Four Weeks 'til Baby!

Four! Twenty-eight! Six hundred seventy-two! Three!

Four weeks. Twenty-eight days. Six hundred seventy-two hours.

That's approximately how much longer we have until we meet Baby Brotzman. It's getting very real. We spent some time this week working in the nursery to get it set up, and it's nearly ready. We installed the car seat this afternoon (sort of; we need to figure out how to tighten the base better, and we're working on getting an appointment with a certified safety inspector). Finishing touches and laundry are on the agenda for the weekend.

I had another non-stress test and ultrasound this morning--they'll be twice a week from now on, and Baby B aced it. Kevin's mom got to come to this appointment, since it was just before my infusion. Baby kept most of his or her face hidden again, so the pictures this time were not very clear. Still, I love that I get to see the baby so often.

My infusion was fine; we made it to that appointment with two minutes to spare, since it took a while to get called back for my NST earlier in the morning. It wouldn't have mattered, as it turned out, as the center was pretty backed up and we waited about an hour to get called back. Despite that, we were finished around 1:30 and back home by 2, the earliest so far. I immediately took my afternoon nap - I don't know why the Benadryl (to reduce the risk of an allergic reaction) doesn't knock me out when I get it, but I've not needed my nap until getting home each time - while Kevin finished up his work day.

I've decided to try to set aside a day for freezer and crock pot meal prep, so I spent some time on Pinterest finding meals that looked good, easy, and healthy...or at least two of the three. I'm not sure when I'll get to it - or, to be honest, how I'm going to mange it, since my stamina is so reduced these days - but I'll figure it out as I go. I'll put Kevin or anyone who wants to volunteer to work and split up the tasks as much as possible: grocery shopping one day, chopping another, actual prep on another. I've also found it to be quite helpful to drag the bar stool over to the stove or counter where I'm working. I feel so old. And pregnant. Four weeks.

Evaluation

I hadn't realized it until today, but I was pretty pleased with myself that I hadn't had to go to the hospital for any unscheduled appointments through the whole pregnancy, despite all the complications I've had to deal with. Two days shy of 35 weeks, I broke my streak today. The good news is that everything is fine.

I woke up feeling pretty rough again today, after also feeling puny yesterday. I had the shakes pretty bad (as in I couldn't even give myself my insulin injection before breakfast), despite my blood sugar being right where it should be, so once I got to work today I went by the nurse's office. My blood pressure was good, though my pulse was a little high. She suggested I call my doctors to be safe, and so did my mom when I called her. My oncologist's office said I should call the OB, and the nurse called me back a few minutes later to say they wanted me to go into Labor & Delivery to be evaluated.

I stopped off at home to grab my chemo bag (because it has games and other things to keep me entertained) and my computer (because I was silly and thought that I'd maybe actually do some work while I was waiting around) and met Kevin at the hospital within the hour.

They hooked baby and me up to monitors and asked me all kinds of questions about what had been going on. My OB was in L&D this morning, so he was the one to come by and check on me. My pulse was still a bit on the higher side, and while my blood sugar and systolic blood pressure were both fine, my diastolic pressure was also a bit on the high side. I also had a little protein in my urine sample. The doctor ordered a bunch of blood work to rule out preeclampsia, check my thyroid, and look for anything else that could have caused my symptoms.

I stayed hooked up for the couple of hours we waited for my labs and such. The exam bed in the triage room is much less comfortable than the actual beds they have where I go for my non-stress tests. Those beds also have actual sheets on them, rather than the plastic mattress with a paper cover.
I got permission to eat, so Kevin went to find us some lunch (if you thought a hospital cafeteria could at least make vegetables appetizing, you'd be as disappointed as I was).

Yes, I was a little uncomfortable and whiny while I was there. What gave it away?

Anyway, we got the all clear just before 2 pm. They aren't sure what caused my symptoms, but everything they watch for checked out, so we got to go home. Kevin and I both ended up taking naps, which was nice. I decided I had enough energy to make dinner, but I overestimated my stamina by a bit and ended up finishing it while sitting on a stool in front of the stove. I guess that's something I should mention to the nurses when I go for my chemo infusion on Friday. It's getting harder and harder to stay standing for even 15 or 20 minutes at a time. It's probably a combination of being nearly 35 weeks pregnant and six rounds into chemo, but it's still pretty annoying. It makes me extra grateful for everyone who has brought us dinner or gift cards for dinner...I love cooking, but I just can't do it like I am used to.

I go back Friday morning for my scheduled NST and doctor visit, and I'll go straight from there to my infusion. Kevin might miss this appointment, since he missed half the day today. He's been pretty amazing at making my appointments throughout the whole pregnancy, but now that we're looking at twice a week appointments, it's going to be harder, especially when they're scheduled for mornings.
Oh, and in case I haven't mentioned how awesome my doctors are lately, my oncologist called while I was at the hospital to check on me and see how I was doing once he heard I'd been sent to L&D.

