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