UPDATE: HOME AGAIN & PET SCAN RESULTS

The BEST NEWS is that Dan is home.

14 days in the hospital was a new record. Now he is adjusting to life at home with a fancy hospital bed situation, weekly occupational therapy, physical therapy, and nurse care, many medications to take, and a pretty sweet walker that is actually tall enough for him. He remains in pain but it is manageable with a whole lot of painkillers and (cross your fingers) a medical air mattress we are getting. I don't know what part of the BED SORE WOUND and PAIN FROM SPINAL TUMORS isn't clear enough in the notes for insurance, but I am confident it will get worked out because this is Dan. And the Universe loves Dan.

***

ADDITIONAL GOOD NEWS

He has completed his 10 rounds of radiation! For that, he recieved Little Debbie's Easter cakes. He was so excited. He beamed at me and smelled the box. He was so brave. He told me he would mostly close his eyes, say to himself a mantra "You can do this. You are medicated. It's only 15 minutes. You can do this," over and over again. Despite all of the painkillers, he still needs an additional special opiate dose right before the procedure so that he can lay flat on his back. This was a delicate situation with timing and sometimes it didn't work out very well. Instead of rescheduling, Dan laid down and stayed still, clenching his body, grunting, crying, and at times yelling out. I can't express to you how much he just wanted to get it done. So he got it done. It is my hope of all hopes that the radiation works and his literal sweat and tears will be worth the sweetest, lightest ease of pain in the coming weeks.    

***

The HARD NEWS is that a PET scan revealed he has additional cancer spreading in his body.

Sparks of cyan, red, blue, magenta, yellow, neon green. 

In a body of black.

I really didn't expect everything to light up again. It was all my mind could do to process the results of the three separate MRIs (abdomen, lumbar, and thoracic): cancer active again in and around the spine. It was the moment that we knew would occur in the future of our cancer journey--like a switch getting flipped--I just expected it to be gradual. However all of the cancer showed up as an aggressive spread of color. The results were confusing to me at first. How did they know what was necrotic tissue and what was active cancer? How could they tell the difference? It is the presence of those colors--showing the high metabolic rate of activity. 

ac·tiv·i·ty

/akˈtivədē/

noun

1. 1.

   the condition in which things are happening or being done.

So it is happening--this sort of very diligent production--in his left lung, scattered lymph nodes, and bones like the ribs and pelvis. They took a biopsy from a tumor in a lymph node in his neck, and it had necrotic tissue in the center. The new cancer had grown around the old. If all of this has grown, what about those quieted lesions in that soft, nervous tissue of his brain? I have scanxiety for his MRI next week. I have biopsy-xiety, if that could be a thing, too, for results that will tell us the genomic driver of the cancer. 

[NERDY THINGS: That will tell us if the situation is that the Alsenca (chemo-in-a-pill) is no longer working for his ALK cancer or the cancer mutated. If it is still the ALK gene, we have another medication like Alcensa to try and then some. These "nibs" as we call them, have lined up in the treatment world since Dan was first diagnosed: Loratinib, or Crizotinib, or if it fails, Ceritinib. If it fails, Entrectinib. And so on. In a chat group I found another peson on Brigatinib. Many people are in clinical trials using future nibs. If his cancer mutated, we will need to target therapy toward a new gene. Some known genes for lung cancer are ROS1, BRAF, KRAS, EGFR, MET, for example. Each of these may or may not have targeted medicines on the market or in clinical trials.]

***

The AMAZING THINGS

Help moving furniture to get Dan's bed set up. Jim and Char visiting. Surprise candy on my desk at work. An elementary school friend giving me flowers in the parking lot at Kroger. Stormy happy to have his person home. Home cooked meals! A surprise visit from Doug. Help with chores and errands. Surprise boxes of goodness in the mail--everything from fancy beard soap to a bunch of candy that Raine devours. Sipping wine from Oregon. Amy, who also surprised us visiting from SC. Kind and generous donations.

Every single one of all of your Messages. Comments. Shares. Emails. Letters. Cards. Texts. 

All the good vibes in the Universe. We feel it. We feel it most when we hug each other and Raine. It's all the same!

Donate In Memory of Andy Trahan

I want to personally invite you to join me in supporting ALK Positive through LUNGevity Foundation.

As I have shared through this blog, ALK is the gene responsible for Dan's cancer, and like all lung cancer research and medicine, is tremendously underfunded. ALK knows no limits and typically affects young people who are non-smokers or who have formerly quit. It is important to end the stigma that lung cancer is "just a smoker's disease." All lung cancer patients deserve life!

We have never met in person but Andy Trahan and his wife, Leslie, and their family have inspired me greatly since I found them online after Dan's diagnosis. 

