I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is L is for Living with Cancer.
What does a day in the life of a cancer patient look like? I’m asked this question a lot by people who want a better idea of how to support a loved one who’s living with cancer. A couple of years ago, I brought it up at the dinner table to see what our family thought.
Our 16 year old immediately said, “It depends on which day.”
My 19 year old said, “Which treatment.”
“And what he did the day before,” added our 12-year-old.”
Then they proceeded to list off all of the scenarios that we might happen to experience at any given time. I was surprised at their insights at such a young age. Kids who have a parent living with cancer quickly gain a keen understanding of its effects.
The past 5+ years of living with cancer, are divided up by treatment and side effect; hope and heartbreak.
Year One- A Year of Adjustment
In the beginning, living with cancer was overwhelming. It wasn’t just the physical, but also emotional well being that was in jeopardy.
Near the end of 2012, Dan began the targeted therapy called, Tarceva. He had a mouth so full of sores that he could no longer preach his sermons, so, in early 2013, we closed the church. He was heartbroken. We learned at that time how inundated patients and their families are with insensitive people. So many people think they know more about the patient’s cancer than the patient and their medical team.
After a few years of reflection, I wrote a book called, “Facing Cancer as A Friend: How to Support Someone who has Cancer.” The truth is, most people want to help, but they don’t know how. So my hope was to give people the knowledge they needed to help in a sensitive caring way, without being intimidated by the enormity of this disease.
Year Two- Fatigue and Weakness
By early 2014, Dan was still on the wonder drug that shrank his cancer to near-invisibility on scans. He’d become so fatigued and out of breath, that a walk around the neighborhood was difficult. Nothing excited him anymore because thinking about doing anything was overwhelming.
That was when embraced “one thing a day.” Each day, Dan could do one thing; a visit with a friend, do a real estate showing, attend a prayer meeting, Sunday morning church, etc. He had to decide what that day would allow, based on how he felt as well as what else was scheduled that week.
For example, if it was a big thing like a trip to the Minnesota State Fair (a must-not-miss), we would map out our day, making one strategic pass through the fair. The last portion of walking was taken care of by the SkyGlider, a chair lift type of ride that runs along a suspended cable over the fairgrounds. Dan would make sure to have plenty of pain medication on hand and drink a lot of caffeine. Big days like that meant also doing nothing the day before so he could rest, or the day after, so he could recuperate.
If you had a sizable army, and you were waging a battle against an island–even a very large island, given the right weapons, you should be able to defeat it. This is what often happens when fighting cancer. Unfortunately, there are times when you are on the island. You realized too late that a rogue army was taking over all of the surrounding islands. By now, no matter how well you fight, and how strong your army is, you will eventually be overcome. The enemy has the advantage.
Can’t you just drop an atomic bomb?
That’s what I wanted to do when Dan found out he had cancer. but, Dan had metastatic cancer that had run rampant throughout his body via his lymphatic system. Because his body is the soil that cancer lives on, dropping an atomic bomb (if there were one for his cancer) would have to completely decimate him to kill every bit of cancer down to the cellular level. We couldn’t cut it out or “blast” it out. So we are left with keeping it at bay until eventually cancer’s reinforcements come in and gain an advantage, again.
A New Drug
Eventually, the cancer in Dan’s body eventually became resistant to the Tarceva. The next drug he was on, Afatinib, was similar to Tarceva in the way it worked. The oncologist hoped that it would be different enough to get past the resistant cells. This drug messed with his digestive system, so he had to regulate that with more pills. Those problems only led to more painful issues that can accompany prolonged digestive problems.
His toenails were always inflamed, and soon his fingers were as well, making typing nearly impossible and always painful. Getting dressed was often accompanied by a pained, “Ow!” He had to soak his nails twice a day in Epsom salts. It was the only time I could see the virtue in him wearing flip-flops (even then, it was questionable).
