A working mother in her 50s with two kids, a self-employed husband, and a very full life, Patricia was always juggling. But, maintaining a normal life for the kids while dealing with his and hers diagnoses meant there wasn’t a lot of room for her own needs.
Henry hadn’t been feeling well for weeks. He had a pain that he kept thinking was acid reflux. It would get better, and then it would come back. We were driving down to visit family several hours away for the holidays, and he wasn’t himself. He was very fatigued and short with the kids and didn’t help at all with the driving. When we got to my cousin’s house, he went right to bed with a fever.
When we got back home, he saw his doctor who ordered a chest x-ray. It showed something but wasn’t clear, so they decided to do a scan. Meanwhile, I was scheduled to have a stereotactic biopsy of both breasts because of something they had picked up on a routine mammogram. It was a grueling experience, the worst, physically. And I was in a weird space because of the pain.
I had just finished and was standing on the sidewalk when Henry called to say he had to cancel a planned business trip because the pulmonologist said no way could he travel. His condition was serious and the risks too high. It was very complicated because of who the trip was for and how not to disclose his health problems. Our call was less about the fact he might be very sick than about how he should handle the cancellation. His business was still brand new, and he didn’t want to allow any perception of sickness, couldn’t show anything less than strength and capability.
It was such a stressful time. He had a biopsy two days later — a quick test. Before he was even out of the anesthesia, they knew it was cancer and knew they should act fast. It was a big tumor in his right lung, high-grade, non-small-cell lung cancer. Immediately, we went into crazy planning mode. While he was still under anesthesia, we were scheduling him for the surgery. The following week, we had appointments at the cancer suite to meet with the surgeon, oncologist and pulmonologist again. When we met with all those doctors, we loved the team. We loved the way they took care of everyone. They were all so gracious and kind, from the folks that check you in to the ones who take your money. It spoils you for any other doctor.
While we were waiting for the oncologist to come talk to him, I picked up a message from my gynecologist – “I guess you already know by now that you need to be contacting a surgeon, here’s who we recommend.” I couldn’t believe she was leaving this in a voice mail. And I could barely understand her message. But, my reaction was ok, I don’t really know what this means, but here we go.
After we met with the oncologist, I had to pick up my daughter. I was on a city bus when my gynecologist called back, and we spoke in person. I was trying to understand her, what the test actually showed. There was one type of cancer in one breast, something different in the other. And she told me to go see a breast surgeon, in the same hospital I had just left with Henry. That was a crazy day.
Eventful and Uneventful
The surgeon my doctor recommended seemed like a good choice, other than the long wait to get on her schedule. I had more biopsies, met with the genetic counselor because there is a family history of cancer, a plastic surgeon, etc. The cancer in one breast was not aggressive, and the growth in the other was hyperplasia, not yet cancerous, so I scheduled a mastectomy and implant. It was a couple months away, but was all uneventful.
Meanwhile, after we met with Henry’s team, he had his surgery. Once he had recovered from the operation, the plan was that he would have four rounds of chemotherapy and then see where things stood. But, he didn’t respond well to the chemo. He had significant tinnitus, neuropathy and other side effects. The team switched up the chemo for the next three rounds, which was less intense, but still problematic.
You could really chart when it would hit. He had treatment on Monday. Monday and Tuesday he had such high levels of steroids in his system from the treatment, he felt pretty good. Then I would see the color drain as the steroids left his system, and days 4-5 he was so low and queasy.
Lighting Up and Settling Down
When he finished the last treatment and went for a scan, he had all these nodes that lit up. The team was shocked that he wasn’t clean. They had talked about starting him on an adjuvant targeted therapy that inhibits epidermal growth factor receptors and works in the presence of a mutation he had to keep the cancer from coming back. But when he lit up with tumors of significant size, they switched him to this as his primary therapy. They decided not to biopsy anything at this point. Why go through another surgery if he would probably take the medication anyway?
He started on the new drug three weeks after the bad scan results. But the new medication was no picnic either. It can cause skin outbreaks and diarrhea, nail issues. In theory, those side effects show that it’s working. He got it bad. We didn’t know whether to be pleased it was working or upset about all the side effects. But, the next scan a few months later was very close to clear, so we were thrilled. There’s been no change in that since then. His scans still look good, and he’s still on the medication.
