On the Road to Routine?

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.

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So it begins

Note: after I wrote what I remembered, Tamara added some good detail below.  

The last update I wrote was only 4 days ago - that's a little crazy. Between this current crisis and a few others we've had to deal with in the past, we're learning that medical issues cause time paradoxes. Time both slows down and speeds up. You feel like you're at the hospital for a month, but you simultaneously can't believe that "we've already been here for 4 hours."

Anyways, Tamara made it through 9 of her 10 appointments (referenced in the last update), and so did the rest of us thanks to some very generous people who have cared for the baby, helped with school transportation, and brought us meals. Thank you so very much. I can't tell you what a load off it is when "doing the dishes" is synonymous with "throwing the pan away."

A few small details that made a big impact on us:

• Neither of Tamara's bone scans resulted in her "glowing" as our oncologist warned. The radiologist was kind of perplexed that we'd been told that she'd need to isolate after the scan. "You're close to me ... and you're going to be close to a lot of people on your way out of the building." In short, everybody was fine and Tamara was able to be very present for Elianna's birthday.
• The twins' birthday party has been moved such that I don't need to choose between it and a work trip. I'll be there the whole day to help set up, run the show, and take down.
• I was also able to move some things around at work that allowed me to be with Tamara at the oncology appointment today and make sure she got settled in with her chemo treatment (though I now regret that I didn't stay for the whole infusion ... foreshadowing ...).

Those kinds of details made life a little easier. We also were able to enjoy some of the test results we got back. Blood work, CT scans, bone scans - they all came back clean and normal. There is nothing new in those reports that our oncologist is remotely concerned about. 

Along that same line, Dr. Dumlao also updated us on the lack of clarity we've been feeling about the lymph node biopsy. Good news - they were able to confirm that there was lymphoid tissue in the biopsy and that the "clean" result is almost-surely correct (can't every be 100% sure about these things). The only way to be more confident in those test results is to remove them surgically, which is already planned after Tamara is done with chemo.

Bottom line - we're as certain as we can be that we remain in Stage 2/3 and that the mass is still isolated to the breast. [cautious sigh of relief]

So, today was Tamara's first chemo therapy treatment. We've had so many people reach out to provide helpful advice, so Tamara was very prepared - giant tote bag full of blankets, pillows, mittens - you name it. We didn't have to wait long to be brought back into the infusion center where they used an ultrasound machine to make sure the nurse didn't have to dig around in Tamara's arm with a needle to find a good vein.

I made sure they brought her a good lunch, and opened the bag of chips and the cookies in case she couldn't use both hands. She had a blanket they had pulled from the warmer. She looked pretty settled in, though still anxious. The baby needed to be collected from the kind volunteer, and I needed to squeeze in a couple hours of work before the kids got home. So, I left.

This chemo thing is a strange process. It feels wrong to voluntarily allow poison to be injected into your wife's blood stream. Yes, it feels more wrong to let cancer accomplish it's objective, but even so it's surreal to watch it actually happen. We're powerless to stop the chemo process because we have no other means of fighting this thing. Mortality comes with a host of ailments, but this one ranks pretty high on the list of "things that could drive you insane before it kills you".

I say all of that because within 30 minutes of me leaving, Tamara started sending me updates like "Apparently, I'm having a reaction to the Benadryl." Why Benadryl, you ask? Well, that particular drug was meant to stifle the body's natural response to the chemo drugs. They give it in fairly high doses prior to administering the actual chemo drugs because of how toxic they are. After noting some spasms that the high dose of Benadryl was causing, they gave her some Ativan to calm the nerves and stop the twitching.

Then, even having been administered the pre-meds, she still had an allergic reaction to the first of the two chemo drugs. She started swelling up, her airway started to close, and she started seeing blurry stars. Tamara did keep sending me updates, so I knew she was okay, but ... I don't think I'll be leaving her alone again. Very scary for her, and for me at home with a sleeping baby upstairs and spreadsheets across my monitors.

The nurse, however, indicated that this is very normal - again, very alarming. After hearing about all of this, I wasn't going to just chill and wait for her to come home. So, I headed back to the hospital to pick up my toxic bride as soon as I was able. The original plan was to have Tamara drive herself back, but all the extra stuff they had to give her to calm the reactions made that impossible. 

When I got there, she had just woken up (the allergy meds made her drowsy) and the nurse filled me in on a very eventful afternoon. Once the last of the 2nd chemo drug was infused we headed home. After passing into the dream world for a couple hours, and after a few failed attempts, Tamara did eventually recover her faculties and decided she needed to make some cheesecakes for the boys' birthdays. (This lady ... honestly.) She also got a head start on thank-you cookies for all those who have helped. All you can do is chuckle, sometimes.

Next up: installing the central port under her right clavicle so that we don't' have to mess with IVs anymore. I'm very curious to see what the recovery looks like for that. In the first few days, cold press should help. The oncologist also said that it may take a few weeks for Tamara to fully accept the presence of her new little buddy. Until then, there is likely to be accidental movements that are a little painful.

