Figuring Out Life with Lymphoma

There are three main types of blood cancers: lymphoma, leukemia, and myeloma.1 Roughly half of the blood cancers diagnosed each year are lymphomas. Lymphoma is a type of blood cancer that attacks the lymphatic system—the lymph nodes in your neck, armpits, groin, and chest. A healthy lymphatic system removes excess fluids from these areas and produces immune cells called lymphocytes. In lymphoma, the lymphocytes develop abnormally, and over time, these cancerous lymphocytes prevent the immune system from working properly.1,2 There are two categories of lymphomas: Hodgkin lymphoma and non-Hodgkin lymphoma, with non-Hodgkin being the most prevalent of the two. In fact, only 12% of patients with lymphoma have Hodgkin lymphoma.2 Still, it is important to understand the difference between the two. Hodgkin versus non-Hodgkin lymphoma Both forms of lymphoma are relatively rare, and populations affected by the diseases vary. Though it can affect people of all ages, the average age of patients with non-Hodgkin lymphoma is 60. Hodgkin lymphoma most often occurs in younger patients between 15 and 24, or older patients over 60.3 Despite the fact that Hodgkin and non-Hodgkin lymphomas both affect the lymphatic system, there are quite a few differences between the two diseases. With the more-rare Hodgkin lymphoma, there is the presence of Reed-Sternberg cells—these are mature B cells that are unusually large, have become cancerous, and carry more than one nucleus, or core. Early symptoms of disease typically include the swollen lymph nodes in the upper area of the body, such as the neck, underarms, or chest. With non-Hodgkin lymphoma, the presence of both out-of-control B cells or T cells can occur in the lymph nodes throughout the body, as well as other organs. Symptoms can include swelling in lymph nodes in multiple areas of the body. There are more than 60 different types of non-Hodgkin lymphoma.3 B cells and T cells affect the immune system differently. Both cell types work by attacking invading organisms. However, B cells fight bacteria and viruses by producing antibodies which serve to destroy infected cells. Whereas T cells can both produce antibodies to attack infected cells and directly attack and kill infected cells.4 In both cases of lymphoma, the T and/or B cells develop abnormally and no longer serve as fighters for the immune system.2 Diagnosis also tends to differ between the two types of lymphoma. With Hodgkin lymphoma, progression occurs slowly, beginning with one group of lymph nodes before moving to the next. Therefore, it is often diagnosed before it reaches an advanced stage. With non-Hodgkin lymphoma, it is often more advanced at the time of detection.3 Symptoms Symptoms for both types of lymphoma are similar and can include:2 Swollen lymph nodes in the neck, armpits, or groin Fever Weakness and fatigue Weight loss Sweating Difficulty breathing and/or chest pain Itchy skin Rash Treatment Treatment for both Hodgkin and non-Hodgkin lymphomas varies, and can depend on several factors such as type of disease, how aggressive it is or the disease stage, the location of disease, and the age and health of the patient.3 Treatment options might include:2 Chemotherapy Chemotherapy and radiation directly targeting the lymphoma(s) Biological therapy, such as directing antibodies at lymphoma cells Stem cell transplant What are the prognoses for Hodgkin and non-Hodgkin lymphoma? Hodgkin lymphoma is one of the most successfully treated cancers. Ninety percent of patients survive over 5 years after diagnosis. Non-Hodgkin lymphoma has a lower rate of survival, but for certain types, recovery rates can be close to those of Hodgkin lymphoma patients. New treatment options continue to emerge, and the use of targeted immunotherapy shows promise.3 [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Learning you have cancer is just the first step, muddling through what follows is often a mind-blowing journey of uncertainty. By age 77, I had faced cancer twice before. At age 70, I was diagnosed with an aggressive but contained form of prostate cancer. Often called, “the good cancer men live with and die from something else” is not what you tell the families of the more than 30,000 men who die annually from prostate cancer (PCa) in the USA alone. Worldwide European Urology “projects” that over 740,000 men will die from prostate cancer by 2040. I guess it is not the good cancer we all hear about after all.1 The journey of uncertainty When you are diagnosed with prostate cancer you are asked what treatment you want versus suggesting what treatment may be best. For me, the journey of uncertainty began here. Given my cancer was aggressive, I chose surgery in the hope it would be stopped. It was not to be. Some 5 years later, it returned and thankfully, I was fortunate to have a second chance to kill it with 8 weeks of radiation. So far so good. Then out of the blue, in August of 2020, I was diagnosed with a form of blood cancer, specifically, stage II non-Hodgkin lymphoma. This time, no multiple treatment options were offered. The treatment in my specific case was 24 weeks of R-CHOP chemo infusions. While I had experienced surgery and radiation for prostate cancer, I had never experienced the uncertainty of chemo. I was clueless when it came to chemo and how the treatment worked. The first day was scary and thanks to the many internet articles I had consumed, the thoughts of undergoing chemotherapy were scary. When you do not understand something, it is easy to build up imagined fears. This time there were no options, I had only one way to treat the