Non-Hodgkin's Lymphoma

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    Anyone have multiple autoimmune and autoinflammatory conditions?

    Sometimes I get so frustrated. It's beginning to get better with, finally, a good rheumatologist... it's been such a long journey. Ontop of it all, one of the autoimmune conditions I have, likely was the cause of having had gastric Non-Hodgkins Lymphoma (cancer.) This autoimmune condition was missed before my current rheumy... I've just kind of been in an emotional funk with it all... I'm 42 and too young to feel this old.

    9 people are talking about this
    Karen
    Karen @kccmccoy
    contributor

    Multiple Sclerosis Doesn't Stop Me From Being a Fun Grandma

    I’m a grandma. Better known as “Ny-Ny.” We’ll get into that later. What I want to tell you about now is a story you’ve heard at least a million times. You’ve heard all these platitudes and more from friends on social media. But I’m going to tell you a few new ones. “I have the best grandchildren! My life is all about them now! You can spoil them rotten all day and then give them back to their parents!” “My granddaughter has saved my life the moment she was born! My life is entwined with hers! I can spoil her all day, but I don’t want to give her back to her parents!” Yes, it’s true. From the day Tina Hazel was born, my life has taken on a new meaning. It went from the brink of despair to utter joy in a second flat, and has only grown from there in the last six years. From the moment I busted in through the out door of the hospital, made my way to my daughter Colleen’s room, and was presented with the most precious of all miracles, joy returned to my heart. The floodgates of emotion while holding this warm, wiggly bundle of pure love had opened. My heart released all of its black, tarry misery and was refilled with light feathers of tickly undulation. My pink little friend, I am here, I thought. You are a part of me and you own the other parts. I could never imagine a day such as this. OK, you say. All grandmothers feel this way. Let me give you some background before I lose you for being just another bragging old lady. I didn’t feel anything even close to joy when my firstborn told me she was pregnant nine months prior. Almost 20 years earlier to the day, Colleen received a kidney transplant. In the process, her own two damaged kidneys were removed. She had an extremely rare autoimmune disease called Goodpasture’s that almost took her life at 9 years old. The offending antibodies were attacking her lungs and kidneys the summer prior to her diagnosis in the fall. She had to go through chemotherapy for six months, then peritoneal dialysis for another six months. Strong pharmaceuticals and medical procedures took their toll on her young body. Then many years later, once in high school and once while away at college, she fought non-Hodgkin’s lymphoma and two more full rounds of chemo and radiation. Life seemed to be getting back to “normal” (what’s normal?) when she had surgery to remove a tumor firmly attached to her fallopian tube and ovary. They were removed as well. A case of endometritis in its most damaging form. Doctors told her that she would not be able to bear children. In fact, they strongly suggested not getting pregnant. I was with them on that advice. You see, her kidney transplant was not from a stranger. It was from me, her mother. Tina’s grandma. Ny-Ny. I had some stake in this pregnancy game. Not exaggerating, I was furious and wildly afraid for my daughter. How could she risk everything she had fought so hard to beat? How could she even get pregnant? How could she risk going into rejection because she’d have to stop taking her meds? What if her cancer came back? What if something happened to the baby because of all the chemo? How irresponsible, I thought. How selfish and unthinking. I thought she must be lost in love for her new husband and couldn’t think clearly. But she explained that she wasn’t going to stop living her life for “what ifs.” She’d given up too much already. That really resonated with me. I should tell you now that I have two children. My son, Cale, is three years younger than his sister. He also has presented me with his own little pink bundle of gurgling preciousness, Lily Rose. She’ll be 1 year old in February. An Aquarius like me. I will tell you all about the special relationship I have in that little love story at another time. I want to point out that I have always wanted to be a mother. Growing up, I spent many hours babysitting in my neighborhood. I even came up with the idea for a “Tiny School” in the summer. I would charge $10 a week for entertaining little kids for a couple of hours each day with crafts and games. Later in life, while married to an Air Force medic, my children’s dad, rather than go back to work after having our first child, I got a home-based daycare license and did that for a number of years. My kids have always come first in my life and always will. I have been grateful that through two divorces they have remained a constant in my life. I guess that’s why what Colleen said about not wanting “what ifs” to keep her from having a child made sense to me. That emotion has too great of a pull. So after 8 1/2 months of pregnancy with several complications, Tina Hazel was invited to come into the world a little early. Here’s where the story gets even better. I have multiple sclerosis. I have been diagnosed since 1986. At the point in my MS life that Tina was born, I was in a power chair. In constant pain and unable to do all the things I used to do quite easily. The first 20 years after the dreadful day of realization my life would be different, I had become quite active outdoors. In Oregon, there is always an opportunity to bike, hike, or kayak. Skiing, fishing, and snowshoeing were also an option. I took advantage of all these things and even started my own massage/esthetician practice in the athletic club I worked out at every day. My MS was not an issue. Until it was. I went from being extremely active to wearing a knee brace and lying about why I needed it. I cut back on my clientele due to fatigue and snuck naps in any way I could. Then a cane was part of my outfit. Next, I modeled two arm crutches as part of the ensemble. Finally, I had to give up my beloved career as an LMT, farm out my customers, and start my new life in a wheelchair. Divorce soon followed. I was feeling pretty depressed, as you can imagine. Never before