Andy died June 19th, and I grieve with his family. I feel incapable of finding the right words to comfort them, so rather a donation feels right.

This is an excellent opportunity to raise much-needed funds for research and awareness for this important cause. Please join me by making a charitable donation. 

Thank you!

Medical Update || More MRIs and Stopping Chemo

“And one has to understand that braveness is not the absence of fear but rather the strength to keep on going forward despite the fear.” – Paulo Coelho

Based on MRI results in August, we spoke with our new radiation oncologist, Dr. Mackenzie McGee with OSF, as well as the opinion of Dr. James L. McGee, and have increased the frequency of these scans and now have them at the gamma knife center in Peoria. There is a spot that could be brain mets but it hasn’t changed recently. It will be more closely monitored if they find enhancement, gamma knife radiology would be the next step.

In other news: With a decent amount of trepidation, we changed Dan’s maintenance therapy. He stopped chemotherapy (an infusion of Alimta [pemetrexed] every three weeks) and started Alcensa [alectinib], an oral medication. 

He had success with Alimta for 30 months straight. It is no cakewalk, so somebody get this guy a trophy. I’m pretty sure he set a record anyway.

Despite the success, together with Dr. Kumar, we chose to have Dan begin taking Alcensa because his chronic infections were getting increasingly tough to manage and affecting his quality of life. Last year, Dan endured six months of recurring cellulitis with two hospitalizations for drip antibiotics. He has had five months of the infection so far this year with multiple outpatient drips and constant, increasingly stronger, oral antibiotics. My fear of an antibiotic-resistant super-infection began to really stress me out and Dan was tired of it all on top of chemo side effects every three weeks.

While there are patients who only have the option to stay on Alimta, Dan has a few more. So we are more than astoundingly grateful.

[Disclaimer: I’m going to go into these options and if that is boring, you can just skip ahead.]

He is one of the 5% of patients with adenocarcinoma NSCLC who have the ALK gene, and there are several targeted medicines for it, referred to as “ALK inhibitors.” The medicine turns the gene “off” to temporarily stabilize the cancer. The first of these, Xalkori [crizotinib], was developed by Pfizer and approved by the FDA in 2011. I say “temporarily” stop the cancer because the cancer inevitably resists the medicine. Because of this, Novartis developed Zykadia [ceritinib] as a second line treatment, offered in 2014 after only a mere three years from clinical trial to approval. (This year, Zykadia was also approved for first line treatment.) Along with Zykadia, Alcensa [alectinib] was developed by Chugai (Japan) and then also fast-tracked in the US for approval in 2015. That is the one we are going with first.

I want to emphasize; Three life-prolonging medicines were developed and approved for Dan’s specific cancer within four years. That is crazy.

 Alcensa – structurally – there it is for any of you science nerds.

Anyway, once the financial aid was approved, we took the leap and Dan took his first dose Friday, October 6th. So now we wait to see how/if it works and what side effects he will experience. Three weeks in, it is the usual suspects–fatigue and constipation–but no nausea. Edema continues, which increases the chance of cellulitis, but so far so good. His is still on his daily antibiotic. He will have blood draws every few weeks to keep an eye on the usual numbers as well as new liver and muscle enzymes to watch.

And that’s the latest! More soon about what we’ve been up to and how Raine and I are doing. Thank you for taking the time to read this and for keeping us in your thoughts.

Podcast: “Fighting Cancer” from TED Radio Hour

At certain moments in time, I do like reading books, listening to podcasts, or watching documentaries related to the science of cancer. It is helpful for me in mitigating the anger and depression while knowing loved ones who died, are actively dying, or living precariously with the disease, like Dan.

For someone who completely hated the subject of science in school for 20 years, I really am fascinated by it now and really geek out often with certain subjects. Expect me to share what I find–good or bad–more in this space.

I listened to this podcast today, Fighting Cancer, while driving to and from work. I like to hear the individual voices who are in the science labs and doing the tedious research and problem solving. You will probably never be surprised that they are nearly always motivated by personal experiences with cancer.

This one gives a good glimpse at a few of them. And they also impact Dan and his type of cancer directly, so it is comforting to hear about the work being done. Even if it isn’t enough, or quickly enough…It is just good to know.

Medical Update || Spring 2017

Hospital care, having Raine's bag and car seat ready to go for a sitter, dinner arriving in a box

The prelude to winter began with Dan’s hospitalization November 1st. I spent the day wrestling with my intuition that I needed a significant break–things were getting to be too much and I felt super fragile. I talked to the HR manager at work and decided to take a leave of absence for the month of November. I came home and told Dan, only to discover he was developing a fever. I needed to take him to the ER so my abrupt decision suddenly seemed genius. Honestly, I felt like I really couldn’t put a price on the relief I felt to not have to call in and get a shift covered for the next day at 7:00 a.m.

