My wife has lung cancer.
A few months ago, she woke in pain the middle of the night and couldn’t take a breath. The pain went away after a few hours. I assumed it was a back spasm since she’s had back problems most of her life. She said it felt different.
A few weeks later she mentioned this to her doctor when she had her routine annual physical. Her doctor ordered a lung scan to “rule out anything”.
It came back showing a mass the size of a golfball in her left lung.
Our lives were turned upside down.
Choices
We read about lung cancer online at the American Cancer Society, PubMed and a few reputable cancer research sites.
It’s bad news. The stats are grim. Survival rates are low.
Treatment options depend on the type of cancer, its size and how much it has spread. We don’t have enough information yet to know Ellen’s prognosis.
Ellen’s got a family history of cancer. She was a smoker for 40 years. We knew as soon as the mass was detected that her odds of having lung cancer were high. Even so, Ellen said she doesn’t want surgery and will not have her lung removed. Her mother died of cancer at a young age after several tortuous years of chemo, radiation and surgery. Her father died without ever awakening after having surgery to remove his cancerous lung.
I am despondent. Ellen is too. I try to stay strong but all I can think about is losing her. I cry a lot. Sometimes with her, sometimes alone. Every morning when I wake up my first thought is, my wife has cancer and might die soon.
Ellen is older than me. I always expected that I would outlive her. I just didn’t think she might die so soon.
I am angry too. I thought we’d have 10+ more years together. It feels like we just got settled into our new home. After relocating to be close to our son two years ago and with me working part-time for the past year, we’re finally able to spend more time together. And then this.
Ellen doesn’t feel sorry for herself. She feels sorry for me, for Zack and for our pets. She worries about us.
We talk about “if/then” scenarios and contingency planning. We talk about funerals, Zack and me. We discuss finances, wills and advanced directives.
We’ve discussed some of this before, but now it’s no longer an intellectual future planning exercise.
We tell Zack. Ellen tells her brother and sister. I tell my mother and best friend. A few old friends hear the news and reach out to us.
One thing that became crystal clear to me is that the things that occupy my thoughts constantly like money, work, home improvements, fitness, etc. are meaningless. Without my wife, I really don’t care about any of this.
What matters are the people in my life. Especially those I love (including my pets, of course).
Is It Cancer?
First we were sent to a pulmonologist. He ordered a pet scan, blood work and a needle biopsy.
After getting the scan, we met with a diagnostic radiologist to schedule the needle biopsy. This is outpatient surgery where he sticks a needle through her back into the lung to pull out samples for testing. A week later, she has the procedure.
Ellen had a lot of pain after the biopsy. She couldn’t breathe, she was shaking and moaning in pain. The nurse tells us it’s all in Ellen’s head and that she’s “fine”. Ellen and I both know this is BS. We learned later that she had a partial lung collapse.
Post-op, the radiologist tells us, “I don’t think this is cancer. I think you have some kind of infection. I’ve never seen a sample like this.”
I couldn’t believe it! Doctors never give a diagnosis before seeing the test results. But this one was so confident. It was our first sign of hope in weeks.
We know it is probably cancer, but we hope that maybe he’s right.
He was wrong.
Two weeks later the biopsy results confirm she has lung cancer.
The Treatment Plan
The pulmonologist tells us we need to see a surgeon and an oncologist asap.
In a state of shock having just been told the results, we see the oncologist that day. Because he’s a friend of the pulmonologist, he squeezes us in.
The oncologist was extremely kind. He tells us he wants a brain MRI done to see if the cancer has spread to Ellen’s brain, which is common.
Once he has those results and more blood tests done, he wants to begin chemotherapy to attempt to shrink the mass. Then if the cancer hasn’t spread elsewhere, he wants her to see a surgeon.
The oncologist says,“My goal is to cure you. The only cure is surgery but surgery depends on the size, type and location/s of the cancer.”
He explains various treatments.
- If she has brain cancer, she might have surgery to remove the brain cancer.
- Or, if it’s spread all over her brain, she’ll have chemo or radiation to arrest it.
- If there’s no brain cancer and her lung cancer hasn’t spread elsewhere, she’ll have 3 weeks of chemo and then surgery.
- If she can’t (or won’t) have surgery, them chemo will be used to slow the progress of the cancer.
We asked about her survival odds and expected quality of life but he says these all depend on the results of additional tests.
We ask about the stage explaining what we read online. He said staging is “too broad and nonspecific” and that we shouldn’t rely on it. He won’t give us a stage.
The Doctor Dilemma
Up until now, we’ve been coordinating our own care. Each physician and lab we’ve seen operates independently.
It’s been a cluster of scheduling, delays, appointments, scans, IVs, blood work, insurance and getting records exchanged.