in my life had I ever felt suicidal, until then. How could a child ever love a grumpy lady in a wheelchair? Kids run away or point at people like me! And what could I possibly do with a grandchild? My dreams of hiking, biking, and just plain old running around were not to be. I couldn’t even take care of a baby now. I ground myself down like a stubby pencil on sandpaper. What worth do I possibly have now? I made lists in my head of all things I couldn’t do anymore, how my life had been stolen from me. I had only just turned 50 and I’m all washed up. Now add my inability to be a grandma too. Something else happened when Tina arrived. I realized that my daughter’s blood was filtered in her body by her kidney. The one that I gave her 20 years ago. That blood went from one mother, through another, and finally ended up in baby Tina. And that is a special bond. Something that really meant something to me. My new reason for being here. I had purpose again. I was someone special to this little new life. Some might say her being here is a miracle. I’ve even said it myself. All I know is that my life was changed the day all this took place and has only gotten better. My being in a wheelchair did not work with a new baby. Nor did it work very well against the corners of all the doorways! I soon found that a power chair gave me one arm free at all times. So as soon as I got that figured out, Tina and I were off! She has been riding on my power chair with me every Wednesday since she was a few months old. On our normal dog walking route in the neighborhood, people have watched her grow from riding in my arms to sitting in my lap. Then a few years later she started standing on my footplate. She must feel like she’s flying at the helm of the Titanic as we speed along, her long air blowing in my face. I’m not gonna lie, the bigger her feet have grown, the less room there is on that footplate. I don’t wear shoes so some days they get stepped on quite a bit. We’ve put many miles on all my chairs over the years. She and I are the only ones who have shared all the minor mishaps of our situation. Getting stuck in the mud. Being trapped under a gigantic pine tree’s branches. And the one time her Daddy had to rescue us after a picnic went awry when my motor stopped working in 90-degree weather. We were even on the news once when I complained about my wheelchair getting stuck in the wood chips around the play equipment at the park, and the fact that there were no wheelchair entrances to those very playgrounds. My favorite time right now is picking her up from school on early release Wednesdays. I wheel onto the blacktop after her class has lined up. When she gets the nod and wave from her teacher, she runs at full speed towards me, her backpack bouncing and her arms going wild waving, all the while yelling “Ny-Ny! Ny-Ny!”. She naturally leaps onto my footplate, piles her stuff in my lap, and starts talking. That’s what she does. Tina talks. All. The. Time. Her mouth just cannot keep up with her brain. She has too much to say. Too many opinions. Too many ideas. Too many kids to say “Bye! See you tomorrow!” to. Too many compliments to give. Too many plans for us to complete during the few hours we have together. Too many times to say in exasperation, “Silly Ny-Ny!” Then we sing most of the way home. I drive a converted van with an automatic ramp and hand controls. Tina’s car seat is in the way back. She prides herself in helping me locate “Ny-Ny” parking spots in light blue. And she helps me moan and groan about people being inconsiderate with their parking skills. She always polices my power chair driving does and don’ts; not too close to an edge, stay away from mud and gravel, use ramps to cross the streets at the curb. You get the idea. This 6-year-old has witnessed life as a disabled member of society, with all its ups and downs. She is proud of me when introducing me. She is not embarrassed by me. She was so excited for the day that she and baby Lily could both ride with me in my chair! Recently, that very thing happened, and it was one of the best days of my life. Could I possibly really have the two best granddaughters in the world? I think I do. I look forward to Wednesdays. I plan what we will do that day. I make sure I’m rested up for all the activity. I shop for the craft supplies we will need. I make sure I have all her favorite foods. We share a love of baking and party planning. Every family get-together has a theme. And goody bags and decorations. We play Barbies, we plant flowers, we share secrets. Those feet parked next to mine all the time. We have sleepovers, play tricks on my husband “Jahgee,” and dress up the dogs for tea parties. We are kids together. One of us is in a wheelchair and it makes no difference whatsoever. I can’t claim to have any influence over Tina’s incredible sense of empathy; I think she gets that from her mom. She has only compliments for those folks she first meets. She is kind towards others to a fault. She feels sad for others. She feels joy for others too. She’s my sidekick. Now don’t assume I’m like all those other Grandmas who think their grandchildren can do no wrong. Tina is the world’s pickiest eater. She interrupts. Somedays she will not let me sing. Not a note. She has an unhealthy aversion to ants. She doesn’t like to clean up. Heck, sounds like me in kindergarten! I’m not like those other grandmas because… I’m not. I’m not a grandma. I’m better than that. More special. And I have my own parking spaces all over town. I am Ny-Ny. The only one. I was crowned Ny-Ny while playing a peek-a-boo game with a months-old little princess. “Whose going nigh-nigh? Baby Tina’s going nigh-nigh! She’s up! Peek-a-boo!” I giggle as the blanket goes up and down. Thank goodness I didn’t become Grandma Peek or Old Lady Boo. I love being Ny-Ny. That’s how a little girl saved my life. That’s why we have a special connection. That’s why I wake up hopeful for each new day again. I only have more good days planned for the future. I hope Lily and I will share a day each week too. Then she and I will have all-new adventures in which I see her daddy in her, as a little boy. I wasn’t in a power chair back then. I got to run along the beach with him growing up. But Lily already rides in my lap like Tina did. She’s growing up being accustomed to the feeling of moving with her Ny-Ny in a unique way. And that, my friend, is worth all the tears I shed wondering what kind of grandma I could possibly be.

