Monday, September 29, 2014

He Is Sick, But He’s Not Sick

Well, yes, we know he is sick. He just spent 7 days in the hospital and his discharge summary lists his hospitalization diagnoses as: Adenocarcinoma (lung), pleural effusion, pulmonary emboli, acute respiratory failure with hypoxia, lung mass, and brain mestastases. Lord almighty.
We have told everyone in the world by now that he has cancer. Friends and family have come to Oregon from all over the country.
A corner of our cabinet in the kitchen is now full of medications, alcohol swabs, and treatment records. Dan has alerts in his phone to remind him of his pills. Twice a day I have to give him an injection of medicine to keep his blood thin and prevent more clots in his lungs.
We drop off Raine at daycare and then drive an hour to St. Vincent’s Hospital, where Dan spends 3 minutes laying down, wearing a mask. For 30 seconds on each side of his head, gamma rays penetrate to the cancerous tissue inside his brain.
But he looks like this:
He is home. He sleeps in bed next to me, on his back, feet sprawled, snoring gently. He drinks morning coffee and has a normal appetite. There is no longer a shortness of breath. He holds me and he is warm and strong. He laughs and agonizes over football.

At the moment he told me he had stage 4 lung cancer–incurable–I sobbed over and over I don’t understand. My brain couldn’t comprehend.

It remains. I don’t understand. 

How are there cells in his body killing him right now? I can not see these things, nor touch them, nor taste them. I have no pungent smell of death. It is normal familiar sweat and deodorant. It is the same gap between his big toe and long toe. It is his generous smile and soft hair. The perfect portion of his chest that my head rests upon. His thoughts are clear, his words to me the same as ever. Determined, loyal, brave, kind, patient, loving, funny. 

I know this is my new normal. Living in between it all. Knowing but not knowing. Until we must. 

I remain grateful.

Thank You

Anniversary card from Dan

The outpouring of love and support has been absolutely unbelievable.
Thank you to everyone who has contacted us via Facebook, email, phone, mail, this blog, and in person.
This is what my husband gets for being one of the loveliest people on the planet! 🙂

We recognize the need and desire for loved ones (and friends of loved ones) to help, and how hard it is to not know how to help but want to.  When a tornado destroyed my parent’s home and the neighborhoods of my hometown last November in Washington, IL, I felt the same way! I wanted to help but didn’t know what to do or how.  It took some time to figure out what I could do.

Please know that there is a lot going on behind the scenes to help organize help and we will very soon have a way to direct everyone to web sites, calendars, and/or contact persons for how best to help us.  We appreciate all the offers we have received. We are more than willing to use all resources and helping hands we can get, it will just take some time to establish the best way to do it.

We are learning HOW to ask for help and how to RECOGNIZE our needs. Dude is an Eagle Scout. And I’m kind of a slightly neurotic perfectionist. So we are used to doing things the way that we do them and being self-sufficient. So we just request a little patience as we learn our new skills and roles.

We are adjusting to our new reality and our #1 priority right now is giving Dan the medicine and treatment he needs and keeping me healthy to support him and take care of Raine. Dan and I are both temporarily off work and our new routine revolves around his medication schedules, radiation treatments, and maintaining a normal structured day with Raine as best as we can.

Leah Ruth
DIRK: Your attitude and love for one another is so inspiring…praying that somehow, something positive can come out of this terrible turn of events…in the meantime…kick that cancer right in the nutsack! 

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...

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.