Millenium Park "Bean" photo by Dan

 Dan spent 8 months since April 2016 struggling with recurring episodes of cellulitis in his right leg every month. It wouldn’t have been so scary if it didn’t have the possibility of a deep layer infection (flesh-eating strep for example) or  overall damage to the lymphatic drainage system due to the chronic nature–especially because he has a slightly compromised immune system and he seemed resistant to certain antibiotics. So obviously it didn’t take much for me to get him to the ER at the very first sign of the infection. For crying out loud.

As fragile as I felt that day, you would never know it. I immediately go into autopilot when needed. I examined the leg, called the doctor, packed a hospital bag, woke up Raine and took him to Rachel, drove Dan to the ER, and helped communicate his symptoms, needs, history, and meds to the nurses. Then I stocked up on snacks and drinks that Dan likes and turned on Neflix on the laptop so he could watch something while we waited. I left just before they admitted him at 2 a.m. and returned home to sleep before picking up Raine and taking him to school in the morning. After that, I loaded up on caffeine and packed Raine’s babysitter bag, fed the pets, and returned to the hospital.

I’m not going to lie. I am still traumatized by the first few days of his symptoms, admission and transfer to the hospitals, and the devastating diagnosis we were given. I have a little nip of PTSD, and when I need to go to the hospital, or Dan makes a strange noise from another room in the house, or really, anything seems odd–I am on high alert. I think most of you who have experienced these sort of medical traumas or any other trauma due to death, military duty, natural disaster, or abuse can empathize. Our bodies sense that trigger and we can’t always predict how we will react. It all happens in our bodies so fast. So far, I get super competent and organized. (And then there is a disastrous aftermath where I eat too many cupcakes, cry for days and can’t leave my bed, or drink myself into an oblivion). Or my body releases adrenaline and I mentally have no idea what to do with it. There might be twitching, raging, or crying. Who knows?

Good times in Chicago with brother Doug and bestie Art

NOT TO BE SUCH A DEBBIE DOWNER.

Dan has had a pretty enjoyable winter. The cellulitis hasn’t returned for the past 3 months. He packs in a lot of fun into his schedule when he isn’t down and out after chemo rounds. He is taking full advantage of seeing friends who fly into Chicago, his brother and family, and friends here in central Illinois. Not to mention me and Raine–He gets a dose of us everyday and usually the pros outweigh the cons. Ha!

Also, every three months Dan has scans to monitor previous tumors and potential new ones–it initiates major scanxiety and it’s no joke. Recent bummer news and losses in the small NSCLC community we are a part of further discouraged us recently. However, upon the most recent review, March 1st, everything remains stable.

[High five!]

If you would like to be hands-on helpers, we now have a Caring Bridge account that lists tasks on a calendar as requests for help. Check it out. It’s in early stages but I’m trying to update it daily. My blog posts related to his condition will also be copied to that account.

Guess What? I'm Still Here. And It's February

I ended the year 2015 with a bit of a bitter back glance (and a secret note to the future that I had better not get any more s**t.) This might come as a surprise because I talk so much about joy, gratitude, and hope in my writing on this blog. The truth is, after a year like 2015, full of a desperately sick husband on chemotherapy, a mother increasingly lost to me in the impenetrable fog of her own mind, closing two businesses that I started in good faith, crushing financial problems landing us in the office of a bankruptcy lawyer, and essentially pushing myself to the limits of my own strength in heart and mind–and then imploding into mania and depression, I was DONE.

Goodbye, 2015. I need a change.

2          0         1           6 .

It feels open and ready, gentle and generous. Each day is 24 hours of opportunity: chances to make decisions that encourage new ways of thinking, new ways of living. I am embracing that sense of freedom and cultivating peace and generosity toward myself. I am also taking some leaps of faith to align my values with day-to-day life. And guess what? It is so empowering! One little change leads to another, and another, and, before I know it…

Y         E         S .

This is living life. 2016 brings change that is soft and rewarding–but not without heartache. However I can say that my bitterness has evaporated, so my heartache can be teachable. This is all we can really ask for.

It does help that we are all medically doing very well! A recent visit with Raine’s pediatric urologist (for his condition he was born with–Non-Obstructive Bilateral Hydronephrosis of the kidneys and ureters) revealed that the concerns we faced 6 months earlier are now unwarranted. In fact, the improvement for Raine’s kidneys and ureters (all FOUR!) was so tremendous, they put us back on a schedule of just yearly check-ups. (Hurray!)