    Mel Hebert

    Why Cancer Remission Can Bring Up Complicated Feelings

    My husband and I were seated in front of my oversized computer monitor waiting for another video visit with my new oncologist. I had just switched providers to get a second opinion, and this was my first meeting with him. Earlier, he had said I’d most likely need a stronger chemotherapy regimen, so my husband and I sat side by side. He had a notebook to write things down and my heart was pounding with anticipation. But then, almost magically, the doctor came on and said those three words every cancer patient I know wants to hear. He explained what was found in my restaging process of biopsies and PET scans, then proceeded to tell me, “You’re in remission. Your cancer cells are sleeping. It will come back eventually, but for now, you no longer need treatment.” Naturally, I clarified, “So, I don’t need any more chemo right now?” He said I didn’t. And everyone around me was so overjoyed. My husband wanted to celebrate. My mom was ecstatic. My mother-in-law nearly cried. Yet I sat there feeling nothing but anxiety. I didn’t feel happy about it. Because if I wasn’t in active treatment for cancer, what curveball was coming next? Throughout my diagnosis, my husband and I found solace in humorously calling my life “A Series of Unfortunate Events.” To be honest, I don’t remember what happened in the actual book series, but the title was fitting. My entire life has been trauma after trauma, so adding on medical trauma was just another checkmark off the list. It was only a joke because we were serious, though. If I’m being honest, 2021 was one of the hardest years of my life. It started with multiple hospitalizations, then an intensive therapy program, then a cancer diagnosis, which meant that I couldn’t work my dream job when I graduated college due to the treatment. From start to finish, it’s been one whiplash after another. The entire year was spent mourning my health. And now, a doctor was telling me I was on the road to getting my health back. So, why wasn’t I happier about being in remission? As my husband took me out to Olive Garden to celebrate, I found myself with clenched teeth, trying to find it in me to smile and be as carefree as he was. Still, I didn’t see how everyone else could be so elated. All this meant was that another curveball was coming to blindside me soon and this time I didn’t know what it was. I felt anxious and scared and had an enormous sense of dread. I had just gotten into a comfortable routine with the cancer thing. I didn’t have it in me to adjust to whatever terrible thing was coming next. And on top of that, I felt bad about feeling bad. Everyone around me was happy, and there I was, being pessimistic and bringing the mood down. That created a lot of guilt, yet I couldn’t let my anxieties go because, in order to protect myself, I couldn’t be happy-go-lucky. I had to be guarded and anxious. Because if I wasn’t, the next unfortunate event would surprise me again, and I didn’t want any more surprises. I’ve had enough of those to last a lifetime. Two weeks have passed since then, and it still feels odd. I’m not entirely anxious about being in remission anymore, but it’s rare that I’m boasting proudly about it. I’m still apprehensive, but I’ve also realized that being in remission is a blessing and I now get to go back to living my life again. Even if that fact terrifies me, I still get to go back to living my life. I’m just hoping there won’t be any more bombshells to deal with as I do. But even if there are, I know I can handle it. I did handle cancer, after all. I’d just prefer to live a life free from sucker punches like getting diagnosed with cancer or being in the ER six times in a four-month timespan. I’m hoping I can find a new “normal” soon.

