, I’ve never seen the Red Sea parted, and I’ve never seen a person raised from the dead, but I did witness a miracle in my own heart when I had prayed all of those sleepless nights for peace from God, and then he gave it to me. And it didn’t stop there. As many cancer patients know, a lot of good can come from that dreaded diagnosis. Your priorities, which may have been lop-sided and careening out of control, begin to rearrange themselves as you realize what is important in life, and what isn’t. You’ve got cancer, sure. But in the meantime- there’s life! Life is meant to be enjoyed, not to be simply endured or grasped tightly with fear. Every day is a gift, and cancer was the reminder of the brevity of life and the urgency to seek higher things and enjoy simple pleasures.

my cancer story

Not every day was joyful, though, and not every moment was filled with that divine peace. Lucy was learning to make funny noises and communicate her affection to me, and I dreaded the thought of maybe having to leave that behind. We didn’t know how progressive my cancer was, and while I was waiting for the results of my full body scan, one of the members of my paraganglioma support group passed away. And then, a day later, another woman’s life was taken by the same tumors that had spread throughout her body. She was young like me. She had a little child, like me. And my heart ached so powerfully and deeply. And I battled fear. And I prayed to God. Oh, how we prayed to God. I read those Bible verses over and over again. “For God has not given us the spirit of fear, but of power, and of love, and of a sound mind.” (2 Timothy 1:7) “For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you.” (Isaiah 41:13)

My cancer experience- Making Nice in the Midwest

We were all so, so relieved when the full body scans couldn’t detect any more cancer in my body, and I went into my radiation treatment feeling hopeful, though a little anxious about the side effects. People in my church family told me they were praying for me, and I knew they were, because I could feel it! But more than that, those friends and family selflessly helped us get through the exhausting days where I couldn’t take a shower, much less cook, so they would bring us food to eat, clean my toilets, and wash poopy diapers. And when the bills came in, we even had people ask us how much more we needed before they were paid off! Cards came in the mail, and my beautiful friend organized an online fund where my blog friends contributed to help pay for some of my cancer treatment meds that helped make me less miserable during the days when my mouth was full of big, bleeding sores and my neck was on fire with literal burns from radiation. Yes, I felt sore, I felt tired, and I felt bad for myself sometimes. But most of all, I felt loved. I felt peace, and I felt like I had this amazing new perspective on life and couldn’t wait to get out there and just delight in life.

My cancer experience- Making Nice in the Midwest

So here I am, you guys. It’s been exactly one year since Lucy’s outburst of laughter in light of my cancer diagnosis, and I can look back on that day fondly. What a blessing to have that little babe laughing her way through my cancer treatment, reminding me of all the things I have to be thankful for and enjoy, even in the face of death, doom, and despair. Sometimes I feel like it’s cheap for me to say how amazing my cancer experience was, because I survived, and I am healed. But you guys, it was hard. It was really, really difficult. Through it all, God revealed himself to me because I sought him in the darkness that I felt. He took something I thought was a curse and turned it into a blessing. I’ll never be the same.

And Life Goes On

mandi and lucy from making nice in the midwest

I sort of left you all hanging there, didn’t I? I started radiation therapy at the beginning of May, and it definitely challenged me in many ways. Mostly, I found myself spending 3 hours driving to and from Cleveland every day just to get to The Cleveland Clinic. I had visits with doctors, therapists, nutritionists, nuclear body scans, and the radiation machine. At first, it didn’t feel like the radiation machine was really doing anything, but after a week, I felt it taking its toll on my body and emotions.

I don’t have time for anything except cancer.

At least, that’s how it felt during my treatment. I felt pretty grumpy a lot of the time, and decided it was best for the general public if I mostly stayed off social media, and keep my complaints to myself. It was an interesting departure from every day life, getting to connect with people who were suffering from terminal tumors, who were so upbeat and happy to see me and Lucy every day. Of course, there were those who were obviously very depressed as well. I like to think that Lucy helped brighten their days with her antics and general cheerfulness. And as sad as this might be, seeing those people who were not doing well actually made me feel much better about my situation. It could be much, much worse!

