cancer treatment

My Whole New World in the New Year

On December 30, 2020, my life did a loop-di-loop on the magic carpet of life. I was diagnosed with stage IIB cervical cancer. This diagnosis was quite honestly shocking as I happen to be one of those people who never put off a screening of any kind, even during COVID! What led to the diagnosis?

I had only one sign. I started bleeding, which I attributed to heavy lifting and moving furniture while decorating my house for Christmas. I made an appointment with my gynecologist for the very next day and I had an internal sonogram which showed a mass of some kind. She told me to be on the safe side we would set up an MRI which I went home to schedule during my Christmas vacation.

I scheduled the MRI for very early in the day so that I could also go for a mani/pedi and visit my daughter’s new home. As I sat in the pedi chair waiting to have my nails done, my phone rang. It was the gynecologist, which surprised me, but I figured it was the day before a holiday and she wanted to talk to me before the long weekend.

She definitely surprised me when she asked if I was somewhere private I could talk. I went out to my car in pedicure flip flops in the dead of winter to hear her tell me, “It is cancer.” I did not panic. My oldest daughter had had cervical cancer five years prior to this and it was thankfully caught early and was treated. I listened to my doctor tell me to take notes, and the first thing I grabbed was an envelope from a Christmas card, and I furiously wrote notes of oncologists’ names, words like ‘dysplasia’, ‘6 cm’, radiation, and chemo. I made the split second decision to go to the oncologist my daughter had been treated by and my gynecologist told me to stay put while she called him. She called me back to tell me he would meet me on a Zoom call so I quickly ran home for this meeting. Now this oncologist is pretty well known in the area for gynecological cancers and I knew him already so I felt comfortable until we started the meeting and he stoically uttered the words, “THIS IS VERY DIFFERENT THAN YOUR DAUGHTER!”

Phyllis with her daughters

In a matter of minutes on the second to the last day of the year, I had scheduled all my appointments with oncology, hematology and radiology. My biopsy and D&C were scheduled for a week later until my world again turned upside down.

My oncologist told me I had a rare, aggressive tumor and they wanted to switch my treatment plan to try and shrink the tumor in preparation for surgery. Of course it would be me with the rare tumor that only accounts for 5% of cervical cancer diagnoses. I know, I’m an overachiever!

I was set up to begin a Taxol/Carboplatin protocol and with cold-capping to save my hair. I went through the nine weeks like a trooper and was so happy as I suffered only minimal side effects. I was able to continue teaching (remotely because of COVID) and I stayed positive and ready for my battle. But it was short lived.

The tumor indeed shrunk, but not enough so back to the drawing board of the traditional treatment plan. I went through six rounds of Cisplatin (ironically I did lose my hair but I was advised not to cold cap this time) concurrent with radiation and Brachytherapy. Again, the tumor shrunk, but not enough which leads me to my current status — LIVING WITH CANCER. This in itself is a difficult thing to wrap ones’ head around.

Phyllis sporting a cold cap during chemotherapy treatment

In September, I began a course of Topotecan and Cisplatin. Since this would be administered for three consecutive days every 21 days, I decided to take a leave from work and the doctor highly advised it! I am so glad I am off! The side effects are not fun! I have seven days of intense pain and constipation but I am trying to deal with it by wearing a smile and a big win for me was that my latest CT scan revealed a lot of shrinkage!

My biggest lesson learned: YOU CANNOT PLAN WITH CANCER! Things are not what they seem and plans constantly change. All I know in this journey is that it’s important to go with the flow and STAY HAPPY!

Phyllis Adams is part of our Cervivor community and a proud Jersey girl. She is an active member of our Facebook groups Survivor Slimdown and I’m A Cervivor!. Thank you for sharing your story, Phyllis!