    Community Voices

    Sun sensitivity after chemo and imnotherapy

    Hi all just wondering I'm a male been bald for years I'm in remission from non Hodgkin's lymphoma and just lately on very mild day's I've been out side for maybe 10 mins minus a hat and my head has stung and hurt badly like intense sun burn. I've been in remission 2 years have others had similar problems ? Just interested that's all I have a hat nearly everywhere now!! I have had my scalp checked all ok! I didn't expect this so long after treatment...that's all I can think it must be?

    Mel Hebert

    Getting a Cancer Diagnosis After Living With Mental Illness

    Saying that I’ve been through a long, treacherous road while dealing with my mental illness is an understatement. I was hospitalized for suicidal intent for the first time when I was 17. That feels like a lifetime ago, but really it’s only been 10 years. I cycled in and out of the hospital after that, and I thought I might always live my life in hospitals for a while there. For years, I couldn’t hold down friendships, a job, I couldn’t participate in college — I felt so isolated. Yet, all the while, people would feed me “positive” thoughts like, “It could be worse. At least you have your physical health.” The statement infuriated me. There I was, in and out of a mental hospital every few weeks, and they wanted to remind me it could be worse? In my mind, that was the worst. I was at rock bottom, so forgive me if I didn’t care about my physical health. It’s great that I was physically healthy. It didn’t undermine that I was absolutely miserable in dealing with my mental health. Now, I regret that. About six months ago, I was diagnosed with cancer, and I finally understand now. I wish I had listened. I wish I had realized that while it was unfortunate to be dealing with such a severe mental illness, I was still fortunate to have my physical health to rely on. Since finding out I have cancer, things have changed forever. One thing is, I always thought the exhaustion from depressive episodes was the worst kind of tired there is, but now that I have “depression tired” and “cancer tired” mixed together, I realize how wrong I was. Most days, it takes everything in me to make it through the workday. I come home with terrible headaches and all I can do is lay in a dark room under the covers because I have nothing left in me to give. Taking the dogs out seems like the most insurmountable task. If someone asks me for a favor, I will likely break down crying. On weekdays, I’m at my tipping point when I come home to the point where my husband has questioned if going on disability would be a better idea. He hates seeing me so worn out from life, but we both know work is the only thing that keeps my mental health stable. It’s part of the balancing act. Physically, I need more rest and less of the emotional stimulation that work provides. Mentally, I need to go to work to stop myself from becoming suicidal because I put all of my value in my career title. It’s a vicious cycle. And then the sickness comes. Before this — before cancer — I was one of the most reliable employees there could be. I almost never called off, I always had sick days to roll over, and I was extremely dependable. It kills me that I can’t be that way anymore. Due to cancer and the treatment I’m receiving, I’m always sick. Recently, I was sick for six weeks, which led to me calling off for four weeks because it was so severe that I couldn’t work. I was so frustrated with myself. I wanted my body to just cooperate for once. I wanted to be at work, but my body wouldn’t let me. At the time, my depression grew with every day that passed. I didn’t want to be sick anymore. I wanted my life back. And then there are the little things that happen. Things that no one really thinks might bother me, but they’re things that cause such distress that I struggle to hold it together. For example, my cancer causes shortness of breath. That means that simple things like walking down the hall with coworkers or getting into the car leave me absolutely winded. And that’s embarrassing. It’s completely embarrassing to know I haven’t done anything strenuous and I’m still struggling to breathe. It’s so bad that people ask me if I’m OK. Because other people don’t know my symptoms — not unless I tell them. And that would just make me self-conscious. I hate when people pity me or don’t know what to say, and talking about my symptoms would lead to discomfort that I don’t have the energy to deal with. But it’s not just the embarrassing things. It’s the heartbreaking things too. For instance, ever since I was a little kid, I’ve loved singing along to songs. One of my biggest coping skills is turning on a Taylor Swift song and belting the lyrics alongside her to calm my anxiety. But even when I’m sitting still, there are lyrics I can’t finish because I run out of air. The shortness of breath doesn’t allow me to sing my favorite songs, and that’s one of the things that hurts me the most. I can deal with the embarrassment I mentioned before, but when I can’t do things that I used to be really good at and loved more than anything — it really is heartbreaking. It leaves me devastated. I’ve cried over it more than once because I just want my life to go back to normal. Another thing to deal with is the holidays. I barely have the energy for everyday life, so I most certainly don’t have the energy to spend time in a large gathering and that makes it hard. I don’t want to pull “the cancer card” but I also don’t know if I can make it through Thanksgiving without having a mental breakdown. And it’s isolating because I know that my family wouldn’t understand. No one understands. No one can comprehend how tired I am and how helpless I feel as my body refuses to cooperate. Even my husband, as much as he tries to understand and has hardships of his own in coping with this, just doesn’t get it. He’ll ask me to do simple chores that I know I should be able to do, so I’ll try to do them, which ends with me crying because I can’t and I feel defeated. It always makes him confused. He wants me to communicate with him about when things are too much, but everything seems to be too much nowadays and that’s humiliating to admit. And overall, while I am sad about all of this, I’m mostly angry. I frequently will sob out of frustration, that’s how angry I am. I want my life back. I want my body back. I want my health back. Every day, I feel like my body is betraying me and feeling that way is such a horrible experience. I want to be able to go back to the way things were before, but I know I’ll never be able to. Getting a cancer diagnosis changes everything, and right now it’s hard to picture things ever being the way they were before again. It seems impossible. The best I’ll be able to do is find a new normal, which is something I can’t accept. I don’t want to find a new normal. I want my old normal back. If I could go back, I would have listened. I wouldn’t have been grateful that I have a mental illness by any means, but maybe I would have been able to see the whole picture a bit more clearly. I wish I could’ve seen how fortunate I was to be struggling in only one area. Instead, I took that for granted. Now, I regret that more than anything. And I’m really hoping things get easier because where I’m at, I have so much resentment inside of me that I don’t know what to do with it all. I need that to change. And if it doesn’t, I hope I can at least find acceptance with what my new reality entails because from where I’m currently sitting, that seems like an impossible task. But even with that being said, I’m still hoping I’ll prove myself wrong. Because I need a restored sense of peace. I just don’t know how long it will take me to find it.

