Wednesday, August 24, 2016

Two months?!

It still isn't easy to find time and energy to post. Finn will be two months old tomorrow, and I can't believe it. Where did the time go? How did this happen?

He is so big now! He had a pediatrician appointment yesterday morning and got his vaccinations. Poor guy. I was doing okay with him crying, but when I saw that little tear run down his cheek, I lost it as well. He did fine once I was able to pick him up and snuggle him, and he was less fussy yesterday afternoon than he is many days, so I guess he tolerated the shots quite well. I asked the doctor about his fussiness, which we are pretty confident is due to gas, and he basically said it's something we have to wait out. He said colic is more common in boys than girls, but he's also at the peak time for it, so we should see it start to improve soon. We'll continue giving him Mylocon drops every few hours, keep him upright after eating, and pray for it to resolve soon. Everything else at the appointment was good, and there are no health concerns.

Other updates from the past two months, as I think of them:

We visited the Dulles Air and Space Museum at the beginning of August. It's a part of the Smithsonian, and an extension of the National Air and Space Museum in DC proper. Finn slept through most of it, but Kevin and I enjoyed it quite a bit. My favorite part by far was seeing the Shuttle Discovery. It's huge, and I was amazed to think I was standing next to a vehicle used to transport people into outer space. After the museum, we drove to Annandale to meet one of our breast milk donors, a cousin of my brother-in-law, and pick up over 300oz of milk. She also had a pack of diapers, several bottles and pacifiers, and a lot of adorable clothes for Finn, and we got to meet her family (including her three adorable children) while we were there.

That drive was a trial run for our first big trip with Finn a couple of weeks ago. We drove to Charlotte for a weekend to visit my family. We were anxious about how it was going to go, because it's an 8+ hour drive without an infant, and we were bringing the dog too. Val was confused when we told her to get in the front seat, since she's always been told to get in the back. There wasn't room for that though, and she eventually settled down into her new spot. Finn did excellent, especially on the way down. He slept pretty much the entire time we were in the car; we timed our stops for when he needed to eat or be changed. We took our time whenever we stopped, and it worked out well, even if it did take 11 hours. The drive back was a little more difficult; Finn fussed a fair bit, and we stopped more often. It still wasn't as bad as I feared it would be.

While in Charlotte, Finn got to meet lots of people for the first time, including his uncle Jason, his great aunt Catherine, his great aunt Addy Jean, his second cousin Connie, his future best friend Ray Junior (my best friend's son, whom I also got to meet for the first time, since he wasn't born yet the last time we were in Charlotte), and honorary aunt and uncle Katja and Pat and Katja's parents. We got to spend a lot of time with my parents and my sisters and their families, and it was so nice.

We picked up another 300-400 ounces of breast milk from Jason's Charleston cousin, who had brought the milk up a couple weeks earlier and left it for us.

Last week, my aunt shipped us another couple of days' worth of milk that my cousin's wife had frozen for their daughter and no longer needed. That milk, combined with what we already had and what we are expecting to get from the cousins in the next couple of weeks, was enough to make me realize that with a bit more effort, we might be able to get Finn through his surgery before we have to transition to formula (we aren't supposed to change anything about Finn's routine for the week before or after his surgery, including his milk, so he'd need enough to last til 9/21 for it to work).  I put out a request through two Facebook groups. Through those posts, we have received offers of several hundreds of ounces of milk, which should be enough to get us through the surgery (don't worry; I asked all the screening questions recommended by the lactation consultant and my OB). Many of the offers came from people in the Philadelphia area, and one person offered to pick up the milk from everyone there and meet me so that I wouldn't have to coordinate with multiple people on a single trip. I have cried many tears of gratitude over this. We are so fortunate to be the recipients of so much generosity from so many people.

My surgery is two weeks from today. I had my pre-op physical this afternoon, which was the first time I've seen my primary care doctor since September. I wasn't even pregnant then, so when the medical assistant asked me if I had any changes in my medical care since I last saw the doctor, I laughed out loud.

