Sunday, October 5, 2014

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.
Leah Ruth

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