Six Months

Kim learned of her cancer diagnosis around dinner time on June 19th. Six months later and she's passed through 4 months of chemotherapy, dozens of doctor's visits, and lumpectomy surgery just last week. Her chemotherapy port was also removed during that surgery. Today, December 19th, she's in good spirits and recovering quickly. She's been out for walks, joined us all to see Rogue One, and will return to work tomorrow. Her pain medicine pump came out Saturday evening (by yours truly) and the surgical drain will be removed Thursday morning (by a doctor, whew!). Thursday evening will be the first time in quite a long time that Kim is back to normal. There's some peach fuzz on her scalp. The daylight hours, thankfully, will also be growing longer every day beginning Thursday.

By now I'd bet that all of you know the play-by-play from her surgery last week as so many of you acknowledged well wishes on Facebook as I posted throughout the day. So, for this post I'll just add some detail and let everyone get back to the holiday buzz.

Kim's surgery went as best as we could have hoped for with her doctors reporting successful procedures and her quick recovery from anesthesia.

The real take away from this procedure is that there's never really an easy step. Prior to surgery there's the cleaning of the house, the washing of all the linens and towels, showers for both of us with anti-bacterial soap, all the fasting Kim must do in advance. Next, at the hospital, it's loads of questions, tests, and pre-op procedures. The surgery, for Kim, lasts about 5 minutes. For me, those 4+ hours were spent hanging out with friends nearby because listening to the mainstream news on the TV in the waiting room is mind-numbing. The benefit of this hospital being in town is that there's so much to walk to nearby including snack and treats for both Kim and me.

Perhaps the hardest part of this surgery is that it's not "over" once leaving the hospital. Kim had a pain medicine pump fanny pack attached to her waist with a catheter inserted into her upper left chest. She has a surgical drain exiting her left underarm and a collection tube attached to a special bra. For three days she was bothered by both. Now, it's just the drain. It's unpleasant, uncomfortable, requires regular care, and, of course, requires another visit to finish off. Time, Kim is most eager to have her time back.

Kim's check-in time was 7am for a 9am start. A heavy winter storm hit the city the evening prior so getting up and out early was important. Nothing was keeping Kim from her appointed surgery time.

Please, no more waiting. More than anything, Kim wanted that chemotherapy port out.

Back again in the same pre-op bay as her port surgery. Gotta love those inflatable warming blankets.

Prior to surgery Kim required an ultrasound and trip between buildings. We took the skybridge which was chilly but offered a beautiful view of the quiet, snowy city streets below. Warm blankets are always at the ready.

Ultrasound confirmed location of the tumor and lymph nodes. This doctor was so very nice and quite humorous. Thankfully so, as his job is to give Kim two injections close to the nipple and then insert a very long locating wire into her breast. Damn, Kim is tough. Not a peep from her, just some laughing at his jokes.

Kim was visited by four doctors prior to surgery and each one gave her a thorough, professional, calming talk about what their job would be and the outcome they expected. This is her anesthesiologist. I forgot his name. Sorry, I was nervous.

Each doctor signs their initials at the location of their procedure. Dr Nathalie Johnson is the only doctor authorized to use a symbol, hearts, as her official signature.

Off she goes. 

No one ever wants to see this view of their loved ones.

Though, when it's immediately followed up by this sight, you're filled with great hope. Being married for nearly 20 years there are moments or images that are permanently imprinted and this is one that I will always recall. The image will never fully show that smile or that sense of strength. 

Recovery requires lots of tests, exercises, and such. There's a nurse it at regular intervals to do something and usually just as Kim falls asleep. This is a breathing exercise used post-surgery to fight of pneumonia. Kim had to breath in 10 times with the hopes of getting the indicator to the "500" mark on her first test. By breath 4 she was hitting "3000". The nurse, said, "What do you do? I've never seen a woman do that."

Sunrise after our evening in the hospital. Surprisingly, a restful sleep for both of us.

Kim was so eager for the physical therapist to arrive so she could learn her exercises and get out of the hospital. The therapist came in and I said, "I know you."; she was the star of the PT video we'd watched the night before. She gave Kim a quick talk and then asked her to stand up. Kim got right out of bed. The therapist said, "Oh, you can do that on your own?"

Three days following the surgery Kim's pain medication pump was empty and it was time to remove the catheter. I'd watched the film on how to do this and was ready to go as I knew this was something we could do at home. Now, in the instructional video the catheter is only inserted about an inch or two. This one was inserted from the black mark on the left alllllll the way to the end over on the right. I made Andrew and Jason assist with this. Jason's face wasn't white, it was clear. Kim, as always, didn't say a word.

Ten Years Starts Today

Kim went in for her surgical consultation on Monday of this week. The great news is that the tumor has gone from 3.7 cm to just a bit of 2 cm. Her lymph nodes have also diminished in size though she we be having three of them removed. We went with high hopes that the plan for surgery would be a quick in and out and I'll say that maybe we were flying a bit to high off of the chemotherapy finish.