I am finally in the hands of a proper psychiatrist to manage my meds. Per her indication, I have a revised diagnosis of Bipolar I instead of Bipolar II. (I guess? I am not sure I agree...) She explained that I was born with this and we can see that rapid cycling was triggered as young as early childhood–about 6 or 7. Today, I am cruising along well on a combination of Lamichtal/Cymbalta/Trazodone and with her expertise, we are tweaking the dosing as we go along so that we can reduce my euphoric episodes as much as possible, without landing me in severe depression. I have missed meds on several occasions in the last four months and the significance is astounding. I know that I absolutely have to medicate in order to be healthy enough to take care of myself and my family. As I learn more and more about my condition and apply that lens to my life experiences, I can do nothing but grow by leaps and bounds in both understanding of myself AND having compassion for myself. This is a departure from my life-long habit of mental and physical self-blame, shame, and punishment. Of course, no need to go into great detail. Essentially–my diagnosis explains so much and ultimately brings me great comfort. Counseling helps Dan and I address how to make the best decisions for our family (and each one of us) with regards to my health. We have switched roles just a little bit! Luckily we have the same counselor we began with, who specializes in individuals and families with an advanced cancer diagnosis. This has helped us make further changes based on my limitations and taught us how to communicate better. I am working again, part-time, and focusing on a pretty tight regiment of sleep and wake times, meal times, and medication times. It sounds restrictive but I find assurance in what I believe is the simplicity of order. Clearly Chaos–even when extraordinarily beautiful–wasn’t working for me before.

Dan’s cancer remains stable–no change whatsoever–by evidence of his latest set of scans. These are expected results for ALK tumors that have had first-line treatment with Cisplatin followed by maintenance with Alimta. However, Dan is charting 2016 off the map. He’s outside the box of norms for his diagnosis and treatment. We can no longer compare him to any other previous patient “like” him. This is beautiful and brings great hope. He will complete one year of maintenance chemo in March, with no reason to stop. Dr. Duffy emphasized that with no indication of even the slightest change in the locations of his tumors (which we presume to be all necrotic, right?!) and the sight of otherwise healthy lymph nodes, organs, and brain tissue, his next scan or two will be no cause for alarm (a vacation from scanxiety?) Dan is competitive and couldn’t help himself from asking her if he set a record. She laughed with him and revealed that her only patient to last this long on maintenance (before the cancer activated again) was 12 months. He pumped his fist and cried “Yes!” I assured him there would be no trophy for this type of thing. Dan pushed further: “What about your friends here? Can you ask around?” Dr. Duffy explained that the other oncologists don’t utilize maintenance chemotherapy in the way that she does. “OK, how about the East Coast?” He wanted her to text Dr. Shaw and find out what her record is. I laughed and laughed, trying not to resist it. Cancer providing us an echo of silence in our lives gives us a levity we grew unaccustomed to. It’s not a blessing you ever expect to be grateful for–but here we are.

Somebody get this guy a trophy.

World Lung Cancer Day 2015

Yesterday was World Lung Cancer day. We spent it letting Raine play at a park. He ran and jumped and squealed and shouted. There was a sand pit with a “mountain” that he fought hard to climb up to the top of…over and over again. Sometimes older children held his hand and ran with him up the mountain and helped him. (What sweet children). Sometimes he did it all by himself! Then he’d launch himself down again to the sand. There was a play train he poked around in, sprouting fountains to run through, and a super mega playground structure with three slides and rope climbing. Pure kinetic joy. Dan and I shuffled from bench to bench while we watched him play and I enjoyed the stillness of my body cuddled next to Dan’s.

The internet was buzzing with updates and stories sharing current experiences and honoring others who died. I read a few articles and blog posts. I resisted the urge to do much more than that. I started to write this post yesterday, but stopped. I watched TV, helped put Raine to bed, and drank an extra beer. I often still resist being a part of all of this.

And again, it is scan week; a worrisome few days. I feel lonely and tired. Dan will have a CT scan and MRI Wednesday to check the cancer. This will be his first MRI since February when they announced the necrosis of his brain tumors. There is a misconception among friends and family that Dan is in “remission” and I do not wish to burst any bubbles, but this is a cancer that has no remission. Even if his doctor used the word “remission” at some point in his future, which would be unusual, it isn’t the type of remission that I think we all picture in our minds: Free of disease. There would still be tests, medications, side effects, and the damage that has been done. Not to mention a sense of inevitability about the cancer activating again. Dan’s type of cancer–ALK NSCLC–has relentless growth and overcomes all obstacles that modern medical and alternative medicine puts in its way. We are always waiting for the other “shoe to drop.” There will always be bad news; given to us in small white offices, among medical supplies and flat landscape photographs in cheap frames, while I fight back tears. No matter what. I don’t describe this to be a Debbie Downer. I describe this to give an accurate portrayal of how lung cancer affects the family. I would never wish this experience on my worst enemy. It is brutal and heartbreaking.

