Support Us At Our LuLaRoe Fundraiser

Amy Mulder Photography

You are invited to our special event, Saturday, November 8, 2014 at Republic of Jam in Carlton, OR. 3:00-8:00 p.m. Stop by anytime and  say Hello! (I am also a hugger, so don’t be afraid if I hug you!) Guests will be able to shop LuLaRoe by Leah Ruth and Republic of Jam goodies* while enjoying music, appetizers, and drinks—and great company!

This will signal my return to work and I will be offering a special LuLaRoe by Leah Ruth Fall Trunk Show with a large selection of new clothing and exciting styles (like that super cute Amelia dress I am wearing in the photo above!) There will be a team of three lovely LuLa-Ladies joining me from Cannon Beach, OR and Tacoma, WA, bringing along more inventory! It is a very special, exciting event. Sizes available for girls are 2 – 8/10 for dresses and leggings and XXS-3XL for a variety of women’s styles –skirts, dresses, leggings, tops, and kimonos.

This is a great chance to stock up on fashionably comfortable pieces that flatter everyone. The dresses, skirts, tops, and kimonos are all made in the USA and at our event November 8th, LuLaRoe will match $1.00-3.00 for every item sold in donation to our family.  It has been a great joy for me to sell LuLaRoe this year and meet lovely and kind customers. Thank you to all of you who have written me emails and supported me through the last month! I am honored that my business venture will now be able to provide a way to support my family and give back to us in this time of transition and hardship.

Dan and I are also SO honored that our great little town is behind us and also providing support! There are numerous businesses supporting us and doing special donations and contributions Saturday the 8th, like profits of sales on wine bottles, yummy pizza, or gorgeous vintage inspired jewelry. It is all so fabulous and we love that this is a chance for us to get everyone we know together here in Carlton and show off everything we’ve got! Jam, macaroons, wine, microbrews, chocolate, ice cream, specialty gifts, etc.! We will have an updated list and descriptions shortly, so stay tuned!

*Speical thanks to ROJ who are also including web site sales for our friends and family afar!

Our Little Cabin Escape

Thank you to Jean and Don Oliver for making this magical time possible.

Besties

It is very easy to feel alone. But I am not. Now is that kind of moment that you practiced as a kid at a camp or for team training—you stand high, with your team behind you and you hold your breath and fall backwards. They catch you and it teaches you that you can count on everyone. I’ve fallen and they’ve caught me; they will keep catching me, over and over again. It isn’t necessary to say Thank You because I would do the same for them, and I will someday when they need me. And they know that.

But still, thank you, Hattie.

Thank you, Allyson.

Thank you, April.

Thank you, Sarah.

Your visits and help have made me feel so loved and safe.

One Week in Photos 10/13-10/21

A visit all the way from IL - Andy and Sara!!!

We love the cards and packages we are getting! Keep it coming! It is so awesome. We have had several people send notes from classrooms and they are so entertaining and sweet! It was a busy week of each of us trying to get back to a little work, help from friends visiting from Illinois, Dan attending a Timbers game and out with friends to watch the Bears, and appointments and decisions regarding his treatment. He is still feeling good with no side effects from his radiation treatments other than irritated hair follicles and some acne. We believe he has accumulated more fluid in his chest again (he can tell a little difference) and tomorrow he will have another Thorencentesis to remove it. Chemo will begin next week, on Thursday, October 30th, with three drugs –to include the trial drug Jakafi, as part of  a research study at Providence. In order for Dan to be eligible, he needed to be at least 4 weeks post radiation at the beginning of the treatment. Today and the next two days will be composed of many preliminary tests to give the researchers the most complete information possible of his health. MRI, CT scan, bloodwork, etc. Please continue to keep us in your thoughts as we move forward.

How Is Raine Doing?

You know, they say children are resilient. I believe it. Raine has been doing so well.

We are in a situation where we have great sadness, anxiety, and anger. Our hearts are breaking with it, but also many hearts of people around us and who know us are breaking. It would be impossible for a child to not pick up on that, so I am not naive enough to assume he is 100% unchanged. Just like I said for myself, if you see Raine, he is pretty normal. He isn’t anxious or frightened or sad. He doesn’t really know what is going on. So he might be acting out a little bit–or he might just be your typical 3 year old. I don’t know. I’ve never had a 3 year old before.