Kevin's parents have been so excellent about watching Finn for us. I'm not going back to work until the end of September, but I wanted to attend the trainings last week that were held for all staff in my department (great information on trauma-based care, plus needed CEUs). Kevin's folks came to our house (since the trainings were only a few minutes from our house) and kept Finn for us, and they've watched him for a couple of date nights, an Orioles game, and several medical appointments. They are great with him, and it makes leaving him so much easier. I miss him, but I never have to worry even a little. My supervisor asked me on the first day of the training if it was the first time I'd left Finn for a day. Ha! I had to leave him the first time on our second day home from the hospital for an appointment with my oncologist, and for longer than that for chemo when he was just six days old. I guess that has helped make leaving him for work a little easier.

Sunday, August 7, 2016

Ring my belllllllllll Ring my bell

I've read every blog I could find about going through cancer treatment while pregnant, and each time, I was disappointed when the posts dropped off after the baby was born. Now I get it. Boy, do I get it.

So this will be an update-heavy post, or as heavy as I can make it before Finn cries, or dinner is ready, or I fall asleep, or some combination of those things occurs.

My last chemo was Friday. My last chemo. It's weird to say, weirder to think about. Chemo has been a part of my life for the past five months, and now I'm done. I'll still be dealing with the side effects of it for a while, but I never have to have my port accessed again (in fact, I get it taken out in a few weeks; more on that later).

Side effects: I'm still tired afterwards, mostly Mondays and Tuesdays, but it's nothing like when I was also elebenty weeks pregnant.  I've continued to get headaches, but now that I can take real medicines and not just Tylenol, they're a lot easier to deal with. On that note, the aches aren't as severe either, probably for the same reason. I've had some mouth sores, but they're not too bad, and honestly, I'm not sure it isn't from gritting my teeth at night and not the chemo. It isn't thrush, which is good. My asthma is better, and my blood sugars have been good (when I remember to check, anyway). The newest side effect is neuropathy. It's essentially damage to nerve cells, and it usually starts in the extremities. I got really lucky in that I didn't have any of it until the end of treatment. Mine is in my fingers and toes, and I've had it for a few weeks. I didn't even recognize what it was until about a week ago; I thought I kept sitting weird and making my feet go numb. It's just annoying and weird-feeling at this point, but my nurse said it will likely get worse before it gets better. Depending on the severity, it can take months for the nerves to regenerate and symptoms to ease. I'll have to be careful about my grip and when I'm around sharp or hot objects, as the loss in sensation puts me at higher risk for dropping things and for unintentional injuries. Basically, it's like having a carpal tunnel flare but with less pain (and also it's in my feet).

Last Monday, I met with my oncologist. He is pleased with how everything has gone. He reiterated that what we can still feel of the tumor may be partially or fully scar tissue now, but regardless, it's less than half the size it was when we started, so we know the chemo has been working. The surgery and radiation will take care of any cancer cells that are left. I asked if there was any reason I'd have to have more chemotherapy, if it turned out my lymph nodes were affected, for example, and he said no. If that is the case, I'd have an axillary node dissection (which would require another surgery) to remove all affected nodes and then radiation would target anything that might have remained.

When I asked about the potential for further chemo, however, Dr. Donegan told me about a study that was recently released about the use of an oral chemotherapy called Xeloda. It was given to women with specific types (including my type) of breast cancer who received chemo prior to surgery but had cancer cells remaining at the time of surgery. The study found an increase in overall and disease-free survival in women who took it. It's something to think about if the pathology report after surgery shows any residual disease. I don't want to continue chemo, but I want a recurrence even less, so we'll revisit it after surgery if appropriate (fingers crossed it won't be).

He asked I wanted my port removed during the lumpectomy. I didn't know that would be an option; I thought I'd have to have it in for a few years after finishing treatment. He said it shouldn't be necessary. Some people like to keep it out of superstition or convenience for blood draws and such. Me? Nope. Get that sucker out. It's itchy, and it's uncomfortable when the seat belt lays on it.