The surgery will likely be an outpatient procedure on Thursday December 15th though there is a chance Kim may spend the night. It really will depend on what  Dr Johnson discovers during surgery and Kim's comfort level with the drain she'll have in place to manage the lymph node removal healing process. Man, what a bummer. Recovery from the lumpectomy and lymph node removal will have Kim toting a surgical drain for at least a week. There's also a risk of lymphedema, swelling and pain in the arm on the side of the removal. Kim is confident in the surgery process but very worried about long-term effects such as the arm pain. Dr Johnson is as good as it gets and we are confident that the procedure will go well. One benefit to the surgery on that day is the removal of the port in Kim's right chest. It'll be a big day.

Today was the first Thursday in four months that Kim did not return for chemotherapy on the alternating week. She's feeling better and better, her feet don't hurt as much. She also seems to mentally willing her hair and eyelashes to grow more quickly. 

But today is a day to note because it's the first day she's taken a Tamoxifen Citrate tablet. Tamoxifen is used treat breast cancers that test positive for estrogen receptors. It blocks the effects that the hormone estrogen has on cancer cells and lowers the chance that breast cancer will grow. By starting today she'll give the drug a few weeks to work the tumor size down even further. 

She will be taking this drug every day for ten years.

I cannot get my head around that time period. Add to this the possible side effects of hot flashes, nausea, fatigue, headache, and hair thinning and it's a quick end to the sense of joy and optimism we had just a week ago. Sure, we knew four months ago that this drug would be prescribed but it really hit home today standing in the kitchen as she added the tablet to her pile of vitamins and supplements. It feels like another member of the household to me. 

The bright side, right? Kim is strong and healthy and will only become even more so as we go on. To celebrate this fact the family is off to Seattle for the weekend. Art museums are good for each one of us. 

Here's to 2026

Chemotherapy #8

Done. Finished. Over with. No more chemotherapy. Kim's final session was last Thursday. Our friend Jessica Heenan joined in for this last session and really brought it home in style. Jessica works on an organ transplant team in her real life and at home she's her family's version of me so we get along great even though she's not really a dork like me. Jessica even had a pizza delivered to the infusion center for this last session. (Yes, it was gluten free). Thank you, Jessica for helping Kim wrap up this long four-month process.

Thank you, Jessica!

Following the session we said good-bye to Jessica, who had to go to Vancouver for bizness, and then we headed over to see our friends at The Athletic. We checked out all the cool new stuff and then popped next door to The Commissary for a late lunch. Everyone's support through this process has been so helpful for us both. Again, thank you.

Kim and I got home in the late afternoon and spent some time with Andrew and Jason before deciding to walk over to one of our favorite local restaurants. We enjoyed a great meal together with plenty of laughs; Kim and I shared a glass of wine each. We took a nice walk home and I soon found my way to bed at 7:30 PM. Kim was in just a bit later and we were both zonked out by 8. The stress of these chemotherapy sessions along with keeping Kim from getting a cold or flu through the process was a long, four-month grind. It felt good to let that go. Kim doesn't feel very good right now, this final session really stacked up the fatigue on her, but she feels good overall. Every day from now on is back to feeling good. She's stoked.

Kim had a sonogram this week to look at the tumors and they are much smaller than at the start of chemotherapy so at least all the side effects were worth it. She'll go in for a visit with her surgeon to assess the upcoming lumpectomy scheduled for mid-December. Once she's in for that procedure her doctors will now how much radiation treatment she'll need so we do have a bit of uncharted waters before us. Still, it all feels manageable in comparison to chemotherapy.

Kim says she wants to write a post on this blog so I'll leave some things for her to say soon. But for now consider this, other than the 8 chemotherapy days Kim didn't miss a day of work. She didn't miss a moment of the things Andrew and Jason have been up to. She's been upbeat and kept us all on the move and going out to see and do fun stuff. She's so tired, I can see it, but she's resilient and resistant to being held down by it. She has not complained or called much attention to herself. She's embraced the pink hair and I wonder how she'll be someday soon without it. She makes a lot of new friends out in public with it. Yes, her feet still really hurt and her legs ache a lot. I know she's looking forward to the Neulasta (bone marrow stimulant) finally being purged from her system so the aching will subside. I am a little concerned that sometime next summer when she's back to feeling good that she'll smash us all on the bike.

Oh, and she's excited to have the port removed from her upper chest. (Ugh, even just typing about it makes me pee a little bit.) Nope, Kim never complained about the port either other than the time I tried to give her a shoulder massage and forgot it was there and during the final chemotherapy session when they assigned her a training nurse who fumbled with the port injection at first. Kim, sweetheart, you are so incredibly brave and strong. It's just so normal to me and the kids to see this strength that we sometimes forget what you're going through. Thank you for sharing that strength with us.

So, another Thursday with something to do this week although this Thursday will be nothing but good times. I have several cans of cranberry sauce, (none of that hand-crafted crap, this is the good, cheap stuff!) hidden away and we're gonna enjoy all of them along with a good bottle of wine. We all have a lot to be thankful for, as always. Thank you to all of the friends and loved ones reading this, I am so thankful for your support. Happy Thanksgiving, everyone.

 Kim, always baked.

The reason for the season...