The age of 3 makes him oblivious to understanding Dan’s diagnosis beyond a simple “Daddy is going to Daddy’s doctor today,” or “Mommy needs to give daddy his medicine.” Raine got a little preschool medical kit to also help give daddy medicine, or to give anyone he can convince a special “check-up.” He calls them his doctor tools and uses the stethoscope, shot syringe, blood pressure cuff, etc. Of course his knowledge and questions about daddy’s doctor, sickness, and medicine will change as treatments begin and also as he learns more and grows. We have wonderful child development resources with Providence, so we already got a little book for Raine to help him identify some of the language and moments our family has and will have that other families don’t. I am grieving the loss of his future that is the future we envisioned (as all parents do) where Dan and I raise him and watch him become a confident adult and then when our hairs are grey, we each show him how to die with dignity and grace (as so eloquently spoken by my mother-in-law). You just don’t expect the “natural” order of life to get shuffled up. I know now that we are not special. Our bubble has burst. We are just like every other fragile creature living the human experience–there are accidents, bodies fail, loss occurs out of order; nothing makes us invincible.

I take tremendous comfort in the fact that we still don’t truly know when each of ours days will end. Anything can happen. So I am beyond grateful for the 3 years we have already had together. I am grateful that Dan and I had a hard time conceiving Raine—because we really enjoyed the SH*T out of each moment we had together from the moment we learned he existed. We took way too many photos…Far too many videos than could possibly be necessary. I wrote and documented so much. I cherished every wiggle I felt when he was in my womb and every second I rocked him as a newborn—even when I hated it because I was sleep deprived. I knew how lucky I was and it was special. I didn’t miss a moment. Dan and I laughed so much and experienced so much joy just observing Raine. We still do! Of course, life gets busy and I certainly got busy this year with two jobs, but I really feel like I never took anything for granted. I always tried to keep myself in check as much as I could. And so it continues.

I also take comfort in the fact that based on those 3 solid years of family bonding, and probably a bit of genetics/personality, Raine is extremely confident, smart, and sweet. He is a good kid. He is on a path of greatness. He could still be mayor of Carlton some day. He’s got what it takes. Those dimples! (Ha ha) We have been very open with him and letting him learn as much as he is capable about our situation. We don’t want to hide anything because he is already so clever. I do a lot of talk with him about his emotions and he is learning how to explain how he feels or “act” certain ways that he wants to act. He isn’t shy but he loves to “act” like he is shy, for example. (Forget mayor…He might be the next George Clooney?) My hope is that focusing on open communication will help him and he will always feel like he can tell Dan and I what he is thinking. So far he is only able to show us glimmers of what his brain is processing. As I tucked him in last week, he asked me with a little concern, “Who will be here tomorrow?” He has had a lot of visitors, guests, and fun and presents. It has been over a month since it was our “normal” routine of Raine, Dan, and I. It made me sad to realize his mind is processing that his routine has been disrupted, but I am also glad that he talked to me. And I know we can still keep boundaries and routines in place to a pretty great extent at this point, so we will. Sometimes I feel truly too tired to take a stand and NOT let him have a 4th popsicle. Or watch an hour of uTube on the iPad. Or insist he say “Please” and “Thank you.” Or maintain a nap schedule. But you know, as a parent, you pick your battles. You just make sure you are winning most of them! We may have a lot of visitors, but he will continue to go to daycare where he is thriving, and we will continue to do simple family rituals. We will do our very best for him. And he is keeping up with us. And always blessing us. Always.

Genetic Testing and Treatment

Every day is about adjusting to our new normal. But our new normal shifts like sand under our feet. I just keep walking in the sand, letting it slide around me. At least I have his hand in mine.

Today I slept in while Dan and Char attended to Raine. I showered and took Raine to daycare. I went into Dry Goods and answered questions for the new manager. I bought several vintage suitcases. I upgraded our small garbage bin to a large garbage bin at Recology and also purchased a large bio-hazardous safety waste container for Dan’s used Lovenox needles. Debbie at customer service gave us a free month on our bill. She was so very kind. Anyone who learns our story turns out to be so very kind.

