Saturday, August 27, 2016

Chemotherapy #2


Even with just one session in the books, both Kim and I seem to have a pretty well-established schedule for chemotherapy days. Session number 2 was, once again, a hot summer day in Portland. Perhaps it was Kim's parents who brought the sun from Huntington Beach as they've been here for the week and Kim's mother Carol joined her for the infusion session. And good timing, too, as I had a busy work day to deal with on the same day.

We keep the chemotherapy duffle bag packed and ready to go so getting out the door isn't all that much work. New for this week, though, was a second bag containing cryotherapy cold caps. Kim had read some emerging information about the effects of cold therapy on the scalp to prevent hair loss. I mentioned this a few blog posts ago and a good friend of mine, Matt Roy, connected some dots for us pretty quickly. Matt is a Harvard PhD and a research scientist in Boston. He's also a super bad ass cyclist and the nicest guy you could ever meet. He and his wife Mo Bruno-Roy also have two of the cutest cats on Instagram. 

Because bikes make the world small, Matt knew a guy  at Catalyst Cryohelmet and put us in contact. Stan Jurga immediately became a new best friend. Catalyst's business focus is concussion therapy and migraine relief but he was eager to help Kim and so we had two helmets in the bag on Wednesday evening ready for the trip to the hospital on Thursday.

There is very little information on the effect of cold therapy for the prevention of chemotherapy-induced alopecia. We'll see how this experiment goes. Many thanks to Stan and Matt for the willingness to give Kim a glimmer of hope, (she's still nervous about losing her hair), and perhaps establishing some data on the process. Kim's oncologist has only ever worked with patient using a cold cap so there's not much to go on. Nonetheless, everyone is supportive of the process.

Session #2 went smoothly with all check-ups showing progress. Kim wore both helmets which she said made her a little colder than she would normally be but with yet another warm blanket gift, she was comfortable. Kim's brother and sister-in-law sent a beautiful care package and now Kim has the world's foremost blanket collection in that blue duffle bag.

We got Kim home through Portland's increasingly heavier traffic on a super hot day and with the gas gauge below "E". (Like I need more stress, right? But I didn't want to stop to get gas on the trip home; I just wanted to get Kim back as soon as possible)

With Kim feeling good, we heated up some leftovers and cooked up a plan to play hooky on Friday and head to the Oregon Coast. Friday morning, with Kim feeling pretty good, five of us headed west to the ocean while Andrew headed to work for the day.

Indian Beach at Ecola State Park is a family favorite and it didn't disappoint on this trip. Kim's "Big View" diet was a vast buffet on this day and every one of us enjoyed it with her. The sun was hot, very little wind, and the water ice-freaking-cold. Ah, Oregon, we love you.

The trip to the coast may have done more for me than it did for Kim. The little moments of anxiety chip away day after day as there's still a job to perform, kids to raise, local bike advocacy issues to wrestle, and deciding which bike to ride at Grinduro. It's been overwhelming how many of you ask how I'm doing and I appreciate the concern. It helps, it really does. But this week, I needed some sun and sand, too.

School starts for the boys on Monday. Andrew enters his Junior year of high school and Jason is a 7th grader. Life will settle in a little bit for us and I'd say we're all eager for that. Kim is now 25% of the way through chemotherapy and looking forward to the next two weeks of normal life.

Saturday morning note - Kim has noticed a few hairs coming out and says they come out a lot easier than ever before. She did get her hair cut earlier in the week to shorten it and now she's just got to be gentle with it.

Kim got out for a ride on the Sunday of her off week. "It just feels so good to ride my bike!"
Note the new haircut.


Packed and ready every other Wednesday night



It's always best to keep a cool head.


Indian Beach at Ecola State park



Thanks for making the trip Mom & Dad!

Sunshine

This place is beyond gorgeous


So serious...




Beach Hunks




Secret cove


Not so secret nerd




Friday, August 19, 2016

Flashback Friday #1

It's been a week since chemotherapy #1 and, for the most part, Kim has carried on as normal as can be. She had a rough morning Thursday but pushed through and made the most of the day. We are in a the midst of a heat wave here in Portland with temperatures in the high 90's and 100+ predicted for the weekend. For those of you not from town, the hottest part of the day here is from 4-6 so the heat comes just at the point when you're ready to relax. I know it's been all that much harder for her to get some rest in the evening.

Kim has behaved just as she always has though she did share with me that the effects of chemotherapy for her a combination of the feelings of a hangover and the day after you have the flu. I continue to be inspired be her strength through all of this. She's mentioned a decline in her sense of taste and that coffee is little less appealing for her.

