F. Linda Cohen, from Baltimore, now lives in Franklin, Michigan. She attended UMBC and attained her Masters’ Degree from Oakland University, Rochester, Michigan. Linda, a retired reading specialist, with a specialty in dyslexia, published a book documenting her parents’ story in February, 2019. Cohen’s book, "Sarinka: A Sephardic Holocaust Journey From Yugoslavia to an Internment Camp in America," is currently in the libraries of the United States Holocaust Memorial Museum in Washington D.C. , Yad Vashem Holocaust Museum in Israel, the Zekelman Holocaust Memorial Center and other community and school libraries.

Cohen was diagnosed with small lymphocytic lymphoma in 2009. 

Linda Cohen

Linda Cohen is a survivor of small lymphocytic lymphoma and was diagnosed in 2009. Catch up on all of 

Every time I get dressed, I look at my legs and that determines what I wear. Will it be a long dress today or pants?

I am on cancer medication, probably for the rest of my life, that now dictates my wardrobe. When I began taking this particular BTK inhibitor in the form of a pill for small lymphocytic lymphoma, I read that one of the common side effects was bruising easily. “OK,” I figured, “how bad could that be?”

Well, let me tell you, it’s a pain. My entire left leg is discolored from bruising after taking it every 12 hours for two years.

I don’t think that my left leg looks like the normal bruising side effects of this medication. I’ve had the easy bruising, but that goes away. This is worse than that. It looks like a big, horrible stain and it’s now been two years. It doesn’t go away like normal bruises, and it seems to be slowly getting worse, spreading from above my ankle to under my knee. Did I mention that now it’s beginning on my right leg too?

Each month my pharmacist calls and asks if everything is still OK with the pills. Every month, I tell him the same thing. I’m fine, but my leg is awful. I find myself complaining about how it looks to whichever pharmacist calls me. I explain I can never wear a knee-length dress unless it’s cold enough to wear tights. I will never again be able to wear a normal bathing suit — I now wear long swim pants. And I feel sad listening to myself because it’s a constant reminder that I’m not really fine at all. It affects me psychologically. It is hard enough growing older, with chronic cancer, but to have to be so limited with my clothes choices is annoying and sounds downright silly when I hear myself express that. Yet, it’s a constant reminder of my cancer every day when I get dressed.

I’ve mentioned in other articles that I am the queen of reframing. I quickly say to the pharmacist, “It’s a small price to pay for feeling totally back to normal — full of energy to live a quality normal life.” I know that cerebrally. I remind myself of it all the time. Usually, it helps me deal with it, but sometimes, I find myself wishing to have my unstained legs back. I find myself angry with the fact that my legs determine my daily clothing choices, no matter what I have planned for the day. It’s hard to forget that I’m dealing with cancer for the rest of my life when I’m dealing with it one way or another on a daily basis.

BUTI’ve learned along the way that it’s OK to be honest with myself when I have these feelings. It’s healthy to feel and acknowledge these thoughts. Then, I push myself to reframe it. I can’t emphasize enough how much this helps me. I reframe how superficial it is to let my clothing limitations make me feel this way. I think about how I felt before this medication and how my life would have been for the past two years without it. I know this medication has given me the ability to live a full life and I have often referred to it as a miracle drug! So, I say to myself: 

You’re going to complain that you can’t show your bare legs anymore. Really?

Just like that, I remind myself that I have tremendous gratitude for many things in my life, especially this medicine.

And just like that, I’m back in a much better place.

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I’m very grateful for my SLL medication, but I never thought a side effect of the medication would affect my wardrobe for the rest of my life. 

Keeping Cancer Out of the Closet  

All my husband had to say was, “Harvey just flew to MD Anderson,” and that was enough of a trigger. My sensitivity is heightened any time I hear about someone with my exact diagnosis of small lymphocytic lymphoma. Harvey is also receiving the same cancer medication I am. Immediately, my heart began to race as anxious thoughts shot into my mind. I have been told that MD Anderson specializes in lymphoma. What could have happened? I just saw him and he looked fine. It must have been serious if he went there. I don’t know him well enough to ask him any of these questions.

I asked my husband, who is an acquaintance of Harvey’s, to text him to see how he was doing a few days after he arrived in Houston. “Not well,” he answered. “This could be it.”	Those words went to the pit of my stomach. I realized then that I had no idea what was going on with Harvey. He could have developed a new cancer for all I know. Suddenly, I tried to stop myself from going down this negative rabbit hole, but it was too late. I already projected what was going on with him onto myself. I knew I needed to get a grip and realize this wasn’t about me. I need to come back to my mantra. Think good, and it will be good. I knew I needed to take the focus off myself and pray for Harvey to be OK.