With any luck, after the port install, we'll be able to establish some semblance of routine. But who am I kidding. This is cancer. Routine is an probably a mirage, right?

Tamara's Account:

This is all very hard, and overwhelming. Lots of information and decisions that are supposed to be made when you can barely process the last things that were said. What follows are some details that I remember that Jared didn't.

Dr. Dumlao told us that these chemo meds will put me into temporary menopause..( YAY hot flashes) but I am getting my uterus and ovaries removed anyways, so it is just a head start on that. It will be nice to not have to worry about a period while doing chemo treatments. 

I have been very anxious about starting treatment. I have cried in the kitchen with Jared and said things like "I don't want to do this, but know that I have to. I know this isn't going to kill me but I still have to be stripped of so much; to have feel the depths of hell and that is soo hard to think about." 

We decided not to do the scalp cooling, which was a relief to finally have a decision on that. Jared knew that even if half my hair was saved I would still be extremely self conscious of the thin, patchy hair and the potentially-awkward regrowth pattern. He wasn't wrong - that would be very difficult for me. But I am extremely sad/terrified to lose all my hair ... it has been the one physical thing about myself I have actually liked. But c'est la vie. 

Blood work today was difficult. The tech really wanted to get my right side, since my left side is all bruised up from the IV they gave me for the bone scan and CT scan. But my right side is harder and the vein kept moving around while she tried to poke it. (I already see and feel a bruise forming there as well). So when they put the IV in for the Chemo meds today, they did the right side again but a little lower with the ultrasound to guide them. (It still took them a little bit to find it and dig around to hit the vein just right...I hate getting IV's.)

As he said, Jared left after I was mostly settled and they were about to give me my pre-med drugs. The high dose of Benadryl made me really tired really quickly. So, I would dose off but immediately be woken up with muscles spasms in my arms that would clench my hands into fists. It was very annoying. They had already administered all of the dose so I just had to wait it out, they said...but then it kept happening for a while. So, she ordered Ativan to calm down the spasms. 

Shortly after the finishing the Benadryl amd pembro, they flush the IV (this gives me a weird metallic taste in my mouth every time). She hung the first of the Chemo drugs...the dreaded Taxol...this is the drug that can kill off the nerves in your extremities. So, I have to have my hands and feet in ice gloves and slippers to avoid neuropathy for the whole time until the bag is finished being administered. Within a few minutes of this med starting I felt a hot, heavy weight in my stomach that made me think I may throw up. But before I could let the nurse know that, the sensation quicky traveled up my face, swelled up my lips and started closing my airway off. I started having a very hard time breathing. With significant effort, I was able to get utter "Something is not right" and then about 5 or 6 nurses rushed over - one of them equipped with an epi pen ready to be used. They immediately turned off the Taxol and put me on oxygen. I was pale in color but after the oxygen was on for a minute or two I was able to breathe better and the swelling in my lips went down. The stomach pain lingered the longest. They then prescribed me another antihistamine to help with the reaction of Taxol, and decided to administer the Taxol over 2 hours instead of 1 hour. This helped immensely and I was able to get through it. 

It was crazy how fast things changed for me though...I did not expect those reactions. I guess they can me very common though. 

I also want to say how grateful I am to all of you for showing love and kindness for Jared, my kids, and to me. It means a lot! It brings me to tears to think about all of your kindness, and for those that are close to me on the other side of the veil. 

Now, 1 down...18 more treatments to go!

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Zero Residual Cranial Bandwidth

Team Beat Cancer ... Assemble!

 

Whenever people in my industry start a new job, the first few days of employment are always met with rhetorical questions like, "Drinking from the firehose, eh?" The analogy paints a vivid picture of violent overwhelm that probably is better suited to describe a person's first appointment with an oncologist.

On Tuesday, we met Dr. Liu-Dumlao for the first time. If it was just her, I think we would have been okay, but there were times that we felt like one of the sharks on Shark Tank. We sat in our chairs in the small examination room for about 3 hours and welcomed half-a-dozen different people through the door to give us their well-rehearsed spiel about their special part in the cancer treatment process.

For a few of those contestants, we wish we could have said "... and for that reason, I'm out." Just like the sharks.

By the end of it, we left with enough literature to fill a college course - that's not an exaggeration - and zero cranial bandwidth remaining.

Having said all of that, it seems like the crabby scheduling nurses aren't in the picture anymore. After we met with the surgical oncologist last week, we left with a list of scheduled scans and procedures. All of those appointments have now been moved to earlier dates - most of them tomorrow or Friday. Dr. Dumlao put her team of minions to the task of performing some scheduling miracles for us, and they all came through. Here's the list of all but one of the appointments we have coming up in the next week:

• Echo exam
• Psycho therapy
• Bone scan 1
• Bone scan 2
• CT scan
• Blood work
• Oncology appointment #2
• Central port
• Wig fitting (Tamara scheduled this one)

We've felt some intense anxiety about how fast we've seen the tumor grow with just the naked eye. After the mammogram it didn't seem like anybody was in a hurry. Now, with the biopsy results in front of the right people, it seems like everybody is in a hurry. On the one hand, its a little scary that everybody senses the urgency. On the other hand, its a relief that everybody else seems to get it now - we don't have time to sit around.

