Julie is an ovarian cancer survivor who was diagnosed in January 2013. She has worn both sets of shoes, as she was also a caregiver of her husband who passed away from prostate cancer. Julie was a teacher and principal in her career and retired in 2015. Since then, she has been active with walking, biking and water aerobics. Julie also likes to be creative with cooking, beach glassing crafts and writing poems. She has remarried and now her husband supports her with his healing love. Julie’s combined family consists of five adult children and spouses along with 10 grandchildren. She feels blessed beyond measure to be able to spend time with her family.

Julie S. Brokaw

I am anxious today. For what, I am not sure. For me, writing things down helps with the anxiousness so I thought I would share some information about one of my recent treatments. I was diagnosed in 2013. Three surgeries and chemotherapies later, this past October, my scan showed more lymph nodes inflamed with my ovarian cancer.

I am truly blessed to have a gifted oncologist and I also have one of the best hospitals within an hour of my home, so the Cleveland Clinic was my destination as I searched for my next plan of attack. Stereotactic Body Radiation Therapy (SBRT) was the ticket. I felt such confidence with my physician and his team as we tackled the two areas of inflamed lymph nodes. The unknown is so scary. So, I thought in this article I would address in layman’s terms and my own perspective of what I went through to get this therapy. Note, the physicians who read this may correct my words. This is what I feel I went through.

The first thing that had to happen was a clear PET scan to pinpoint the exact location of the lymph nodes. They happened to be underneath my aorta and next to my esophagus, which are not good places to be. Then, I was mapped. Mapping is the gathering of information via computers to see where these SBRT beams would be directed. With SBRT, a beam is pointed directly to, in my case, the lymph node, and the radiation penetrates that lymph node only. It did not do a large area.

Once they have the area pinpointed, there must be a constant and same beam placement. So, to do this, I lay on an air bed that was blown up and fit to my body. For a better understanding, it was like I had my personal fitted bean bag bed. The bed was formed to my body so that every time I came for a treatment, my personal bed was pulled out and I lay in it the same way each treatment. Lots of Sharpie markers were used to draw marks on my body to line everything up.

The next measurement, which also had to be a constant, was how my body would stay still and lie the same during the treatment. To do this, a contraption that was like a snorkel was placed in my mouth with my nose closed with plugs. The snorkel allowed free breathing just like I was underwater. The first thing that they measured was how much air it took to fill my lungs. We assessed this several times to get the average amount of air I was breathing in to fill my chest. Then I was told to hold my breath. The air from the snorkel tube was stopped so I could do this. What this part of the mapping did was create a constant of what my lungs would hold, and my body would stay still for the eventual treatment. I practiced this several times. The procedure has you hold your breath for 20 seconds, so it is extremely important that you do not move your body during this time. Once this was calculated, I was ready to be “mapped.”

Again, the Sharpies came out and they marked the areas where the beam would be pinpointing the lymph nodes. Then came the ink! I am not a person who would choose to get a tattoo, but I have them now. The measurements were marked with an ink color to be used with the SBRT machine. They were small dots on my skin – no fun tattoos! I am sure that I have left out some parts of this procedure, but I hope you have the gist of what I went through to get mapped.

Now for the treatment: I was scheduled for three visits, a Tuesday, Thursday and Friday of one week in November. When I came for my appointment, the radiation staff called me back to the radiation room. I was told to not wear jewelry and to come in comfortable clothes. I wore a gown on my top. They pulled out my personal body form and I lay down in it as they lined me up on the sides with my tattoos. The machine was also lined up with tattoos on my chest and belly. They attached the snorkel, and we practiced a few times breathing into the apparatus. Then it was go time. I would take a deep breath and hold for 20 seconds. The staff counted down the time and that helped. I remained very still. During the 20 seconds, the SBRT machine and radiation basically zapped the specific areas. I had to do this about 10 times, and I was done. I felt nothing during the procedure. The time in the room was less than 45 minutes. I went home and that was it. I was done on that Friday.

