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.
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.
It’s felt like John has been in a boxing ring all weekend, and everything he’s ever learned about boxing has been through word of mouth. You know how people say, “it’s like this….” and “here are the potential side effects…”. And you listen and nod your head. But, you don’t really “GET IT” until you go through it? Well, we are now seasoned post chemo warriors.
It’s Monday and we are sitting in the doctor’s office. I have counted the amount of hours we have spent in medical facilities over the past 6 days and I total 24 (!).
In addition to the extreme pain, discomfort, 3 sleepless nights and nausea, John has also been experiencing dehydration. He became so weak and light-headed early Saturday morning, he earned a trip to the ER by way of our local EMT’s and ambulance. Passing out in the bathroom was not on the agenda for the day and I reached my threshold for WTF is going on when he went down a second time on his way back from the bathroom.
Saturday, he spent 8 hours in the ER as they juiced him back up with 5 liters of saline solution. With a dangerously low blood pressure, I felt relieved to have someone with more experience and skill keeping an eye on him for a while. They ‘threatened’ to keep him overnight as he showed small improvements throughout the day. I swear he willed his blood pressure back up and that short successful walk around the nursing station, which subsequently supported his discharge.
On Sunday, I asked him if he’d like to join me and our dog, Lucy for a quick walk. We journeyed across the street to the park and back. He’s so weak, nauseated and in pain. Throughout the night, he took another nosedive, ending up mildly dehydrated again; resulting in another sleepless night with phone calls to the advice nurse and an appointment for fluid with the doctor on Monday. As I sit in the doctors office on Monday I think about how tired I feel, and I wonder about his level of exhaustion. It’s only been two short weeks from when we learned about his diagnosis. Not only are we still reeling from this news, but we are in the thick of it. I don’t really let myself feel much these days and when I do it feels heavy, sticky, thick and overwhelming. It sucks. Just like cancer.
It’s the day after round 1 of chemo and we’re back in the hospital. A very different part of the hospital. Actually, it’s an entirely different hospital and this time, John will endure his second bronchoscopy since this ordeal started. The first bronchoscopy was done because his CT scan showed ‘a spot’. The pulmonologist related two different concerns; one being an autoimmune issue and other being a fungal pneumonia. We’ll take the lesser of the two evils, please. Imagine our shock when the results came back negative for neither and positive for cancer. What the hell?? We then learned that the sample was so small that they really can’t tell us much; except to say it’s lung cancer.
In our three hour initial meeting with the oncologist, he relates a diagnosis of stage IV lung cancer. This is based on the little sample that was found in the initial bronchoscopy and through a PET scan that shows a spot on John’s lung, fluid in the lung, a spot under his right arm, a spot on his right pelvis and one more on his C1 vertebrae. At this point, his oncologist relates limited treatment options given the limited information. He recommends chemotherapy and taking a biopsy from the spot under John’s arm so we can find out the cancer type and molecular structure, and to potentially expand the treatment options.
We’re simultaneously surprised and puzzled when the biopsy under his arm comes back negative for any cancer. Hmmmmm. Thus, the second bronchoscopy.
John is pretty funny when he’s pre and post op. A little loopy and quite talkative. After the procedure, the surgeon gives us the thumbs up letting me know John was cracking jokes during the entire operation (of which he has no memory). When the Dr. asks him how many samples he should take from the lung, John recommends 9 (?). The Dr, thinks 8 is plenty and calls it good.
John’s also a medical trooper, enduring 7 hours of chemotherapy one day and an outpatient ~ yet invasive ~ procedure the next. Yet, I don’t really understand what kind of amazing trooper he is until this weekend.