So, what was radiation treatment like? Well, they fashioned a plastic mask that strapped me down to a plank, then they would leave the room, and I would lay there while a big disc rotated around my head and neck zapping radiation into my body. The first side effect that I experienced was mouth sores. I had water blisters pop up any time I ate. Then, my mouth became very dry and eating was too difficult to enjoy. It got worse when my throat became raw. The red burns on my face and neck were just glimpses of the burning that was going on inside my body. Any flavorful food on my throat felt like razorblades, and when my saliva glands started working, they would clog up and my mouth would break out into blisters again. Once I completely lost all taste, it was actually easier, because bland foods didn’t irritate me as much, and I didn’t mind eating bland foods. I just have to make sure they’re moist, so I can get it from my mouth to my stomach. You’d be surprised how challenging it is to eat when your saliva is barely there, and more like a thick paste coating the tongue.

I had been using food as a coping mechanism basically since Christmas. Facing a dangerous surgery, learning that I have cancer, and then hearing about how difficult radiation would be, I basically treated myself to eating anything I wanted whenever I wanted it. I gained back the weight I had lost post pregnancy, and basically hated getting dressed because none of my clothes were fitting me right. Which might explain why I sort of quit posting outfit shots here, eh? Once I lost my taste and ability to enjoy food, it really forced me to look at how I was treating food. I became depressed because I JUST WANTED A DAMN COOKIE! But eating a cookie when your mouth is like the Sahara Desert, and your taste buds are hibernating… well, it’s just not really eating a cookie. And nothing can be more frustrating to a stress-eater!

Basically, I barely ate anything for about a week, and that resulted in me feeling even worse. My energy plummeted, and all I wanted to do was lay in bed and sleep. Somebody wake me up in 5 months when I’m back to my normal self, I thought. Since the nurses warned my family that I would be very tired and would need lots of rest, they all pitched in and helped me rest. I laid around feeling awful and sad, sipping on my stinky Boost very high calorie drinks. When suddenly I decided enough was ENOUGH! I need to take this opportunity to start eating completely clean, as difficult as it is to eat real food, and give my body the best food I have access to. And, imagine this, as soon as I changed my diet, I began feeling great! I learned what not to eat in order to keep my mouth from breaking out into blisters, and even got enough energy to start exercising! During radiation! The people at the hospital literally thought I was joking when I told them I had begun to get up early every day before treatment and exercise.

Well, now I’m finished with radiation, and in three months I should be back to my normal self! And my scans showed that there is no more cancer in my body- so it looks like we caught the bugger just in time to save my life! I’m so full of joy, and after a lot of introspection, I have definitely settled at a point where I’ve reevaluated my life and know where I’m going from here.

I need to start living differently.

After discovering how amazing my body felt when I treated it properly, I’ve become obsessed with eating clean and exercising my body. I guess when you get cancer at such a young age, it really shocks you with the realization that you are not invincible. And when you pollute your body frequently (as I did) and neglect exercising your body (as I had been doing since I graduated college), you really don’t stand a chance. Life is too short to spend it in hospitals as I have been doing for the past several months. And life is too short to hate the way you look and feel in clothes! (…or out of clothes, for that matter!) I know I talk a lot about body confidence, and I still stand by the things I’ve said. You can be confident in your body no matter its size. But I had to face the truth that I was thirty pounds overweight (when did that happen?!), at risk for heart problems, and because I was neglecting my body, I really was starting to become ashamed of it. That started taking its toll on me emotionally, and also in respect to how I allow my husband to love me and my body. Not good.

So! You guys, I am making a major life change, and will definitely be investing more time into taking care of my body and preparing well balanced, healthy meals. I won’t barrage you with everything to do with it here, but if you want to follow along with my journey to get healthy and lose weight, you can follow me on My Fitness Pal (my SN is MandiMakes) and follow my Tumbler called Mandi Makes Progress. My Fitness Pal is so great, because I can set my calorie goal, and then make sure all of the calories I’m eating are fulfilling all of my body’s nutritional requirements. I have target percentages for carbs, fats, and proteins, and also make sure I’m getting enough nutrients like iron and potassium- easily seen in the charts that are updated as you add your food for the day. It was a lot of hassle at first, but I’m making it a habit, and since it saves the food I frequently eat, it’s became much more convenient to use. As far as my Tumblr blog goes, I’ll be posting my before and after pictures as I progress (first set will appear on the first of July, since that will be a month since I began the change), inspirational photos (basically before/afters for weight loss, and healthy looking fit bodies), healthy meal and treat ideas, and inspirational quotes (I used to hate those, but sometimes they really do help motivate me!).

Oh, and guess what?! Lucy is growing up so fast! She’s nine months old! Life is changing pretty quickly around here!

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