Both of us are settling into the reality of this treatment as we've had our first moments of normalcy since diagnosis. And that means we had a bit of a disagreement a few days ago. I promised myself I'd not introduce any stress into her life but life is life, I guess. Coming up on twenty years married means this will happen now and then but it also means we come out on the other side even more strongly connected.

The internet loves Throwback Thursday and Flashback Friday so maybe I'll reserve Fridays in between treatments for short reports on how's she's feeling and perhaps put up a favorite memory or two. Here's one of my favorites.

About four years ago we took the boys clothes shopping. Kim and I were waiting outside the dressing room for Andrew I saw our reflection in the mirror. I said, "Hey, we look pretty alright", and asked Jason to take a photo of us. It remains one of my favorite of our time together.

I titled this one, "I'm not happy until she's not happy."


Friday, August 12, 2016

The Big Week - Part 2

With Tuesday's port surgery a success it was time to get to chemotherapy. Thursday August 11, 2016 at 1:00 PM Kim walked into the OHSU Knight-Legacy Health Cancer Center in NW Portland for session #1. This would be my second chemotherapy tag-along visit in just a few months. In early June of this year I joined Jim Brown for his 18th round of chemotherapy up in Seattle. I'm glad I had that first opportunity because, you see, chemotherapy is sort of anticlimactic. At least it was for me. 

I thought it would involve huge machines, loads of doctors, the patient on a huge Dr Frankenstein table, and a scary cocktail of radioactive liquid. Nope.


Kim and I only waited a few minutes in the waiting room before being escorted in for some bloodwork. This is where the connections to her port were made and some blood was drawn. A short visit in a private room with the oncologist is always the first part of the day to review the treatment process and discuss progress. For this session we had a longer visit just to go over the process and what to expect. Kim asks the questions and I write down all the answers.

Done with the consultation we are walked over to the infusion clinic. It's a nice room with windows on two sides, comfortable stations, a coffee and tea bar, and lots of attentive nurses. Kim was offered her choice of locations and took a seat in the big chair. Immediately they had warm blankets on her. (They have a fully stocked warming oven for the blankets.) Kim's nurse sat with us and went over the full procedure.

She was given a starter cocktail of anti-nausea drugs and saline to get the process going. Every step of the process is checked, double-checked, and documented. The only reaction Kim ever had during the process was the first jolt of medicine arriving via the port. There's no pain associated with any of the drugs, just the difference in temperature. She said they felt cold going in and it was just a little weird. 

For the chemotherapy mix, no metal suit or long tongs though the nurse does wear a protective gown and gloves while handling the bags and syringes. There is an exposure risk associated with these medicines and care is taken to monitor lifetime exposure to the drugs. Also, no one under 18 is allowed in the infusion clinic so the boys won't get to join Kim for a visit.

The first medicine is a dark, cranberry-juice red and, coincidentally, comes out looking the same color. (Thought you should know.) The chemotherapy drugs dripped in for about an hour or so while Kim and I talked, looked at our phones or read. We added to the hospital blankets with a special one made by our neighbor Heather Mars. The blue side features Portland bridges and the reverse is meant to symbolize a speedy mountain bike ride through the woods and through streams. Thank you, Heather!

The final drug administered needs to be given 24 hours following treatment so rather than have us drive back in they attached a robotic injector to Kim's arm. At 7:45 PM tonight it will give her a dose of Neulasta by Amgen. (Gives us a new perspective on the Tour of California now, eh?)

And that's that. Kind of like a few hours at a casual cafe just hanging out. Kim, as has become the norm, sets daily standards for courage and positivity. One session down and seven more to go.

We enjoyed a brief drive home and then walked to dinner with the boys for my birthday. Kim inhaled a big bowl of veggie Pho from a local place with no noticeable side affects at all. We even split a slice of Rawdacious cake when we got home. If you live in Portland you must try desserts from Rawdacious. Do it.

Let's get started


There's a port in there under those little bandages


Emily is an amazing nurse 


Getting started


Bathroom break


Time for the real stuff


Doxorubicin is red


No crazy reactions or magical immediate results. Just one tiny drip after another.


Kim's robot doctor


I had a pretty great birthday dinner out after all.



Tuesday, August 9, 2016

The Big Week - Part 1

For the past few weeks Kim's cancer has been an abstract thought. It's only manifested itself as a diet change or reading about meditating. Sure, we've been keen to more fully embrace life but there's been no real impact on Kim or any of us. Today, the abstraction became an actuality as Kim entered the hospital to have an implanted venous port surgically placed into her upper chest. This would be more than foregoing a sweet treat or pizza slice. And the gravity of the procedure, with it's full meaning, weighed on us over the past few days. We had some frayed nerves for the first time in many weeks.