Chemotherapy #7

And so it is that I find myself on the eve of chemotherapy session #8 having realized I never posted about session #7. It's become so normal and uneventful in most cases that this one just sort of scooted by. The real highlight of the session was having my mother, Anita, attend with Kim but even they fell under the spell of just-another-average-day and didn't even get a photo. Session #7 came and went and we probably didn't pay all that much attention to it because our eyes are on #8. Thursday November 17. 4 months later. Kim, I know is very excited. To celebrate we are off to see Hypnotic Brass Ensemble this evening at the Arlene Schnitzer Hall downtown; it's a family affair and somehow we are all excited. Should be a fun night.

So, what to say here? I've been thinking about what information might serve best for instructional purposes here and it's a touchy subject, bills. Money, of course, is of no concern when compared to someone's life but it is a reality we face. So here goes.

Every day our mailbox is filled with letters from the hospital or insurance company. There are letters to inform us of treatment services being considered for payment, letters confirming payment, and letters about the letters. Every letter has a privacy statement or some other insert, it's nuts how much paper they waste on telling us nothing. Some envelopes contain bills and, so far, they haven't been all that bad. We are fortunate to have insurance and we've been benefitting from the plan. The bills for all the early doctor's visits and procedures have been small though bills for CT scans and other big procedures stand out. The first chemotherapy bill arrived and the pre-insurance cost is $20k. That's for a single session out of 8 total. Insurance is picking up most of it though what's left is undetermined at present. I'll keep you posted but please know this is not an appeal for help, simply a heads-up on how much treatment costs. So much of this process is never spoken of and only discovered as it happens for those going through it. I'm hoping this blog helps demystify the process for anyone facing it in the future. 

I suspect the health care system is flawed though I won't go tin-foil hat conspiracy here on everyone. That said, why are the prices of cancer drugs so high and why have they gone up in price so much so quickly over the past few years? Drug companies refuse to discuss how they set prices and, under our current laws, they can charge whatever they want. Back in a previous post I wrote about a 22-year-old women in for her first chemotherapy treatment. Will she be forced to choose between a personal bankruptcy she can never emerge from or the best possible treatment to extend her life to its fullest? Hospitals and doctors are pushing back against pharmaceutical company pricing though I think we'll need stronger legislation to protect the people of this country. You should pay a premium for luxury items bought voluntarily, not life-saving medicine. I found this quote while doing some research:

"They are making prices unreasonable, unsustainable, and, in my opinion, immoral," said Hagop Kantarjian, MD, chair of the Department of Leukemia at the M.D. Anderson Cancer Center in Houston, referring to pharmaceutical companies and their cancer drugs.

Kim and I are also fortunate to have some guidance through this process and our most recent education was a very instructive meeting about insurance and bill paying. Very simply, don’t pay anything until it’s all said and done. The billing process is long and not perfectly connected so wait until all the facts are on the board before acting. The best advice I was given on the subject, “This is going suck.” And by “this” I mean the coordinating and tracking of bills and costs. With so much information bouncing back and forth between hospitals, doctors, and insurance offices there’s a lot of unconnected dots and it's my job to connect them.

Match explanation of benefits to services and costs, if there’s no match between numbers for the same visit/treatment, don’t pay the bill just yet. Sometimes it takes time for benefits to post properly between all offices so tracking everything is paramount. The concern here is paying something prior to the full cycle and discovering you paid too much. 

Again, money is a sensitive subject when it comes to someone's health, or life for that matter, but the expectation of a long life after treatment demands that attention be paid to ensuring our future best interests. The worst part of the money conversation is that the person under care often feels guilty for all the costs they are incurring. It's a normal reaction and one that shouldn't be dismissed without acknowledging that person's feelings. Kim will occasionally apologize for all this and I have to be gentle in reminding her there's nothing to apologize for. This is a fairly common relationship between the patient and the caregiver and especially, I believe, in the case where the patient is feeling good. So I am on the job of making certain it's all taken care of and that Kim does not feel any additional stress from the process. Still, there's a daily reminder in the mail for all of us that she has cancer and that there's $ associated with it. 

Kim will finish up chemotherapy tomorrow and then surgery in December. She'll need time to recover from surgery and to allow for the holidays so her radiation treatments will begin in January. For the insurance company that means a new billing year so we'll have to meet our deductible for an additional year. The insurance company is allowing us to change our plan to buy up to a lower deductible so that's a positive result of meeting with them and coordinating payment for care. Yeah, just writing about this seems unsavory, I trust it comes across as helpful. I'm looking forward to writing about session #8.

-Chris

The pink hair always attracts fans. We got to meet a few of the members of the band after the show at last night's Hypnotic Brass Ensemble show. Amazing, amazing performance. Such a great way to energize Kim for her final session. 

Kim's Halloween costume was so much easier this year because she could easily wear a wig. 

Comet continues his antics. How about a nap in the dryer?

Thoughtfully Indulgent

Forty-eight hours from now Kim will have one remaining chemotherapy session to go. I can tell you that the anticipation for even that milestone is high right now. This therapy is a grind, I know I've said that a lot but it's the most apropos description I can think of. Finding even small victories throughout the process is what keeps everyone moving forward. Kim, well, she's incredible, right? She's really managed to find normalcy in all this and we've had a great off week since session number 6. She's upbeat, energetic, and bright; I cannot imagine how she does it. Still, every day she's up and at it and always with that crazy desire to do more than time allows.

