We're learning a lot about cancer through this process, and most of it slips through the cracks in my short term memory too quickly to make it into these updates. But when to provide another update is one learning that I've had some help remembering every week. When we start to feel a groundswell of interest (usually about half-a-dozen texts or calls) from people who love and care about Tamara, its time to start tapping keys.
The plan for this past week was anything but simple. Outpatient surgery (port installation), church-sponsored fall festival, overnight work trip, twin tween birthday party, soccer practice, school pickup, bathroom remodeling, chemotherapy treatment #2 - we had it all. And I'm happy to report that we landed the metaphorical plane with very few loose rivets.
- The port installation was a success even though, to paraphrase Tolkien's Gollum, "we hates it." Tamara's recovery has been on par with her ridiculous, stubborn standard. I caught her mowing the lawn with one hand on Saturday before the birthday party. Ringing in my ears were the words I remembered our oncologist saying; that chemo patients don't do well in the heat and direct sunlight. I haven't been so mad at a person in a long time, and she hasn't felt so inhibited in a long time. A lot of her self-worth is tied up in how useful she can be to those she loves. Cancer is already taking some of that utility from her, and even more dreadful - she is now partly dependent on others. She worked in a surgery center for a time, so she's seen lots of surgeries from the nurse's perspective. After the port was installed, she said, "I hate being on this side of the surgery." That sentiment extends beyond just the surgery. With that in mind, when we asked for clarification in our appointment yesterday, the nurse practitioner said that Tamara should be fine to do yard work as long as its not in the middle of the heat of the day. So, like I said, we're both learning. While she's learning to take a step back from her normal activity level, I'm learning to trust that Tamara knows her limits and I shouldn't be so dogmatic ... even though my limits are much more modest than hers.
- The birthday party went really well. 14 tween boys showed up and much merriment was had. When kids started showing up, I was on the front lawn to greet them - not because I'm a good host. No, I was on the front lawn because I was trying to finish scalping my lawn (the uninitiated non-Arizonans may need to look up what "scalping your lawn" means). So, most every kid and parent got to witness me in all my sweaty glory - dirt-stained teeth and all - waving at them with all the dignity of Gomer Pyle and Forest Gump. Once the lawn was finished, I was able to fully engage in the party, and the Gang Beasts (video game) tournament was on. To the victor went the spoils - a goat trophy (pictured below). This was followed by one of the most impressive gift-giving sessions I've ever witnessed. If you parents of my kids' friends are out there - holy cow. Then, we finished it off with a game of light-up capture the flag. It was a big hit, but it took us a minute to nail down the rules. And even then the green team only won because the blue team lost more players as their parents arrived to take them home. Chaos? Yes. Fun? Also, yes.
- 7-10 individuals were recruited to help make Thursday and Friday possible. I had to leave home overnight for work and the support we needed to make that happen came willingly and painlessly. Without you, either I would have had to skip out on my co-workers, or the kids would have been walking home from school, missing out on fun church activities, and watching their mom struggle in pain. You know who you are, and I can't thank you enough.
- Getting our home ready for the Thursday-Friday helpers came down to the wire. We recently installed new flooring in our home's main level, as part of our Never-Ending Home Renovation. That involved me removing the toilet in the half bath. I had planned on installing a new one on Saturday morning in preparation for the twin tween's party. But around 6 or 7pm on Wednesday, Tamara reminded me that people were planning on being at our house to help us on Thursday and Friday. It would be nice if they had a place to powder their noses without braving the kids' bathroom upstairs. And at about 12:30am, wouldn't you know it - I managed to get the room in working order.
Now, about yesterday's chemo treatment. Thankfully, it was much more boring that last week. There are 3 main medications being administered (now via a shiny new central port): Benadryl, Taxol and Carboplatin. You may remember that last week, she reacted to the Benadryl with muscle spasms. Because of this, they decided to do an IV piggyback. Honestly, I don't fully understand what that means, but from what I do understand it means the dose was diluted and administered slowly. Well, she still reacted with spasms but they weren't as intense. And because she saw them coming, she was able to avoid most of it with concentration and breathing. Still very annoying and agitating, but manageable.
