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!
I bet you thought I was going to say C@^<3r? Nope. I’ve decided to write a blog without using that dirty word one time. This time, C is for commitment, community, cure, care and concern.
John and I have decided to seal the domestic partnership deal and move in together. For three years, we’ve maintained separate households with the philosophy that no couple is ever blamed for ‘taking it too slow’ when developing their relationship. We are now at the point, however, of hoping to simplify life a bit by living under the same roof.
We’ve chosen to rent a house that is closer to my work and Gracee’s school, while easing John’s commute to work with a lot less time driving on the freeway. A big bonus is this house being located directly across the street from Tryon Creek State Park. This park, although located in the Portland city limits, has miles of hiking trails, and has been our favorite local go-to place for a quick outdoor experience. An even bigger bonus is all of our kids are excited about this move, including Lucy, the dog!
So, we are busy packing and culling through our ‘stuff’ as we prepare to move over these next few weeks. Additionally, John has a round of chemo this Wednesday and we have a Dr appointment the same day. We hope to hear positive news from a recent PET scan and bronchoscopy.
In the meantime, keep he and us in your prayers and positive intentions. And start planning your visit to Portland!
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.
I’m expecting Big Miracles and Victories, and will take all the small victories and miracles along the way. John was able to change his insurance plan to Providence. As of October 1st, he will be double covered and changing medical teams to a specialty lung cancer team at Providence hospital in Portland. He’s already had 1 consult and 2 phone conversations with his new doctor, and we have an appointment scheduled with her for October 1st. She’s reviewed his history, the recent PET/CT scans and lab results and will look at the MRI on his brain and vertebrae. I noted to him that she was already working for him, even when he wasn’t yet an established patient. This only engenders more confidence in her and increases the desire for her skills and expertise.
John rocks the advocacy world. His ability to close the deal is admirable. Some might call it stubborn, but I prefer to say when he is passionate about something, you will know it. This is something I truly love about him ~ as long as we are passionate about the same things.
I’m thankful he can turn his attention and focus toward healing again. He started a different chemo last Wednesday, and although he needed to recover through the weekend, he seemed to tolerate some of the side effects with a bit more finesse. I’m finding comfort in the little things these days. And as I previously mentioned, I’ll take all small measures of comfort along the way.
The process of telling others about John and cancer has been… a process. We learned about the cancer this summer almost to the day his children flew out of the state to spend 6 weeks with their mom and extended family. Since John (rightly) felt so strong about informing his kids, in person and before informing others, we spent most of those 6 weeks privately adjusting to the news ourselves. We included our parents and a few select friends and family into our inner circle and then waited and prepared to tell our children. It was simultaneously difficult and oddly freeing not to be inundated with cancer. The one thing our wait did do, was give the two of us time to reorganize around the news and assume a different lifestyle.
We prepared for talking with our children by visiting the counselor who works with the cancer center. We choose to privately and separately share the news with our own kids. The anticipation of sharing with them was equally as intense as actually breaking the news. And now that we are on the other side of it, I can say our kids are dealing with the news, the way they deal with other challenges – each individually in their own ways.
We have since begun sharing out this information gradually. Actually, I’m rather grateful for doing it this way, because it’s made the process a bit more digestible for me. Caring for someone with (having) cancer is such a big thing, sharing the news with others can evoke a range of responses. This reminded me of an article I sent to my friend Kris Patrick, who also has stage IV lung cancer. If you are interested, you can read the article here. It’s titled, How Not to Say the Wrong Thing, and the gist of the article is about how to respond to hearing ‘bad news’.
I like the idea of providing comfort in – to those who are closest/closer to the challenge. And then dumping out – so seeking your own support and kvetching away from the one who is most affected by the trauma.
I am so incredibly grateful to be surrounded by loving, kind and prayerful people. For example, our friends, family, and my cohort from George Fox are fervently praying for John and our families. My friend Stacey has brought us meals during chemo rounds and provides me unending support, guidance and reflection. Our parents and families have been emotionally with us every step of the way. People have pitched in and helped with our kids. And offers of help and support keep coming. I know it takes a village and it’s during these times that the village shows up. Every prayer, positive intention and act of kindness is appreciated.
“I feel like I’m spending so much time and energy fighting the systems, I’m too tired to fight the cancer”. Of course. this is not what I want to hear, and yet I totally understand.
We don’t know yet, if John will able to switch his medical plan on October 1st or if he will have to wait for open enrollment on November 1st.
Additionally, the second bronchoscopy yielded no cancer results. Which is oddly disappointing and yet perplexing to me (how does a Dr. get 8 needle aspirations and there are no cells to indicate the cancer that is obviously there?)
Finally, he goes in for a fourth chemo round tomorrow, starting a new chemo drug, because the first drugs were not getting the results his Doctor wanted to see.
He’s been fighting a cold for quite some time and the cough that used to be intermittent, seems to be more pronounced these days. John is tired and I just want him to look and feel relaxed (if this can even happen).
My good friend Kris Patrick recommended a lung cancer specialist at Providence Hospital in Portland. This week, we attended tandem appointments first with John’s current doctor and then the next day with this specialist. I learned more about John’s cancer during our time seeking this second opinion ~ otherwise known as a consult ~ than I have these past two months attempting to navigate our current medical system.
It became quickly clear to me that I want this new doctor for John. It’s like the difference between the toilet paper I use at work (at a public community college) and what I buy at home. I want the Charmin for John!
As we drove up to Providence there was a stately and beautiful Cancer Center sign spanning a glass walkway, connecting the hospital to the parking structure. But, you don’t need to park your own car, because there’s free valet parking (?). I had given myself a lot of extra time to navige not only the big city, but a big hospital as well. Yet, I didn’t need the extra time because in spite of being such a huge hospital, everything was well signed and the process seemed effortless. I want effortless. I need effortless.
John and I looked at each other after our consult with the Providence specialist and I’m pretty sure I was scraping my jaw off the ground. “it’s like night and day” says John.
So, now we are looking into changing our insurance plans and double covering him. As a domestic partner (thank you Oregon), I can cover him through my plan and our annual insurance renews on October 1st. We’re also hoping to change his plan as of October 1, to be covered under Providence as well.
Cross your fingers, say your prayers that this is a seamless process. I want seamless. I need seamless.