Tuesday, September 23, 2014

10 Years and 10 Days

We celebrated our 10th wedding anniversary on Thursday, September 4, 2014. We had some craft beers at The Bitter Monk in McMinnville, followed by tapas at La Rambla. The air was warm with late summer heat but light and breezy so we enjoyed sitting outside.
He looked very handsome. I loved touching him and looking at him and really felt as enamored with him as I had ten years before when we dated. I was proud to be his wife. (I also made sure to look as good as possible for him. I remember when I finished dressing and walked into the kitchen where he was talking with the babysitter, he seemed to be stunned and joked he would wash up and change but couldn't match my level of hotness.)
We sipped our drinks. We took pictures with our phones. We ordered generously off the menu. We exchanged small gifts.
I knew for ten years that our tenth anniversary would finally come and I always thought that I would plan and surprise him with plane tickets to a honeymoon that we never had. Maybe an exotic beach? Italy? Alaska? (The final state on his list to visit). As the date came closer and closer (and I cringed more and more at our bank account balances---especially having started my own business in the recent year) I realized it wasn't going to happen. Instead I bought him a bottle of artisanal gin, hand printed artwork with a lovely quote, and a gift certificate to get his cooking knives sharpened. Pretty practical. I thought, (as we all do) there's plenty of time for that trip.
Dan made me a mixed CD, just like we did for each other when we dated. He picked a song that was released for every year we were married. As I have listened to it, it fascinates me how time collapses into that playlist of ten songs. I feel it all ---every day, month, year---all emotions and fears, risks and accomplishments. We have had so much together.
He also gave me a beautiful necklace. It is a silver plate with two ginkgo leaves carved upon it and a small peridot gem inside the larger of the two leaves. For him, it couldn't have been more perfect. He and I are the beautiful gingko leaves and that little gem is our son, Raine. He was the most delightful, hard-won miracle of our marriage. I adore it. I adore the effort he put into finding it.
Ten days after we celebrated, Dan noticed he was extremely short of breath when he took our garbage cans down the driveway to the street. He felt like he needed 5 minutes to recover from the task. I arrived home from my work event and he couldn't help me unload bins from my car like usual. He had such a horrible shortness of breath again. I thought his cold and/or allergies had become worse and sent him to bed with NyQuil and finished the car myself.
The next day, he texted me at work and told me his boss was driving him to the nearest ER. His doctor found fluid in his chest and it needed to be drained.
The hospital admitted him, drained some fluid, and then we spent the next 24 hours waiting to find out what was wrong. They did many tests and assured us they needed to check out everything---heart, all major organs, etc. There was potential for infection or virus, or blood clots, or cancer. The whole spectrum of medical possibilities lay before us.
Dan was frustrated to be stuck in a hospital bed for the night, but the oxygen did help him breath and I cheered him up by bringing him a burrito from his favorite place and a milkshake.
The answer that came the following afternoon was stunning. They had found blood clots in his lungs and enough 
enlarged lymph nodes in his chest to indicate that he possibly had Lymphoma. He would be transferred to a Portland hospital and set up for more tests.
After the doctor told us, Dan's first question was whether or not we should move our trip to Illinois back. We had tickets to fly and visit our families in Illinois the following weekend. His doctor gently informed him the condition of his lungs meant he couldn't fly anytime soon ...up to six months at least. And, he tried to emphasize again, the cancer was going to require intense treatments. It was hard to wrap our minds around it but we had no choice.
I can tell you we cried together in that hospital room. Not for long, but we did. And we held each other. And we shook our heads in disbelief. We were overwhelmed. But we started to call family and close friends and tell them what was going on. Dan possibly had Lymphoma. Cancer. We needed him to have a bronchoscopy to examine the lungs and take tissue to determine potentially what type of Lymphoma he had, so we knew more about it and what treatment to do. It was scary to say the very least, but we kept focusing on positives. We had a lot of people come out of the woodwork to share about themselves or someone they knew who had Lymphoma and beat it or was in remission.
The morning of the bronchoscopy, I dropped my son off at a friend's and drove into the city to meet a friend at the hospital. I had a bad feeling the night before and had asked her to be with me in the waiting room while he had the two hour procedure. However when I arrived, the waiting room attendant informed me he was already back to his room and had requested family only visit.
In a frantic blur, I reached his room. He stood in the middle of it, gripping his oxygen stand and shaking his head. He told me with tears pooled in his eyes "I'm sorry to to do this to you..."
It was Stage 4 Lung Cancer. 

Cytology of the fluid from his chest revealed this and further tissue tests were not needed. It was definitive. The following day, MRI and PET scans revealed the cancer had already spread to his bone and brain. It was rare. Dan is 37 and in the best shape of his life. Our doctors and nurses were as shocked as we were.
Ten years after we exchanged our vows, we are faced with the most brutally unfair challenge of our lives. It is horrendous but it is beautiful. Everything around us is extraordinarily beautiful and luxurious now. Our moments together are all there is and my heart could not be more grateful.
As we face our unexpected journey, we are choosing joy, laughter, love, and optimism. That is who we are and who we will forever be.
Leah Ruth

SARA:  :, ( Love, hugs, and strength from Bloomington, IL.
CHRISTIE: Much love to you and Dan and Raine. We’ll send positive thoughts your way, along with a nice F— you to cancer.
MANDY: I just wanted to let you know that I will be praying for all of you, including the medical staff to use their full potential to lead you to the best care; your extended family and friends through such a trying time, for them to have the right words or the right moment of silence, a hug just when you need it; but mostly for the 3 of you to hold onto the joy and happiness because no one and nothing can take that away from you and you each deserve joy and happiness.
GENEIVA: Oh. How I feel emotions. I think the last time we spoke face to face was at Jackie’s funeral. I was overwhelmed by emotions then- I am overwhelmed by them now. It makes me feel inspired that you are choosing joy and happiness. But then, I should not be surprised, as that has been your way. My love and thoughts to your family. Kisses. Hugs.
AARON: Hello Leah and Dan, I’m so sorry to hear the news. Know that you are both in our prayers. Much love from Chicago. Aaron, Sherry, Ben, Jack and Maddy
TARA FILLMAN: Sending my love and strength and thinking of you and Dan always.