Prior to the appointment on Tuesday, we were hoping to get some clarity on why chemotherapy needs to come before surgery. Seemed to us that if the cancer hadn't spread to the lymph nodes, chemo would be unnecessary. Needless to say, we are really not looking forward to 6 months of chemo, and if at all possible, we wanted to avoid it.

Dr. No shot that hope down pretty quickly (jk, Dr. Dumlao is great ... but chemo is going to suck). There were some tears shed once we felt the finality of the recommendation and the inevitability of chemo. Nobody wants chemo and nobody wants to see their loved one go through it. The doctor said that the goal is to see complete pathological remission before surgery. I'm honestly not 100% on why that needs to be the process in Tamara's case, but the doctor is adamant that it's the best treatment plan available for triple-negative, BRCA+, grade 3, stage 3 breast cancer.

"Triple-negative breast cancer" is no joke. It doesn't respond to hormone treatment and, in Tamara's case, grows scary-fast. At the time of the mammogram, the tumor was 2.4" (6 cm) in diameter. that was 3 weeks after Tamara even noticed the lump. For reference, a tennis ball is about 2.5" in diameter. Knowing that it has grown since then is just crazy.

Tamara, at times, will do a self-check to gauge the size and is always shocked by what she's feeling. She then looks to me for validation, asking me to feel it and gauge for myself. Since the mammogram, I haven't been able to bring myself to give her that validation. Something about poking and prodding around the thing that is trying to kill my wife makes me want to hide in a hole. Luckily, Dr. Dumlao has no such reservations, and confirmed that the tumor now occupies most of the space in Tamara's upper breast. Yikes. Hurry. Please.

The one medical appointment that I left off the list above is the first chemo treatment. That is scheduled for Monday - even before the central port is installed. This first treatment will be done with a typical IV because we couldn't get the port installed early enough. We were told that the oncologist would likely want to move quickly with chemo, but dang! This all came at us so fast and I don't feel like either of us have had a chance to catch our breath. Worst of all, if said breath were to be caught, we'd just be giving this thing more time to grow. So ... new rule: no breath catching allowed.

Even so, we're hoping that we can fall into something resembling a routine once all the initial tests are done. I say that because this next week is going to be bananas, and if things are going to be like this for the whole 6 month treatment regimen, one of us is going to lose our marbles. The list of appointments above, now including Monday's chemotherapy treatment, are only half the story.

One of Tamara's bone scans will leave her "glowing" (i.e. radioactive) for a full 24 hours, during which time she'll need to be quarantined. Elianna's birthday is on Saturday, so Tamara will need to stay 3-feet away from all of us (especially the kids) until about midway through the birthday. Elianna is not pleased, but I think she's forgetting that I can make a pretty great breakfast, too.

The twins' birthday is next week, a couple days after Tamara's first chemo treatment and the day before the central port installation. That port will be installed surgically, which means she'll be unable to lift more than 10 lbs. for 3 weeks post-op. It's a good thing we have older kids who can hold a baby, or we'd be in trouble.

A couple days after the port installation is Evan and Nathan's birthday party. The good news is that it will mostly revolve around video game tournaments, which is my specialty. The bad news is that very little else about birthday parties is my specialty.

Dizzy yet? Me, too.

Regardless, we'll figure it out ... along with all the soccer practices & games, family pictures (scheduled urgently because Tamara will be losing her hair soon), church activities, and company retreats (yes, I'm supposed to be at a company retreat the same week that Tamara gets her port installed and the twins have their party). The point is, we'll figure it out. And if we don't, something will fall through the cracks and we'll move forward anyways. Remember? No breath catching!

There you have it! You're all caught up. Honestly, this is all terrible and I won't try to sugar coat it. But I would be ungrateful if I didn't acknowledge the generosity of so many people. From kind text messages, to mysterious Amazon deliveries that show up with items meant to make Tamara's treatment less horrible. Some of those packages have shown up with no name attached, so we can't thank you directly or by name, but thank you all the same. We love and appreciate you all and feel blessed to know you. God has some kind of plan cooking and I don't always like figuring out what's next. But I hope we can still acknowledge the little miracles that remind us that His hand is in the details.

Until next time ... here is a scan of the notes that Dr. Dumlao wrote down as she outlined the plan to us. If you understand it, feel free to reach out and help us understand it better. Kidding, I understand it ... mostly. But if you have any medical school under your belt, let me know what you think.

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Breast Cancer Awareness Redefined

 "Does anybody blog anymore?" That is the question Tamara asked me when I suggested that we use our old, neglected blog to provide updates. I responded that I don't think we'll regret having a platform to use as an update hub as we move through this journey. Short story shorter - here we are. And here is where you can find most of what we know.