stage II lymphoma. Looking forward to the end of uncertainty While my reaction to the first treatment resulted in a week-long hospital stay (due to a prolonged zero white blood count plus some blockage complications) the remaining treatments were adjusted for my age and body mass. And along the way, I also got a lot smarter on the need to consume larger quantities of water. By infusion 4, I began to look forward to the end of follow-up appointments, lab workups and infusions. One thing that really took me back were the number of blood tests taken over the 24 weeks. I would often joke with my wife saying that they take a blood sample the minute I open the car door in the parking lot. As I neared the end of my chemo journey many well-meaning friends, church members, and relatives remarked constantly: ”Just a few more to go and you will be finished!” “Wow! You are almost done.” While all of those folks meant well, my previous cancer taught me a valuable lesson. Unless you have been there it is impossible for anyone to fully comprehend that cancer is not a “done and run deal.” Far from it, a cancer experience stays with you for life. Somewhere lurking in the back of your mind there is always the question, “Will it return?” Upon completion of chemo, my daughter-in-law was excited to have a family Zoom call to celebrate my end of treatment. As she is making the arrangements, I am silently asking myself is this over, or am I am in a race with an unknown outcome? I politely went along with the idea of the Zoom call and thankfully suppressed those unspoken words. During the family call I slowly realized my fears were just part of an evolving transition period which in time will once again allow me to look back and realize I had won another round with cancer. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],“Cwoh-wing.” That was how my son said “clothing” when he was very small. One Christmas before a large family gathering, when he was not quite four years old, we had a talk with him: When you open a gift, smile and say “Thank you,” even if it’s something you didn’t want. Even if it’s clothing. After opening a lot of gifts from very generous relatives who really enjoyed giving him shirts with fire trucks on them, but not actual toy fire trucks, he had enough. “Cwoh-wing!” he yelled. “Why does everybody keep giving me cwoh-wing?!” And so, “cwoh-wing” became one of those insider words that families have that no one else understands. For years, my wife and I have used it as a reminder to our kids (and to ourselves) to appreciate what you have, even if you had hoped for something else. A wish for Christmas As the year comes to a close, we’ve been thinking about the holidays, especially that first Christmas after I was diagnosed. I got the news in January, so by Christmas, we’d had a full year to get used to it. Because my follicular lymphoma was growing so slowly, I was able to watch and wait, and hold off on treatment until my symptoms became problematic. This was not how it was supposed to be. After my diagnosis, my wife (who is a planner) used what she had read online, and did some math. She imagined that I would receive chemotherapy immediately. My treatment would be over within a certain number of months. I would have a follow-up scan. Then by Christmas, we’d receive the best gift of all: a clean bill of health from the oncologist. Freedom from cancer. Of course, it didn’t work out that way. I watched-and-waited for a full two years before I needed treatment. Like the Grinch, my slow-growing lymphoma came and stole that gift from my wife. Her dreams of a cancer-free Christmas slumped like Charlie Brown’s sad tree. All during the holidays, my lingering diagnosis hung over our heads like poison mistletoe. (My gift for bad Christmas comparisons remained intact, however.) Looking for the good Now, I am not one to think of cancer as a “gift.” I know many people take comfort from looking at it that way. And I wouldn’t have to try too hard to find little “gifts” that cancer has given me. A better appreciation of my wife (the greatest gift of all). The importance of health insurance. Enough understanding of science to know why I should be extra careful during a pandemic. But that first Christmas, we didn’t necessarily see watching and waiting as a gift. Looking back, we see it differently. Watching and waiting is only recommended when the lymphoma is slow-growing enough to not cause problems. The idea is that, with an incurable cancer, it’s possible that a full life is ahead, but it might be a life of treatments, potentially getting more aggressive with time. Watching and waiting wasn’t putting off the future for two years. It was enjoying two years without treatment and its side effects. We can never really know how much we’ll like a gift until we get it. One patient’s cwoh-wing is another patient’s fire truck. At this time of year, during a year like the one we’ve had, it’s probably more important to remember than ever. Learn more about watchful waiting [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Fatigue. I know, it gets talked about all the time when cancer is the discussion topic du jour. I have even talked about it myself, more than once, but I think it’s time to bring it up again. Why? Well, because it’s reared its ugly head, once again, like a zit that just keeps appearing on the side of your nose even though you’ve used like, every lotion and wash known to man, but it still happens. You know, metaphorically speaking. The point is, here I am again not wanting to get out of bed until noon and it’s awful. So, why is this happening? That’s the 64-thousand-dollar