I sat myself down at the coffee shop and returned emails, re-scheduled doctor appointments, and attended to this new web site and plans for my business. The coffee shop owner, Brian, has been a huge help. He lets me stay at my table after hours and lock up when I’m done. He gives me advice on super nerdy web site technology stuff. Sometimes he doesn’t let me pay for my mocha. I returned the favor this afternoon and picked his son up to take him to school when his ride wasn’t there. Afterward, I bought stamps at the post office. I returned to the coffee shop for more work.

Tonight I will eat dinner with Char and Dan. He will probably cook a fabulous meal because he is so good at that and he is feeling well. Last night he made chicken, rice, and cashew stir fry. It was delicious. I have a hard time eating anything these days but I nearly licked my plate. We will play with Raine and put him to bed. We might watch an episode of Scandal or The League. I will probably avoid the computer and the things that I need to do  on my To Do list because they are not fun. 1.) Call a CPA 2.) Download our Legal Will & Testament software 3.) Count my inventory 4.) Treat Hobbes and Rocco for fleas 5.)  Address some Thank You cards.

I will be so grateful at 10 o’clock when I slide into bed (our luxurious king size bed that my mother-in-law keeps washing the sheets of regularly…and she bought us new fluffy pillows so, really, I feel like I am staying a fancy hotel) and let my sleeping pill, anxiety pill, and pain pill kick in, turn on last night’s Jimmy Fallon on Hulu, and reach to place my left hand on Dan’s shoulder or back. I will enjoy being next to him and the feel of his body. That weight on the other side of the bed that just barely shifts the weight of the mattress on my side. It is so subtle. He will start snoring and I will make it through Jimmy Fallon’s opening dialogue and then probably start snoring myself by the time he starts talking to his first guest.

The daily routine changes based on who is staying with us and what we are waiting to find out or what treatment we are doing for Dan.  It is entirely possible that I will remember this time of our lives in chunks based on his treatment. Oh, that was his first radiation. Ten days of treatments followed by two weeks of waiting. And he was feeling pretty normal. We went out to dinner, his family visited, Raine ate peanut butter & jelly every day, I ended my chapter as Store Manager at Dry Goods. We celebrated my birthday. I wonder if I will look back on it like a honeymoon period because what is to come could get pretty awful with chemotherapy.

His tumor tested negative for NSCLC genetic variations EGFR, EML4-ALK, and KRAS (I am posting links for you nerdy folks). This is neither good nor bad news. I guess it depends on how you want to look at it, and we are just keeping our chins up no matter what. Cancer genes are numerous and variations within them are as well. Some of the lung cancer mutations resist treatment, some respond great. Some have targeted therapies, some don’t. Right now the tissue of his tumor is being tested at a lab in Seattle for another mutation —ROS1. If that one is also negative, the tissue will be sent to Foundation 1 for complete DNA sequencing.

Of course there is hope that they could identify some genetic mutation that someone somewhere in the country is studying and doing a trial drug on. It is hard to say just yet. I have to admit, I am not a nerdy scientist person like my husband, but this is all completely fascinating. I had no idea such amazing strides were being made in lung cancer research and drug development. It is truly remarkable if you take the time to learn–which you don’t really do unless you are forced to because you are a nerdy lung cancer specialist like Dr. Duffy and have researched this stuff your whole career, or you (unfortunately) are her patient. I mean, let’s be honest–no one wants to talk about strides in lung cancer research. It has  an awful stigma that no other type of cancer has. Which is completely awful. But that is a different post for a different day.

I like the nerdy info (as much as I can understand it—which isn’t much) because I have always been someone who felt like if I could understand something and educate myself about it, that takes away the power it has over me. I learned in my past that if someone hurt me deeply, I could withstand it if I could just understand the science or psychology of why. I never needed a greater answer beyond those basic mechanics to try to heal and move on. I’m not interested in the why behind the why, I guess you could say. I’m a poet. I leave those answers to what is elusive and mystical. But I’ll find words for the framework to contain it enough so that I can bear it.

I suppose that is the same now.

