Medical Update || Some Zapping

We are pros at waiting in doctor offices...

I suppose I could have waited one day for the update, but for once I wasn’t on top of my game and didn’t even realize there was an appointment this morning at the gamma knife center. I thought Dan was only getting an MRI, but he was actually discussing the results of last Tuesday’s MRI.

The decision is to perform targeted radiation. The focus is three areas, two of which could have been remnants of his original mets that were initially treated when Dan had whole brain radiation. The third is the spot we recently decided to watch more closely. This doctor wants to target it now and not wait and watch.

Radiation. Dan calls it zapping. I believe it is a good choice to zap right now…But again, change is hard so I’m doing my best to be brave.

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.

Our 13th Anniversary

After MRI Results

Dan is super chill. There just isn’t much that can ruffle him. He gets scanxiety (scan anxiety) just like the best of us, but he never really worries or freaks out. The only way I know how to describe him to people is that he is “zen.” There’s not much that can ruffle his feathers. He keeps an even temper, always maintains his sense of humor, and is focused on the simple things each day.

I know this sounds super amazing–and I get that. However, I just have to share a caveat that I am MARRIED to him and have loved him for nearly 15 years and that which is the best about him is also what drives me crazy. Ha! But that’s another post. So, Dan’s lack of irrational decision making, impulsive reactions, and volatile emotional roller coaster rides gives ME the opportunity to do what I DO best. So here is a glimpse of our lives during the 24 hours following our latest MRI results.

6 Days prior to MRI results: Dan has routine scans, we proceed through the week as normal. I try to get all zen like him and sit on the patio, take in nature, and make sure we enjoy some sex before the chemo treatment (ALERT ALERT ALERT TMI WARNING: Dan is unable to have sex the week following treatment in order to protect me from the chemotherapy that would be transmitted.)

Instead of being super zen, we both end up eating a lot of ice cream, sleeping poorly, and getting into ridiculous arguments like, Who do the black sweatpants in the laundry room BELONG TO? Grandpa Don says they are not his–they have a drawstring and GD’s black sweatpants do not. Dan says he doesn’t even own sweatpants, black or no. When casual around the house, he only has a pair of pajama pants. I KNOW Dan actually has black sweatpants. Back and forth. Just claim the effing sweatpants!!!

On Wednesday at 11 am, I was at work while Dan was at the doctor office for results during an appointment with the onc before his chemo treatment. Jim and Char were in town for the results, so he wasn’t alone. (I don’t like it when he is alone and gets news. He was alone with his actual diagnosis and that haunts me.)

A new tumor in his brain that has sprouted and chillaxed since his last MRI requires a consultation with the oncology radiologist. Then we will decide if we want to do targeted radiation (as opposed to whole-brain radiation; this would isolate the cancerous cells) or wait and watch it.

He texted me immediately so I knew. I call and we chat.

I focus on my tasks at work. I keep busy and I do NOT think about it. All afternoon, my IBS kicks it into high gear. I steal a moment to text a few people the troubling news. Ugh. Once home from work, I begin consuming alcohol. I have a stellar Revolution IPA 12 pack in the fridge at my fingertips. The weather is nice so I sit on the patio and talk with a friend that I contacted immediately for such a day as this.

Like a genius, I decide to drink beer for dinner. Weget Raine to bed, and of course, he has no idea what is going on. We read, laugh, and cuddle. Dan chooses beer over ice cream and we finish off the second season of Master of None. That’s a really good show.

The following morning, I actually manage to get Raine to school on time while Dan takes a substitute teaching job. I worry about him being on his feet all day. At home, I sort through and organize all of our medical bills, only to abandon them instead of paying them. I attend a (well-timed) therapy session, which has a two-fold gift; I cry with grief for the overwhelming and desperate desire to have my mom back, right before I enter the office. (I haven’t cried for her in a while so it was definitely needed.) And throughout the session, I become increasingly hopeful as I remember ways that I have been creative with writing and sculpture–and how that creativity helps me cope.

But then—A shopping binge at Target. Resume drinking at noon. Chat with my sweet friend on her porch.

Then I climbed into bed, read, and then fell asleep. Sometimes that’s it—The crisp, cool sheets, a blanket with a familiar smell, and lazy reading with big, thick glasses. It’s medicinal.

Tomorrow is another day.

