About Me

My name is Lynn. I am originally from Brooklyn, New York, and I moved upstate to Central New York in the year 2000. 

I am a retired R.N. with experience in the operating room and oncology. I was the very first oncology nurse navigator in my cancer center. And I love to photograph flowers.

I have a daughter who works in healthcare as well, with a school for at-risk children. She has diabetes and is in control of her own health. She’s on an insulin pump and has a continuous glucose monitor. She’s upfront with me about health issues, and we discuss them all the time.

My significant other, Bob, has his own son, who lives in Vermont, and his granddaughter just turned 13. I have a grandson who just turned 34 and who does not have diabetes. He’s very healthy and lives independently.

Do we get to spend as much time with them as we like? No. Driving is a big issue for us now that we’re older. But we do speak with them a lot. It’s good to stay in touch and yet maintain a level of independence. We don’t hover over our kids.

My CLL Diagnosis and Treatment Timeline

I started with watch and wait, and ultimately progressed to the point where my lymph nodes were all getting large and I needed treatment.

My treatment was a little complex. I started treatment, I believe, in 2015 or late in 2016, when I had one round of IV chemo, which put me in the hospital.

Luckily, the oncologist said at the last American Society of Hematology (ASH) conference that they were no longer treating people over 65 with traditional cytotoxic chemotherapy. Another drug had just been approved, and he put me on that. But that was also interrupted because when I was in the hospital, they found a very small lung cancer, and I had to stop for surgery. So I had almost a year’s delay. 

I have been on continuous therapy since 2018 with that new drug, and I’ve never been off it.

My Support System: Family, Friends, and Finances

I have a significant other, Bob, who’s extremely supportive. Because I can no longer drive, he takes me to all my many appointments. 

I just saw my oncologist as well, so he has been very supportive. 

My very best friends, one was the oncology pharmacist and my other is also an R.N., are both very, very supportive. 

Thankfully, I do not need financial support. There are grants available for the medication.

I Advocate for Drug Cost and Insurance Coverage

I had the opportunity to speak before Congress at one point to Speaker Nancy Pelosi. I testified that my BTK inhibitor at that time was about maybe $12,000 a year. It’s now $17,000 a year. And who could afford it? Nobody, not even a retired R.N. 

Medicare, fortunately, had the provision in it to hit an out-of-pocket max this past year of $2,000. This upcoming year, it’s $2,100. Being a nurse navigator, I was fortunate enough to navigate myself into a grant with the Patient Access Network Foundation. A lot of people go through the Leukemia and Lymphoma Society, which has now changed its name to Blood Cancer United. They are also very generous with grants. 

Because I’ve been on a grant for these years, it’s almost automatically renewed, so I don’t have to worry about that yet.

I’m Seeing Cancer in Younger People

I’m seeing more young people with colon, breast, and pancreatic cancer. I have friends who have been nurses and worked at cancer centers and have ultimately gotten some type of cancer. Thankfully, we know what to do. We don’t freak out about it as much as some individuals. 

I belong to a CLL support group on Facebook, and some people who are diagnosed in their 30s are often very freaked out to think that they could be on medication for the rest of their lives. I compare this with insulin-dependent type 1 diabetes. My daughter has type 1 diabetes. She’s had it since she was 12. She’s 55, thank God, and she is very well controlled. She can’t live without that medication, just as I can’t live without mine. It’s better to take medication for the rest of your life than to succumb to something that is perfectly treatable in this day and age. 

Doctors are promising other combinations for five or even more years of remission from CLL, but that wouldn’t be good enough for me. Remission for life is the ultimate goal.

The Side Effects of BTK Inhibitor Therapy That I Experienced

I’ve had the usual bruising and bleeding that comes with BTK inhibitors. When I was initially taught, I was told, “Don’t use a razor. Be careful in the kitchen with knives.” I’m old, and the skin on my hands is very thin, so I easily cut myself. I have Band-Aids all over. My hands are very bruised.

I’m grateful now for the winter because I can wear long sleeves. People don’t say, “Are you on a blood thinner?” and I go, “Yes, I am.” It’s quite consistent with being on a blood thinner, like when I was taking Plavix after a cardiac event. So, I bruise very easily. I bump into things. I wake up, and I have black and blue marks, but my platelets are good. I always check them.

My Family History, Other Conditions, and Vaccinations

I have a small family, and I made sure I told my cousins about my situation. My sister has a different hematologic disorder. It’s TTP, thrombotic thrombocytopenic purpura. She had zero platelets, so that was very, very serious. I’m grateful I don’t have that. 

Diabetes and cardiac issues do run in our family. So we’re very upfront with each other as to health and maintaining our health, trying to eat a healthy lifestyle. 

No diet can reduce my risk of CLL or make it go away. Some people in our support group say, “Oh, I can’t eat blue cheese,” and I say, “Well, blue cheese is made with bacteria, so maybe there’s a reason. I don’t know. I’m sure you could eat a little bit of blue cheese.” 

Some people are worried about yogurt with lactobacillus. I know that we cannot get any live vaccines like measles. Of course, I’m immune; I had it as a child. 

I’m very proactive, and I am pro-vaccination. I know that we’re under-responsive in terms of vaccinations. Because we’re immunocompromised, we don’t get 100% coverage. I’ve had Covid three times. I just got my COVID-19 booster. I got RSV. I’ve had shingles. I’ve just had the flu, so I get them all.

Why It’s Important to Be Informed and Empowered as a Patient

I think with education and information, you can make a difference in the world. You can make a difference to others. You can certainly make a difference to yourself.

I truly believe that there’s a reason why we cross paths with the people that we meet in life. What that reason is, I don’t know. But, for example, you might need help getting insurance one day, and you might say, “Hey, I remember Lynn. She has a lot of experience with insurance.” 

As long as you’re an educated consumer, I think you have the best chance of surviving in today’s world with so much foolishness and mismanagement of health sciences and medicine. I think it’s very important to be well-informed about vaccinations, about medications, about contraception, about other issues, like political issues, which I won’t get into. It’s a tough world that we are all living in now. 

Once you have support from even one person, they can make all the difference in the world. Kindness goes very far.

Resources I Trust and My Final Thoughts

Go to the best sources available. When I’m doing a search online, I’m always looking for information from Cleveland Clinic or Mayo Clinic. For CLL, CLL Society has the most up-to-date information, as well as the National Comprehensive Cancer Network (NCCN) guidelines for patients. They have the latest and the best up-to-date information, what’s new and what’s fascinating. We like to share all that information in our group. 

I am grateful to be helpful to the group. Some people don’t like me being so forward, I guess. I’m from Brooklyn. You can leave Brooklyn, but you can’t take Brooklyn out of me. New York City is a tough place to grow up in, and I am street smart, and I’m quite smart as well.