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 

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.

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Articles

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.  

Cancer Makes Me Look at Life Differently 

There have been many ups and downs over the past 15 years of living with small lymphocytic lymphoma (SLL). First, I had to learn about it because on first hearing this diagnosis, I was somewhat paralyzed. Knowledge is power. I tried to ask many questions of the doctors and I read reliable sources to try to understand what my new normal would look like. I dealt with infusion treatments, radiation and Mohs surgeries (procedure to remove visible skin lesions) during this time. Now I take a BTK inhibitor called Calquence (acalabrutinib) every 12 hours, which has allowed me to live a quality life.

Last month, I celebrated 15 years of survival with my chronic lymphoma. I paused to reflect on what I have learned during this time.

: Understanding my diagnosis and treatment options was crucial. Educating myself through reliable sources and asking questions helped me feel more in control and prepared me for the future.

Maintain a positive mental attitude (PMA)

: Finding a supportive and positive doctor who aligned with my outlook was vital. Visualizing a future where I lived alongside my cancer fostered resilience and hope.

: Although I was told that diet didn't cause my SLL, adopting a healthier diet and exercising regularly became even more important. Walking in nature, reducing my sugar intake and increasing my fruit and vegetable consumption helped me maintain my health and weight.

: Getting enough restful sleep was essential for my overall well-being. I adjusted my night owl habits to ensure that I got at least seven hours of sleep each night, which helped me manage stress and also helped maintain my health.

: Regular visits to my oncologist, primary care physician, dermatologist and other specialists were essential. Being vigilant about other potential health risks, like skin cancer, was crucial since my Mohs surgeon told me it comes with the territory of chronic lymphocytic leukemia/SLL.

: Integrating practices like prayer, and the mindfulness of my worries and concerns for about 15 minutes into my daily morning routine helped clear my head which gave me a more positive outlook the rest of the day.

: Allocating that specific morning time allowed me to manage anxiety without letting it dominate my life.

: Maintaining an organized record of all medical treatments, tests, surgeries and medications helped me stay informed and prepared for all medical consultations.

: Accepting the love and support from family and friends became essential. It strengthened my relationships and provided emotional comfort the emotional support I needed.

: Engaging in community work or finding a passion outside of my illness provided me a sense of purpose and helped shift focus away from my cancer. It also contributed positively to my mental well-being.

I hope the lessons I learned will help inspire others who are just beginning their journey… and quite a journey it is!

Living with chronic small lymphocytic lymphoma for the past 15 years has taught me some very valuable lessons, from dieting to managing anxiety. 

10 Lessons I Learned from 15 Years With Chronic SLL

When I first received my lymphoma cancer diagnosis, my world fell apart. As a mom of three daughters, all I could think of was the future. I needed time to digest it all, but then I had to pull myself together and think positive. I had to let others help me through this.

Friends asked me, “How can I help?” I realized that if I gave them a concrete answer, it benefited both of us.

Sending a meal or just soup and bread after treatment was helpful. With a comforting meal, I could feel the love that went into it, and I found that people were happy that I gave them a way to help me. When a friend dropped off a homemade cake, I could also feel the love and support they were giving me. They felt like they were doing something positive for me — and they were.

I told them there were times I might need a ride to or from treatment because I felt too drugged to drive home myself. This was an easy way for someone to know they were helping me. I also appreciated when they offered to drive my children somewhere they needed to go and loved when they offered to take them somewhere fun.

Staying connected to me and emailing or texting, “Thinking about you” with a short message encouraged me. I explicitly let my friends know I would welcome hearing from them. I said, “Please don’t be afraid to contact me. I’ll want to hear from you.”

I appreciated small surprises like unscented lotion and the offer to massage my arms and hands or legs. My daughter gave me a journal to help me express all I was feeling. It was inspirational because it was a 10-year journal with a short space for each year. It helped me write something positive or something I accomplished each day in just a few sentences, with hopes of completing the journal.

I also enjoyed it when I got a call offering to take a walk with me if I was up to it. Especially during my treatment, I tried to push myself to walk. Sometimes, I too, initiated the call.

I appreciated short visits and encouraged those who asked, but emphasized to please call me first to make sure I was up for a visit. I loved when they listened so I could express my fears and when they motivated me whether it was to eat, move or do whatever I needed to do to help myself heal. But I also loved some normal conversations that didn’t focus on my cancer — news about friends and their children or meaningful things they were doing, etc.

But, most of all, I loved when people told me they would pray for me. I thanked them and always told them how much it meant to me. However, they showed their love and support, it helped to put me on a healing path, which is where I needed my focus to be. Whether they cheered me up in some way, or said prayers for me, they helped with my No. 1 job at the time: to heal and get back to living life. I will always remember all these things, big and small that helped me through my initial diagnosis when I was the most vulnerable. Thank God for the love and support of my family and friends.

It was beneficial for both myself and my loved ones when I gave a concrete answer to the question of “how can I help?” 

Linda Cohen

Sometimes, Cancer Just Gets in My Way

Cancer Makes Me Look at Life Differently

10 Lessons I Learned from 15 Years With Chronic SLL

How Friends and Family Helped After My Cancer Diagnosis

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