On the other end of the spectrum, we have to live in hope to survive. We have to scrounge up whatever seeds of optimism we can and water them with a bit of true  dedication. The medical advances for lung cancer are phenomenal despite such pitiful funding. Dan is benefiting from tremendous improvements in understanding lung cancer and treating it. Just EIGHT years ago, his cancer gene, ALK, was only discovered! The medicine developed specifically for ALK are going to give Dan more time, and more of that time without debilitating treatments. His story does not have to end with a stage IV diagnosis; he can continue to watch his son play, and romance his wife, and poke around his garden, and fill his mother’s heart with delight.

The science. The progress. The hope. It is bittersweet to have a day set aside for this disease. It robs so many people of life–more than any other type of cancer–but it truly needs more attention. Imagine if the stigma around lung cancer was removed, and support for lung cancer research was increased! We could save so many more lives and extend the lives of patients like Dan. Not to mention the amount of progress that could be made in preventing cancer or educating everyone about radon and carcinogens, keeping lungs healthy and treating asthma or COPD–as well as early screenings for higher cancer risk individuals and their family members. Above all: Remember that this is NOT a “smoker’s disease.” If you have lungs in your body, you can have lung cancer, and no matter how healthy you are! Please just Be. Aware! And certainly do not judge a person who has lung disease, including cancer, because they smoke or smoked. I hope you will be inspired by Dan and I and focus on loving and respecting others.

{To learn more, visit sites with up-to-date information like American Lung Association, Lung Cancer Alliance, or Lung Cancer Research Foundation.}

June Recap

June was a bit of a blur, awaiting Dan’s CT scan, awaiting Dan’s results, and blowing off steam afterward. I’m so sorry to have left everyone hanging after my announcement and no follow-up post! For shame. {I hope you all concluded that no news is good news!}

I recently read “10 Tips for Coping with Scanxiety” by Tori Tomalia, a two-time cancer survivor currently living with stage 4 NSCLC. She contributes regularly to Cure, where the tips were posted online in February this year. (I found her through Facebook friends, where she is cleverly known as A Little Lytnin’ Strikes Lung Cancer.) I am the caregiver and not the patient, but her descriptions of anxiety related to scans are spot on for me. I don’t feel like I can actually be held responsible for anything I might say or do the 2 weeks leading up this scans. It is a very strange situation of heightened irritability, emotions, and crabbiness that Tomalia likens to PMS (she calls it “PSS: Pre-Scan Syndrome.)”

I escape into myself. I basically just shut down and cannot work or complete projects or think straight. I do everything on Tomalia’s list–including binge watching TV, cranking music, planning for a worse-case scenario, and medicating. I also frantically rearrange furniture and empty closets, as if Oprah is going to walk into our home and bring her TV show back from quietly resting in peace JUST to assess my decorating and organizational skills. I mix up extra strong cocktails, search for any excuse to shop, and eat all the vegan cupcakes I can get my hands on.

I believe Dan suffers a supremely mild version of PSS, and just focuses on work to alleviate it. However the anxiety this time was creeping into Dan’s mind more than usual. We both felt as if the time on our litte good luck clock was winding down. It has been three months of stability on Alimta, and we felt overly blessed by this. Was its time up? Sure, when Dan started, we focused on 12 month success stories, but when you get into the thick of it, 12 months feels impossible. We were afraid.

We had the opportunity in early June to have a real escape to a little vacation resort in south central Oregon known as Sunriver. What surprised us greatly was that there was no “escape” from our worries. In fact, Dan’s dread seemed to be magnified by the change away from his normal routine and the buoyant company of “normal” (our term for non-cancer-devastated) families all around us enjoying bike rides, swimming, hot dogs, and hiking. (I did point out to him that we never know what other families are dealing with: We look like a completely normal family to a stranger. But statistically…We know we are special.) Dan felt chided by the fact that we weren’t there vacationing of our own accord, but rather, we were donated a trip by an organization because he had cancer. I’m not sure if it stung his pride suddenly, or the entire weekend of heat and non-stop 24/7 of a 3.5 year old just wore him down and he felt the PSS like never before. Regardless, what I am so grateful for is this: He could talk to me about it. He could acknowledge the hardest thoughts and share them. Tomalia’s #3. I describe this tip as:

By the night before his appointment, we were pretty exhausted. We went out to dinner at Plate & Pantry and shared some BBQ pizza. I talked too much and Dan was very quiet. I thought he was tired and bored hearing me babble, but he made sure I knew how much it meant to him to have time with me without Raine interrupting us. Now that he is back to work full time, we just don’t have as much time together. {So thanks to all of you married couples out there who do date nights faithfully every week, because we are going to give it a try! You inspire us.}

Of course, we were able to end June in celebration together when the news came back that the cancer remains unchanged. He will have scans again in 6 weeks and he will continue with Alimta every 3 weeks. His bloodwork also remains good; he continues to take his trial medication. So, he proceeded with chemo but still had energy (thanks to his further stabilizing anemia) to enjoy parts of our hometown festival, Carlton Fun Days, with Raine and me. I relished the family time back in Carlton, full of relief and gratitude.