Then, I called my daughter, who with her clarity of the situation, also helped to stop me. She said, “Mom, you have no idea what caused this sudden change in his prognosis. He also may have seen some signs that he ignored for a while. He’s alone and no one was there with him as he was going through all of this. You’re very in tune with your body and checking things out when you sense something is off. Another ailment altogether could have been the culprit,” she suggested. “Just because it’s happening to him, doesn’t mean it’s going to happen to you. I can see the leap you’re making.”

My daughter was right and it was so helpful. I already had it happening to me. This is so detrimental because as we all know, as patients with cancer, we don’t need this kind of unnecessary stress. It’s difficult, but I know I need to work hard to try to keep in check why and what is triggering my negative thoughts when I have them. This is why it helps to share with 

 whom I know and trust. They just might save me a lot of time and anxiety by seeing my experience through a clearer and more objective lens and shake me back to my reality. I have enough issues without taking on new ones that aren’t real.

The bottom line, as I see it, is that I need to be vigilant when I have negative thoughts. I need to question where the fear and anxiety are coming from. Then, if I can pinpoint that, I can shed some of my unwarranted anxieties (I have enough that are warranted!) and I can be more useful to myself and everyone around me.

One thing that has changed since my cancer diagnosis is that I have worked on stopping the fear from rising sooner rather than later. I try to evaluate what’s making me so upset and scared. Then if it is something I can’t control, I try my best to reframe it. This strategy of trying to stop the stress that I brought on myself has helped me deal with other situations, as well. Here is the end of the story, without knowing any of the details: Harvey received the treatment he needs, and thankfully he is back and seems to be doing well.

A cancer patient's emotional journey highlights the psychological impact of hearing about another patient's similar diagnosis and treatment. The narrative explores the anxiety and fear triggered by such news, emphasizing the importance of managing negative thoughts and stress. The patient learns to focus on personal well-being and support others, aided by family and friends. The story underscores the significance of self-awareness and reframing stressors to maintain mental health. Ultimately, the patient finds relief in knowing the other individual received necessary treatment and is doing well.

When I am triggered by something related to the cancer I have, I start going down a negative rabbit hole but remind myself to be vigilant when this happens.  

When Faced With a Cancer-Related Trigger 

I am truly grateful for still being here 15 years after my diagnosis of small lymphocytic lymphoma. Luckily, a few years ago a BTK inhibitor was approved, which greatly improved my quality of life. I always try my best to reframe all that gets in my way, but sometimes I still find it very frustrating. That’s just the truth of the matter.

I recently got invited to a huge gala! I was so excited because it had been years since I got to dress up to go to a special event. Yes, there was a small outdoor wedding here and there, but not a gala! Honestly, I felt a little bit like Cinderella. I began to picture the incredible food at the strolling dinner and all the people I knew who would be there. I started to go through my closet in my mind. What would I wear?

Then, reality hit me. Now that I feel so well, I want to do everything! The event is indoors, and I was told there would be 700-800 people there! A super spreader, you say? With my cancer, I still have to be concerned about COVID-19. I go out of my way to make sure I am still careful because I have been told that COVID-19 can be very wicked with the particular blood cancer I have. Also, I know quite a few people who have COVID-19 right now, so that doesn’t help matters. I hate that I always have to decide whether to take a risk or not. I am the kind of person who is the last to leave a party. Even at 73, I am a party girl and always will be. I hate to miss events of any kind.

So now comes decision time. I dwell on the details of how I will make this happen. Can I go and minimize my risk of getting COVID-19? Do I know that I shouldn’t go? Of course, I know that. But my motto has always been, “If there’s a will there’s a way!”

I decided I could stroll through the food selections with my mask on and then take my plate and roam to a place away from everyone so that I could eat alone…much less risky. Am I having fun yet?

After the strolling dinner, there will be some speeches, etc. Did I mention this was a charitable gala event? I will wait until everyone is seated. When the speeches begin, I will look all around until I find the perfect seat. What makes the perfect seat, you ask? It has to be a seat with a few empty seats on both sides of me. But that’s not enough. I have to be sure there are a few empty rows in front of me and a few empty rows behind me. Of course, I will wear my mask again. I will sit and listen but I’m there! Even a charitable gala event can make me feel alive, but it won’t allow me to forget I have cancer…like some other articles I have written. They can’t all be upbeat!