Now for the wait. Radiation takes some time to work, so I was scheduled for a physician visit six weeks after and then another PET scan 12 weeks after. I really did not feel any side effects from this procedure. My results were excellent as the lymph nodes that received the radiation were obliterated, my word. However, in my case, a few more lymph nodes in different areas of my body decided to make an appearance. So, in March, I was back up in Cleveland again for the new nodes. They did the same procedure on one lymph node and decided to do a larger area on the other group of nodes. For the larger group, I received area radiation. I did experience radiation burns that were very extensive. Since the cancer was making a comeback, more chemotherapy was ordered to complete this treatment. I just finished round three last week of six total.

This is my own personal experience, and because ovarian cancer is different with everyone, I wanted to share my story. I remain positive as for me, typically, I finish with chemo and then my numbers are pretty great for several years. My oncologist and I are treating this as a chronic disease. We take care of the problems as they come and hopefully have a bit of a reprieve. My numbers are going down so something is working.

I apologize for any inaccuracies or omissions. I am a survivor. You will hear from me again.

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Articles

An ovarian cancer survivor shares her experience receiving a radiation treatment on her lymph nodes.

Stereotactic Body Radiation Therapy May Be the 'Ticket' For Inflamed Lymph Nodes

I have recently found that writing about my story has helped me find a new outlet for my creativity as I deal with my ovarian cancer.

I was diagnosed in 2013 and have had three major surgeries and three aggressive rounds of chemotherapy, one time losing my hair. I had some new lymph nodes show disease in October 2020 and had radiation for those spots. More nodes were discovered in February and I recently began receiving radiation once again. Chemo will follow and I will once again lose my hair.

From the start of this disease, I have wanted to give back. The question was how to accomplish this. I thought of journaling to share my story to help someone else. I did not do this, which is something I regret. However, the memories of each treatment, surgery, medicine, patch, as well as doctor appointments, nurses administering chemo, pharmacy techs getting meds for home, and all the other support staff involved in my treatments, are as if they happened yesterday and are still fresh in my mind. All these wonderful people have given their best to me and for that, they all deserve the best from me. How could I do that?

For me, being creative has been a hidden talent that I really did not use enough in my life. I was a teacher and then principal. I made thousands of bulletin boards and created worksheets, poems, games, and projects for learning. I have created schedules, handbooks, and devised all types of plans for a school building. Discipline plans for a student’s success was a great way to be creative and not be punitive. And then I retired.

Since then, I have found that working in my yard and creating gardening beds of beautiful flowers have been very cathartic. Painting the inside of my house with new color schemes and redecorating each room have been a fun way to make changes in the decor. The point of this is that I have kept remarkably busy, thinking about the future, not my disease.

I must admit, there were days of therapy that to dig in a flower bed was limited to a few minutes as I was exhausted. But these few moments made the bed look better. This was an accomplishment, small as it may have been. One day, I was mowing the lawn and decided to sit in the driveway to rest (chemo was kicking my behind). I laid down in the driveway for a few minutes to take in the glorious sun and a car drove by. She turned around in the next drive and came back to check on me to see if I was OK. She was a nurse. I thanked her and realized laying down in the driveway was probably not a good idea. Next time I want to feel the sun’s rays, I will sit in a chair! The point is that I was mowing the lawn doing something.

I have found another creative outlet as well. A dear friend introduced me to beach glassing. I love to collect beach glass from Lake Erie. Being outside listening to the waves and digging in the small stones looking for clear, white, amber, green, and turquoise bits of glass as well as those very precious blue and red glass is life-giving to me. Glass is not all that we find. Lucky stones, tile, driftwood, and heart rocks add to my collections.

I started to create beach glass artwork for family and friends. They have received them for Christmas and thank you gifts. I have also given my artwork to my medical team as a thank you. I finally feel that I am giving back to those who have given me so much. I am giving back to my incredible group of people who keep me going.

Creativity comes in all forms. You can read and become part of a book club. You can grow flowers and enjoy them on your table. Homegrown tomatoes taste so good from your own garden. Write a note to a friend to tell them you are thinking of them. With the pandemic, those notes can be life-giving. Write a poem, bake cookies, read a book to learn something new, take a class at your local YMCA.