Survivorship Conference

Kevin and I attended the Working Together: Building a Bridge to Survivorship conference today, sponsored by Johns Hopkins. My oncologist had told me about it because the keynote speaker was Dr. Ann Partridge, who he had consulted with regarding my treatment, as she is a lead expert in treating young women with breast cancer.

It's been cold and rainy and gross all day, and we had to get up way too early on a Saturday morning, but it was a good conference. We got to meet a few new people, learned some things, heard from various specialists about different aspects of care from the time of diagnosis until years into survivorship. I even sucked up my shyness and went up to speak with Dr. Partridge after her address to say hello and thank her for her work.

I spent the rest of the afternoon working on FSA reimbursements and paying bills. We'll hit our out of pocket maximum (for me, at least) with the next chemo bill; we're actually pretty close already. Yippee.

Taxol Round Two...and I won Phase 10.

My second round of Taxol was mostly uneventful, and I think that's a good thing.

When we got there, I learned that somewhere along the line, the message that I was supposed to have blood work drawn to check my liver enzymes got lost. I couldn't start my infusion until they'd checked it, which would take between 60 and 90 minutes.

My nurse had a bit of trouble getting blood return on my port, though it was flushing just fine. She had me raise my arm and breathe in deeply, and that did the trick. The blood would flow whenever I took a breath in, and it'd stop when I breathed out. Weird, but effective after a few deep breaths. She capped my port access, and Debbie and I took a walk around the hospital while we waited for the results.

My liver enzymes were fine, so we were good to start the infusion. Since I didn't have any negative reaction to the Taxol last time, I was able to take the my Benadryl and Pepcid orally rather than by IV,  which saved a bit of time. I still had the IV steroid, but that's a small bag and doesn't take too long. The nurse said I was a little anemic, but between the chemotherapy and the pregnancy, it's not surprising. It isn't low enough that it needs to be treated; I'll just use my cast iron pots more and up my greens and such.

Debbie and I rematched in Phase 10, and I won this time. We finished the game just a few minutes before my infusion finished, so yay for good timing.

We finished up about half an hour before my genetics appointment, so Debbie went on home and Kevin met me at the hospital. After reviewing my medical history and family history of cancer, she explained the types of panels that are available. As best as I can recall, the simplest is to look for just the BRCA1 and BRCA2 genes, then a mid grade and a full panel. The full panel identifies any genes that are known or suspected to be related to risk of breast cancer, though there are many that have an unknown significance. We decided to do the full panel; I think more information can be helpful, and I don't think I'd freak out unnecessarily over potential results. It'll take between four and five weeks, which is kind of an annoyingly long time...and means we'll get the results right around the time baby comes. Let's pray they're good results, okay?

After the appointment, we headed to the old house to meet with the contractor who has been doing a bunch of work to get the house ready to rent. The biggest changes are the revealed ceramic tile in the bathroom (the original owners had stuck linoleum over top of it) and the addition of a wall in the basement to separate the front area from the utility area and create a potential third bedroom. New flooring, a painted ceiling, updated lighting make that space quite nice. We're hoping we can get someone in there very soon...know anyone looking for a place to rent? We have a nice rowhouse available!

Bebeh

It's a good thing I like GBMC, because we sure spend a lot of time there. Three days in a row this week, no less than two and a half hours each. We're also extremely grateful for the folks I work with who have provided meals to us this week. I haven't had to cook all week, and with as tired as I've been and as much as we've had going on, it's been an incredibly huge (and yummy!) help. 

Yesterday was our appointment with the cleft surgeon. We liked him; he didn't tell us a whole lot we didn't know already, but he also didn't sugarcoat things, which I appreciated. He couldn't tell us anything more about the cleft; he said that it's too difficult to tell for certain how severe it is until the baby is born. Sometimes they are smaller than they appear; sometimes they are larger. He also showed us some pictures of kids he has operated on, which helps give us a better idea of what to expect.

The speech pathologist will visit us in the hospital soon after the baby is born to do a feeding assessment and help us figure out which bottle will be best (though if the baby has only a cleft lip, we may not need to do anything differently for feeding). The surgeon will also visit us before we're discharged, and we'll have our first in-office visit within a week of the baby's birth. We can expect the lip surgery to take place when the baby is three months old, and baby will spend one night in the hospital afterwards. If the palate is affected, the surgery to repair it is usually around the baby's first birthday.

While there, we also got to talk to the coordinator of the cleft team, who I had spoken with on the phone when I first called for the appointments and who told me she is also a breast cancer survivor--10 years this fall! She said they have an FU Cancer party each year on the anniversary of her surgery. I like her.