    Mel Hebert

    Coping With Cancer Anxiety at Night Before Bed

    Having cancer is unlike anything else. The entire diagnosis and treatment process is traumatizing to have to go through. It’s full of searching for information on Google, dealing with advice that I’ve never asked for, and trying to find some way to cope with it all. That’s been the hardest part for me — trying to find a way to cope. With my other illnesses, it’s easy. All it takes is medication tweaks and having a few bad weeks. Cancer has other things in mind, and the process lasts for months. I’d do anything to have it be just a few bad weeks. The hardest time to cope with it is when I’m not busy, which is why I try to keep myself as busy as I can. I prefer the distraction over facing the fact that I have cancer. But sometimes I do have to face it. Eventually, I can’t distract myself any longer and get into the psychoanalytical piece of my diagnosis. Usually, this part comes when I’m finally laying down for the night, ready to go to bed. And I’m used to facing depression before I sleep. I was suicidal for years and my suicidal ideation was always worse at night, so getting depressed and anxious before bed is nothing new. But the topic of concern is. Because there’s so much more uncertainty when it comes to cancer. And now that I’m finally not suicidal every night, what if I die due to an illness that’s out of my control? That’s one of the hardest thoughts that comes to mind. I’ve made the mistake of looking up my prognosis, and while it’s good, it’s still not reassuring. There’s still that chance I could die. I’m still more likely to die than my same-aged peers. And that spirals another train of thinking. Realistically, when I think of myself dying, I get sad, but not for the reasons people may think. As I said, I grew up with suicidal thoughts, and after three suicide attempts, I feel lucky to be here right now. It’s my husband and dogs that I worry about. I know it would kill him — it already hurts for him to see me in so much pain. One of my dogs is obsessed with me and I know she’d be devastated. I don’t want to die because I don’t want to hurt anyone I love. And then comes the anxiety. I’m over $30,000 in debt from this year’s medical bills alone. I have one emergency room visit that my insurance decided not to cover. I’ve been hospitalized three times. I haven’t worked a stable job since last fall. It’s been really hard. And I know if I die, all of that debt falls on my husband. It hurts knowing that because of me, he could get stuck with a lifetime of debt and need to cope with losing me. It’s really upsetting to think about. Lastly, if I’m being honest, sometimes I still think about how maybe I should die. Maybe everyone’s life would be easier. My husband wouldn’t have to see me in pain or deal with my never-ending illnesses from cancer. I wouldn’t have to worry about accumulating more debt. Everyone might be better off. Which, I guess is still suicidal thinking, but it’s not the type I’m going to act on anymore. It’s mostly intrusive thoughts. So, I guess what it comes down to is thinking about all of the uncertainties before bed. With nothing to distract me, I’ve learned to sit in my anxiety pretty well. Most days I can cope OK with these not-so-fun thoughts. But some days are hard. Some days I have to cry it out. Some days I feel more hopeless than ever. I try not to focus on that. I try to imagine a few years from now where I can cope with my symptoms and am living a functional life again. Although, that isn’t always successful. Lately, as things progress, I become less and less hopeful that it will get better. But I’m trying to hold onto it. As I fall asleep, I try to envision a life where I’m not debilitated by my diagnosis. Hopefully, I’ll get there one day.