Some things I've forgotten to mention and a few thoughts I've had over the past month:

Genetic Testing
Kim underwent genetic testing back in September to determine if she had inherited mutations of the genes that produce tumor suppressor proteins. Her report came back negative with no clinically significant variants detected in 24 genes. This puts her at lower risk, much like the general population, for other types of cancer. Further, it suggests that Andrew and Jason do not have as high a risk of inheriting a mutation. There's a lot going on with this and if you'd like to read further, here's a lot to look at.

85/15
Back at the start of treatment we were reading every recovery and remission book and were gung-ho on a strict, life-saving diet. We both stayed true but as time goes on that dry toast with eggs for breakfast is a bummer. I mean, you can only prepare an avocado so many mornings until you run out or you just crave butter. We've found gluten-free pizza and pasta and we've all done our best to adhere to the plan. But some days Kim just needs a little something to pick up her spirits, a literal taste of the good stuff. And so we go by her instinct right now and every now and then she has real butter on toast or enjoys a piece of real pizza. Consider it 85% strict and 15% thoughtfully indulgent. We're not going too far off course but keeping the spirit alive is as important as the body. And, yes, I look the other way on some snack size Halloween candy bars this week.

Complacency
I'm not exactly sure that complacency is the word I want here but it's the one that came to mind. As you have just read, we've loosened the restrictions on diet to allow Kim some moments of joy. But successful progress and the long length of time this treatment requires allows bad habits to form or return or for drift from the goal to occur. Being satisfied with where we are and mastering the new normal does not mean we've reached our goal or that Kim is simply going to coast across the finish line for the win.

Prior to Kim's diagnosis the house always had a drawer full of sugarfree chewing gum. I've always looked past the phenylketonurics warning on the labels but with the new lifestyle I wanted it gone. Just last week I saw a new pack in the drawer and had a piece. The next day I did the same and then had that what-the-hell-are-you-doing moment with myself. Give an inch and you may give up a mile. I'd also been very diligent about using a water filter since Kim's diagnosis, (Kim and the boys have always used one), but in the past week I've just filled bottles at the tap and told myself, "next time" on the filtered water. Acceptance of the disease and treatment along with control of the process has us comfortable and we allow ourselves to drift back into convenience. Just yesterday, in fact, Kim forgot to go to her acupuncture appointment because she's been feeling so good. Or, she's just accustomed to feeling the way she now feels. There's also a little chemobrain at work, too.

In racing, you charge toward to line, not just cruise across and we've got to get back to the focus and discipline of our early ways. Many, many thanks to the meal train supporters for their amazingly delicious and healthy meals. We are back on track. (OK, a few more candy bars and then back on track!)

Thank you, as always, for reading and sending your thoughts to Kim. Yes, we can feel it here. Every day we feel it.

Some days our Big View is just walking down to the Willamette River 

This goofball keeps us in good spirits

Chemotherapy #6

Our plan from the beginning was that I would join Kim for chemotherapy sessions #1 and #8 while allowing Kim to welcome friends and family for all the ones in between. I've joined Kim for her oncologist visits and then given her a smooch at the infusion bay for visits #2 through #5 but for #6 I stayed for the entire session. I swapped with our friend Jessica who will take over #8 for me. She's an organ transplant nurse and was on call for this session so I didn't sweat the change. I mean, that's a hell of a job compared to talking about bikes on the internet and stuff. So, back to #6 last Thursday.

The visit with Kim's oncologist, Dr Anderson, was routine. All her numbers look about as good as they can for someone soaking up all that chemotherapy. He once again confirmed the reduction in size of the tumors and is pleased with her progress. Our visits with him remain positive and brief, I'll take that as a good sign that there's little to be concerned about. He's a funny guy and always has on colorful socks. He fits well within our circle of friends. To say that the visits with him are quick isn't to say that he's in a rush or isn't thorough. He's very present in his conversation with us but wants to get things going for Kim as he knows better than anyone that the sooner we start the sooner we finish.

These final four sessions are longer and, quite frankly, not all that interesting. They get Kim started with a big bag of Benadryl to offset any potential allergic reactions and for the next 30 minutes she's kind of dazed. Last session they pushed it pretty quickly so for this week she asked to have the drip go more slowly. The result was that she felt better and more alert.

Did I say more alert?

Once the Taxol bag gets hung and the drip starts it takes about 3.5 hours for it to complete. We bring books, magazines, snacks, coloring books, and all sorts of stuff to do but don't really end up getting much done. Kim dozed off a few times and I managed to read some magazines and look at everything on social media. Kim has been scheduling the sessions for 9:30 AM so that we can get out prior to the 3:00 PM rush hour. It's worked out well for us given that Portland now has real traffic to contend with.

It dawned on me last week that I'd let the Big Views Diet drop off so plans were made to take advantage of a break in the rain on Saturday to get outside. Now, all plans hinge on Kim feeling well on the weekend. For the most part, she's fine on Friday and then starts to feel symptoms creep in on Saturday afternoon. But the sun was out and she really wanted to be outside so we headed out for an easy hike with Jason joining along.