Living With Cancer Means Waiting
Waiting for scan results often fills patients and their families with an anxiety that in the cancer world, has been called “scanxiety.” Would we be able to keep going like we were, or would life and treatment take another detour through some unknown territory in a dark forest filled with “lions, tigers, and bears—oh my?” For all the problems Afatinib caused him, it didn’t do its job. On my birthday that year (while out to dinner), we checked our e-mail and found out the cancer was worse than when he was diagnosed 2 years earlier.
Not only was cancer back and worse than ever, but it had also metastasized to his brain. To treat it, Dan had to have something called, “Gamma Knife” surgery at the University of Minnesota. This was essentially 200 concentrated beams of radiation focused on the tumor. Thankfully, it worked. Once cancer hits the brain, you feel like you’ve entered a whole new part of the journey. You feel vulnerable, living with cancer in your brain.
Year Three- Hard Core Chemo
Next, they pulled out the big guns. Carbo/Taxol. Those treatment days were full days; We came to the cancer center in the morning and didn’t leave until the end of the day. He would sleep in the chair hooked up to the IV, and I would sit in a folding chair with my Kindle. At noon, I’d run to the Subway shop to bring back lunch.
After that, he spent at least 16 hours a day in bed. On bad days, he would only get up for meals, and even then, he had a hard time eating, so he didn’t stay up long.
Within a couple of days, he would be in so much pain. It was like torture; Stabbing, throbbing pain in his bones that no amount of pain medication could control. He turned to ibuprofen which is a big “no-no” while on chemo since it’s a blood thinner. It helped, though.
Nausea plagued him day and night, often leaving him with the feeling that the whole world was spinning. He lost his hair, including the mustache he had donned for over 30 years. We had a head-shaving day when the missing clumps made him look patchy. I have always given him his haircuts. That one was a hard one to get through.
Dan got major “chemo-brain” (a term given to the mental fog that hinders cognitive thinking and memory). When it was at its worst, he once asked me the same question 3 times in five minutes. He not only forgot the answer but that he had already asked the question.
Immune System Down
The worst, though, was when his immunity would plunge and he would get a raging fever that was nearly impossible to bring down. We had plenty of time racked up in the emergency room during those months. He missed church most Sundays, which was hard on him. Living with cancer didn’t feel much like living at that point.
During that time, some amazing people came alongside us, blessing us with meals during the week of treatment, and helping to transport our daughter to and from school. The third week, the week before he would have another treatment was often fairly good. He could visit with people and spend less time in bed.
An Easier Treatment that Didn’t Work
It was time for easier treatment. Alimta was an infusion that only had us at the cancer center for half of the day if we scheduled it right. There were very few side effects. We hoped he could stay on it for a good, long time, but that wasn’t to be. The Alimta didn’t work, and the cancer was coming back.
Next, we would try immunotherapy. It was (and is) all the rage in cancer circles. It would harness the power of his own immune system to fight cancer. The Opdivo infusions only took up half a day as well, and he tolerated them at first…
Then came a cough. He could hardly talk without having to suppress it (or at least try to). He was constantly using lozenges to ease his urge to cough. A cough was a known, side effect of the drug, in as many as 30% of patients. Theoretically, it would go away, once he went off of the drug. But, the drug was so new, it was hard to know for sure.
His cough got worse, and Dan became more isolated, Now, he could attend church, but he couldn’t sing. Visiting with friends was difficult because every word he spoke seemed to instigate a cough.
Year Four- Life and Death and Life
For our anniversary in 2016, Dan took me to a bed and breakfast. It was in a tugboat in St. Paul on the Mississippi. He planned the most romantic weekend.
The day we returned home, he went to bed and didn’t get up for 3 days, except to eat. The cancer was back. It had been having a party in Dan’s lungs while he was on Opdivo.