    Mel Hebert

    What I Wish People Would Say When I Talk About Having Cancer

    What is one thing someone said to you post-diagnosis that actually comforted you (as much as it can, of course). Not the “I’m sorries” or “I’m here if you need something,” but what is something specific someone said that hit your soul and why? Like many other people, I hate telling people I have cancer. Not for the pity looks or for the never-ending questions, but rather because people don’t know what to say. Or they inevitably will say the wrong thing that will just end up making me angry. I’m the type of person where I feel uncomfortable making others feel uncomfortable, meaning if someone is making me feel awkward, I usually won’t address it. For example, I hear, “You’ll beat this!” a lot as words of reassurance, and I don’t want to make anyone uncomfortable by correcting them and saying, “No. I won’t. My cancer is incurable.” There are so many optimistic phrases people want to push out when they find out someone they love has cancer, and I get it. It’s instinctual for a lot of people to try to make it better. But that’s not what I need. I don’t need to hear, “I’m so sorry” or, even worse, toxic positivity. I would stretch it so far as to say, “I’m here for you if you need anything,” doesn’t mean much, because it doesn’t feel right reaching out to people who I know will only pity me (and when you hear it hundreds of times it starts to lose the sentiment I’m sure people mean for it to have). So, that brings the question of what would I like to hear when I tell people I have cancer. Firstly, don’t try to fix it. If I’m sad, don’t hit me with positivity. Be realistic. There’s nothing worse than being sad about reality and someone telling you it’s all going to be OK, because how do they know that? Maybe everything is likely to be OK, but at the end of the day, it’s not guaranteed. Instead, just admit that my situation sucks. Sometimes, when I’m experiencing symptoms, there is no positive side. It just sucks. Which, going along with that, instead of asking the generic question of, “What can I do to help?” offer me something specific. As an example, I was in the emergency room last night for cancer-related issues. I texted my best friend and told her that I was getting another CT scan to see if anything new was going on. And she didn’t try to make it all better or pressure me to just think positively. Instead, she asked what was going on, was genuinely concerned, and told me — didn’t ask, but told me — “I’m going to stay up with you until you figure this out. No matter what, I’m here. I love you.” Similarly to that, another thing is when you’re offering to do something specific, make sure you’re meeting your loved one where they’re at. Don’t offer to do something that would make you feel better. Recognize their ability, mood, and limits. A less dramatic example than being in the emergency room is that I recently found out I’d need another biopsy to see if the cancer was getting worse or spreading. That was a pretty hard blow, so I didn’t pay attention to my phone much in the following days. Texts went unanswered and I just wasn’t in the mood to get sympathy or pity. But when I finally did text back, one friend really pulled through. And this isn’t one of my best friends. She’s not someone I regularly hang out with. But she somehow knew just what to say. Instead of telling me how it’s probably nothing or saying, “I’m so sorry,” this friend first asked, “Are you OK?” and her follow-up was, “Do you want me to come and sit with you?” And I know that seems so minimal. Why would that be a big deal? She just asked to come and sit with me — that’s so simple. But that’s all I needed. A lot of the time, I don’t have the energy to go out or be bubbly. When she offered that, it was the first time I felt like someone outside of my husband was willing to meet me where I’m at. This friend and I usually go to the mall or grab a bite from local restaurants, but she realized that I wasn’t in that head-space for that right now. It wasn’t what I needed. And even though I did decline her offer due to not being in the mood to shower, I still greatly appreciated it. It showed me she was thinking about what would make me feel better — not what would make her or the pre-cancer me feel better. The last example I can think of is hearing with a genuine attitude, “I’m so proud of you.” Which sounds a little silly to me sometimes. What are you proud of? But my husband will expand when he says this and remind me, “You’re doing such hard things and handling it to the best of your ability. You’re trying so hard and I’m so proud of you for that.” Sometimes that means so much that it makes me tear up, because so often having cancer leaves me feeling helpless. I need to call off of work a lot, I’m always sick with something or another due to being immunocompromised, and a lot of the time, I don’t have the energy to do things that I used to do so easily. So, hearing that the person I love the most in the world is proud of me is beyond reassuring. It means everything to me. And I get it why people don’t always think to say these things. It’s hard seeing someone you love go through cancer. It’s hard not being able to fix it. But I know no one can fix it for me. No one can take my cancer diagnosis away or make it any better. I just want others to realize that too.