Medical Update

Hello, friends.

I write to you this afternoon from my kitchen table with Sufjan Stevens playing and my laptop flanked by a glass of 2014 Giovanni and a small bowl of tiny blueberries from our yard. It’s not a bad June afternoon.

Which reminds of one of Dan’s all time favorite songs… "June Hymn" by The Decemberists

Dan is doing very well. We are 9 months post-diagnosis of stage IV lung cancer (metasticized NSCLC Adenocarcinoma) and feeling very grateful for his subsequent ALK genetic diagnosis because we feel gifted with more time than we would otherwise truly be running out of. We were given a family getaway to Sunriver Resort by Seeds of Hope and enjoyed a long weekend the last four days just enjoying private time for the three of us (a post on that to follow soon).

Dan continues to have maintenance chemotherapy sessions every 3 weeks and scans to check the status of the cancer every 6 weeks. His next scan is in 1 week. I will write an update. I’d like to say that we manage to rise above the jolt of regular scans, and not live life according to them, but it is easier said than done. For the most part, Dan focuses on work and the regular routine–doing what needs to be done and obeying all of the worried women in his life (wife, mother, sisters-in-law, nurses, doctors, LOL), as well as monthly counseling.  I have taken up jogging, pilates, and counseling sessions. We also focus on Raine and our special time with him. This is the best we can do to manage anxiety and fears. (I also do a fair amount of retail therapy.)

Dan is doing the best physically that I have seen  him since his diagnosis. (Hurray!) The aftermath of his pleural effusion, radiation treatment, and first round of chemotherapy treatment (cisplatin being the worst offender) has only left a small wake of chronic fatigue, peripheral neuropathy, and a head of fluffy hair with a bald strip on top that Dan refers to as his “reverse mohawk.” His red blood cell counts are maintaining longer than before, trending higher for longer each month. This means less blood transfusions and more energy for longer work days and playing with Raine. He even cooks and mows the lawn again.

It is safe to say that we are emerging from our cancer-diagnosis bubble and realizing the world just keeps going–spinning, evolving, humming–and there is enough catch up to do. We need to tour preschools and decide where to send Raine in the fall. Our lease with our tenant on our condo ends in two months and we need to use that opportunity to sell the property. I closed my business selling LuLaRoe in February but failed to get to all the fine print and tie up loose ends. So I’m tackling that as well as slowly starting a graphic design business, Herzing Design Haus, (details coming soon). I’m waking up to phone calls about medical bills and realizing my paperwork is a disaster all over the place and I never got financial aid apps completed….Cringe. Our fundraising money is almost gone. I’ve noticed that on my To Do list for the past 9 months, I’ve had only 1 item that never managed to get crossed off: BUDGET. I promise it will happen this month.

Neighbors and friends of friends have also been diagnosed with cancer. We donate to other web sites. Family and friends conceived babies and are due this fall and winter. We are realizing it is time to pencil in some quality travel time now that we successfully went to Sunriver. Next up: The beach, Crater Lake, Disneyland, and Europe!?

Summer is here with a cry of sunshine, a generous garden of vegetables and herbs, and enough festivities and celebrations to keep us busy on the weekends for three months straight. I don’t mind–Dan feels good. Let’s live life.

What I am planning to do next with this blog is chronicle it all a little bit more timely and concisely. I have received such positive feedback about my writing and sharing, that, combined with my use for it as coping and processing, I feel lead to bring things up a notch on this site and dedicate more of my time to blogging and possibly earn income for it to help us.

SO. Expect a complete redesign within two weeks and regular posting to begin in one week. Please, please, please, if this blog has been of value to you, SHARE it!!! And COMMENT on the blog. [If you follow links from Facebook, resist the urge to comment on the Facebook link. I will receive better sponsorship if my stats are good based on comments on the actual site. Also, it feels more personal and lovely to me. :)]

More to come, very soon…! Thank you for all of your support, lovelies.

Eight Months

I took this photo for Instagram, 34 weeks ago. The caption was “Quiet noon hour.” Four friends of mine ‘liked’ it.