Avoiding the Dark
Henry’s diagnosis was so much more life or death to me than mine. Both of us are pretty steady people, but he, more than I, doesn’t go to worse case scenarios. Very quickly it became a project, and we just had to make the best decisions. It felt scary, but we were handling it. There was no time to be afraid. We didn’t think about what could go wrong in the surgery. Our whole approach was until you have to panic, don’t panic.
The hardest part was that stretch with all the unknowns: How would the surgery go? How would he respond to treatment? The surgery itself was a little unnerving. He was in there way longer than they had expected. I had to leave the waiting room because they were closing it. I began to get scared that something was going wrong. There was so much to keep going and to maintain a normal life for the kids that we didn’t really focus on how hard it all was. When you have to act like everything is normal, it provides a balance that helps you to not go to darker places.
When you go through something like this, you put all sorts of other things on hold. I wasn’t working at the time of our diagnoses, even though the kids were old enough and I was ready to go back to work. But I couldn’t search for a job in the middle of cancer. You put on hold anything that’s negotiable. Henry couldn’t not work. He’d just started his own business, so would take a couple of days off when he felt at his worst. But his focus and creativity and energy are what he brings to his business. There was a tremendous cost to him that we are still dealing with. It’s hard to figure out where or how to get that back.
None of us were prepared for that bad scan. That’s when the two of us started having long term planning conversations. We didn’t know if he would respond to the new medication, and even now we wonder: Does it stop working at some point? And what is the next line of treatment? What are all the financial ramifications? And if he becomes disabled, what does that mean and how do we live on that?
These issues are not part of my daily life, but they are ever present for Henry. He fears he is going to abandon us and leave us in a bad position. I don’t think we would be in a bad position. I’m employable. We have assets. The more complicated scenario would be if he’s in a daily treatment for a few years and can’t work and we have all those expenses. I would want to be present for Henry if he became disabled, which makes it harder to work, but I would have to if we were on disability income.
The hardest part now is that there are still residual issues. When we were in the midst of the crisis, we were so focused on what we had to do. It was a project. We are both competent people moving through the world with many benefits, and we just did it. Now, there are so many unknowns left and we can’t deal with things as directly. Is it coming back? I’m not as strong as I was. There are limitations to how we can think about our future. He feels it more than I do, but it’s hard for him to talk about challenging emotional things. We’re living with the sense that we don’t know what life will bring.
Cancer is at hand at all times. I get very anxious about his scans. He doesn’t say he does, but I think he’s anxious. Going into his first bad scan, we had no anxiety. We assumed everything was going to be fine. But now, we know enough to have some anxiety.
My cancer is much different. It’s a hormone receptive cancer, so they put me on tamoxifen. I struggled with that and with the first aromatase inhibitor they put me on, Arimidex. It caused so much joint pain it was like I was a 70-year old. I had to hold the banister to get down the stairs. Now they want me to try another one, but I haven’t decided whether or not to take it.
I’m not really worried about the recurrence of my cancer but feel I haven’t gotten clear advice on the drugs. Both had interfered with energy, brain power, sex, etc. The breast surgeon is upset that I stopped, but my oncologist isn’t.
It can seem really lonely at times. People don’t know he had a bad scan. We don’t want all our interaction with others to be about health and don’t want his business to be jeopardized, so we haven’t discussed that he’s still an active patient. We’re still on alert.
I don’t feel knocked off balance for my own health, but I did have to schedule around his treatment. It was fine, but I when he went into darkness in his chemo cycles, I was still pretty tired and recovering from my surgery. I hadn’t gotten a chance to even be sick, just one day to recover. Maybe I have a little resentment around that. I really didn’t have the permission to take care of myself.
It wasn’t that physically disabling, but there was certainly an emotional component to it. And, it’s been a challenge to my self-identity. I was someone who could work all night and be strong the next day. But now I have the sense that I’m not really able to rely on myself anymore. That’s disconcerting. Who are you if don’t have that?
Unfortunately, there really hasn’t been a lot of room for emotions. When I think about my health now, I know that I need to stay alive, to give my kids a full life. I feel so responsible for them and providing stability at home. Sometimes, being so busy is a good distraction. On the day I got the information on my biopsy, I had a meeting with my mentor, who was a prospective client. I went, figuring it was better to have the meeting than not. But it was weird. It wasn’t hard to focus — it was like some strange cognitive dissonance. There’s a lot about this that requires cognitive dissonance.