    Mel Hebert

    The Truth About My Experience With Chemotherapy for Lymphoma

    As I’m sure much of the world has heard of chemotherapy, I was also aware of what chemo is when I was diagnosed with stage IV lymphoma. I had seen the movies, heard the horror stories — it’s something I didn’t want to experience. But after my diagnosis, I knew that it was a route I was going to have to take. In fact, my doctors prepared me that I’ll most likely need to go through chemo multiple times in my life due to the fact that my cancer is incurable and will always come back. But what actually goes through my brain during a chemo appointment? You might not want to know. At my first chemotherapy appointment, I wasn’t expecting such a reality check. I’d been diagnosed with cancer for four weeks at that point, but I don’t think it really hit me until that moment. I have cancer. And it’s a type of cancer I’ll need to deal with my entire life. The realization hit me like a truck. On chemo days, I wake up with immense dread. I don’t like to dwell on the fact that I have cancer, so my coping skill is to pretend I don’t. But when chemo appointments arrive, I have to face it. When I arrive at the cancer center, I’m instantly anxious. I know what’s coming. And even though the chemo appointment itself is bearable, in my mind it’s the worst thing in the world. I remember one time I was walking in with my mom and she made a comment about how nice the cancer center was. At the time, it enraged me. It’s not nice. The cancer center is probably the place I hate most in the world. It’s where I went from being a normal 26-year-old to getting a lifelong diagnosis of cancer. Rationally, I know it’s really nice for a cancer center, but it’s not nice for me. Usually, I’m able to hold myself together until I need to get my blood drawn. Then, it depends how that goes on when I begin crying. I don’t have a port, so the nurses have to find a good vein each time, and if they get the IV in the first time, I’m a little more optimistic about how my day will go. But on the days where it takes three, four, or even five times with veins being blown and my whole arm turning blue, it’s a lot harder to cope with. There’s roughly a 50/50 chance that I’ll have a full-blown panic attack while waiting for the actual chemo to start. I need to bring my anxiety medications every time because I know I may lose all control if I don’t have them. I don’t consider myself a “warrior.” I’m not the person in the cancer center that’s taking pictures with a bubbly smile talking about how they’re going to “beat this thing.” I’m usually the one on the verge of tears. However, since every other patient there seems so happy-go-lucky, I feel like I can’t cry in front of nurses and doctors, which often leaves me trying to hide my tears. I’ll get asked, “Are you OK?” and want to snap at whoever dares to ask the question because obviously, I am not OK. I am the furthest thing from OK in those moments. If I was OK, I wouldn’t be getting chemo. Every session, multiple times, I’ll have these fantasies of ripping my IV out and just running away as fast as I can. I want to dig my head in the ground and pretend I don’t have this illness. I don’t want to deal with it. I don’t feel I’m strong enough and genuinely don’t understand why this is happening to me. And I wish I could be sunshine and rainbows about it, spewing on and on about how it gets easier and it’s not that bad, but unfortunately, for me, that’s just not true. I get more used to it, sure, but it’s still just as traumatic. The chemo, the side effects, the symptoms from cancer — everything is traumatizing. I often wish this never happened to me and question what I did to deserve it. I try not to dwell on that. I try to distract myself on normal days because I rationally know that all of this was by chance and I didn’t do anything to cause it. But when I’m in that cancer center, everything changes. I lose that rationality and begin to go down the rabbit hole of unhelpful questions. “Why me?” “Why couldn’t I have dealt with this later in life — why did I have to get diagnosed at 26? Why can’t I just enjoy what are supposed to be the best years of my life?” “How can I make this go away?” “What did I do to deserve this kind of karma?” There’s never an answer. It’s all anxiety and depression talking. But for some reason, I can never pull myself out of the rabbit hole there. To me, the cancer center is this wretched place where all of the bad thoughts come out. Even though my prognosis is good, I can’t help but go down that dark road every time. And I know I’ll beat it, just like all those people who smile for pictures instead of crying. I’m not going to die. But knowing that doesn’t make it any better. So, if you were looking for an article that gave you hope or inspiration, I’m sorry this wasn’t it. I’m just not there yet. Maybe one day I will be, but right now, whenever I get chemo, all of the positivity deserts me. To everyone else fighting, I wish you well. And if you have any insight on how to put on that happy face and forget how awful chemo is, let me know. Otherwise, we’ll get through this together.