It wasn’t the only photo I took that afternoon of myself. I was in the business of taking selfies back then. I took selfies or made Dan photograph me constantly to promote the clothing that I sold. Here, I was wearing a kimono that I wanted to feature, so I had been snapping different shots to feature it in the hazy overcast afternoon light coming through the window of Dan’s first hospital room.

He was in his bed, probably working on his phone. I was taking selfies and fidgeting. We had no idea what was going on. We thought he had pneumonia or major allergy problems. Or some kind of random infection that they would could prescribe an antibiotic for and send him home.

However I felt in my gut something was about to change. I snapped this photo, to just capture myself—not the clothing—for some reason that I couldn’t pinpoint other than a vague desire to have a “last” photo of me. I felt slightly over-dramatic and foolish. But after I took the photo and uploaded it, I started googling inspiring quotes about HOPE.

The first doctor to mention cancer came in that afternoon to speak with us.

So there is something to be said for intuition.

Tonight we had a quiet evening at home but when Dan headed to bed at 9, I wasn’t ready yet.

I turned on music and put on a new dress and a little makeup, and sat out on the front porch with a glass of whiskey. I wanted to enjoy myself but I felt alone and tired.

I walked back inside and sipped my drink. My phone had a text message light up.

“I love you.”

A tight ball of sadness in my chest rose into my throat and I swallowed hard. Waves of tension spread across my shoulders and up each side of my neck. Tears stung the corners of my eyes—and I know that is very cliché to write, but honestly, when tears sting at the corners of your eyes, there is just no other way to put it.

I texted Dan back that I loved him, too.

I refused to cry, so I let the stinging in my eyes subside and all of the tension simply swirled in my torso, trapped.

It is not daily but it is quite often–I periodically need to process it all again. The cancer changes everything. I am changed. I am a trembling rhythm of misplaced sorrow, anger, unknowing, and hope. It goes, and goes: await, unlock, release, revise, whisper, weep, rage, allow, and mend. There are days that I feel up for it; there are days that I don’t.

Eight months have passed since his diagnosis and he is still alive and the worst-case-scenarios are effectively being proven not ours to bear. But I did carry them, as possibilities, as potential seeds in my pockets–such tiny but heavy burdens–for days, weeks, and then months at a time. We just didn’t know for a while…

And then we did know. Treatments worked and genetic testing results shined a beam of light onto calendar days stretched out further ahead of us–next year, the following year. I eavesdropped chat group conversations online where patients who took ALK-inhibitors had no progression of disease for a substantial amount of time. Possibilities for Dan are lining up on the market and in clinical trials: crizotinib, ceritinib, alectinib, brigatinib, etrectinib, PF-06463922, TSR-011, CEP-37440, X-396.

Here is my deep, dark, awful secret that gives me grief: It’s not enough. It is not enough for me and what I want with my husband. I want so much more, so much beyond what these drugs could give us. Even the alternative treatments we are doing–I have no way to know what they promise. Have they worked? Possibly. Will they continue to? I don’t know. I still want more than I am being given. I have wept with greed.

What is saving me is the generosity of moments when I can still go to him, and receive comfort or just rest beside him. I use touch to help mitigate the pain. I liberally feel the new parts of him… Quiet pillows of thin skin below his eyes, puffy with fatigue and sinus inflammation. The uneven patches of hair I am memorizing: sparse and prickly across the top of his head, downy gray thickening quickly all over, and the dark brown stretch at the nape. The port nestled on the right side between his clavicle and shoulder–a hard, square knot like a calcified cyst–so tender after surgery but now accustomed to my resting brow. The hollow dip of his stomach when he rests, all the fat of his belly gone, with a sternum and ribs raised like canyon peaks, massaged by my curious fingers.

Can we keep going and find a way into chronic management of lung cancer? Can the drugs keep developing and give Dan an extended life with disease? I feel fortunate to even be asking these questions eight months after his diagnosis. And yet, I haven’t found my peace with it all. Does one ever?

Medical Update || The Left Lung + Platinum Chemotherapy

Let me do my very best attempt to bring you up-to-date with Dan’s health. Warning: Long post...

After the last CT scan, we did in fact proceed with two more platinum chemotherapy infusions (pemetrexed, ruxolitinib, and cisplatin) -rounds 5 & 6. After round 5, he was bed ridden for a week. His taste buds and other fast growing cells continued to struggle at the assault and he lost his tolerance for more food–cheese, garlic & onions, potatoes, for example. I tried not to worry as I woke him periodically for his meds, water or juice, and small bits of food. It was difficult to get him to eat much at all. One night I woke him and he could only manage 4 baby carrots. He lost ten pounds that week. I bought whey protein and added it to smoothies. I tried to get adventurous and add it to any snacks I could–fruit yogurt or spaghetti-but even the unflavored powder bothered him with a distinct taste that only he noticed.

