November Sunshine

November 23, 2013

A refreshing change of pace last week in the Taylor-Saunders household, we got lots of good news. Isaac’s reflux is better, Matt got a new job, and my MRI results showed shrinking tumors. That means that the last two months of treatment did its job and makes me feel better going forward with chemo round 2. Devoted readers of this blog might remember that I wasn’t sure what the next drug would be because I attempted Taxol at the beginning of all this and found out I was allergic. After pre-treatment with two different kinds of steroids, Benadryl, an anti-nausea med, a sedative, and Matt distracting me with stories of his misspent youth, I successfully got a drug called Abraxane (a Taxol cousin) into my body. We were tremendously relieved that the drug went in without a reaction, but the combination of all those drugs created an awesome hangover. We went to our parenting group that evening and the topic was emotional changes associated with parenting. The only thing I remember is not being able to complete a sentence. On Sunday, though, awesome family hike up to Fragrance Lake on Chuckanut Mountain! 

We stopped at one of the oyster restaurants on the way home and discovered that it was more of a white tablecloth type of place than a fish-and-chips type of place. Isaac acted like he was going to behave himself long enough to get us in the door and ordering food and then proceeded to scream his head off as we tried to gulp down our delicious chowder. That will be his last white tablecloth bottle feeding for a while. Today Matt and Isaac are hanging out while I do some much needed catching up on e-mails, thank you cards, phone calls, and bills. Please don’t give up on us if I owe you any of those things, I’m trying to get out from under my inboxes. This cute little guy tends to get in the way.

Takeoffs optional, landings mandatory

Matt here - Takeoffs optional, landings mandatory is a mantra I've been saying the past month or so. Fortunately, last week I found a good landing spot at Boeing and will be starting my new job there in December. It is down at Boeing Field at the wind tunnel in a group called customer coordination. The opportunity to work on a lot of tests sounds like an enjoyable one. I'm incredibly grateful to everyone who helped me out in any way over the last month, from just talking to resume help to new people with whom to network and so on.

For the record, I was not actually laid off; I received a 60 day WARN notice that I would be laid off from my current position. Jarring nevertheless, but it gave me enough time to get things in order and find a new job with no gap in employment.

Oof.

November 6, 2013

Oof. Through four (and a half) treatments of adriamycin and cytoxin so far, and hopefully that is the end of that cycle. All of my respect to those folks who have chemo as part of their weekly routine for years at a time—it feels like hanging out in a paint factory for a few days and then fighting your way out from the bottom of a well to get fresh air into your body. On the other hand, I’m so grateful that this powerful medicine exists to kill the bad guys. We’re not sure what the next three months of treatments will entail. It depends on which chemotherapy drugs I’m allergic to and how well the protocol is working. In theory the next round won’t be quite so hard on my immune system and Isaac and I can come out of hiding more often. Hair is gone, it fell out for a while and then I got sick of pulling it out of Isaac’s fists so Matt shaved it off for me. Not traumatic, maybe just compared to dealing with the other cancer crap, and cosmetics have never been one of my strengths.  

Isaac is getting more and more social every day and learning how to use his heartbreaker smile and pout. He’s quickly becoming more interested in people than skylight friend. Isaac is also a kickass sleeper for a two-month-old. He gets in a great mood at night and grins up at us as we put him to bed, then usually hangs out planning a takeover of the Costco formula production line while mom and dad sleep. I assume he goes to sleep at some point, and then I wake up again at four or five in the morning and he’s snorting, wide-eyed, checking out the ceiling fan. I ask if he wants some food and he says, “Meh, sure” and we go warm up a bottle and get him a dry diaper. When he actually sees the bottle, he gets supper excited and wiggles every part of his body including his tongue. After the bottle and some digestion time, we both crash again until mid-morning. What a good baby. Watch, I’m writing this now and he’ll change it up again and start waking us every hour.

Maybe Isaac knows mom and dad need sleep right now. Matt has been busy nights and weekends looking for a new job. We felt a little smote after he was laid off , and maybe more than a little pissed off that his employer wasn't more compassionate about our situation and need for health insurance. But we’re over it and busy focusing on finding him a new job and other good stuff: meeting new baby friends at PEPS, posing our kid inside a carved pumpkin, family hikes, family naps, Matt explaining to Isaac all the rules of baseball as we watched the World Series, and visits from Gramma and aunties and uncles.   

