The Roller Coaster of Recurrence
Cancer can feel like a roller coaster from the moment you suspect there’s a problem. And, it’s not a fun roller coaster. Instead, it’s a beast that keeps going up and down, causing your stomach to lurch with each plunge. Children have far less information than adults do, and depend on them for everything, including cues as to how to respond to these peaks and valleys. The first thing you can do to help your children through a recurrence of your cancer is to assess how you’re handling things.
Getting a scan report of recurrence can feel very much like the first time the doctor told you that you or your loved one had cancer. If your condition had been stable, it probably seemed like life was going along pretty smoothly. Then, all of a sudden the rug is pulled out from under your feet. You feel off balance. Everything you held in your hands is now up in the air and the room is spinning.
You have the same fears and questions as when cancer first came in your life, except now, you’re more physically beaten up from various treatments. You may also be running out of treatment options. Your kids are older and more aware of the difficulties that come with each new treatment plan. It can be more real than ever when a scan comes back “bad.”
We’ve always tried to have another treatment option waiting in the wings so that if the current treatment isn’t working, we know what the next step is. That’s helped us to feel less overwhelmed at scan time.
Knowing that you love them is the what will ultimately get them through this time. Everything else is a distant 2nd, including housework. This is when you’ll need to rely on your support system. Your friends and family can be helpful in a practical sense. But they are doing even more. Having people that are willing to step up and help when you need it most, communicates to your children that they aren’t alone. They’ll always be taken care of, even when things get difficult.
Our Daughter, Sam
I was talking to my daughter, Sam, about what it’s like to have a parent with cancer. I asked, what surprised her the most about our experience.
She said, “How much people have supported us. I mean, I knew people would be there for us, but it has really been amazing, how wonderful they’ve been.”
To learn more about supporting a friend who has cancer, check out my book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, available on Amazon.com
It’s quite a lesson in delayed gratification, for your children to see what you are willing to do for a time, now, in the hope of having more quality time, later.
It’s hard to go back to the grind of treatment or change to a new one with uncertain side effects and results. One thing that will help is having a good relationship with your medical team. If you feel you can trust them, it is much easier to walk into the unknown. They’ll help you to know whether side effects are temporary, how long they might last, and if a side effect warrants going off of a drug.
Knowing that you trust your medical team will help your children to feel better about things, too. It’s a good idea to periodically clarify your goals with your care team.
- Is your cancer (still) curable?
- What kind of life extension does your doctor think you can get from a given treatment?
- What is the plan, if this treatment doesn’t work?
- How can you relieve pain and other side effects?
Make sure that you have any needed medications on hand in case you experience any issues over the weekend, or in the middle of the night when it’s more difficult to reach your doctor. You don’t need to suffer. There are ways to alleviate the side effects of treatment as well as the symptoms of the disease. In order for your doctor or palliative care specialist to best help you, you need to tell them if you are having problems. Everyone responds differently to various forms of treatment. Just as you rely on them to care for you, your care team relies on you to communicate with them in order to ensure good symptom control. All of these are things are important to know as you’re weighing your treatment options. Your children will also want to know about these things, especially if they are school age or older.
A Second opinion never hurts.
Whether you’ve just been diagnosed, or you are having a recurrence of your cancer, it’s your life on the line. That being said, it is very likely they will affirm what your doctor is doing. That affirmation can go a long way toward you feeling comfortable with your treatment and building trust with your medical team. Make sure that you let them know about your goals for treatment and bring a full set of medical records with you.
My husband gets his treatment from the University of Minnesota. When he was first diagnosed, we went to the Mayo Clinic in Rochester, MN with the blessing of his oncologist. The Mayo, in turn, said he couldn’t possibly be getting better care. This helped us feel secure with his treatment plan. This made it worth getting a second opinion, even though it didn’t change his actual treatment.
Recurrence doesn’t mean it’s the end
The first time Dan had a recurrence after nearly a year of being NED (no evidence of disease), it was devastating. Because of advances in medical research, over 4 years later, he is still with us. Several new drugs became available to him during that time. Some worked, some didn’t. Some less than wonderful, older treatments have given him a second wind when he needed it. Only you can decide what is right for you and your family. Even when the medical options run out, or you choose not to pursue them, you can still have quality time with your family.
My husband, Dan had a recurrence in the winter of 2015-2016. His lungs filled with cancer making it hard to breathe, and impossible to talk without coughing. He changed treatments 3 times in one month. One of the treatments was an old chemo combination of Cisplatin and Gemzar. He was only able to have 2 infusions before his white counts plummeted to dangerous levels.
Thankfully, the FDA approved a new targeted therapy that matched my husband’s genetic test results. After only a couple of weeks on Tagrisso, he could breathe again. He soon felt better than he had in years.
The following July, Dan’s routine scan showed progression, again. It came as a shock to me. He’d been doing so well. We were having a wonderful summer. How could it be cut short?
His doctor tried to get him into a trial, but it was full. Besides that, he’d already been on too many different forms of treatment for any trial to accept him.
The option before us was the Cisplatin and Gemzar that had been so hard on his immune system and red blood cell counts, six months earlier. We asked the doctor what the chances were of this chemo combo working. She said, “Ten to fifteen percent.” That wasn’t very encouraging.
The end of the line?
We felt so defeated. It felt like we’d come to the end of the line. The treatment might work, but it might not. Having nothing left with which to barricade the door to death is frightening. We spent several days lying in bed for hours at a time, holding each other as we cried.
We put on brave faces for our kids. Still, they were crushed when I told them about the scan results. They’d had four years on this roller coaster. During that time, they’d made many friends with parents who have cancer. They had seen some of those friends lose a parent to cancer.
We had a month to absorb the shock. Dan took a couple of short trips that needed to happen before he started treatment again. Melissa Turgeon from the Angel Foundation came to our home with an intern and a photographer and gave us some amazing memories. They made plaster molds of Dan’s hand and of our hands together. The photographer captured those moments as well as some very fun family pictures. We were preparing for the end of those kinds of good times.
Then, Dan went back in for a pre-chemo CT scan, just to get a baseline of where he was. The cancer had nearly disappeared! The cancer that was on the previous month’s scan was mostly gone. So, back on the Tagrisso Dan went. It really is a roller coaster.
When I told the girls, they were happy but hesitant to get too excited. One of our daughters said. “We’ve just seen this so many times; up and down, up and down.” The girls were now older and more experienced with this dreaded disease. They knew what was ahead. We had plaster casts made of Dan’s hands and one of his hand and mine together. The Angel Foundation arranged to have a photographer capture our family on film before things changed…again.
It’s okay to grieve
While it is best if your kids see you as being in control of your emotions so that they aren’t afraid, it is still okay to grieve. In fact, it is very healthy. You may feel frustrated by the news of recurrence. You’ve done everything that you were supposed to do and now you are back in the chemo chair.
Often, everyone in the family is trying to be strong, leaving others in the family to wonder if they are the only one hurting and if it’s even okay to feel like they do. It’s helpful for families to take some time to talk together about their feelings. It can help each member to know that they aren’t the only one who is sad (or angry or frustrated, etc.) about the recurrence. Then, you can roll up your sleeves and move forward in the way that is best for you and your family.
I am an author, writer, and speaker and homeschooling mom of 3. Since my husband, Dan was diagnosed with stage IV lung cancer in 2012, I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness.
My goal is to help people face cancer with grace.
My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com