DAN'S THOUGHTS (FACEBOOK POST)

 

Remember Raine's Fox? This time he shared penguins.

Dan's Thoughts - Posted to Facebook 3/23/24

2 Weeks……or 10 Years?

I took a similar picture almost a decade ago. Different stuffed animals, from a different state, but in the same spot on the bed as these. I spent two weeks with my penguins after a 10 year pause…..

We knew it would come back some day. My body was young, strong, and healthy when I was first diagnosed. Healthy enough to chase around a toddler around the rough streets of Carlton, OR. The outpouring of help from our family, friends, coworkers, and city jumping out to help this young g family hit with the worse news imaginable (Stage 4).

We hit it hard. Radiation and Cisplatin (the nasty of nasty chemo). Slowed it down. Moved to a weaker therapy, and then eventually were lucky enough to run across an ALK mutation that gave me an opening to a targeted therapy that had brought me almost 8 years currently.

When we attacked the cancer hard in Oregon, we knew it would be rough on the body long term. 10 years of MRI’s, CT’s, Gamma Knife Radiation, Chemotherapy options, Shoulder and Hip Replacements, Hearing Loss, Vertigo, Neuropathy, etc. Always hinting and celebrating little things like a clean scan (Scanxiety). I was able to enjoy an almost normal life of hiking, fishing, golfing, rocking out at concerts, playing ball with Raine, enjoying food, beer, cocktails of all sorts!

Pain.

Size of a walnut.

Under my rib.

I thought I seperated a rib after a coughing fit at Christmas. I’ll get it checked out.

Muscle Relaxers for 2 weeks. No real help other than making me constipated! I tried taking care of it over the counter, to no avail.

Pain

Into the hospital (3 ER and 2 Hospitalization). Suck 3 weeks of bowel stuff out of the body. Colonoscopy (needed one anyways - check!!). Finding……you have 2 ulcers that are causing the pain from inflammation.

Go home!!! No!!! 2 days later back with…..

Pain

Pressure from my wife, GP, and Oncologists……..MRI his back! This is not GI/Colon.

Scanxiety…..

Shadows……

PET Scan……

Active Cancer……

Time slows…..

Act.

That is what we are doing now.

Pain management.

Radiation.

Biopsy.

Treatment.

Genetic testing.

Therapies.

Like starting again like 10 years ago. Except Raine is now pretty much looking his mom in the eyes!!!

Brightside is once again our family, friends, coworkers, near and far, are lending their time, talents, thoughts, prayers, positive vibes, delicious food, and smiling faces to help is in this time of uncertainty and difficulties. The amount of people to thank is mind blowing!

My wife has been nothing short of amazing. She has been my advocate. She has been stronger than I have ever seen her. Taking care of Raine, Don, Stormy, and me! It exhausts her, but she keeps going.

She also is a way better writer than I am, so I leave postings and updates to her

Futurexiety……..

Help will still be needed but life needs to continue. Day by day move forward. Be positive. Smile. Walk Outside. Listen to some tunes. Spring is Springing!

Let’s do 10 Years………

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!

Bone Scanxiety

Dan hadn’t caught up mentally and I saw he was disappointed. Why an x-ray? It’s just his leg falling asleep when he is in bed at night – probably because of a pinched nerve in his back. However, I understood what Dr. Piers wasn’t directly saying–check the spine for cancer. I made the decision in a split second.

“I want the x-ray.” Get it done.

In the meantime, Dr. Piers prescribed Gabapentin at a low dose to try at bedtime for the pain. At this point, I don’t care that we are adding one more ingredient to his pharmaceutical cocktail. So be it. I am vehement that Dan gets better sleep.

Raine asked today what ‘vehemently’ means. WIFEY SAYS SO.

We get the x-ray results over the weekend and Dr. Piers tells me to contact Dan’s oncology team. Monday I get the x-ray to them and Dr. Kumar decides to do a bone scan. It was a long week to get the insurance approval and then make the bone scan appointment, but I can say that our teams fast tracked everything that they could and the OSF scheduler even squeezed Dan in for the scan as soon as she could. 

It took 10 days in all from the first appointment until the scan. Dan was extra tired and I was extra irritable. I distracted myself with a puzzle, rearranging furniture, obsessing over wallpaper options, and dove into finishing a 430 page biography on Dorothea Lange.