Podcast: “Fighting Cancer” from TED Radio Hour

At certain moments in time, I do like reading books, listening to podcasts, or watching documentaries related to the science of cancer. It is helpful for me in mitigating the anger and depression while knowing loved ones who died, are actively dying, or living precariously with the disease, like Dan.

For someone who completely hated the subject of science in school for 20 years, I really am fascinated by it now and really geek out often with certain subjects. Expect me to share what I find–good or bad–more in this space.

I listened to this podcast today, Fighting Cancer, while driving to and from work. I like to hear the individual voices who are in the science labs and doing the tedious research and problem solving. You will probably never be surprised that they are nearly always motivated by personal experiences with cancer.

This one gives a good glimpse at a few of them. And they also impact Dan and his type of cancer directly, so it is comforting to hear about the work being done. Even if it isn’t enough, or quickly enough…It is just good to know.

Dearest Don Raine || Edition 2

Dearest Don Raine,

I’m not sure where to begin. I thought I could be one of those parents who blogged that could (well, blog reguarlarly for starters…) post letters to their children, but it turns out I am not and I haven’t even been doing a good job of trying. It has actually been two years since I wrote my first blog letter to you. I’m not going to apologize because there’s a delicate point to be made that perhaps all of my blog is for you. It is for me, to create and cope; it is for those who read it, to take what they will from it; and then there is you. You will become someone who reads it with the extraordinary gift of having been inside its world. To be a part of the very heartbeat that is my pulse in my fingertips at the keyboard. I don’t think about this much at all. As a writer, an artist, someone trying to survive–I don’t think about this space more than the basics. It has to just breathe on its own.

It is August of 2017 and life is complicated. We left our blue house and left Oregon. We came to Illinois and lived in a white house so that we would be closer to family. However, your grandmother Mary died this past winter. You had seen her in person only a handful of times in your short life, and then you had six months to be around her, warm up to her, and then hug and talk to her. I used your anatomy coloring book to teach you why Grandma Mary looked and acted the way that she did–one of her organs didn’t work properly. You are very tender and caring and like to comfort me when you know I am sad and miss her. You have had many questions about losing Grandma Mary but you are honest and seem satisfied with my answers. Ha!–Until you think of another question. You were not afraid to see her dead body and touch her at the funeral. Your generosity at that time was a part of my healing. Thank you.

First day of school - First Grade

 Your father still gets his special medicine every three weeks. You are now able to pronounce it –“chemotherapy” and you can also pronounce his disease, “cancer.” At this moment in time, he is here with us every day. Solid with his warm skin and heavy weight on your bed at night, he counts from 299 to 0 so that he can tell you he loves you and send you to sleep relaxed. He helps you ride your bike. You play video games and do science experiments together. He takes you on road trips, finds parks and places to play or explore, and makes sure you keep trying at things like fishing and soccer, or reading and eating new things. You have developed a keen sense of what buttons to push and how to get what you want from him. (You know that he will give in a lot easier than mommy will).

He is with you every day unless he has to be in the hospital or he takes a road trip by himself. I have not showed you in your coloring book all of the parts of daddy’s body that are hurt by cancer. I was afraid but now I am ready. I need you to know because you have fallen in love with your father. As we take our next steps, you deserve to be a part of the conversation.

You continue to be the best of both your daddy and me…Except your favorite subject is Math. We don’t know where you get that.

We Made It To Our New Home

I am too exhausted to share about our moving week! The good news is IT IS OVER. We have officially made it to my dad's in Washington, where we will be living with him (we will be on the main floor and he has built an apartment downstairs). We have beds to sleep in, the pets know where to find their food, our couches are situated, and the tv/electronics are in working order. 

Hallelujah!

The weight and burden of another move (with another downsize) just one year after we relocated from Oregon to Illinois has now finally been lifted from us. Even Rocco and Hobbes seem to sense that the ‘Great Anxiety’ has passed. With their relief, they are napping hard and basking in the sunlight of their beautiful new back yard….Or if it is Rocco, running away. Six times.

Further relief graced Dan and me after our appointment last Wednesday morning. Dr. Kumar shared that Dan’s latest CT scans revealed yet again that the cancer remains stable.

Onward.

He is still sleeping off the chemo treatment and fighting another infection but doing well. We welcome meal deliveries this week while he rests and we keep unpacking!

Dan doing freelance design work || A celebratory kiss at the doctor's office