Today was the first non-stress test for the baby. I wasn't sure what to expect going into it, so I was a little anxious. It turned out to be for nothing. I laid on an uncomfortable, paper-covered exam bed, pulled up my shirt, had a couple of sensors attached to my belly, and sat there for just under an hour while the sensors recorded baby's heart rate and movements. They take the baby's baseline heart rate and then want to see the baby's heart rate accelerate with movement. The baby was moving quite a bit (thanks to my late lunch, eaten on the way to the hospital), and actually kicked hard enough to dislodge the sensor a couple of times. I ended up having to push it down to hold it in place to get the last recording they needed. It was pretty cool to hear the kicks and punches at the same time I felt them.

We then walked across the hospital to the OB's office, where we had a quick ultrasound and got to watch baby practice breathing (super cool!) and more movements. My appointment with the doctor was pretty quick; he did tell us it would be fine to travel an hour and a half away to Chestertown at the beginning of June for Kevin's college reunion weekend (where he's planning to perform in the drama alumni improv show) but that he wouldn't recommend a visit to the cottage, five hours away in rural Pennsylvania, over Memorial Day weekend. I'd suspected as much.

Tomorrow is Taxol Day Two and my first genetics appointment. I'm not quite sure what to expect for that appointment either, besides having blood drawn and then waiting three-ish weeks to find out if I have any of the genetic markers which may impact surgery decisions.

Humor and Grace

Uh-oh, somebody let Kevin have the keys to the blog again. I'll try not to overstay my welcome.

Recently a friend from college contacted me on Facebook to let me know that she'd been thinking of me and Janet. She was also kind enough to send a whole mess of gifts for the baby: toys, linens, baby-proofing items, you name it. When I thanked her for her generosity, she said something that stuck with me:

"I give you guys a lot of credit for handling it all with a sense of humor and grace."

I've been spinning those words around in my head for a couple of weeks, thinking about what it means. In part, it probably means that I'm not entirely comfortable accepting compliments. In relaying my friend's remark to others, I've reflexively joked that it's the first time that anyone has accused me of being graceful. Go ahead and ask my high school track coach, who badgered me about my flat-footed running technique.

As you might be able to tell, the whole humor thing is easier for me to grasp. It's been a chief coping mechanism since adolescence, and moreover, it's one of the essentials of my relationship with Janet. We've told and retold the story of how we met, but I don't get tired of telling it. It was almost four years ago, and Janet had just signed up for OKCupid. She was browsing online dating profiles late at night, and was sufficiently bewitched by the dimples in my profile photo to take a closer look. Among other things, the profile template at OKC prompts users to share the most private thing they're willing to admit, and my response was, "I shower in the nude". Upon reading this, Janet says she laughed so suddenly and so loudly that her rescue mutt Val jumped up from beside her and began barking in alarm. So she messaged me just to say that my goofy joke had startled her dog. It set the perfect tone for our lives together, really.

Given our personalities and the unusual situation we've faced in recent months, responding with humor was never even a choice. I mean, when you lay out the facts as they are, it can seem bleak and overwhelming:

• After ten months of trying, we found out we were expecting a baby in March 2015, and Janet miscarried little more than a month later.
• Six months down the line, we conceived again. The pregnancy was classified high-risk, as Janet's blood sugar was on the high side for an expectant mom. (It's been well managed with insulin injections, thankfully.)
• At the ultrasound anatomy scan, we learned that the baby has a cleft lip. Even if there's no cleft palette (the OB says it's not likely, based on how small the cleft in the lip appears, but it can't definitively be ruled out), the baby will require surgery between 10-12 weeks after birth.
• Late in February, Janet found a lump in her right breast. She had an ultrasound and biopsy on March 1, and on the way home from the hospital got a phone call from her parents to let her know that her grandma had passed away. Two days later, after we'd driven to North Carolina for the visitation and funeral, Janet got the call with the dreaded breast cancer diagnosis.
• In the midst of all of this, I'm still paying the mortgage on the rowhouse, even though we moved into our new single-family home last Halloween. Between everything going on in our personal lives and our well-earned reputations as champion procrastinators, we haven't made it enough of a priority to find renters for the old house. So that's a lot of money stress, before you consider expenses for baby, cancer treatments, and pets (our obnoxious cat Charlie could not have picked a worse time to break multiple bones in his front paw).

It reads like an uncommonly woeful country music song, doesn't it? So, yeah, we could hole ourselves up in the house and have a pity party, but that's just not the way we're wired. We live our day-to-day lives as goofballs, because it just makes things easier. We'd crack up if we fixated on crappy things that can't be changed anyway. Instead, Janet heads out to a water aerobics class at the YMCA and I point out that she has the same aerodynamic hairstyle as the competitive swimmers. My mom accidentally implies that Janet is better at shuffling playing cards than I am because I'm highly intelligent, and Janet feigns indignation at being called stupid.