I also developed a habit of eating frozen fish sticks and watching war movies everyday.

We both would have bet all of our money on a new lesion. It just made sense… With the pinched nerve? We hadn’t even scanned his abdomen in over a year. We had only been doing chest CT’s and brain MRI’s. I felt like I dropped the ball.

Then the call came from Dr. Kumar’s nurse the day after the scan and THERE WAS NO CHANGE since his original lesions in 2014. THE CANCER REMAINED STABLE.

Honestly, I immediately only felt shock. I didn’t even feel relieved until Dan came home and I told him.

We hugged. And then I could feel the burden of worry lift up from both of us and float to the ceiling.

Onward.

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 || 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.

Our 3rd CT Scan

Today we discussed the results of Dan’s 3rd CT scan with Dr. Duffy.

To recap, the very first scan introduced us to NSCLC Adenocarcinoma in all its glory–to me, what looked like splotches of ink and dark blobs inside his chest. Our 2nd scan was the first scan to tell us if “IF” his initial chemotherapy rounds were providing effective treatment. We were pleased to discover –Yes! Dan’s tumors were either stable or reduced in size, including his primary tumor in the left lung. Of course, these are always the results we want to hear! The alternative would be that there are new tumors or existing tumors have grown. The week leading up to a CT scan is torturous for me. I don’t actually even realize it until the few days beforehand (and then I stop being able to fall asleep and notice I am irritable and nervous). It was pure relief to hear today that the cancer is stable. Thank you to everyone for all of your encouragement, positive thoughts, and prayers. We are fortunate that there is no evidence of new growth or resistance to the treatment.

At this point, the reality of his illness is really sinking in during day-to-day life.

Just the last three weeks, we have had to deal with the side effects of his steroid use from his brain inflammation, and the side effects of weaning off of those steroids. He is three weeks past tapering off the steroid, but it is only now completely leaving his system. Combined with very aggressive chemotherapy, it has become tough. He has suffered overall muscle fatigue and especially weakened thighs, resulting in a few moments where he collapses. He has very frequent dizzy spells when standing, so it takes more time to move about after sitting for more than 20 minutes. At this point, he has lost nearly half of his normal blood volume (and is therefore anemic, awaiting a blood transfusion once he reaches the safest level to do so), suffered severe constipation always the two weeks following each treatment, and endured increasingly extreme fatigue and a reduced/limited appetite. On the bright side, we are grateful that his throat sores and thrush have been easily treatable, and that he still has an appetite for much needed nutritious food – fruit, juice, vegetables, and a few animal proteins that will help replace the muscle mass he has lost.

Together with his doctor, we decided to continue two final rounds of this chemotherapy, for optimal results. “Optimal results” continues to be —No new growth, stabilization or reduction. His particular cancer loves to grow and spread quickly like wildfire, and Dan’s genetic mutation (ALK) particularly loves to go to the brain. It is quite The Beast! But so far, treatment is disrupting those plans and our hope is to see a good scan again in 6 weeks and then move Dan to maintenance chemotherapy–kind of like a low grade version of what he has been taking that will work to keep the cancer from progressing. Some stage IV lung cancer patients can have successful maintenance therapy for as much as 12 months on just a single infusion drug –pemetrexed, and this should be the case for Dan as his ALK mutation historically responds well to pemetrexed. Again, that is our hope! And even beyond 12 months! Go Dan! 

We know that the next 6 weeks of treatment on the current chemo (including cisplatin) will be rough, judging by what seems to be a cumulative effect over the past three months. However we are also hoping that the side effects of the steroid will subside. Overall, we do expect him to continue to have the severe fatigue and some discomfort intermittently. His left lung that harbors the primary tumor is still full of fluid and the lower lobe has collapsed. We will have the fluid removed soon and also have surgery to prevent fluid from accumulating again. That will help his breathing and reduce his overall discomfort and risk for infection or complications in his lungs.

We feel like we are in a home stretch now that we confirmed his final two rounds of this chemotherapy treatment. It is going to be tough but we are looking forward to the end result—Getting him on maintenance therapy, seeing his lungs healed from the clots and fluid, and normal, healthy growth of his body’s fast growing cells so that he can enjoy food again and have energy to play with Raine and work more again! I will be calling upon our local helpers much in this next phase, so please use our Lotsa Helping Hands site (sign in to see our calendar of needs). If you haven’t set up your account yet, please do!