The pulmonologist began to talk to us about preparing for the end. She was candid and caring. I was broken. I had been on Dan’s case since his diagnosis to get some things prepared. It was hard for him to do because he never felt very good, and when he did, he wanted to live—not think about dying.
But he was… Right before my eyes, I was watching the love of my life slip away.
Our Kids Coping With their Dad at his Sickest
Children often suffer in the shadows of a parent living with cancer. They feel powerless to do anything about it, and the adults in their lives often don’t know how to help them. Our youngest began to fall into the abyss of depression. She is on the autism spectrum and struggles with her emotions, anyway. This was too much. I took a break from anything that wasn’t essential. I needed to cherish every moment that I had left with Dan, and I couldn’t leave our daughter alone.
A social worker visited to see how the kids were coping, and what she could do to help. She gave them coloring books to express their emotions. It sounds like a simple thing, but it meant a lot to them.
Home Health Care
We had home health care at that point. A nurse would visit each week, sometimes twice a week, to check his vitals. She talked to us about transitioning to hospice. The only hope we had of ending Dan’s cough was to get the cancer under control once again.
We decided to try a new drug on the market. It was similar to the Tarceva that had helped him so much, in the beginning. Iressa helped him to breathe again for 2 weeks. During that time, they ran a new, genome test. The cancer in Dan’s body originally had a mutation called EGFR. Those cells, being smart, eventually turned themselves into a new mutation, known as T790M. A drug, fresh on the market called Tagrisso could treat both EGFR and T790M mutations. Tagrisso had just been fast-tracked and put on the market 3 months early–just in time to save Dan’s life. There was hope!
It could take a couple of weeks for the Tagrisso to work, and Dan’s oncologist worried that he didn’t have enough time. He started receiving an infusion of a very old, harsh, (but effective) mix of Cisplatin and Gemzar chemo-once a week for 2 weeks, and then a week off. Dan’s immunity plummeted to a dangerously low level and after the 2nd treatment, they stopped.
It was time to rely on the Tagrisso, alone. Soon, he was breathing again. His scans were looking remarkably better. In the beginning, he had lingering pneumonia which he caught when his immunities were so low. But, soon he was better and we were able to fly to California where we spent time with our daughter, son-in-law, and our beautiful twin grandsons.
We began taking walks again. We made lots more memories as a family. Dan started getting things in order for me in case things changed. Our experience has shown us that they do.
One day, we were having our morning coffee on the deck and he remarked that he has never been as aware of the amazing beauty of the world as he is now. I asked him why he thought that was. After thinking for a minute, he said,
“I think it’s from having a near death experience. Before, I had cancer, but my problems were the side effects of the drugs. It was more theoretical. But, not being able to breathe because of the cancer—that did something.”
Year Five- The Easiest Year
Last year, living with cancer was pretty much auto-pilot. Dan continued to have monthly appointments with his oncologist, monthly labs and scans every three months. Aside from that, we tried to put the reality of living with cancer on the back burner as often as we could, Dan still suffered fatigue, pain, and weakness. He takes pain medication 24/7 to try to keep it under control.
To see a video of us talking about our experience with Tagrisso, check out my (future) post about making a video.
A Disturbing Scan
After five years of living with cancer, using the best drugs available, things have again changed. Eventually, even the best drug stops working. Dan has had 3 rounds of Gemzar and Cisplatin. We recently got new scan results, ones we’ve been dreading. There has been some improvement, and just as much progression in his lungs as well, as a new metastasis on his T11 vertebra. This will mean more change. Our oncologist has nothing more to pull out of her bag of tricks, so she is sending us to the Mayo Clinic, in the hope that they might have an experimental treatment option.
So, what is a day like, living with cancer? Dan says, ”No matter how the day goes, one thing is consistent. It isn’t how it was before.”
I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.
WHAT ARE YOUR THOUGHTS?
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In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. 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
Also, put your memories into words with The Memory Maker’s Journal.
I also blog at Heather Erickson Author/Writer/Speaker