You never know how you're going to react to a difficult situation until you're confronted with it. I was terrified when we got the diagnosis, but soon thereafter I think we both adopted an attitude of doing whatever was needed to get through one day and move on to the next. Once we met with the doctors at GBMC, there was a plan of attack, and shortly thereafter, Janet began chemo treatments. Everything moved quickly enough that we didn't have time to dwell too terribly much. Cancer, chemotherapy, surgery, radiation...they're scary words. But actually going through the process has demystified a lot of it.

Most importantly, we have had an incredible support system from the word go. If we've handled our challenges with any sort of grace, we have drawn that grace from friends, family, and acquaintances. You've sent cards, baby gifts, and little tokens just to let us know you're thinking of us. You've cooked us meals or brought us takeout to spare us the trouble on days when we're busy or low on energy. You've shared your own stories to remind us that we can beat this thing. You've texted, called, emailed, or stopped by at the office to ask how we're doing. Most amazingly, you helped Janet raise $3,700 for childhood cancer research, which really helped her clear the mental hurdle of saying goodbye to her hair. Two months in, we feel like we're well on the way to beating cancer, and it's absolutely been a group effort. Thank you all.

Taxol Day One

I started the new chemo drug today, Taxol. My wonderful mother-in-law kept me company again, and I'm feeling quite good again this evening.

In my pre-infusion oncology visit, the PA couldn't find the lump at all either, and she wasn't concerned about the small soft lump I found earlier this week just under my right collarbone. She said it felt like just a little subcutaneous fatty deposit but said just to be safe I should check it about once a week and let them know if it changed at all.

We had a little over an hour between my appointment and my infusion time, so we walked over to the hospital to get a bit of lunch and pass the time. We didn't even get lost in the hospital, despite going a different way! Yay us!

Since the risk of allergic reaction is much higher with this drug, I had some IV Benadryl and other premeds, and the nurse sat with me for the first 15 minutes of receiving the med, and I did just fine--no reactions at all. I was surprised the Benadryl didn't knock me out, since it usually does just in pill form.

I stayed awake to keep the lead in Phase 10 with my mother-in-law all the way to the 9th phase before getting stuck (that's what happens when she deals me a run of 9 on a phase where I need a set of 5 and a set of 2) and lose the game in the next round. I suppose since she gives up her Fridays to chauffeur and keep me company, she deserves to win occasionally. (grumblegrumblegrouse; she probably has a horseshoe up her butt)

The oncology PA had asked my oncologist to check in with me about breastfeeding, as there was no note in the chart yet about it. He came by just before I started the Taxol and spent about 20 minutes with us. He'd also received the correct FMLA form (since the ones I'd been given by the now-no-longer-employed-by-my-agency HR director aren't actually legal) and filled them out with me. He was intrigued by our Phase 10 game (as are all of the staff who pass by us when we play), so we offered to deal him in. He declined saying something about his other patients not being very pleased at having to wait for him so he could play a card game. Oh well).

Then he gave me the disappointing news about breastfeeding. After doing his own research and talking with both my OB and the Boston oncologist, whom he considers the premier expert in treating young women with breast cancer (aww, he calls me young), he said he thinks it's just too risky. There is no evidence it causes harm, but it hasn't been studied. That leaves the possibility that the drug could be metabolized and still pass through breast milk, even for a few weeks after taking it. It's never been clinically studied, and it never will, because ethical guidelines rightfully prohibit medical testing in pregnant women and infants. That just isn't a risk that he--or Kevin and I--are comfortable with. Baby Brotzman has been through quite enough already.

I had been trying to get my head around the notion that this was a very real possibility, but I'd also been holding on to the hope that I could get a week of breastfeeding out of this ordeal, in that week I had off from chemo, so it's pretty disappointing. I actually haven't let myself think about it too much yet, because I know that as soon as I do, I'm going to have to have a sob fest to grieve it. It sucks. It really sucks. It was the thing I was looking forward to most with having a biological kid, and I'm not going to lie; it's going to be hard for met to accept. Once I let myself cry about it, I'll acknowledge all the things my brain knows, but first, my heart has to mourn.

The Taxol infusion is much quicker than the A-C, which is nice. It'll be even nicer when my appointments are in the morning and we can get back home and still have the afternoon to do things--or not do things. Today, I took about a 20 minute nap before we headed to Kevin's parents' for our customary Friday night pizza dinner. What with the two hour hiatus from sleeping from 4-6 this morning (thanks, bladder and brain!), bed is now calling my name quite loudly, so I think I'll heed that call.