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!

Seven Years Living with Cancer

How hot is this guy?

Today, on the first day of October, I caught myself and realized not only have I not shared anything for months on this blog, we also passed Dan's 'cancerversary' last month without any fanfare! Of course, there were definitely celebratory drinks when Dan's scans came back stable again (!) Thank you, Alcensa. Thank you, Genentech. Thank you, scientists. Another round of scanxiety put to rest. We will go through it all again in February.

Good news!!!

The actual anniversary of his diganosis on the 18th found me exahausted and going to bed early during our camping trip. What a party pooper. I was disappointed in myself because I had great plans to celebrate with our neighbors over the campfire and even brought plenty of libations and a "7" sparkling candle. But when you need to get some sleep, you need to sleep. And Dan and I are very generous with each other on that point. He needs daily naps taking Alsenca. And I need them too! I don't have the cancer reason but with my own health problems, I take them. And like I have said before, I will never in my life look back at this time in our lives and regret being at home with him. I will never regret a single nap we took together. If someone wants to make me feel guilty for how I have approached things....staying at home and not working....Their opinion will never matter to me. Or so I tell myself. I do feel guilty for not working...Aren't we our harshest critic?

Camping/boating at Apple Canyon Lake - Livin' the life!

Dan's day-to-day life post diagnosis, seven years later, is a routine built around practical matters and occasional fun. He wakes every morning to get Raine ready for school and provide him with the cereal or pancakes that give him his life juice. Dan takes Stormy for a walk and to the dog park, where he socializes with fellow dog owners in their weird small talk dog-owner world (but he enjoys it). He also takes Stormy to the dog park in the late afternoon and then is home to cook us dinner. Lately he has been spending those afternoons on landscaping work with quite a full schedule, and always spends a day each month substitute teaching at the high school. (As a reminder, he isn't able to work too much or the pay will come out of his social security income). Such details are frustrating but we are grateful for what we are given after his decades long career. When he can sneak away, he golfs, goes to concerts, and gets together with his friends. Most importantly he gets to get out, has purpose, and feels joy in life! 

**I was recently asked what advice we have for others because Dan's cancer has stayed stable for so long.

There is no miracle diet, exercise practice, or even the ideal frame of mind going on here. There is no perfect way to rely on a higher power, and especially if you aren't relying on that higher power 'correctly,' they are letting you hurt. I also never want Dan-or any cancer patient-to carry a cross for their own "win" or cure. You can not control the disease and certainly you don't need to be labeled a "fighter" in a "battle" if you don't want to. You are human and just be yourself. The disease will do what it does or not. 

I hope for every patient that their loved ones understand this and don't put any pressure on them. My honest opinion is the best thing a friend or family member is support the patient in the fact that they don't have control. Help them feel loved and cared for...Because learning something is out of your control is painful.**

What else is there when I consider where we are seven years later...?

We are stronger than ever. There is nothing like a terminal medical diagnosis to challenge the strongest of marriages. I personally know people who saw their relationships end in divorce. What maybe no one would expect is that his diagnosis brought out my strengths but exacerbated my weaknesses--namely my own medical issues. Sometimes I can't believe I am able to operate 'normally' as a person with Bipolar Disorder, Fibromyalgia, PCOS, and Hypothyroidism --thank the universe for medications --- and still feel like I am a capable caregiver and emotional support to Dan. As my weaknesses were stretched to their limits post diagnosis, Dan learned lessons he avoided throughout our marriage about my conditions and what he needed to do to emotionally support me. Three years ago he participated in a group for people who have family members with mental illness. It changed everything. He understood me and my illness in a new way and learned how to better support me.

Cousins and bros!

We have learned over and over again: Take the trip! Make everyone you love feel special! Focus on what really matters to you! It is cliché but we all know it: Life is so short. And not only did Dan's diagnosis teach me that in a new way, but losing my mother young to liver disease a few years ago certainly did. LAUGH AS MUCH AS POSSIBLE. Even through grief and struggle. It saves us. We are lucky that we married because we are both funny to each other. Well, and we liked kissing and stuff, too. REMINDER: make everyone you love feel special. 

Just as we have celebrated Dan's scans, there are people we know and some that I have followed on social media in our cancer bubble and they have passed away in the last two weeks. It hurts. So much. 

Live your one and only life to the fullest!

Raine. At age 10, I think he STILL does not quite understand the impact of Dan's cancer and he doesn't quite know it is "stage 4" or "incurable." It is just normal that daddy has cancer, like his vertigo. It's just the way that it is. Raine will even argue having vertigo is worse than cancer...! He sees the effects of vertigo daily. The cancer...Not so much. The irony is that the chemo and/or radiation caused the vertigo but I don't think I ever explained that. Despite the fact that Dan can't ride a bike or swim in the lake with Raine, or play proper basketball (the extensive steroids lead to shoulder surgery a few years ago and he didn't regain motion 100%) Raine doesn't care! He adores his dad. He still sits in his lap, talks his ear off first thing in the morning, trusts him to take care of him, and laughs at his jokes.