RENEE DELESCAVAGE: Leah, I just read this. I’m so sorry to hear of what you and Dan are walking through. I will be praying for you. You sound so strong! Sending lots of love..Renee

DAVID KJOS: Thank you for sharing this. Prayers are with you through this tough time. May God bless you and give you strength to get through this. You two sound like you have an amazing bond with each other. Keep that close as you move forward. Fight that son of a b—h disease called cancer. You can do it! David Kjos (friend’s with Erin Walker Harding)
EMILY HATCHETT FEENEY: You are all in my thoughts. Sending out lots of love and positive energy into the universe for you.
HEATHER ENGHOLM: Sending all our love, and a blanket of strength over both of you. – Heather and Sean
RANDI CARTER: I am keeping you guys in my thoughts and sending love and light your way.
CAROL: May God wrap his arms around you and your family and give you all strength. Carol, from Illinois.
CINDY LOVEN: Leah there are no words that I can speak that can take away what your beautiful souls are going through. I can only tell you that I have been praying and I will continue to.  I love you and I wish I could take this from you. Much love and prayers!!!
KURT RAWLINS: I don't know you Leah, but I toured with Dan and FGC way back in 2000. He is truly a special guy and made it a point to make me feel welcome. We had some great times together. His smile and warm personality are felt in Chicago, and know my thoughts and love are with you and Dan during this extremely challenging time.
JEN SCHEID: Mike and I are sending many thoughts and prayers to you and your family.
MARY KARPIAK: Joy, Laughter, Love, Optimism, Forever! Love you all.
KERI COHEN: Sending love, positivity, and strength your way. Keri, Steven, and Nate
PETER AND ANGELA: This is so beautifully written. We are praying and praying and will do whatever we can to help. Love is an amazing thing and you guys are surrounded by it. Stay strong, stay positive and know you are so loved. We can do this!!! <3
ED KULZER: My entire heart--all of me---goes out to the three of you.
JANET MATTSON: Sending you both love and prayers. When my husband had his cancer diagnosis it was hit to my heart, so much worry of the unknown, although he is fine now it is still my greatest fear that something much worse will come up. It does make me value time, love, life and relationships so much more. Blessings to you and your love for each other.
PAIGE: wow, Leah...I'm in tears. your strength and love for each other is such an inspiration. I will keep you in my thoughts and prayers. stay strong.
NICOLE POWELL: My prayers are with you during this time!!! You don't know me and I don't know you, but we are sisters in Christ!! God be with you all and provide peace, understanding, and comfort! Your approach is amazing and I admire your grace and strength!! Thoughts and prayers from Bartonville, IL.
SARAH: Sending thoughts and prayers to you and your family.... having lost my best friend to cancer and have one fighting his hardest right now it is very emotional. Keep your faith, love, family and friends close during this journey. Eureka, Illinois.
ELI, KELLY, LEAH: Dan, Leah, and Raine - please let us know if we can help in any way. Our thoughts and prayers are with you!
DAWN: I'll be praying for all of you. I have gone through the identical situation. My husband was diagnosed with cancer. It was found in his bones first then after a plethora of tests we found out he had it in his lymph nodes, lungs, & brain. Little did we know that only a very short 22 days later he would be gone. He was only 52. Age is definitely something that your husband has going in his favor. I pray that the Lord gives him the strength to keep fighting this and heals him. I also pray for you to maintain your strength to be able to care for your child and your husband. Honestly I don't think I ever stopped to think about the situation we were in. It's like I just went into auto pilot and did what I had to do. You find out your stronger than you ever thought you ever thought possible. Many his to each of you. You can get through this! I'm here is you ever need someone to talk to who can completely relate. Hugs & prayers! 
DARCIE CONDON: Dan! Dude. I'm praying hard for you and your beautiful family. You fight that cancer! Looking forward to more posts indicating that cancers ass is being kicked. 

HOLLY MAHAN: I don’t know you, my sister is a Lularoe consultant and she shared your blog; I just want you to know that so many people will be rooting for you, even the ones you don’t know. My husband was diagnosed with a rare form of Non-Hodgkin Lymphoma in 2009. He went through rigorous chemo and a bone marrow transplant and has been in remission for about 4 years now. I’m not telling you this to tell you that you’re going to look back one day on this, although God, please let this be true. But I’m telling you as a woman who knows, that I am so so sorry and I know this must be so hard. Your friends and family love you so much and they will be the best things in the world, already are I’m sure. The feelings run so deep, I can’t express them. But please accept the prayers and love from a stranger.

DONNA OATES: Your story was shared tonight by a friend who is a Lularoe consultant and as I read it, my heart became so heavy for you both. I can only imagine what you are going thru. What I do know is that God is bigger than any mountain that we have to climb. My thoughts and my prayers are with you guys!