I choose Smith & Bybee Wetlands, a 2000 acre public park and nature preserve between the Columbia Slough and Columbia River north of Portland. It is one of the largest urban freshwater wetlands in the United States and home to thousands of birds. While we didn't get close enough to see the big populations of birds we sure could hear them. We did get to see a few hawks up close as well as garter snakes.

The main reason I chose this hike was that it is pancake flat. Kim had daydreams of a mountain hike but she's lost a few gears and I didn't want to put too much stress on her with climbing. We'd also never been out here so it was fun for all of us to try something new. Always fun to see a different view of the city as well.

Smith & Bybee Wetlands

So, six down and two to go. It sounds close to the finish but that still means 6-8 weeks of chemotherapy in her system. She never complains. Never. The closest I've heard was earlier this evening when I asked her the name of the drug she's on now and she said, "Poison". She's still skinny and pretty tired most of the time but hasn't missed out on much. So many side effects wreaking havoc and the best Dr Anderson can say is "hang on". He's doing all he can to keep her comfortable but his job is to kill cancer so there's gonna be side effects.

She still can't taste very much and deals with GI issues every day. Her eyebrows and eyelashes are starting to thin now, as well. Strangely, her thumb print is disappearing and she cannot use her iPhone ID with much success these days. And, boy, do her feet hurt a lot. On the good side, the pink wig really suits her and she makes friends wherever she goes. It helps, too, now that it's cooler outside and she doesn't overheat wearing the wig for long periods of time.

Session #6 marked three months for us in chemotherapy and that makes us veterans now. Kim has been called on to advise new patients about what to expect and I see new couples in the center for their first time now. It feels like a lifetime ago that it was us. They have that same enthusiasm to fight like hell but they don't know the grind that is ahead of them. I do the best I can to smile and show my solidarity. The infusion center is an interesting place to spend four or five hours because you learn a lot of intimate details about people. This week I saw a number of patients in the clinic on their own and I wonder why that is. Did they choose to spend the time alone or are there reasons no one can join them? I know I can't do much for Kim there other than help with blankets and getting water but I feel like someone needs to be there with her. I want someone there for everyone.

Every time a nurse brings medicine they ask for the patient's name and birthday to confirm the proper recipient of the medicine. Next to Kim for this session was a 22-year-old woman who was by herself. She looked even younger and I felt so angry that she had to be here with this disease. Her IV hurt and she was in a lot of discomfort. It's hard not to involve yourself in someone's life when they are that close to you. Two chairs from her was an elderly woman on her own as well though she was on her phone with a relative for much of here visit. She didn't seem phased by a bit of it all and I got a sense that she'd seen enough in her time to take this treatment in stride. Kim, too, I'd say. She dozed off once or twice and also seemed to manage the day unfazed. She drinks a lot of water during sessions and she pees a lot. Like, a lot. Up and down and up an down. I think I put blankets on her a dozen times.

I enjoyed my time with her this session. I ran out for coffee in a terrible rain storm and we enjoyed some breakfast sandwiches with that coffee while trying to sort out the deal with our two kids. Teenagers are insane, (of course), and chemotherapy does nothing to help fix them. But it was as good a day as one can have for this and there's only two to go.

Thank you to everyone for meals, offers of meals, cookies, funny stories, thoughts, advice, all of it. We feel every positive thought here. Thank you.

Jason made a friend

Soaking up the last rays of sunshine

Chemotherapy #5

I seem to have lost my vigor for writing these posts. It's been 8 days since Kim's chemotherapy session #5 and where I once sat down right away I now just find anything else to do other than this. Where those first posts felt like victory reports I feel like they're now just recounting complaints. I'm much less motivated to write these reports as there seems like so little to celebrate. Yes, we have confirmation that the tumors are getting smaller and softer. Numerous visits over the past two weeks show that progress and that is wonderful news, yes.

But in the here and now, day to day, Kim is really worn down and showing the effects of this treatment. She rarely complains but I can see just how hard life is for her right now. There's the side effects of treatment and the side effects of the treatments to treat the side effects. When she thinks no one is watching she shrinks down and you can see the weight of the struggle lay heavy on her. She's lost a lot of weight and can look frail at times. I can see the fury inside her of how aggravating this is to her spirit. She wants to be outside walking, running, or riding, but fatigue is a real foe right now. Thankfully, that pink wig keeps her spirits bright and, other than some forgetfulness, she's remained a bright force around the house.

Chemotherapy #5 is the first of the final four and an all-new mix of medicines. It's a longer session and she seems even more aggravated by having to sit still for an even longer time than before. This change in medicine had her worried as her doctors made clear that there could be an allergic reaction or unknown responses to the new mix. She didn't have any bad reactions though the incremental effects of fatigue seem to be having an much greater effect.

This new treatment has the likely effects of peripheral neuropathy, numbness in fingers and toes, so she's been pre-treating it with acupuncture and it seems to be having good effect. Her oncologist has also been supportive in working with Kim to offset as many of the side effects as possible though he's very matter-of-fact that the treatment is hard no matter what and it has to be. Pretty much everything hurts for her right now, though. She's really tired and I know she simply hates having all this medicine coursing through her body.