Thank you again, to everyone who has us in your thoughts. It matters. It helps. Soon I will share more about that. For now, I am off to bed with the wonderful gift of relief and joy given our results today.

Dan's Cancer

So here is what I have learned so far. And this is all mostly in my own words so you know, it is probably 98% actually correct. Sometimes talking to doctors feels like I am playing telephone when I was a kid. Did I get the right message that we started with? And I honestly don’t know if learning more about the science of his disease helps me or hurts me. Which means it is both. I am simultaneously empowered by gaining knowledge and terrified by understanding the quiet, deadly nature of cancer cells. So if you want to learn more, keep reading. If you would rather not know, stop.

Dan’s cancer is 100% definitively lung cancer. We know this because a very smart and diligent person in a lab put the cells that were found in his chest fluid underneath a microscope and stained them to identify their biomarker. Different cancer cells have their own biomarkers and I think of it kind of like a thumbprint. The markers tell doctors where cells are from. The cancer started in his left lung, approximately up to 9 months ago. (There is currently no cancer that has been detected in his right lung.) Trust me, it is very weird to think back to January and realize this whole time, cancer has been growing and spreading in his body.

Not everyone who has lung cancer has the same type. There are two types, and Dan’s is Non-Small Cell Lung Cancer (NSCLC). Within the NSCLC type, there are 3 different types of tumors. Dan’s tumor is Adenocarcinoma (the most common in the United States for both men and women. It occurs mainly in current or former smokers, but it is also the most common type seen in non-smokers. It is more likely to occur in younger people than other types.)

There are stages of this type of tumor, determined by how much it has spread. Our oncologist, Dr. Duffy, used the analogy of a large city expanding with suburbs and using up all the resources it can. When the city and its suburbs are too large and there are no more resources, the people move elsewhere and start new cities. That is basically how I understand Dan’s tumor. A little city in his left lung that used up its local resources and then spread scouts out to his lymph nodes, bone, and brain, and built towns there. The tumors in those areas of his body are still the Adenocarcinoma, not new cancer. So Dan doesn’t have bone cancer or brain cancer, he has lung cancer that has spread  (which they refer to as “Metastasis.”) We know of these locations because of a PET scan done at the hospital. They used glucose in his bloodstream to activate cancerous cells* and those spots show as a brighter light on the scan. It was important for Dan to see his scan and talk about it with his hospitalist, Dr. Goldstein, so that he could actually see what was inside him. I didn’t want to see it (ugh!) but he made a good point that after his treatments, we would want something to compare his new scan to. He is lit up like a Christmas tree right now and we are hoping for more dark space next time!

*Glucose fuels all cells of the body, including cancer cells, and cancer cells use the glucose faster than regular cells because they are fast-growing cells. The sugar does not make cancer cells. Please do not send me literature on a sugar-free diet. We are aware of research studies about sugar and tumor growth and our doctor is as well. Dan isn’t gulping down gallons of soda each day but at this point, he is also not depriving himself of some of his comfort food, in moderation. Please respect his choices and know that we are having a constant dialogue with our doctor about every possible thing. We live in Oregon after all, so our doctor has heard a lot. Portlandia could easily do a comedy sketch about a patient’s visit to the oncologist’s office with many, many questions. 

The tumors in his lung caused the blood clots that caused his chest to fill with fluid and eventually created his shortness of breath. Otherwise there were no symptoms. His tumor was able to grow and thrive in his lung and as the tumor dispersed its waste, the lymph nodes in his chest collected it and the tumor repopulated inside those. There were no symptoms for this as well. After the tumor spread by blood cells to his bone in his spine and his brain, still no symptoms occurred. Our oncologist explained that often the only indication for lung cancer can be sudden weight loss or maybe a cough mistaken for a cold. We thought the last month Dan had caught a cold I had and was also having bad summer allergies. As of March, Dan was actively getting into the best shape of his life. He was inspired by a good friend who was having a hard time keeping up with his toddler and got fit. Dan set his goal and achieved it. He went from 280 to 230 and introduced daily portion control, stretching, and cardio and/or yoga exercise. It is ironic that he never looked or felt better. We will never tease out what part of that 50 pound weight loss involved his cancer.