Weirdo!

Thanks for reading, friends. We appreciate you. If you ever feel so inclined, do drop a line and say Hi. We can still use all of the support we can get!

Interview with Dr. Alice Shaw

Excellent q+a with Dr. Alice Shaw--a legend in the lung cancer world.

This is a great summary of recent trends in ALK NSCLC.

 Read the transcript here or watch the video on YouTube!

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 || Shoulder Surgery & Radiation Results

We spent a Saturday evening in Chicago celebrating the 40th birthday of our bestie, Corey. (Shout out to Corey! He is the reason we ended up dating and getting married.) Dan had just enough energy to live it up and enjoy being with friends.

So this guy likes to keep me on my toes. Wednesday Dan will have surgery for a complete shoulder replacement. First thing I know is that his shoulder hurt while he golfed, and then all of the sudden we are in for a matrix bionic shoulder!

Ok, that might be extreme, but I have seen the sling he will need to use and it kind of makes him look like Robocop anyway. I am anxious about his recovery. He has had some serious fatigue the last few weeks. I think it is a cumulative effect from being on a full three months of Alcensa. (Maybe radiation related too? It’s no cake-walk for the body...)

My primary anxiety is the thought of him getting any sort of infection during or after surgery, so just keep us in your thoughts.

During all of his pre-op appointments, Dan did follow up with our oncology team which included the radiologist. His bloodwork continues to be good on Alcensa. His MRI showed the round of targeted radiation three monthsh ago accomplished its task, so we are good to go for the next while. Go ahead and pop your champagne.

I am caught in an awkward place of loving this man with everything inside of me and also thinking of his physiology; the risks of everything and the impact of every decision. I know we are so lucky to even be able to address something that is a source of pain for him and allow him to have surgery. I am also devestated by the conclusion that the majority of the deterioration of his shoulder is due to the steroids over the past three years. Damn cancer. But how can I complain about one deteriorated joint? I grieve so often for young ALKs like Dan who have lost their lives.

This is a wild place to exist in–this stage 4 lung cancer reality. I often look at him and don’t realize what has happened—it is just him. But more times than not, I am taking it all into a full account. I risk sounding moody and gloomy for the fact that I feel I have to give an honest account of our journey. It is ours alone, after all. Just us.

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.

Medical Update || First Update in Illinois

Dan with his nephew JD, and Raine at Raine's birthday party

I haven’t written a medical update in a long time. I know I shared the details in My Mega Post, but I haven’t kept everyone informed after that. To be honest, after his seizure in February and the “your husband’s heart might collapse” scare in the beginning of April, I was running on empty and not feeling very eager to communicate because I didn’t feel very inspired about life in general, let alone our family’s situation. I mean, I had my moments, but they just weren’t woven together in my mind for me to later sit down and write about.

However, y’all deserve an update!  So much has changed. First of all, he has not had seizures since his seizure in February, and his follow-up echocardiograms show his heart is without substantial surrounding fluid anymore. High five!

Our new issue seems to be a stubborn infection. He developed a case of cellulitis in April, while we were visiting family in Illinois and making plans for our move. The hot, red, burning rash on the top of his right foot seemed to develop over night and within days it left Dan unable to walk due to intense pain. At an urgent care clinic in Bloomington, IL, a doctor suspected he had developed athlete’s foot and hypothesized that a tiny crack between his toes might have enabled the infection to take hold. And as a side note, the crack would have easily developed due to his chronic edema of the feet–which is basically a side effect of cancer. With a chronically diseased body, treated regularly with chemo like Dan’s, these things happen. It is just the new norm. Dan was prescribed an antibiotic and fungal cream, and managed the rest of our trip with the use of my mother’s cane. By the time we had to travel back to Oregon, wheelchair use and additional help at the airports was imperative. (We will never go through life again not fully understanding and empathizing the challenge of traveling as a disabled individual, especially a family with a young child / disabled individual / hot mess mother+wifey).

In Portland, Dr. Duffy was frustrated to hear Dan was dealing with such a painful case of cellulitis and delayed his next round of chemo to let his body focus on healing the infection. Dan’s last chemo infusion in Portland was Friday, May 27th. That last day, I felt desperately unsure about leaving the white room full of windows on the 2nd floor of the east pavilion at St. Vincent’s. I suspected Dan did as well. Was this big change the right thing? This was our safe place amid the storm, where Dan had the best treatment and care we could have ever imagined. And that treatment became as normal as waking and sleeping, going to work, coming home.