For this session Kim was joined by Karen Blecha. We met the Belcha family back in Jason's elementary school days as their oldest son is friends with Jason. Karen has taken Kim for some spa time to get her toes done and just to hang out. For this first long session she met us both at the infusion lab and spent the day with Kim. I've really appreciated these guest visits with Kim as it allows me to keep my work life in check while also giving Kim valuable time with friends. This illness and its never ending doctor's visits has taken away so much of Kim's free time. Just in the past week Kim has turned to Uber for mid-day appointments simply to take away the stress of driving during the day. Treatment is a long, tedious grind.

Thank you, Karen, for being with Kim on a day that I know she was very nervous.

The meal train continues to be a great help for all of us. The time saved from shopping, preparation, and clean up has been put to good use relaxing and catching up from busy days. Even better, we've been introduced to so many great new meals and gotten to spend time with friends as they drop them off. I learned a valuable lesson from my friend David who told me that rather than say, "Let me know what we can do to help." it's better to say, "Here's what I'm going to do for you guys." For any of you out there with friends in distress, make them dinner. It's a tremendous offer and really lifts everyone's spirits. You should probably include cookies for dessert, too.

In other news, Portland weather is here. An apocalyptic storm is passing through town this weekend and I read that 19 trillion gallons of water will fall in the region over the weekend. Kim is excited to use the inside time to visit the Portland Art Museum and stay home making soup. Seems like a good weekend for all of us to cool out a bit. Everyone here is pretty good, folks, three sessions to go. Kim has lumpectomy surgery planned for December 15th and then we'll power into the New Year. Thanks for all the thoughts this year, I say it every message but we do feel them. Thank you so much.

Chemotherapy #4

Lots and lots going on in the two weeks since chemotherapy session #3 but before we get into all of it - Hey, she's through session #4 and that's halfway! Good work, Kimmie.

Session #3 seems to have brought on a much heavier fatigue and it's been a tough couple of weeks for Kim. It's been a tough stretch for all of us. A lot of credit goes to Andrew and Jason for this post as they have given so much support as of late. Unflappable, those two.

The big news around here was a visit from Kim's youngest brother, Shawn, and his six-year-old son, Cory. They flew last week on a Friday and stayed through Monday. It was a perfect visit and we all want to thank Shawn's wife, Amber, and their two-year-old twin sons for letting dad and big brother out of the house for a while. Man, did we have fun. Cory was so excited to hang out with his older cousins and there were lots of laughs around the house. Shawn is always a treat to be around because he's just so smart but mostly it was good for Kim to have someone around who speaks the family language. Those two, pretty funny to see them hanging out.

Some very funny things happened while Shawn and Cory were here. First, it was a fraternity house for four days. Five dudes, a dude cat, and just Kim. Second, all of them, (except me and the cat), are blood relations so they often get into this weird family-mode thing. It's probably because they're all great artists and I'm the odd one out.  Perhaps my favorite memory is of them all watching the microwave make popcorn in this new pop-up silicone popper we just got. Design and technology nerds, the lot of them.

On to chemotherapy #4, the last of this round of drugs. Kim's oncologist says this was the hard round and that sessions 5-8 will be an easier dose of a new medicine. But, the cumulative effect of chemotherapy has taken a heavy toll so it's not like 5-8 are gonna be easy. Kim has been off the bike for a while and she's really begun to lose a lot of weight. She's really tired and even eating isn't pleasant right now. It's normal, we've been told, and we are inspired by the success of treatment so far. It's tough, but she's half way through.

For this session Kim was joined in the infusion bay by our friend Julie Krasniak. Julie is the owner of The Athletic Community, a super cool apparel brand with a beautiful store in town, an artist, and she's married to this nerd friend of mine, Jeremy Dunn. Julie is also a retired French professional cyclist so she's way cooler than anyone I know. Except for maybe Jeremy. Or my son Jason. Probably a three-way tie.

One of the biggest changes we've had in the past week is that we've been saying yes to offers to friends asking to make dinner for us. You know what? It's a big help and we've had some really great new meals this week. Like most people, I've been hesitant to say yes because it's just some stupid thing to say, "No, we're OK, thanks." I sure love that people want to help and it really has made the past week a lot easier by removing that one hassle from the day. And, man, have we eaten good. Sure, I think the previous blog posts scare people into thinking Kim's diet is impossible to cater to but it's really not. Many thanks this week to the SyCip and Heenan families for feeding us.

The only bummer in all of this is that Andrew is away for the week at Outdoor School as a counselor and he missed out on some great food.

Kim and Apple, (whom I mentioned in earlier posts as Kristen), have been meeting often and Apple has provided Kim with a full array of wigs. Kim found a beautiful light pink wig that isn't too hot on her head and really looks great on her. Each time we go out she gets smiles and compliments. She looks great, doesn't she? Thank you, Apple.