    Mel Hebert

    6 Things I Didn't Expect When I Was Diagnosed With Cancer

    When I got diagnosed with cancer last June, it was surreal. I’m 26 and, for the most part, fairly healthy. I’m overweight — but I don’t smoke. I don’t drink. I don’t do anything that’s connected with cancer. Yet, there I was, getting diagnosed with stage IV lymphoma. My prognosis is good. Lymphoma at 26 is unlikely to kill me. But still, it’s hard. And not just for typical reasons, like chemotherapy or nausea, but for other reasons as well. Here’s everything I wasn’t prepared for when I got diagnosed with cancer: 1. My life was about to change forever. Despite having a good prognosis and knowing I won’t die immediately, I will never be the same as before I was diagnosed. Even when the chemotherapy is over and I only need to go to the cancer center every few months, I still won’t be the same. My life has been forever changed — and I don’t know how to explain it. But every cancer patient I’ve talked to agrees on that one thing. Getting a diagnosis of cancer alters everything. Especially when you’re 26 and find out your cancer is incurable and will inevitably come back again at one point or another. 2. You can be allergic to chemotherapy. This is something that surprises people every time I mention I’m allergic to the chemotherapy I’m receiving. My throat will get itchy and I need to be closely monitored to make sure everything remains stable. To solve it, they will stop the chemo for an hour, pump me with more Benadryl and steroids, then resume the chemo. This means that my chemo appointments have been up to 10 hours long. 3. The side effects of chemo are worse than the actual chemo (for me). When I started, chemo I thought it was the most awful thing. I hated being poked with needles. I would cry every time. And now that’s waned away a bit. Instead, I’m left with the aftermath. I’m trying to work while completing chemo and need to call off half of the time due to being so immunocompromised that I get sick, or just having straight side effects. Currently, I’ve had chronic GI issues for over five weeks. I’m a teacher, so I’m not always able to leave my class as the kids can’t be unattended and I’m not going to risk throwing up or having a diarrhea accident due to not getting to the bathroom in time. 4. Being immunocompromised is really awful. As someone who was fairly healthy before all of this, I’m suddenly sick all of the time. I don’t remember the last time I went a day without being sick with some sort of illness. Maybe two months ago, way back in August? And that’s with the protocols in my state of masks being mandatory. I can’t imagine if masks weren’t a thing and people weren’t being over-vigilant about keeping the population healthy. 5. People don’t get it. They just don’t. They don’t know what to say. They’ll inevitably say the wrong things most of the time. Especially being so young, my friends have never had a friend with cancer, so I mostly get toxic positivity whenever I try to vent. All I need is a, “You’re right. That really sucks. I can’t even imagine.” Because they can’t. Until you’ve been through it, you really can’t imagine what it’s like. And feeding me, “Everything happens for a reason!” or “Just keep a positive mindset and you’ll be OK!” isn’t helpful. If everything happens for a reason, please tell me why I have an incurable cancer diagnosis at 26 years old. If I just need to keep a positive mindset, why won’t my symptoms go away? 6. How many times I would be told I have “the good cancer” as an attempt to make me feel better. I can’t even count how many times this has been brought up. I’m lucky because I have the “good cancer.” I know it’s said with good intentions, but just so everyone is clear, there is no “good cancer.” No one is ever “lucky” to have cancer. Cancer sucks. All of it. Every kind. And minimizing this huge diagnosis by calling me lucky is insensitive, at the very least. I’m not lucky to have cancer, and while I have a good prognosis, my cancer is still a bad cancer. In the end, what I’m trying to say is that cancer is hard. And a lot of people know that, but they don’t truly understand it. They know that cancer means facing difficulties, but they don’t understand the impact of those difficulties or the medical trauma cancer imposes. They don’t know that it’s common to get a diagnosis of PTSD after having cancer because it really is that traumatic. They don’t realize that life still won’t be the same once I’m finished with chemo. Cancer isn’t an inconvenience you need to put up with for a year or two until you’re in remission. It’s debilitating. It changes everything. It’s something that when it affects you, it’ll leave you with that scar forever. No matter how much time passes, that diagnosis will always be a huge part of your history. And it’s time we start acknowledging that.

    Community Voices

    Hey folks I'm getting close to 2 yrs in remission last tests were great! But still go through periods of very low energy and my flesh particularly on my arms feels sore all the time .any thoughts appreciated.