Sometimes there is too much to orchestrate and think about to allow myself to go and still feel safe. I can’t live life always doing what cancer says. I have to do things that are important to me, but I can’t be foolish. Everyone else is totally over COVID-19. Cancer won’t allow me to do that.

So tonight, to celebrate my birthday, we went to a restaurant to have dinner on their outdoor patio. My husband and I bundled up, prepared to sit outside on this brisk autumn night which was 50 degrees and dropping. We were told the outdoor patio was closed because the wait staff weren’t prepared to serve there. I explained that I was immune compromised and couldn’t eat in the crowded restaurant. Then, I begged them to allow just the two of us to have my birthday dinner out there. Finally, the hostess said, “Let me check with our manager.” They said they would make an exception if they could find someone willing to serve us. They said we could wait outside. Then, Brandy, our sweet waitress, came outside with a big smile and told us she was happy to serve us there! She loved the cold! Brandy had no idea what that meant to me.

All I could say was, “If there’s a will, there’s a way.” You just have to persevere and sometimes think outside the box to make things happen.

Living with small lymphocytic lymphoma for 15 years, the author reflects on the challenges of balancing cancer management with the desire to participate in social events, especially during the COVID-19 pandemic. Despite the approval of a BTK inhibitor improving their quality of life, they must remain cautious about exposure to the virus. The narrative highlights the emotional struggle of making decisions about attending events, emphasizing the importance of perseverance and creative problem-solving to maintain a fulfilling life while managing health risks.

My quality of life has improved a lot after starting on a BTK inhibitor, but some things will never be the same — like being in crowded places without a mask! 

Sometimes, Cancer Just Gets in My Way 

Today, I virtually watched the funeral of my dearly loved aunt. It was a very difficult day because she wasn’t an aunt by blood, but since I had no extended family due to the Holocaust, she was the closest family I had outside of my parents and my sister.

Unfortunately, I knew the end might be near, but I couldn’t see her in person due to new health issues of my own and I couldn’t attend the funeral for the same reason. With my small lymphocytic lymphoma(SLL) comes restrictions at certain times. This was one of them. Of course, I know my health has to take precedence. These are the times, however, when having chronic cancer is difficult for me. I felt angry that I couldn’t be there to see her before she died. I felt resentful that I always have to work everything around my intravenous immunoglobulin (IVIG) treatments and my SLL as new health issues arise that need to be checked out — due to my history, as I am always told. I felt frustrated and agitated with my family and friends today because I knew no one could make me feel better. I didn't feel like talking to anyone. Thank goodness, I have all of you who take your precious time to read what I write.

This time, I needed to write this blog, to vent and complain, which is unlike me. This time, I need to focus on trying to reframe this because I am well aware that these negative feelings aren’t healthy for me. This time, I needed to remind myself how lucky I was to have her in my life, and I know she would have wanted me to take care of myself.

The forum of this blog is to uplift others, but it has to be honest too. You have to know that I always try my hardest to be optimistic and I try to raise the spirits of others. I now need to take some of my own advice. I have to remind myself that 15 years ago I thought I maybe had only 10 years to live. I was sure my sister and my aunt would be the ones attending my funeral. Now, they are both gone, and I must remind myself how lucky I am that I celebrated 15 years last month due to the advancement of modern medicine. My sister had a sudden stroke and heart attack at 72 years old. Nothing could have helped her. My aunt lived to be 86 years old, a child Holocaust survivor herself. I know that I was lucky to have both of them in my life and that no one lives forever. No one knows who will go first, that’s for sure.

Sometimes having cancer makes you look at life differently. Usually, it helps me to be accountable for living a meaningful life each and every day. We are all human, however, and there are times we need to allow ourselves to go deep enough to feel those feelings and know it’s OK.

There are times when I need this blog way more than it needs me. Thank you for being there for me this time.

May the memory of Sonya Setren always be for a blessing. 

After recently losing my aunt, I realized that cancer has given me a new perspective on life, which reminds me that every day has meaning.  

Linda Cohen

Keeping Cancer Out of the Closet

When Faced With a Cancer-Related Trigger

Sometimes, Cancer Just Gets in My Way

Cancer Makes Me Look at Life Differently

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