His strength and endurance slipped away as he slept each day. A typically warm blooded guy, he now felt cold constantly and wore blankets and hats day and night. He grew so pale. Raine and I brought colds into the home but luckily Dan only caught very mild versions. However he has had trouble hearing in his left ear from the congestion and it hasn’t gone away. We were finally able to get him in for a blood transfusion the day after his 6th infusion (2/21/15). His level dropped to 6.9 and they typically offer transfusions at 7. It was disconcerting to watch him drop that low but I was so relieved to see color return to his face after he was administered two bags of blood. The combination of the additional blood volume and gratification knowing it was his final treatment with cisplatin seemed to give him some extra pep going into his recovery after the 6th round.

The dizzy spells he was having stopped after round 5 and we are encouraged that this could mean that they were more likely related to the blood volume/anemia issue with over-exertion and not his brain lesions. Of course, we always have to scan the brain to check things out and be sure, so an MRI was done February 1st and he is repeating it again today. The findings last month included:

Signs of possible bacterial infection, signs of possible new cancer OR blood clots/bacterial infection, stable tumors with improvement in his left frontal lobe where he had swelling (inflammation) due to the tumor dying/shrinking previously, and signs of softened/destroyed brain tissue.

We will know more about the status of each of these issues this Friday when we discuss the results of today’s MRI. At this point, the medical team has agreed that there are no signs of anything unusual given his condition/treatment, so we are just hoping everything has remained stable and that they can explain to us any necessary implications to consider with regards to his brain that hasn’t been fully discussed so far.

As a side note, Dan’s hair is growing back in and is very fuzzy and light (we have yet to figure out if it is gray or blonde) with some thicker dark patches growing more quickly. 

As for Dan’s lung. We had an appointment with a thoracic surgeon in February and were disappointed to find out that he can’t have the surgery to seal his lung to the chest wall and prevent further fluid accumulation. The best analogy I have heard to describe Dan’s lung is that his chest is like a glass bottle, with a balloon inside, and the balloon has a little bit of duct tape spread across the balloon, conforming it to a tight shell. The balloon/lung is awfully small and constricted. Of his 100% lung capacity, the surgeon estimated that Dan is operating with 60% due to that reduced left lung (probably operating at 10% itself).

As far as his lung capacity in day to day life, Dan typically feels well, but certain tasks make him short-of-breath or he would not be able to complete them at all. For example, he would not be able to walk 18 holes of golf or carry Raine up a flight of stairs. The surgeon asked Dan if he thought he could manage 9 holes of golf, to which Dan replied “Sure,” so the surgeon gently commented that he should be glad for that. It surprised him that Dan could even walk from the parking garage to the medical office without getting winded. This surgeon (who is all too familiar with lung cancer) examined all of Dan’s x-rays and imaging and felt that Dan’s stamina and performance was “remarkable” –indicative of his young age and great health.  (So let that be a lesson of good exercise and nutrition.)

It was a little difficult to adjust my mind to the status of Dan’s limitations as not being limitations that we would have removed (so that he can get back to normal) but permanent.  This is my healthy, strong 37 year old husband. I felt like the reality of his illness hit me all over again like a merciless crashing wave. Oh, right, this is cancer and it has damaged him and it will never go away. This is so unfair.

I cried during that appointment; I felt completely unable to let the tears stop.

Now, 4 weeks later, I am focusing on what he is able to do, and how much better that will be when he is further healed from the platinum chemo. We are almost 3 weeks post-infusion and he has been able to go back to work for short days, help play with Raine and put him to bed, and continue to do some chores around the house–all in VERY small doses. (Trust me, I am like a hawk!) He remains slightly anemic but his appetite is good and some of his taste buds are changing back, so he succesfully had pizza and pierogi last week!

We will know more about the status of the cancer on Friday when we discuss his CT scan results. Our hope is that everything has remained stable and he can start maintenance chemotherapy (pemetrexed–standard for advanced NSCLC and research shows good for ALK) on Friday to keep the cancer from growing again/spreading further as long as we can. Dr. Duffy estimates another three weeks and he will start to feel much more like himself again, because the low dose of pemetrexed that will be administered moving forward should have minimal side effects. (Thank goodness!)

I will write a post on Friday to let you know what we find out!

P.S. THANK YOU to everyone who has been volunteering, sending care packages and cards, donating money, and encouraging us. I wish I was able to thank each and every one of you in person! Please know that we value every donation and act of service. You can continue to use our Wish List, GoFundMe, and Lotsa Helping Hands. These have been miracles for us–in addition to the early Spring here in Oregon.