So we don’t know what his genetic variations are yet, but there is no more time to wait to specialize treatment. The 2 weeks post-radiation are over and chemotherapy needs to begin now. Wednesday, we will go to St. Vincent’s in Portland where he will have two hours (before and after) of saline infusion and three hours of chemotherapy. He will be given Pemetrexed and Cisplatin. As soon as he is eligible, he will participate in a research study at Providence with a trial drug Jakafi. If you like to Google drugs, go for it. But I don’t recommend  it, so I didn’t link those. The side effects are completely awful and the actual work that the drugs do is also awful. But this is not a time to give Dan 5 lbs. of beet juice and cannabis oil. Trust me, Portlandia, we will do complimentary alternative therapies and work with a naturopathic doctor and dietitian at the hospital in conjunction with his treatment. We will do anything and everything in our power to do! But you just don’t mess around with this type of tumor that has metastasized so aggressively. If we did nothing, we would have six months. We are trusting the history of medicine that has prolonged lives and given patients more time to live and live well! We know it will be difficult to sustain the side effects during treatments, but it is better than the alternative. Honestly.

So keep on keeping us in your thoughts. We feel it! There is no other possible way on God’s green Earth that I would be doing so well other than the amazing positive and loving vibes I am getting from you from all over the world. I wrote on Facebook recently, “To all of you who have us in your thoughts, well done my friends, well done. Such lovely things are happening.” The lovely things are the kindness and sweetness of everyone -including strangers-and moments we are handling with total strength and courage. Also moments that are just so unbelievably luxurious.

Laying in bed together with Raine and watching cartoons …even for 10 minutes… before we all get up and go off to work or start our day.

PEOPLE. THIS IS THE STUFF. DO MORE OF IT.

Herzing Family Photos

Grandpa Jim, Grandma Char, Raine, and JD

Rita, Doug, JD, Char, Jim, Dan, Raine, Leah

We had eight nights and 7 days with Dan’s entire family.

There was golfing, a trip to the coast, eating meals together, cleaning, hugging, doctor’s appointments, and a whole lot of playing.

We cherished every moment!

Here are a few photoraphs taken by our dear friend, Christie Glynn. Thank you, Christie, for following us around Carlton and capturing these beautiful photos!

Cousins!

ELBOWS! Our family gesture of love.

Back to Work for Me!

At my favorite breakfast joint, Community Plate, in McMinnville.

I actually went back to my normally scheduled work week in McMinnville last week. I worked four shifts at the store, had a couple of meetings with my boss, and took a little bit of work home with me. I had set into motion my step down as Store Manager the day Dan went to the ER. I chose to do it to focus more time and energy on my own business, so I had no idea it would be necessary for a whole new reason.

This week will be some training and tying up some loose ends as I officially step down. My presence at the store will just be two shifts a week until we know more. It all depends on what I am able to schedule for my business and what Dan’s chemo treatments will be like. There are still a lot of unknowns (timing, frequency, side effects, overall prognosis) that make it difficult to plan very far ahead. I’m operating week to week with maybe the next month in mind.

It felt good to go back to work. Despite a panic attack the first time I walked in the store, I did fine and spent the week getting back into the swing of things. (In retrospect, I think the panic attack is because that is where I found out he was in the hospital, which started it all.) It was good to talk to customers and have normal interactions without them knowing my situation. It felt good to focus on something other than cancer, finances, or medications. At the same time, there were also moments where people (both at work and out in public) act greedy, rude, or petty, and I wanted to scream BE GRATEFUL! I knew this would happen, though. It was similar after the tornado last year. I felt I was a part of two realities and the people who were not aware of the tornado reality sometimes seemed to need more awareness. Everyday we are walking around blessed infinitely. I must resist the urge to shake people who don’t acknowledge it more.

Always on my phone!

While at moments it feels all too incredibly overwhelming, I have also been formulating a plan to get back to work for my business. It is exceptional what a small step away from my home office has done for me. Combined with our new cancer reality, and stopping all communications and events, I have a fresh perspective on my business and my vision for it moving forward. I am both excited and anxious. How can I run a business and take care of my husband and son? How can I give the best customer service and shopping experience when I am dealing with such raw emotionally and physically challenging circumstances? How do I ask for help and not try to do it all too much and too quickly?

But here is the amazing part…I sort of randomly fell into starting my own business and selling LuLaRoe, without a crystal clear reason why or a solid business plan. And when Dan and I decided together to have me start this venture, we had no idea what lay ahead. The owners of LuLaRoe have been supporting me since the day I started and they have reached out and supported us ever since we got Dan’s diagnosis. They envisioned a company that would provide a lifestyle for small business owners to work with them and create schedules of flexibility, joy, and togetherness with their loved ones in addition to some good ol’ fashioned hard work. So I really couldn’t be in better hands with a better business opportunity. 