For that reason, Dan felt comforted by his first chemotherapy in Illinois. While everything was new and unfamiliar, sitting quietly in his chair and getting his infusion was an anchor. But before Dan could have his first chemo in Illinois, his new oncologist, Dr. Kumar, admitted him to the ER at OSF when Dan’s cellulitis returned and began spreading up his leg. I have never been so grateful for my husband to be admitted to a hospital. To have the infection spread up his leg terrified me. I had fears of his cellulitis spreading, damaging muscle or tissue, or entering his bloodstream. I think my relief and gratitude kept me from feeling completely overwhelmed to have my husband hospitalized only six days after arriving in Illinois (to an empty house, without a car, and a trio of discombobulated human/pet children…) And now, looking back on it, I can also see how having Dan in the hospital maybe felt a little cozy for me? I had to learn the route, the parking situations, and the general navigation of the new hospital, as well as sniff out the nurse staff and coffee/food selection–but really, for tough work, isn’t it a comfort to get that established right off the bat?

Dan with the best sister-in-laws ever! Rita and Rachel

At OSF, Dan watched TV and napped off and on (the poor guy didn’t have a new phone yet, post-move) while bags of antibiotics were continually pumped through his bloodstream. I couldn’t believe how much antibiotics he had. After three days, he was released and continued oral antibiotics for a few more days. Dan had his first chemo June 22nd and returned to his chemo chair in the middle of July, just in time to notice the cellulitis reappearing. He did another round of oral antibiotics and the infection cleared up in time for chemotherapy August 3rd. A week following, the infection was back. When he went in again last week, we discussed options with Dr. Kumar. I couldn’t help but feel so frustrated! Of course, I absolutely don’t love the idea of the long-term implications of his body getting pumped with antibiotics, but I also don’t want to change the course of treatment for his cancer. It’s a catch-22. And you have to focus on the greater beast.

At this point, he has been steadily treating the cancer with low-dose pemetrexed (alimta) for 17 months. This is kind of incredible, because, if you have been following along with me for a while and might recall, we only really expected to see it work for 5-8 months. (Wow, right?) So this is what we are sticking with. Now that we have established care with Dr. Kumar, our treatment plan has only changed in terms of evaluation. Dan will no longer have CT and MRI imaging done as frequently as we have in the past. For one major reason, he is no longer participating in a clinical trial, and then the minor reason of, you know, reducing the amount of radiation he is exposed to. (And I don’t know…When I’ve had a drink or two, I find this laughable. His bodacious body has seen so much radiation over the last two years, what could possible be a little more here and there?) That being said, Dan had his first CT and MRI for Dr. Kumar this month. All reports show NO CHANGE compared to his scans in Oregon, so his cancer remains COMPLETELY STABLE. (FYI –this is not remission. This means that all of the tumors consistently appear to be necrotic tissue and no new tumors have developed. For it to be remission, this would have to be the case without the use of medicine/treatment. I just like to clarify because often people approach me and praise that he is in remission. Hm. But also maybe those people don’t read this blog. Something to consider.) Anyway, this confirms that Dr. Kumar has seen no reason to alter the treatment with pemetrexed, which we are on board with at this point. He did propose that Dan take a small, daily dose of preventative antibiotic moving forward, however, to possibly keep the cellulitis at bay. We agreed. Now we wait and see…

Enjoying a game of pinata at Raine's party. Here, his nephew Logan gives it a try!

To speak to the whole character of Dan’s overall health, I have to say that he is doing incredibly well. At the appointment last week, I felt that Dr. Kumar sensed my exasperation with the ongoing infection, and he was very kind and optimistic to point out (at several occasions in the meeting) that Dan is really doing exceptionally well. Dan is also adapting to a completely new life with completely admirable ease. (I just don’t know what Zen gene he has but I WANT IT.) With my gentle coaxing and nesting, he is finding his fit into our new home, daily routines, and life in Illinois. And I am positive that there has been no greater medicine than what he is getting these days; time with loved ones–his grandmother, cousin, brother, and parents, as well as getting to know my family better, and developing new friendships. He is spending time with his passions–reading for fun, buying records and listening to more music than ever, drafting landscape designs for friends, drinking coffee and trying new beers, exploring the world of Mexican cuisine in central Illinois in the quest for the ultimate burrito, cooking and baking, having a closer, more in-depth daily routine with Raine, and letting me shower him with love and kisses and hugs and squeezes and compliments. 

Drop a line or leave a comment! He would absolutely LOVE to hear from his fans!!!

The entire Herzing fam together again! (Nate, Rita, JD, Doug, Char, Jim, me, Raine, Dan)

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?