Watching the microwave make popcorn

Jason and Cory

Two Sides Of The Coin

With nearly every post on this blog I've put forward the positive side of the story, heads up if you will. Every coin toss won, though, still has the other side of the coin and it occurred to me a week or so ago that I should share some of the tails. I've been hearing from many people that this blog has helped shine some light on how to cope with cancer so I feel obligated to mention some of the less-than-awesome stuff here today.

Deep into chemotherapy now, our lives have stabilized and the shock of the diagnosis has worn off. Further, the 100% kick-ass resolve has diminished a touch. We are back to our regular lives because regular life goes on. There are jobs to perform, household chores to do, school is back in session, and somehow it feels like it's always time to make dinner. And what to make tonight? Fuck, I feel like I just finished washing dishes from last night's dinner. Andrew, to his credit, has been good about cooking but he's still a high school teenager and not always quick to pitch in. The house is tired because Kim and I are tired. This new life isn't all that great.

I'm angry tonight. I've been angry for a few days now. Kim and I were really into good things this summer and I was looking forward to things continuing. Namely, our physical relationship. We're just months away from our 20th anniversary and anyone paired up that long knows there are peaks and valleys to all things in a marriage. This summer seemed like the highest peak we'd ever had. And, yes, by "physical relationship" you know what I mean. But we were also riding together more and hiking more and just being active more. Kim was in great shape and routinely would drag me around on the bike. Cancer and cancer treatment has taken that away. I know it will return but right now, here in the moment, I feel like something's been taken from us.

She had a really great streak of riding to and from work by bike this summer and the positive effects were evident. Stuck in a car again because of fatigue and other physical issues has her really down. Plus, there's seemingly always a doctor's appointment to go to. She hasn't ridden to work in a long time. Still, she hasn't missed a day of work other than her chemotherapy days and on the days it's in the afternoon she goes in for the morning. She misses the daily routine and escape of her bike commute and I understand. Rush hour car commuting is likely one of the worst outcomes of human "development". (edit - She rode to work last Friday. She felt terrible but she wanted to be out. Back at home she mentioned how nice it was just to smell the air while riding.)

I went for a doctor's visit and discovered that I am Vitamin D deficient, anemic, and my hematocrit is 37. The low range for a healthy male is 40. For our friends who follow pro cycling you know that 50 is the ideal number, the max value allowed under the sports anti-doping rules. Riding my bike is even harder now because I don't have enough red blood cells to carry oxygen. I can take supplements and get out of this much more quickly than Kim. I am not lamenting my issue, just pointing out the impact that an illness such as cancer can have on caregivers.

For many, many years I have been far too critical of Kim's absentmindedness. It's something that just gets to me. Chemotherapy is known to cause "chemo brain", a condition of even greater cognitive impairment or cognitive dysfunction. I know it's not something she can't control but it aggravates me to no end. I cracked last Friday night (edit - two weeks ago) and we had a quick yet intense argument. I promised I would not introduce any negative stress into her life and yet I fought like hell over something stupid just to prove my point. It's hard to adjust to this rapid change. We still have yet to recover from that fight.  (edit- By the time this post publishes we have resolved this)

Since her hair loss I've had a number of people ask me when I'm going to shave my head or when the boys will, too. Kim and I talked about this long before her hair came out and I talked about it with Andrew and Jason even before that. Kim doesn't want us, too. From the beginning, Kim has not wanted to live the breast cancer brand lifestyle. No ribbons, no t-shirts, no slogans, no kicking cancer's ass, and no fuck cancer bumper stickers. When we're out she doesn't want the world to see her as only as a person with breast cancer or as a family with a breast cancer parent. So she denied my attempt to join her with a shaved head two weekends ago. She's the one who has to look at us and this is how she wants to see us. Making Kim feel good is what makes her feel better and we'll do whatever she asks of us.

Kim shaved her head following chemotherapy #2 and in the week since #3 the final follicle hold outs are beginning to drop away. Her scalp is pretty smooth right now. Interestingly, her armpit hair is also gone. And, yes folks, it's mostly gone from somewhere else, too. Arm and leg hair, eyebrows and eyelashes, still there.

Kim's tastebuds are dulled and food isn't really that enjoyable for her. Strangely, even water has lost its appeal. Eating and drinking are now conscious choices during the day akin to having to take medicine. And its more than just the loss of taste. Her appetite is diminished, too. I am concerned by this as she needs her strength to recover. I've received a number of message from people suggesting medical marijuana to combat these symptoms and the nausea. It's as good a time as ever to have that consideration given that the option is now legal in so many states including Oregon. I have zero experience and Kim has just as little so we're both trying to get up to speed on things while also dealing with the bullshit of the Reagan-era stigma that still has a tiny little hold in our psyches. No matter the remedy, I'm sad for Kim that food brings such little joy. Even coffee has lost its appeal for her.

I get asked every day how I'm doing and I reply, "I'm good, we're good, thanks." And a few folks will look me straight in the eyes and say, "No you're not" and I know what they mean. They want me to give in a bit and let some of the stress go. I don't fault those people for saying that and I am impressed at their willingness to say something so difficult to me. That takes guts and I am actually bolstered it. But I am good and we are good. It's all we've got. This isn't optional and, in a strange way, that makes it easier to deal with. This isn't a tough life choice like quitting a good job as an adult and going back to school. If things get difficult you just go back to work. Or should you? There's always doubt. But there's no doubt with Kim's cancer. It's there and we know what to do about it. No doubt at all. Sure, sometimes I wonder if it'll be OK for Kim to sneak in a piece of pizza or have a beer but that's mild doubt. I'm good with that bit of doubt.