And my customers? And my fellow LuLaRoe business owners across the country? Wow. You have all blown me away with your love and support. I can’t wait to give it all back tenfold. Stay tuned: Beautiful things on the horizon rising out of this struggle and sadness.

One Week in Photos 9/30-10/7

Daddy with Raine helping put together Raine's big boy bed

Dan with his parents, Jim, and Char, hanging out in a waiting room. We've seen a lot of these lately.

Raine keeping busy with his back yard "work" (moving pumpkins around).

The 2nd place Dan wanted to visit after getting out of the hospital.

Opening packages and mail with gifts and cards

An impromptu dance to "These Arms of Mine" dwhile out for dinner.

Grieving for Linden and Archer

We are a family of three.

It wasn’t easy for us to conceive Raine, and if you followed our journey via Herzing Luv, you know that. For years we tried off and on to start a family. My Polycystic Ovarian Syndrome complicated matters and fertility treatments weren’t something we could afford. It was such an emotional roller coaster and such a struggle. I tried different medication combinations until ultimately we had one last chance in the winter of 2010. Our hopes were dashed when my ovulation test kits failed. We began to grieve the fact that we hadn’t been able to create a biological mini Dan or Leah.

To our great surprise four weeks later, I had a positive pregnancy test. We were shocked and completely thrilled to say the very least! Best Christmas present. Ever.

When Raine was 10 months old, we decided to try to conceive again. I was in a post-partum lunatic haze and actually thought hurrying up and doing the whole pregnancy/post-partum/breastfeeding experience all over again right away was ideal! No offense to those of you ladies who have done that successfully, it just wouldn’t have been right for me. It was all very tough for me with Fibromyalgia, so I just figured LET’S GET THIS OVER WITH AGAIN QUICK. I naively thought that because my body had just been through the whole process, it would totally get pregnant easily.

Of course, it didn’t.

I became pretty frustrated and bitter. Even though I had a child, I was still jealous every time I heard that someone else was pregnant. One night we found out that close friends were trying for their 2nd child. I became so angry and snapped “I’m sure they’ll get pregnant on their first try.” I was so irritated to be stuck wanting something that seemed to just be beyond my reach, but came so easily to others. A friend with me that night didn’t like my ugly attitude and challenged me—“Why do

you need another child when you have Raine?”

It was a valid point. How dare I be so greedy when I had been so blessed!? I’ve said it before and I’ll say it again: Raine is the most delightful, hard-won part of our marriage. The past 3 years with him have been completely magical. He is not only our baby, he is now a sweet, clever, handsome little guy! And I explained to my friend that because Raine is so awesome, I dreamt of creating another awesome person. And Dan and I felt our collective heart was big enough for more.

Dan as a new dad in 2011

As time has passed, we saw clearly that having one child can be completely fulfilling. We didn’t feel providing Raine with a sibling was necessary as we both have close friends who are like siblings to us since childhood. However it still appealed to us to dream about it. Just recently we had discussed our thoughts again for another child. At the rate that my business was growing, we felt it could be possible to grow our family. As an independent working mom, I would have flexible scheduling and be able to take a maternity leave or afford fertility treatments should we need them. I wanted to wait until Raine was another year or two older (so he could be more independent and also helpful) and that worked out well with Dan’s demand to have more by the time he turned 40. (Which I reminded him was a lot sooner than he thought! Haha.) We liked the name Linden Douglas for a boy. Archer for a girl. I also liked Aster for a girl. And River for a boy. I love words and I love names. Thinking of names was a daydream indulgence. Those names drifted around in the back of my mind during everyday tasks like fireflies in a night sky. They were magical, too. I believed I could catch one someday. Put it in a jar. Show it to Raine.

And suddenly, Dan’s diagnosis.

It has hit me in waves–this new, strange grief over our unborn children.

The first one was when Dan told me his diagnosis. What a nightmare. Every dream of the future collapsing in seconds.

Another one was when he asked one of his nurses at the hospital what her name Marisol meant. She smiled shyly and told him the sea and sun. She left the room and I burst into tears. There was no more secretly thinking about names.

Another one when I shared my grief with Dan over this loss, and questioned it, and Dan firmly assuring me that despite miraculous medical interventions to extend his life, he would never bring another child into the world who wouldn’t have a father. That is so right. But it was so hard to hear.