Losing Your Uterus, Losing Your Mind: Scientific Validation for Memory Loss After Cancer

When Samantha R. stumbled across a study suggesting that hysterectomies may cause memory problems, she clicked, read, and shared on our I’m A Cervivor Facebook group, kickstarting a dynamic discussion. Samantha shares her experience, her relief in finding the article, and the community of support that her post generated:

“Chemo brain gets a lot of discussion and attention, but not the topic of woman who had a hysterectomy or who have early onset menopause and who have similar fogginess. I actually did not have a hysterectomy but rather chemo-rad-brachy (stage 2b), which was oh so fun.  As radiation and chemo essentially killed my uterus and ovaries, this study about hysterectomies and memory loss caught my eye and resonated.

A wildlife ecologist, Samantha was diagnosed with cervical cancer at age 36 while in the midst of her postdoctoral research. The stress of the diagnosis and treatment on top of research and academics were brutal.

“After cancer, I couldn’t handle stress like I used to. I used to be able to do the cramming and the crunch time. But after treatment, I had really bad ‘chemo brain’ for at least a year until it finally started getting better. I still don’t feel as sharp as I was before, even though it’s been eight years since my diagnosis. As an academic with a master’s degree and a PhD, this had been really hard for me because my work, at the end of the day, depended on my brain. And of course brain fog doesn’t just impact work, but so many parts of life. My recall is slower. My short-term memory is slower. Things take me longer. It’s been hard for me to accept that my brain now functions differently. I used to be quick and make witty remarks. Now three days later, I come up with a response!”

Samantha was poking around online when she stumbled upon the article, New research suggests hysterectomies may cause memory problems.

“It’s about a first of its kind study conducted in rats (not humans), but the implications that our uterus plays a role in memory is just really interesting. I found it worth sharing because having an explanation gives women like us validation for having memory loss. It is nice to have some scientific acknowledgement of what we are going through.”

Newly published research has challenged a long-standing belief in the medical community that uteruses serve no purpose in the body except pregnancy. When researchers at Arizona State University performed hysterectomies on rats, the animals’ memory suffered.

Samantha’s Solutions: Coping Skills and Lessons Learned

Samantha now works for the federal government to protect and rebuild habitats for sea birds and sea ducks, specializing in restoration after oil spills. She shares some of the memory loss coping skills that she employs:

  1. Become a note taker: I take a lot of notes. I use a bullet journal. I now have a huge collection of hundreds of notebooks I’ve filled and it keeps growing, but it’s working for me.
  2. Keep a “done” list: Every day I write down not just to do lists, but “done” lists – so I remember that I did something. I capture calls I made, e-mails I sent, discussions and conversations I had.  My “done” list is my biggest coping strategy. My short term memory was really impacted from my chemo and the early menopause that resulted, so my journals and my “done” list are my recall mechanism. 
  3. Be proactive when it comes to therapy: My therapist has been amazing in coaching me to not beat myself up and to move forward and to be okay with not being okay. I had a hard time being weak – not just physically, but mentally weak. I’m a huge advocate of starting therapy early, when starting treatment, to get ahead of the roller coaster ride. I’d fallen into a severe depression after treatment was over, and I wish I’d started therapy earlier. 
  4. Don’t be afraid of medication: Medication has helped me battle my depression and panic attacks. My body doesn’t create estrogen and progesterone anymore. That makes a person crazy! It is not in your head! 
  5. Find your escape: I read a lot to escape. I’ve started meditating. I also started art therapy and do woodworking and jewelry making. I recently learned how to weld. I’ll never forget when I was in treatment and a social worker was trying to talk to me about art therapy and painting. I was like ‘screw you, I’m dying here.’ But now, years later, art has been my coping mechanism. It has become my sanity. (But I will never tell someone that during treatment! Only after!)

Eight year cancer survivor Samantha is a wildlife ecologist in San Diego, CA. When she is not protecting sea birds and restoring habitat for sea ducks injured by coastal oil spills, she volunteers with Burning Man and has attended the art festival 5 times. Learn more about Samantha’s Cervivor Story here.