Friday, October 17, 2014

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 EGFREML4-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.

1 comment:

  1. SARAH: I barely know you guys, besides working with you for a few months at World Market, and being Facebook friends, so I didn’t feel right jumping in and commenting right away but I’ve been quietly reading about your journey and I finally want to reach out to you and say that you are so, so strong and so inspirational. You’ve been dealt a really crappy hand and have handled it with a better attitude than anything i could have ever dreamed up or hope to have one day if I ever face anything like what you, Dan and your family are dealing with right now. I’m so sorry about Dan’s diagnosis, but please know that one drop of positivity in the dark puddle you’re walking through right now is that I will keep your attitude and light in my mind and draw inspiration from it whenever I meet a challenge in life. So, I guess I just want to thank you, and say, keep doing what you’re doing. Thanks for sharing your story and your amazing writing. I know you’re busy so please don’t worry about responding. -Sarah Berger