We’re worried about chemo, radiation, surgery, side effects and quality of life. Is treatment worth it if it only extends her life a few months or if she’s suffering in agony the whole time?
Ellen is now also thinking about surgery. She’s adamant that if she has surgery, she won’t have it at our local hospital. It’s a small suburban hospital not affiliated with any cancer centers, universities or research facilities.
We’re feeling like we’re there’s no coordination from our mishmash of providers (because there isn’t).
Ellen’s brother tells her that if she needs surgery, he wants her to have it at his local hospital in Sarasota, Florida which is 3 hours away from us. He’s got a concierge doctor there who will help look out for her. Also, he wants her to stay at his house post-op until she recovers.
We read that surgery is brutal and recovery difficult. Surgery requires a 3-7 day hospital stay, drains and a long recovery period.
Ellen likes the idea of seeing her brother’s doctors. She feels this is better than being treated by a name from the phone book. She also worries I won’t be able to handle helping her post-op.
We spend weeks considering this option and trying to figure out the logistics. Would I move to a hotel for a few weeks and board our pets? Do we get a house sitter? What about ongoing treatments? How will Zack see her?
We come to a full stop after seeing the oncologist.
We decide to talk to a surgeon before starting chemo.
There’s a Cleveland Clinic satellite hospital half an hour from us. We make an appointment with their head of cardio-thorasic surgery for a consult.
A week later we see him. He reviews the records, asks a bunch of questions and says,
“You shouldn’t start chemo yet. Your cancer needs to be staged before determining a course of treatment. You might not even need chemo.”
He explains that he’s going to order a bunch of tests and consults. Only after these are complete will he know if she’s a candidate for surgery. He said that if she’s a candidate for surgery, she needs to do it because it’s the only way to cure her cancer. He will have to remove an entire lobe of her left lung.
When she asks about the surgery he explains the process patiently. When asked about post-op pain and quality of life, he says, “You’re young and healthy. If you have surgery, you’re a good candidate for recovering.”
Before leaving us he says,“Get ready for a bunch of tests. This is going to take a few weeks. We’re really busy. But we’ll coordinate everything here. I see the consulting doctors I’ll be sending you to every day. I’ll coordinate your care. Let’s get this staged and then discuss what’s next.”
We like him. We’re impressed with Cleveland Clinic. We’re grateful to have someone who will coordinate the entire process.
We decide to have treatment there.
Today
It’s now been 5 months since the mass was initially discovered.
Last week, all of the tests and consults were finished. Each one took weeks to schedule. They all took longer than we anticipated. After each, we held our breath waiting for the results. Here’s where we are today:
- Brain scan – no cancer found.
- Lung endoscopy to biopsy a satellite node and lymph nodes – cancer appears to be isolated to the large mass only (that’s good news).
- 2nd Endoscopy to look for stomach center – no cancer found.
- Colonoscopy to check hot spots from Pet Scan – no cancer found.
- Cardio consult and EKG- cleared for surgery.
- Oncology consult – cleared for surgery.
So basically, the news is as good as it can be, given that she has lung cancer.
Ellen is starting to have more symptoms. She coughs every day. She gets a sharp pain when breathing sometimes. She has a lot of fatigue and has to lay down during the day occasionally.
To be fair, she’s has anesthesia 3 times in recent history. She’s had multiple surgical procedures. She’s under a tremendous amount of stress. And she’s got a large cancerous mass in her lung.
In the meantime, life goes on in mundane and not so mundane ways. We walk the dog. I exercise. She gardens. We watch TV. We read. We laugh a lot. Some days we can put this entirely out of minds and not think about it at all. Other days are filled with anxiety and fear.
Surgery
We meet with the surgeon next week for the pre-op consult. I’m assuming she’ll be scheduled for surgery in late July or early August.
She’s going to have an entire lobe removed from her left lung (or more depending on what the surgeon finds).
It’s going to suck. But the alternative is suffering from escalating symptoms as the cancer progresses until dying from lung cancer.
She’s a fighter and she’s not ready to give up yet.
I love my wife and do not want to lose her.
And I do not want her to suffer.
That’s all I’ve got to say about this for now. There’s no tidy ending to this story. I’ve got no optimistic lessons to share.
Perhaps I’ll write more about her treatment and recovery in a future post. I might write about her health insurance and the financial implications.
I am relieved that I am self-employed today. Although I could really use a few more consulting gigs, I am grateful to have the time to be with Ellen every step of the way for this ordeal. If I was working full-time for someone else, it would be difficult to get as much time off as I needed.
Maybe someday, this post will help someone else going through a similar situation. I searched for stories like this online and a few I found helped me.