Four Week Ichiro

September 30, 2013

Things that Isaac likes at four weeks: 1. Sleeping on top of someone. 2. Sleeping in any position except on his back in his crib. 3. Bottle. 4. Falling asleep while eating. 5. Skylight. 6. Being bounced up and down. 7. Window. 8. Nice warm bath. 9. Walks. 10. Mom and Dad. His eyes have just started tracking objects and he’ll look up and half smile sometimes when we talk to him or tickle/funny sound, but most of his loving glances are reserved for skylight friend. Matt asks Isaac, “Does the skylight feed and change you? Does it scrub poop off of your clothes?” But that actually may be the best part about skylight friend since exposing his body to open air is one of Isaac’s top dislikes. He also gets ornery if he thinks mom or dad aren’t fast enough connecting bottle and mouth, cold raindrops hitting his face, and diaper wipes. 

 

So Isaac is doing great at being four weeks old and we are so enjoying watching him grow every day. Matt went back to work on Monday and I walked around the house talking to Isaac and feeling slightly insane. My white blood cell count should be coming back up after the last dose of chemo, but we’re still avoiding large groups of people, children, and sick people.  When I take walks, I carry around a mask for me and baby mask for Isaac, just in case there was a situation (I can’t think of what that would be…a tornado?) where human contact was unavoidable. Amazed at how little you can get done around the house with just one little guy, I have new respect for the folks out there who have more than one that they are trying to corral, feed, change, and keep safe.

Three Ring Circus

Amanda here: We promised updates and then life became a three ring circus. Isaac is doing great at all the things that babies do. Except when he is deeply asleep, he cycles through a variety of facial expressions and squeaking noises until the person holding him becomes a puddle of goo, gives up on adult conversation, and just stares at him. Matt and I weren’t sure what to expect about newborn care, but it is surprisingly awesome (Matt: the honeymoon is over on the overnight feedings).  Big events for Isaac over the last two weeks of his life included a switch to formula, which he seems to be slurping down just fine, and his circumcision. Welcome to 365 generations a body scarring tradition that seems to provide some unique health benefits, and a truly beautiful ceremony. We recently became official members of the Beth Shalom community, and they have been amazing at welcoming us and our child, extra baggage and all. Isaac has gotten to know two sets of grandparents and his Aunt Stephanie, and he’s had virtual encounters with his Great Grandma Ruth and his Aunt Emily, Uncle Dan, and Aunt Meredith. He also had a great visit with his Aunt Gabi/Fairy God Pathologist who came all the way from San Francisco to help us navigate for a few days.

As for my last two weeks of health updates, here goes. About 1/3000 women (I think just in the US?) are diagnosed with breast cancer during pregnancy. During those last weeks of pregnancy, I was also diagnosed with PUPPPS (pruritic urticarial papules and plaques of pregnancy, ew, look it up on wikepedia) that affects about 1/100 women during pregnancy. When I went to get a chest port put in to deliver the chemo drugs, I ended up in the hospital with a pneumothorax, about a 1/200 complication. Went to get chemo started and found I was allergic to the drug Taxol and potentially its alternate form, maybe a 1/20 probability. I’m not sure what the odds are of hitting that many rare medical issues in the space of two weeks, but they must be astronomically low. Lower than Powerball low. On the up side, scans and tests so far showed that the cancer spread is local to the lymph nodes near the tumor which really was good news. We’re grateful for a lot right now including kind and skilled doctors at the Swedish True Family Cancer Center, family and friends who are helping keep us fed and cared for, an outpouring of wonderful e-mails and messages from friends and family all over the country, sympathetic employers, and lots of other things that I’m not going to go into because this whole situation reads like a rejected script for a Hallmark Hall of Fame movie because it is too melodramatic. 

Regarding visits. We’re excited for Isaac to meet our friends and family, but we are balancing that against protecting my immune system. The chemo drugs that I am taking for the next two months or so are particularly hard on the white blood cells, so don’t be offended if we wait a while to see how I am tolerating the treatment before we become more social.