news

I felt so lucky this week, I bought a lottery ticket. We met with John’s Doctor before his chemo infusion on Wednesday. As she reviewed his recent PET scan, she noted the metastasis’ on his bones along the spine were no longer showing up on the scan. Additionally, he had no new growth and the tumor in his lung is ‘quiet’. I think we both had the same deer in the headlights, shocked look as we did when he originally was diagnosed. I can attest to experiencing a dissonance of sorts. Sometimes, good news is as disorienting and hard to wrap my brain around as other news. In fact, after a day of basking in this news, John wakes up on Thursday morning and asks me, “now what does all that mean?”.

On the one hand, this is GREAT and fabulous news. This means the chemo is doing its job. Right now, John has fewer active C________ cells rummaging through his otherwise healthy body. This news fully aligns with how he has appeared to look like he’s been feeling better lately.

On the other hand, his tumor is still present. The bronchial pathology reports came back with an Adenocarcinoma confirmation and an ALK mutation. This type of mutation rearrangement is present in 5-7% of lung cancer warriors, who are typically younger individuals with no to little smoking histories. John’s Doctor wants to begin CT scans in a few weeks to calibrate and measure the tumor, thus monitoring it for depletion or growth. The genetic mutation opens up some future treatment options. I’m cautiously optimistic….

I know his lung still harbors the C_____ word.  Yet, there is a part of me that is turning cartwheels of joy at this awesome news. I’ll ride this wave of good news as long as I can. And seriously, John’s looking and feeling (relatively) good could not have come at a better time – we have packing and moving to do!

third time’s a charm

During the past several weeks, I have found myself internally comparing our new Doctor and insurances to the former system. John has recently undergone his 5th round of chemo and a 3rd Bronchoscopy. We received a quick note back from the Doctors office that they were able to get enough tissue sample to send away for molecular testing. This information may open treatment options for John, so we are hopeful as we wait to hear more.

Gracee and I participated in a 5K to raise awareness and research funds for Lung cancer warriors. We participated on my friend, Kris Patrick’s team, Metastatic Love. With over $3,700 in donations, our team raised the largest amount of money. I treasured the time I spent walking with Kris, who is another stage IV lung cancer warrior. She inspires me and had me cracking up during our entire walk together. I love her sense of humor, her strength and her direct and honest nature. In fact, it was Kris who recommended John’s new Doctor and I can’t thank her enough for the referral.

I’m struck by the lack of financial backing, lack of research and public dis-interest in this cancer. The underfunding is observable and saddens me. Yet in the past year alone, I’ve directly known 3 people with new lung cancer diagnoses (Kris, John and very recently a co-worker, Kathleen). All young and otherwise healthy people who, when diagnosed, have late stages because detection is so difficult. John, Kris and Kathleen are my new heros. They occupy a huge space in my heart and prayers. I see, firsthand, the difficult battle and then to battle a social stigma that just isn’t true (ie. lung cancer is a smoker’s problem)… you just watch the advocate in me let loose.

It’s not to late to donate. The event Gracee and I walked for was sponsored by freetobreathe.org. An organization dedicated to doubling the survival rate of Lung Cancer warriors by 2022. Who knows? That small donation you make, might mean the research that helps save thousands of lives. Or that of someone you know and love.

stupid questions

Over the past few weeks I’ve started a list of stupid questions people ask me. I can’t help but to share these questions with those who might be interested…

at 3am in the morning on the phone with the advice nurse;

“do you have a blood pressure cuff?”… ummm, what do I say?

“Am I supposed to have a blood pressure cuff? Is this a standard medical thing one own’s like a thermometer? Would I know how to use one if I had one?”.

How about this one at 4am in the morning on the phone with the advice nurse,

“do you have any prune juice?”

How old do you think I am??? I’m NOT even 50 yet, why would I keep prune juice on hand? NO, but we do have a 24 hour open walmart close by, “could you hold for 20 minutes while I go get some?”.

“Did he smoke?” I don’t give a shit if he smoked or not. Half the people out there with lung cancer never smoked.

How about this question to John (from medical providers). “Do you have any pain?”… I can see the naughty glint in his eye when he’s asked this question and I know how he wants to respond, “Let’s see, I have cancer. I’m getting chemo. I’m almost 50 years old… when am I NOT in pain dumbass?”.

Stories from chemo hell

On the hottest day of the year, I accompanied my partner to his first round of chemo. It was only 10 short days ago when we spent 3 hours with an oncologist and the oncology nurse learning about John’s diagnosis of lung cancer. There’s still questions as to what stage and exactly what type of cancer he has. But, it is cancer. So, here we sit, waiting for the nurse to start his IV. There are 18-20 chemo stations with a comfy chair for the patient receiving cancer and a not so comfy chair for their caregiver, a tv, snacks, a refrigerator, and many chemo pods come with a window view. Of the parking lot.

I lean up against the window, feeling the heat, so I check my phone for the weather, realizing it’s the hottest day on record so far. This will definitely make rehabbing from chemo that much more comfortable in my un air conditioned home. Do I sound a bit sarcastic and cynical? Yes, I’m just not feeling the love these days. The enormity of cancer is hitting me full force as the nurse explains the process and schedule for the day and the side effects of chemo. I look around the room and see at least a dozen other people receiving chemo. I hiss at the woman who chooses to sit in the pod next to ours and the first thing out of her mouth is, “I thought I was going to have a private room?”. Welcome to cancer hell, lady. Apparently, cancer knows no bounds and if this isn’t a lesson you’ve already learned, now is the time.

I realize that I may be talking to this other lady, but I may as well be talking to myself as well. In a matter of seconds, my life has changed. John had been ill for several months. His doctor thought he had pneumonia and prescribed three separate rounds of antibiotics before John insisted on different tests. A CT scan showed ‘something’ while the initial bronchoscopy diagnosed the cancer. Again, we don’t have a clear stage or type yet, so a second bronchoscopy is scheduled for tomorrow.

I come back to the nurse who is patiently explaining todays process. He and John chat about hiking and fishing between the medical jargon. I look around and can feel the sick in the air. John is the youngest patient here and clearly the most healthy looking. I can’t wait to go home and take a shower. I know I can’t catch it, but I need to get the sick off me. Maybe I will wake up and this will all be a bad dream? This is my wish as I spend the day looking out the window.