Lung cancer happens pretty fast and has little warning, right? It is extremely common to be diagnosed at an advanced stage because there are no symptoms until the cancer has grown or moved to another area and created symptoms. Curable cancer seems to be defined by finding it at a stage where it can be removed and then preventing further spread. It is next to impossible to do this with lung cancer. Even if all of Dan’s tumors were miraculously removed at all of the locations it has been found, there is still more disease below our levels of detection, and it will always repopulate. It will never be stopped permanently. The most common age group for persons diagnosed with Adenocarcinoma is 70’s or 80’s, at which point the body is commonly already weakened and diseased by other conditions. It is difficult to put them through aggressive treatment. Often the body is not strong enough, or the side effects reduce the quality of life that is left.  

But Dr. Duffy will be damned if someone wants to put Dan in that category. He is 37, quite fit, in perfect health (otherwise) and at this point, his other vital organs are not affected. Yea! She and Dan have discussed his treatment strategy and they are going all out–balls to the wall–so to speak. (Pardon my French.) She encourages him not to read anything on the Internet or literature based on statistics because he is the exception to the rule. The first time we met her, she walked in the room and looked at him and said, “I shouldn’t be talking to you.”

A crucial part of determining his best treatment is identifying the genetic markers of his Adenocarcinoma. There have been advancements in the understanding of lung cancer and its genetic mutations. These mutations act differently and/or are driven by different proteins and therefore respond to different treatments accordingly. This means all lung cancer patients don’t receive one batch of the same chemo. There are highly specialized versions and Dan will get those, in addition to any research/trial versions related to his type of tumor. All of this remains to be seen and we eagerly await results (hopefully in a week) and our next meeting with her October 15th to start our strategy. In the meantime, his 10 treatments of radiation to his brain have likely reduced the size of the 5 tumors in his brain and will prevent complications. We are SO fortunate that they had not grown or overpopulated such a vital and sensitive area of his body. While his treatments have ended, the radiation will still do its work. He has had no side effects but could still feel tired or have headaches or nausea in the coming weeks.

So that is everything in a nutshell that I know right now. I needed to write it down. Putting thoughts into words on paper or a laptop screen help me. I also re-organized some cupboards and obsessed over our outfits for our family pictures tomorrow. You do what you have to do.

Thank you to the lovely families and persons who have mailed and delivered cards, care packages, gifts, and meals. You don’t know it, and I feel like I will never be able to adequately articulate my gratitude, but every time I receive help, it makes a big difference, no matter how small the gesture. I want to thank you all with a thousand kisses and tears of joy.

xoxo,
Leah Ruth

One Week in Photos 9/16-9/23

The chest fluid that caused his shortness of breath. This sent him to the ER and started it all...

Morning balloons outside the window of his room at the hospital in Newberg. He also had a view of one of his most played golf courses.

Flowers for daddy, once he moved to St. Vincent's Hospital. Bummer news called for the best bouquet in Oregon -- Pollination Flowers! Dan especially loved the thistle.

After two very long days, we brought Raine to visit daddy. He was timid about daddy and his oxygen tube until sorbet was involved.

Friends left their mark on the wall in his hospital room. We had over ten super awesome visitors that week who we will forever be grateful for, for every single gesture that helped. Food, babysitting, moral support, etc. And there may or may have not been pizza and beer involved.

Dan leaves his mark, too. Snail Says: Fuck Cancer.

Raine let daddy keep Mr. Fox during his stay. Nurse Melissa loved Mr. Fox so much, she bought herself kitty and had their photo taken together.

Dan enjoying a Soursop juice box. He also watched a lot of ESPN and Food Network, walked the halls, and did light yoga/stretching.

The view from the west end window was incredible to say the last...

****COMMENTS FROM ORIGINAL POST 9/25/14****

 

DONA JONES ZARR: Leah and Dan you two are incredible. Yes Fuck you Cancer. I think your passion for this fight will make a difference. Thank you for letting us in on your journey to kick this bastard's ass.

 

MELISSA: Thank you for sharing this. You two are amazing and cancer can go fuck itself. Rock on, guys.

 

EDITH VLK: Praying for a complete healing Dan Love the pictures Leah keep the positive attitude.