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

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."

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.

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

The Week Ahead - New Normal

Been an uneventful few days around here. You know, other than the boys being gone. We sent them off to Colorado for six days to see their grandmother and it's been kinda quiet around here since. Kim and I did what every parent does when their kids are gone, sleep late. Saturday we drove out to Hood River and Mosier for some hiking and Sunday was time for Kim to connect with a friend also facing cancer. Later in the afternoon we enjoyed a ride. Suffice it to say that Kim will remain focused on exercise as a fundamental element of her therapy. But diet remains our primary focus. Sure, Kim will use chemotherapy as an initial first step but she is putting her full attention to food as medicine. I've had a lot of requests to explain what that means and I'm no dietician but here it is:

No sugar
Foods with low glycemic index
No dairy
No meat
Lots of water
No alcohol
A focus on foods that are proven to reduce inflammation
And a healthy diet of big views.

Now that last line is something I came up with. There's something important and elemental about the outdoors and taking in an expansive natural view. Those places where you stand still and just say "wow" in a soft voice. What better way to kick this off than a trip to the Columbia River Gorge? On Saturday we stood on the Mosier Plateau and looked to the east and west at the Columbia River. We hiked through some rocky sections and beautiful, grassy hills. We stood at the edge of a cliff and let the strong winds buffet us until we laughed; it was nuts up there. Later, in Hood River we went to the beach by the river and enjoyed letting the cool water get that hiking dust off of our legs. We went up to a cafe and took in a big view of Mt Adams. The drive home gave us even more great views. I'd say the weekend diet of big views was a success. Today was a little closer to home and quick spin up to Mt Tabor to see the city of Portland in the late afternoon.

And now it's time for bed and the start of a new week. Not too much to do this week other than some routine doctor's visits and a visit with the naturopath. This is Kim's final "regular" week prior to chemotherapy so we're going to try and enjoy it as best we can. I'll be digging into all the operational details of cancer such as insurance coverage, bills, and all that exciting stuff. I'd rather not get blindsided by something later on so this is a good week to look into all that.

The messages Kim and I are receiving from everyone have been wonderful, thank you for thinking of us. Enjoy this quiet week and we'll get back to action-packed posts a week from now.

-CD

The Mosier Plateau

Swimming Hole

All I did was mention dinner...

Tests / Herman / Wigs

This morning was another day spent at Legacy Hospital in NW Portland and, as far as places to be go, this is a pretty cool part of town. Kim's day began with an echocardiogram at 9:00 AM. With the lights out and lying down, Kim had a pretty easy go of it. The machine showed really cool colors as the sound waves reflected back images of her heart. Hard to believe a heart that big can fit on a display monitor. Following that easy test we traversed the many walkways above the streets between medical buildings though we ended up below ground in the Good Samaritan Breast Center for the BSGI. The Breast Center is a really nice place, peaceful and with coffee and tea. As has been the case with every office so far, such wonderfully empathetic staff.


I noticed that the women in this waiting room, despite their diversity, had one thing in common, strength. Every patient here had an air of fortitude and resilience. I'm betting that years of cancer advocacy have given these women the knowledge to face this disease with real vigor. I was pleased to see this. OK, so I need to correct something here, I've said women a lot in reference to the Breast Center and one of the patients I saw today was a man. Herman is an elderly man, with taut suspenders clipped to his trousers, and the air of man from the country. One percent of breast cancer cases are men and I'd bet there still remains a social stigma about it where he comes from. But Herman, nope, pleasant, courteous, and cheerful. His wife, damn it, she was cute as could be. I hope to see Herman again.

Now, we'd hustled down here because my watch showed we had only a few minutes to spare but after checking in and sitting down I realized I was looking at the minute and second hand not hour and minute hand so we had almost an hour to hang out. Guess what, they bumped up her appointment time. I couldn't go in for this test, (the Breast Specific Gamma Imaging), so I gave Kim a smooch and walked a few blocks back to my old office, said hello to some friends, visited the fine folks at The Athletic, and had some coffee at The Commissary Cafe where Andrew works. Kim exited the test an hour later and was looking for me but I was still yapping away at the cafe. She sent me a note and dropped by to grab a salad for lunch so I got a bonus smooch before we both returned to work for the day.

Kim got home around five o'clock and helped the boys pack for their trip to Denver on Friday. I hustled home as well to meet briefly with Kristen and Kim as Kristen brought by even more resources for Kim to consider. Chief among them today, wigs.

Now Kim has spent some time on the subject of hair loss and possible therapies to offset it. We've both looked into cold caps and any number of ice therapies to be worn during chemotherapy as there is some evidence that it can reduce or prevent hair loss. We talked about it a lot. I mentioned to Kim that I wanted her full attention on the problem and not giving energy away to symptoms. She agreed and then decided that since no one she spoke with during her process had first hand knowledge of these therapies that she'd forego the experiment. We did have some great conversations with friends who have experience with this but Kim made the final call that the distraction would be too much.