The whole point is the verb! Be creative! Do something! Do something that will make a difference in your life. Find a creative outlet and use your energy for a positive way. It surely will do something for you and maybe benefit someone else.

Being creative has helped this ovarian cancer survivor during her journey. She recommends that people use their energy in a positive way and do something that will make a difference in their lives.

Using Creativity to Make a Difference in Your Life

It is time to tell my story. It will not be in the order of my life events, as today I want to write down the feelings that I have going on this moment.

I am sad, frustrated, even mad and yet, I am resolved to once again, step up to the plate and give it my best to get well. I do not want this piece to be a negative read yet these feelings are what we as cancer survivors deal with daily.

I was originally diagnosed with ovarian cancer in January 2013. Since then, I have had three major surgeries and received chemotherapy after each surgery. I lost my hair after the first round.

In October 2020, several months into the COVID-19 pandemic, I had a recurrence in my lymph nodes. No surgery this time as we tried stereotactic body radiation therapy (SBRT) in November. Recently, I had my follow-up PET scan to see how well the radiation worked. It worked! But it showed three more new spots.

So, what am I feeling? I remain positive because I feel I have the best care in the world. I have physicians and support staff who know my name and have vowed to take great care of me. We are trying to come up with a plan to contain the spread and now we are just waiting.

I also feel a bit frustrated that it once again has reared its ugly head. I am trying my best, and succeeding, to acknowledge that this bump in the road will be taken care of with great medicine and care from my support people.

I am sure that many patients with cancer at some time question, “Why me?” I also fit into that category. The answer: No one knows.

My mother had a rare kind of cancer back in the 80’s. The physicians called it fallopian tube cancer and that her case was so rare because it was caught early, that she made a medical journal. Her prognosis was not known because doctors had not ever caught it that early. After one round of horrible chemotherapy (9 months), she never had a recurrence of the cancer. My gynecologist was made aware of her diagnosis every year that I saw her and after about 20 years, the research confirmed that my mother probably had ovarian cancer. She was lucky it was found so early.

My situation was different as mine was found with tumors in my abdomen. My surgery removed everything, and I was told it was stage 1. Yes, I lost my hair, had to take time from my new job, and I survived until 1.5 years later, another tumor showed up and I was having surgery once again. I took a year off from work and then retired.

In November 2017, it came back again. Now it was showing up in my lymphatic system. Good news: The lymph nodes were doing their job! Bad news: The location of the nodes made my surgery difficult – 9 hours long, but I was clean once again. The waiting was difficult as the cancer was detected in November and surgery was not scheduled until February. It spread to two more lymph nodes in that time.

This brings me to what I am feeling today. It is the waiting that is hard. Waiting for the test, the results, the discussion of the plan, the insurance delays. When you get a cancer diagnosis, you do not want to wait for anything. You want to get on living and living your best life.

What am I feeling today? I am feeling blessed. I have a wonderful husband who has been with me on this journey the whole way. I have a fantastic family who have traveled from far distances to be with their mom. I have dear friends who have walked next to me at all my doctor’s appointments, brought food and books, grabbed me to go to dinner, have joined me in a glass of wine. I am blessed.

Cancer is not fun. I buried my husband who died from prostate cancer. I moved on and found a wonderful man who has been by my side. I have the best girlfriends who are there for me. I have excellent physicians, nurses, and pharmacy staff that I have on speed dial!

It is important to say that cancer survivors and patients have down days, but we can also have good ones. Putting my words on paper has helped. I want to give back. Maybe someone will read my story and want to know more. I am thinking about a blog and will pursue that in the future.

As I pull up my bootstraps one more time, I celebrate the life that I am blessed to have with support from the people on this journey that is life-giving. There is hope every day. I am living proof of it.

For more news on cancer updates, research and education, don’t forget to

An ovarian cancer survivor shares that although she’s been frustrated and mad about a recent recurrence in her lymph nodes, she still celebrates the life that she’s been blessed with.

Julie S. Brokaw

Stereotactic Body Radiation Therapy May Be the 'Ticket' For Inflamed Lymph Nodes

Using Creativity to Make a Difference in Your Life

While Cancer is Not Fun, There is Hope Every Day

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