Since July 19th Kim has had zero pieces of pizza and zero beers. I've had four and one.  (edit- we went out for pizza tonight and found a pretty decent gluten-free pizza for Kim. I snuck two pieces of regular cheese pizza.)

But! And this is a big, big but, we finally found a great gluten-free pasta. After many attempts with gummy, gross substitutes, this Ancient harvest stuff is a wondrous discovery. Andrew made the most incredible pesto sauce last night and it was so good on this pasta. Though we did have to wait to eat because Kim only boiled one-and-a-half 8 ounce boxes because she only wanted to make a pound. Hmmm, a twelve-ounce pound? See, that chemo brain is the real deal. We cooked up the rest and had a great meal.

It's possible to always win a coin toss and I will keep gaming the system to get as many heads-up tosses as we can. But the tail is always there so be advised that some of these posts may not always be sunshine and unicorns. Thanks for making it this far. Hey, who's hungry?

Chemotherapy #3

Kim's two-week schedule goes like this. Chemotherapy is on a Thursday and she'll come home feeling pretty much normal. Mostly the same for Friday and she's yet to miss a day of work. By Saturday morning the fatigue sets in and she'll be an opportunistic napper for the weekend. By Monday she's back on the rise and as the week progresses she returns to high-energy. The off week days of Thursday through Sunday are the best.

And so it is that we took off to Bend, Oregon last week late in the evening Friday to get a head start on the long holiday weekend. Kim has always, always, always wanted to hike Smith Rock State Park and it's a vista we see each trip on the drive out and back. She really wanted to check it out. And we did.

Saturday morning began as nearly every weekend day does for us in Bend with breakfast at Strictly Organic. Folks, these are the best breakfast burritos outside of Austin, Texas. It's a friendly place and we loaded up for the day ahead. It's a 30 minute drive to the park and we were lucky to get one of the last available parking spots at the trailhead. Just two steps in and this places blows you away.

Achievement Unlocked

We hiked the full loop around Smith Rock, Monkey Face, and Misery Ridge. At first I was a bit concerned about keeping Kim's effort low but soon realized that she felt great and there was little to be worried about. This is a beautiful hike and one with so many opportunities for great photos. Despite a full parking lot, we really didn't feel the crowds around us other than at the trailhead.

That evening we ate at Andrew's favorite restaurant, Spork. We all love it and we went home full after a long day of effort.

Sunday was a slow morning to prepare for a 1PM shuttle departure that would take us and our bikes 15 miles outside of Bend and up the low slopes of Mt Bachelor. This is a favorite ride for Kim and we would all appreciate a ride that was mostly descending back to home. Kim had the use of a brand new Specialized Turbo Levo electric assist mountain bike while the boys are simply teenagers and have limitless power. The first part of the ride is a climb and dear old dad was at the back end of an ass-kicking.

Y Not?

What a day. Simply a great day in the woods with everyone stoked on riding, the views, and being away from all the stuff back in regular life. Kim rode as well as I've ever seen her and you could see the infusion of stoke bringing her to higher and higher levels of feeling better. The weekend closed out with a little more riding, lots of hanging out, and plenty of sunshine-supplied Vitamin D. An emphatic last chapter of summer 2016.

Back home it was back to school in earnest for the boys. Big news of the week has been jazz band try-outs for Jason. He's sitting on the drums at school just as I type this. He practiced a lot. He's ready.

For Chemotherapy #3  yesterday Kim was joined by family friend Jocelyn SyCip. We've known the SyCips for a long, long time and have been neighbors on the same street now for just over 4 years. Their support these past few months has been wonderful. Thank you, Jo, for spending the morning with Kim.

Kim & Jocelyn SyCip

News from the Oncologist yesterday morning was fantastic. All her blood levels are good and her physical stats are holding steady. She's lost about ten pounds but is holding it at this new level and I'd bet a lot of that is due to the strict diet and exercise. No significant side effects to report or to be expected.

And this - following the physical examination Dr Anderson reported that Kim's lymph nodes are getting smaller. It feels good to have a positive sign at such an early checkpoint.

So, an easy weekend ahead for all of us. Enjoy yours as well. Best from all of us.

Adventure Committee

Smith Rock State Park

The sign says it all

Chasing the boys

Berms

The big reveal

You know what rhymes with carefree?

Well, we gave the cold therapy treatment experiment our best effort but the chemotherapy drugs had their effect. Beginning last Sunday, Kim's hair began to fall out in large numbers so on Tuesday evening we walked to the local Bishop's barbershop after a nice dinner out and Kim had her head shaved. Two things were immediately apparent:
1) She looks great. In fact, I'd say she looks cool.
2) She seemed relieved to be done with it. All the fuss and all the precious care to keep her hair in place was having an effect on here for sure. So now she's relaxed and bright. And she looks cool.

Hair free

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