Another one when I saw a young man in Target carrying an infant.

Another one when I boxed up baby clothes for donation.

What can I say? The firefly lights are gone. The night is black. I am angry and I am sad. It is a small thing to grieve in comparison to what I am ultimately grieving. But each small thing matters and is a part of the process.

We don’t have fireflies in Oregon. Someday Raine will see them on a warm summer night in Illinois when we visit family and friends. I will be sure to give him a tender kiss, a good jar, and I will relish that moment with everything in my heart and soul.

About Us

Less than 10 days ago, my sister set up a GoFundMe fundraising account in our names. I also used GoFundMe a year ago to raise funds to help my parents after the tornado in Washington, IL. I had never used a web site like that and was stunned at how easy it was to create and how quickly and generously people gave. We raised a significant amount in online & offline donations to help my parents recover and rebuild from the tornado as well as maintain medical needs for my mom.

I never dreamed that Dan and I would need a fundraising site for ourselves. And nothing could have ever prepared me for how extraordinary it has been. We exceeded the goal my sister set within a few days! My sister raised the goal to see what could happen and people continued to give. I am surprised at the number of donors and dollar amount that has been raised (125 & $16,485 respectively as of today) but MORE astounded at the number of “shares.” “Shares” show how many times our page has been shared by viewers through social media. 

We have 621 shares. 

Wow. I can’t believe 621 people viewed our page and took the time to learn about our story and then clicked that little “share” button. There is a lot out there to “share” in social media and many stories and causes to fight for. We can’t always share everything, can we? It is overwhelming sometimes. I am so humbled that 621 people would consider us worth their time and consideration and honored that they were inspired to add us to their social media communications to encourage others to learn about us and/or donate or share. I am so full of gratitude.

For those of you who have donated or shared, or are considering doing either of these things, I just wanted to take a moment to tell you a little bit more about us.

“Happily ever after” isn’t without challenges and ups & downs. I always felt lucky that Dan was a strong, reliable, healthy (I mean, super healthy….he had never had a headache until recently), hard-working man. He is an Eagle Scout. He values autonomy, freedom, leadership, competition, hard work, and preparedness. He is the caretaker in our family in terms of his financial contributions and emotional stability. I am also a strong person but it has taken me a long time to figure out that I am–just because my strength doesn’t mirror his strength. I have struggled with psychological and physical illnesses since childhood. I was diagnosed with Fibromyalgia by age 14 and hospitalized for Depression at 20. When Dan and I decided to try to conceive in 2006, we learned I had Polycystic Ovarian Syndrome. Until recently, I defined myself by these things and my inevitable perceived weaknesses related to them. But actually, I am resilient, loyal, and imaginative. I value balance, order, belonging, tolerance, and creativity. I also am a caretaker in our family; I keep us organized, having fun, and well dressed.  For the last four years, I have been managing my conditions the best I can and have been able to contribute financially to our household. This year I also began my LuLaRoe by Leah Ruth business in addition to my day job to earn more.

Our son, Raine, turned 3 August 11th. He is no stranger to doctor offices. He has been monitored since before he was born for a kidney condition that he is slowly (thankfully) growing out of. He enjoys his “big boy daycare,” where he learns and plays Monday-Friday while we work. At home, he enjoys playing with toys, exploring outside, and meeting new people. He is friendly and sweet, confident and active. We are teaching him our family values of love, family, helping others, simplicity, generosity, and loyalty. 

We also have 2 pets. Hobbes has been with me since 2002 and Dan and I adopted Rocco in 2005. We cherish our animals and they help us keep our sense of humor... 

Rocco

Hobbes

Home.

After a year in Portland and eight years in Sherwood, we have been living in Carlton and have fallen in love with our little rural town and its unique vibe. We are in the heart of Yamhill County wine country and enjoy the peace and quiet, beautiful views, and kind people. I have had the pleasure of getting to know a lot of folks by working at a store in McMinnville. These people donated to jars in local businesses to help support several friends and family of mine affected by the tornado last year. We love to support our local businesses and restaurants in Mac, as well as in Newberg and Carlton. It really is a unique area and we feel lucky to have found it. And overall, we freaking love Oregon! It is our bliss. Have you ever been? If not, make a trip. It’s amazing. We can recommend all kinds of awesome stuff for you and your family to explore and enjoy. 

xoxo,

Leah Ruth

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