I had to leave the meeting early to take Andrew to his oil painting class but Jason was eager to help Kim look through wig samples. (While I was out waiting for Andrew I grabbed some dinner and bumped into two friends. Felt good to get those hugs and to bring home the ones they sent for Kim.) So I'm home now and there's a wig box on the dresser. Jason apparently didn't like the super-blonde style or the dark brunette so Kim's first wig will likely look similar to her hair now. But Kim has told me that she may try some wyld stylez* and that no one in Portland is even going to notice because half this town has colored hair.

Initial results on tests today do not reveal anything further than what we already know so we keep to our plan. Chest port goes in on the 9th, chemotherapy on the 11th.

We are kid free for the next six days. Let's ride some bikes and go to the movies.

We had a good day today so I'll ask that you send some thoughts to Herman tonight.

-CD


*my phrase, not hers

Tests & Oncology

Today was a long day for Kim. Up early for work and then off to Legacy Good Samaritan Medical Center in Northwest Portland. CT scan for chest, abdomen, and pelvis at 10:15AM. This required an iodine injection but the entire process went by relatively quickly. Then some waiting which gave her time to read. We do a lot of reading now. And then we talk about what we've read. Next up, a bone scan in the early afternoon. Another injection, this time tiny amounts of radioactive materials which are taken up in various parts of the body and reveal those area where the body may be attempting to repair itself. The bone scan took 45 minutes and Kim just had to lie still. She spent this entire part of the day on her own and then snuck off for lunch over at The Commissary cafe where Andrew works.

I rolled over on my bike for a 3:00PM meeting with Dr Eric Anderson, her Oncologist. How do we keep getting such great members on our team? Amazing guy and the first thing we noticed was he wears cool socks. He is also recovering from a cycling accident so it's nice to have someone who knows the fun of riding. Dr Anderson, along with a nurse, walked us through the full chemotherapy process. It will be challenging but we begin with good news.

The CT scan and bone scan did not return any results we didn't already know. So Kim will be taking on the same tumors we've known since last week. Chemotherapy will be 8 total treatments every two weeks. The first four weeks, cycles 1-4, are a twin dose of doxorubicin and cyclophosphamide. Cycles 5-8 will be paclitaxel. Kim will have a port placed in her chest allowing doctors to access her veins easily and to do lab work with minimal discomfort. Her port will go in the day before her first treatment.

Her treatment begins Thursday August 11th at 11:15AM, my 48th birthday.

Why we are doing chemotherapy first:
Downstage the tumor for an easier lumpectomy
Prognostic information gathering
No concern for wound healing from a surgery-first procedure
Psychological benefit of reducing the cancer

Side effects are likely to be nausea, fatigue, reduced blood count and possible anemia. She'll have a cocktail of drugs to counter all of this. We are also preparing a super diet to fortify her and keep her active.

Hair loss is almost a certainty with thinning likely to begin by the second cycle and total loss by the fourth cycle. This is the only wavering in Kim's strength and I get it. Any of you older men reading this know the feeling, we tie our youth and vitality to our hair; it's tough to watch it go away. For Kim, and women like her, it has the same effect but with a faster pace. And it's a tell-tale sign for the world about your condition. Kim has read some interesting therapies but also has begun thinking about some fun wigs she can wear. I'd bet we find some cool hats, too.

Kim's oncologist is pretty great. He's told her to remain active, stay in constant communication with him on any thoughts, and to "push herself, sort of". I love this comment and I love that he's expecting Kim to be assertive with her recovery and her day-to-day life. He also encourages complementary therapies such as acupuncture going so far as to recommend his own personal therapist. He also advises drinking lots of water. Lots of it. That's good advice for everyone reading this, too. Do it.

During today's business at the hospital we had Kristen and Jim sending notes, staying in touch, and reminding us to ask good questions. These two are incredible and many thanks to them.

Dr. Anderson left us with a positive prognosis and the confirmation that he'll do whatever it takes to help Kim feel her best. He has a great relationship with Dr Johnson so our team is lining up for a great run.

Word about this blog went out today and we've had over 300 friends begin their journey following Kim through hers. As I type this, Jason is performing card tricks with Kim and there's a lot of laughter. Andrew is making a healing tea he calls Hug In A Mug and the house smells fantastic. Me? I made dinner and it was pretty good if I say so myself.

More tests on Thursday so the next two days get to be normal around here.

Thank you for your well wishes to Kim, she feels them. I get a few of them, too.

-CD