We met with the surgeon on Tuesday and confirmed that I'll have a lumpectomy with sentinel node biopsy and port removal. I'll have to go in the afternoon before surgery to have a radioactive dye injected as a part of the sentinel node biopsy. The surgeon will remove what is left of the lump and take out margins around it to ensure no cancer is left behind. She will also remove specific lymph nodes (identified through the dye) and my port. I asked to schedule as soon as possible, but she won't operate within three weeks of me finishing chemo, and she's on vacation the following week. We decided on September 7, which is just after she returns. She said I can resume normal activity as tolerated after surgery. I won't feel good, but I won't have any restrictions.

The lack of restrictions is good. We met with the cleft team on Thursday. We met with several members of the team, most notably the surgeon and the speech/language pathologist. We got a lot of information and help from the SLP, particularly about how long we let him eat at each feeding. His nighttime feedings often take close to an hour; she suggested we keep his feedings to 30 minutes and perhaps reduce the nighttime amounts to just what he needs to go back to sleep, and give him more to eat during some of the day time feedings. She said that since takes about an hour for his stomach to empty, feeding him for an hour doesn't help him to learn the cues for a full stomach and an empty stomach. We've started making smaller bottles for the nighttime feedings, and we just give him more if he takes the whole bottle and still wants more. We haven't had any wasted milk since we started doing that, so yay!!

The two surgeons on the team and their residents examined Finn and noted that his palate looks great and that his cleft is pretty small. They also noted that Finn's nose looks really good and is only a bit asymmetrical. Dr. Capone will be Finn's surgeon. We met with him before Finn was born and liked him; it's also nice that his office is at GBMC. We talked about timing for his surgery; ideally, he'll have his surgery before I return to work. They won't do the surgery before ten weeks/ten pounds. Finn was 9lb, 8.9oz when they weighed him at the start of the appointment, so we shouldn't have any trouble reaching the weight minimum. They prefer to do the surgery closer to twelve weeks, but they said they'd consider it, what with our specific circumstances. Unfortunately, the timing doesn't work out, since he won't be ten weeks until 9/3, and my surgery is  9/7. Kevin and I aren't comfortable with that timeline, so Finn is scheduled for surgery on 9/13. They are still a bit closer together than I'd like, but I'll be done before his, and I think that'll be better. It also allows me to return to work by the end of September. I don't want to return to work, but I need to. I'll have just shy of three months out of work with him, which isn't enough but is a whole lot better than many people get.

My last chemo was Friday, and it was also Kevin's birthday, so we had all of the celebrations. Kevin's parents came over and kept Finn for us while Kevin and I went to my infusion. I wore my new Orioles Strike Out Cancer shirt, which was my birthday present to myself, and Finn wore a shirt that Kevin's cousin gave him that says "Yay for Mom." I'd been saving it for that day. :) I had picked peaches and blackberries with a friend on Thursday, so I made a cobbler and put together a gift basket for the staff at the infusion center to say thank you for all they have done. Kevin's parents brought Finn up to the hospital when I finished my infusion so that we could ring the bell together. He was not a happy camper and cried until just after we finished, when he settled down and was happy again. Troll baby.

The last chemo. I won't miss it, though I will miss the people there.
Five months after diagnosis, I got to ring the chemo bell. Finn was less than impressed.

Every time I walked past this bell on the way to chemo, I'd look at it and think: soon. Soon I will ring you. And now I have.

For Kevin's birthday gift, his parents kept Finn again while we drove to Frederick to visit the Flying Dog Brewery. We drank a lot of delicious beer and had a lovely time.

Saturday we headed to DC for the day to check out the Dulles Air and Space Museum and to pick up breast milk from one of my brother-in-law's cousins. The museum was excellent, and I was super excited to see the Discovery Shuttle in person.

This morning, Finn had no interest in sleeping after his 6am bottle. I asked him, nicely, if he would consider going back to sleep so Mommy could also go to sleep. He grinned at me. Troll baby. It was dark in the room, so this is the best picture I could get. I'm not good at editing them. Side note: he didn't fall asleep until nearly 10, and it was a short nap. He slept less than an hour from 6am until 1:45pm, when he finally fell asleep and slept for a couple of hours. This mama is tired.

This grin though. I just love it.

He's my favorite.

His End of Chemo shirt, and another smile.