For the most part, that was the end of the drama. She did feel the Taxol trying to wreak havoc, but because it didn't close off her airway this time, she was able to observe more of what that crap does to a person. When the nurse administers the Taxol, Tamara puts on her SuzziPads (i.e. ice mittens and booties). The idea is to reduce blood flow to the fingers and toes so that the Taxol doesn't destroy or injure the nerve endings.
Tamara is known in our home for her ice-cold hands and feet. Much to my dismay, my warm ribs are often the default defroster for her extremities. So, imagine my shock when she took her hands out of the ice mittens and touched my arm with warm fingers. I say again ... warm fingers. This. Does. Not. Happen. If Tamara even thinks about ice, her fingers release whatever traces of heat they were clinging to. For her hands and feet to be in contact with ice packs for 2 hours and remain warm ought to tell you how crazy-dangerous these drugs are.
Anyways, when we got home, she pretty much went straight to bed. Only the baby had an earlier bed-time than Tamara today. My hope (there's always hope, right?) is that with the port install complete, with the insanity-that-is-always-our-October complete, we can begin to fall into some sort of routine. We have yet to see the full wrath of chemotherapy, so my hope could very well be very naive. Even so, 2 treatments down - about 17 left to go!
A couple post-scripts:
1. I get asked a lot about her treatment plan, so I'll clarify here. Things can always change, but the plan right now is to do 3 months of weekly chemotherapy treatments, followed by 3 months of treatments once every 3 weeks. Our goal is pathologic complete remission with chemo. In other words, we want the chemo to kill the cancer to the point where its untraceable. Achieving this outcome before surgery significantly increases the 5-year survivability rate for Tamara's grade and stage of cancer. After those 6 months of chemotherapy, we're looking at a bilateral mastectomy and a hysterectomy. Each of those will come with grueling recoveries. So, 2025 is pretty much booked for us. Neither of us is happy with our options at this point. But in the time it would take us to research alternative treatments, we'd likely be looking at Stage 4. We feel lucky that we caught it at prognostic Stage 3. We won't get into what the prognosis looks like for Stage 4, because its not hopeful.
2. I've heard from a few people that they've been impressed with how we're handling this whole thing. I can't help but think that my light-hearted tone in these updates is responsible for that. Most of you haven't really had the chance to see us in our natural habitat, so the blogs are all you know. But I believe that in traumatic times, an accurate accounting of reality is more useful than hollow positivity. Some of my positivity is genuine, but some of the positivity I'm tempted to project would be hollow. It's so tempting to let you all believe that we're just smiling our way through this. But we're not. My writing style is more of a habit than an indication of my mental and emotional state. Yes, its true that Tamara and I have been able to avoid turning on each other. We make a pretty solid team, and I think our experience with my mother's cancer has helped us gain some perspective that regulates our emotions and behavior toward each other. We're also trying to retain a sense of normalcy for our kids. They've proven resilient up to this point, and they'll likely need to endure more than we wish.
But in our quiet moments, when the kids are asleep, our worlds are spinning. We're in mourning of the year(s) we thought we were going to have and we're terrified of what's to come. We are doing our best to approach this thing with faith and hope - and there is much reason to hope. Tamara has a good prognosis. Were it not so, I'm not sure I'd be a functional human. But what we're in for over the next year+ fills our cushy, suburban hearts with dread and longing. It's only in acknowledging and confronting that reality that I can begin to comprehend how much strength we'll need to muster for the long haul.
And that is the struggle, which unfortunately so many of you are familiar with, that makes all of your outreach so meaningful. Thank you. We do try to respond in a timely manner with words that convey what you mean to us. But even if we don't, please know that without you, we'd have only ourselves to look to for reminders that Christ's pure love can be found and felt, even in hardship. Left to our own devices, I'm not sure we'd be able to keep that memory alive. We love you, we're grateful to know you, and this update has gone on long enough.