question, isn’t it? Why? Granted I have a few other health issues underlying that might have contributed to fatigue showing up without an invite to the constant party that is my life, but I suppose that’s the entire point – I can never be sure exactly what’s causing it. Even hitting the snooze button didn't guarantee my waking up" Well, I may not know what’s causing the fatigue, but I know why. Making assumptions. Arrogance. The pride before the fall. Yes, folks, I dared to assume that the fatigue caused by my lymphoma was done and gone and would never see the likes of my little life again. I was getting up at a decent hour and going to bed at a less decent hour and still, I was able to function without much going on in the exhaustion department. At first, I was ecstatic that it was happening and cherished every minute. Soon, though, like most things, I began to take it for granted that I’d wake up only slightly fatigued or even, some days, dare I say it – not fatigued at all! Ohh, vanity thy name is Daniel. The hubris of it all! Fate was about to show me why it shouldn’t be messed with and reached out with a big ol’ kick in the karma. A few weeks back, I started waking up, like normal, and then hitting the snooze button, not like normal. I’m not really a snooze button guy as I don’t think that sleeping for extra time in 7-minute slices punctuated by the screeching sound of an alarm clock is particularly restful or beneficial. If I wanted to sleep later, I’d just set my alarm for later. Now, suddenly, here I am hitting the snooze button for 10, 20, 30 minutes sometimes, and here’s the worst part – even hitting the snooze button didn’t guarantee my waking up. It turns out that most days, I was so tired that I’d sleep right through my second alarm and wake up at 11:30 am instead. One minute I’d look at the clock and it would be 9:30 am, and then I’d close my eyes, just for five minutes mind you – and suddenly and without warning I’d open my eyes again and it would be almost 12 noon. Dammnit! I hate when I sleep so late that it starts to eat into the day. Why was I so fatigued? At first, I just thought I’d taken too many pain meds or too much sleeping medicine before bed, but I checked and I was still using the same dumptruck full that I’d always used, so that couldn’t be the reason. Then I thought, “well maybe it’s the weight-gainer shakes I’ve been drinking.” These shakes have a ton of carbs in order to get you up to the 800 calories per scoop that they provide. I tested this theory, though, and even on days I didn’t drink my shake it would still happen. The plot thickens. It was then I considered that maybe, after almost two years, the exhaustion with wanderlust that us cancer patients call fatigue had returned for another bite at the “me” apple. It turned out true, much to my dismay. I had tempted fate and lost. Battled the forces of destiny and was put down. Locked horns with father time and was cast out of the garden. Sorry to get all epic on you there but the point is, I had actually started to think that my days of fatigue were behind me and that’s exactly when it chose to come and remind me that I was still it’s prisoner. Fighting the fatigue - again What happens now? Well, I have to try my best to fight it, again. After the chemo for the lymphoma started, I was pretty exhausted and spent hours in bed. I can’t do that anymore because of two reasons: one, I have work to do, and two: I don’t really have active cancer anymore and I don’t think I can get away with spending all day in bed. If asked, “why are you in bed again today?” I can no longer say, “oh I have cancer” aka “leave me alone and get out of here.” The question is how do you fight something as insidious as fatigue? The battle this worthy foe there are a few things many of us do. The first is to use stimulants like caffeine and sugar to try to keep the energy levels up. Does it work? Not really, there’s a crash afterward, and drinking tons of coffee every day isn’t exactly great for your heart. Some of us try to get more sleep, and that’s a mixed bag at best. The real trick is to get better quality sleep which requires that you actually stay asleep for eight hours or so. In a row, that is, and for many of us who are up every few hours reading or playing a game or eating midnight pie, sleeping for hours in a row is impossible. The third thing we do is what many of us end up doing – we simply do our best to fight through it by any means possible. Does it work? Some days better than others but for the most part, no, not really. In fact, my eyelids are drooping right now so I guess it’s time to stand up and move around a little. Remember – fatigue is an insidious foe when you have cancer and you never know when it will darken your doorstep. Even years after. Talk soon. How do you manage fatigue? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] A part of the process of cancer care is the scan. Before my diagnosis with Hodgkin lymphoma, I had heard the terms before but was not aware of the differences between PET and CT scans. Most oncologists use a PET scan to determine the stage or whether a treatment has been successful. My first PET scan was used to assess my staging after I received my diagnosis. I had another PET scan after I finished chemotherapy to determine whether the treatment had worked. My most recent scan was a CT used to be sure there were no new or lingering signs of cancer. Impending scans can create anxiety. One wonders how badly has the cancer spread, did it come back, is there any left, and pray for remission. The words a patient longs to hear, no evidence of disease. The confusing world of imaging It can be confusing to understand the difference between a PET (positron emission test) and CT (computed tomography) scan. When I was having my recent CT scan, I wondered about why this was the scan of choice for my follow up. I learned that a PET scan works on a more cellular level. It is capable of detecting early-onset cancer even when it is not detectable by a CT. The PET uses nuclear medicine with radioactive tracers to generate a 3D image. Usually, the two are read side by side to give a comprehensive diagnostic picture. A PET lasts several hours, and a CT lasts only a few minutes but takes place about a half-hour after ingesting the oral contrast. Comparing my scan results When comparing my CT scan to my post-treatment PET scan, there was a marked difference in an area of what appeared to be scar tissue on the PET. Now I will return in three months instead of six to be sure whether it is a “radiation change” as suggested by my oncologist or something worse. Because the scan was before my radiation occurred, that may be the reason for the change noted. However, the alternative is that there is cancer growing. My fervent hope is that I am still in remission, and this just a routine scan, yet the anxiety builds as we near such scans. Scanxiety feels like a dark cloud looming A person is called a survivor from the moment of a cancer diagnosis. At that moment in time, they become a living person with cancer, a survivor. Survivorship can mean something different when a person has received the coveted clear scan with no evidence of disease. Survivorship after remission feels like a battle won yet the blood tests and scans can feel like a dark cloud looming. There is this constant quiet fear and building anxiety as the next scan approaches. Focusing on surviving and thriving I am choosing to focus on not just surviving but thriving. I want to be positive and grateful for my health. Even though I can get distracted by the what-ifs and worries, I will consciously live in this moment. Being informed about what each scan means and understanding what my life will be from this point forward allows me to feel some control in an often uncontrollable world. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"], Last week was a huge milestone for me personally; I was declared ‘cured’ from my lymphoma, after 3 years of treatments and ultimately, the successful treatment in a clinical trial for CAR T-cell therapy. Among the many congratulations and messages of support, which were wonderful, was a constant refrain: “You must feel so happy.” If only human emotions were that simple. The reality is, emotions are a complex mix of sometimes opposing feelings. Yes, I feel happy. I also feel relieved. However, I also feel intensely sad. There isn’t a single word for all that emotion and it’s hard to describe, but I’ll try. Survivor guilt? Or something else? The surprising bit for some will be that I feel sad, so let me explain. Much has been written of the so-called ‘survivor guilt’, the idea that people who survive a terrible tragedy when others don’t have a sense of guilt that they got lucky, that they were spared. I’m not sure about guilt, but I do have a similar feeling. The sadness of realizing that so many others didn’t get the same results. That so many other families didn’t get to celebrate this outcome and are saddened when they see results from people like me. Perhaps they find it hard to understand why I was spared when their loved one wasn’t. Perhaps they feel bad about that feeling, and perhaps it stirs up a complex set of emotions in them also. Remembering the others in the race I imagine a running race, where my friends and I all set out together, and only I finished. I’m happy I did, but I also would rather be in a large excited group celebrating together, than being alone, looking back to see the others who had to pull out early. Since I was diagnosed and started my treatment, I’ve personally met more than ten people who were on the same journey as me, but who ultimately didn’t get to the finish line. In a piece of cosmic symmetry, at precisely the same time I was meeting the doctor in Boston to receive my ‘all clear’, there was a family of a child I knew who were attending her funeral 10,000 miles away in my home country of New Zealand. Her mother had asked everyone attending to wear glitter, as her daughter would have loved. When I checked in to the hospital, I noticed that the nurse had colored dots and stones on her ID card. When I asked her why, she said it was her ‘glitter’. That little girl was watching out for me. Making sense after cancer The sadness I feel is acute (I’m crying as I write this), and yet at the same time, I know that I now have a responsibility – to live a good life, to be a good person, to help others where I can. Similarly, it doesn’t help to wallow in the sadness, but instead to allow it to be part of this great set of emotions which includes happiness, relief, and gratitude. To survive cancer you need mental toughness, and that doesn’t finish on the day the doctor says the treatment was successful. It’s required every day after as well. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

Figuring Out Life with Lymphoma

What’s the Difference Between Hodgkin and Non-Hodgkin Lymphoma?

The Journey of Uncertainty

The Gift of Watchful Waiting

Fatigue, Again? I Thought I Was Done With This

Scanxiety Doesn't End at No Evidence of Disease

Community Poll

Survivor Sadness

Chemo Hair Can Be a Touchy Subject

Time for a New Cancer Paradigm

Spring Is Coming

Rituals, Pancakes, and the Ride

Finding the Right Healthcare Team