But before we get to today's procedure, I gotta get on the soapbox for a moment. If you've ever considered the efficacy of a no sugar, no dairy diet, I can tell you it's the real thing. Kim has undertaken a low-glycemic, no sugar, no dairy, no meat, no alcohol diet in preparation for her chemotherapy program and she's become razor sharp. Physically, she's been in good shape forever, but she's really toned up and gotten stronger. Even her posture seems improved. Her mental acuity is also sharpened. If nothing else, folks, stop eating so much sugar. Kim is tuned up and ready to enter into this process with a strong body and a sharp mind.

I met her at the hospital today at 12:30, her procedure was scheduled for 2:30. Check in and paperwork wasn't all that bad and we barely waited in the surgical waiting room. You see a lot of other people in that room and each one of their faces tells a story of stress and concern.

Kim had surgical staging bay #5 with stylish gown and cozy slipper socks. Best of all, she had an inflatable, warm air blanket and pressurized leg sleeves. The sleeves promote circulation and prevent blood clots but for her it felt like a leg massage. About an hour prior to surgery, and once all the questions and forms are filed out, Kim was given a Valium. She seemed pretty smoothed out after that.

She was visited by everyone involved in the procedure, all to double check her condition and confirm the procedure for the day. Really incredible people. Of course, her anesthesiologist was a super handsome dude. As we neared her scheduled time, Dr Johnson checked in with Kim and she was all kitted up in her surgical gear including a hair net. Despite all this, she is the most elegant, stylish woman you could imagine. She gave us hugs, reconfirmed the procedure, and then "initialed" the location of Kim's surgery. All the other doctors use their given name initials but Dr Johnson petitioned the hospital to allow her to use a double heart signature. She drew it in purple and we talked about Prince songs we liked. A few moments later they wheeled Kim away from bay #5 to the operating room. I snuck out for a quick lunch and to contact family.

Kim recalls very little from surgery though there's one element of Dr Johnson's practice that all patients remember. She sings to them as they go under. Kim says it was "My Favorite Things" for her today. Dr Johnson, I love you and I hope Prince visits you tonight and sings to you in your dreams.

The procedure didn't take very long, perhaps 45 minutes, and I was visited by Dr Johnson in the waiting room where I was watching the US men's volleyball team lose to Italy. Stefano, if you're reading this, congratulations.

Kim was in bay #26 for recovery and when I got to her she was sleepy but still in a very chilled out mood. She slept a bit while I cruised Instagram and texted family. About 90 minutes later she ate some applesauce and had some water, her first food in nearly 22 hours. Another 45 minutes and she was ready to go home. The nurse wheeled her outside and I met them with the car at the door. Kristen brought Kim a soft pillow to place between her chest and the seatbelt for the ride home.

The port itself is pretty small and is completely under the skin. It is a Power Port brand catheter and will be used for her chemotherapy sessions and other procedures rather than an IV going into her arm. About the only thing I've seen Kim flinch at was the IV today in her hand and I sure understand why. But, damn it, that woman is tough and she hasn't said a peep in complaint yet.

And so here's another odd thing to deal with. I had to admonish the boys tonight for not following some directives I'd given them about today. Kim has simply not shown any fear since her diagnosis and has lived fully. I get a feeling that they don't get the gravity of the diagnosis. Even today, we'd been warned that she would be nauseated from surgery and likely very fatigued. Sure, she's a little sleepy and sore but no complaints at all. She wants to ride this weekend and she'll be going to work tomorrow. I'll keep an eye on her and make sure that she doesn't push it too far or too hard but, for now, I'm letting her do all that she wants.

Back to food, Andrew made lemongrass soup last evening with tofu and carrots. It was fantastic and it really brightened us all up. The mental effect it had was tremendous. Kim and I some leftovers tonight and it really put us back on track. Kim and Andrew made homemade ginger syrup last night for a ginger ale they garnished with frozen grapes and mint leaves. Ginger, it's magical.

Thursday is chemotherapy #1. Let's get after it. Feels good to have gotten this process underway.

To everyone who has commented on this blog or sent me notes, thank you, I am so thankful for your positive thoughts and I'll be back in touch soon.

-CD

The Big Views Diet is the best diet


We watched Pee-Wee's Big Adventure under the stars over the weekend


Homemade ginger ale


Andrew's Lemongrass noodle soup


This sign in the surgery waiting room seemed a bit odd to me


Um, the opening goes in the back...


Inflatable warming blanket liner



Dr Johnson's initials


Kim all hopped up on goofballs



Not an easy view to take in, folks


Recovery room



Power Port