It's official.

I am cancer free!

It's been a busy couple of weeks (edit: it's now been nearly a month since my surgery. I haven't spent much time around a computer. Second edit: I'm finally getting around to posting this over two months after surgery. I'm adjusting the posting date so it's around the time I finished writing the post). My surgery was last Wednesday, Finn's baptism was Sunday, his surgery was Tuesday, as was my followup with the surgeon, and our third wedding anniversary was Wednesday.

The baptism was wonderful, I thought. It was held in our backyard, and a number of family members and friends joined us for the afternoon. Finn was adorable in his little baptismal suit, and we had enough food to feed three times the number of people who came (I tried to tell my mother this, but she wouldn't listen).

The morning of Finn's surgery, I woke him at 2:30am to feed him a bottle, since he wouldn't be able to eat after 3am. It was a perfect dream feed--he woke up just enough to eat, ate fairly quickly, and went right back to sleep when he was done. We were up at 5:30 (note to us: we need at least 45 minutes to get out of the house, and it's time we stopped pretending 30 minutes is sufficient. It's not.), got to the hospital just after 6:30, and got checked in. Kevin and I went took Finn back to the pre-op area, where they had an adorable spaceship gown waiting for him. Unfortunately, it was sized to fit a 5 year old, so they gave us a little sleep shirt that was a bit of a better fit, though still a couple sizes too big. He was awake by this time, but happy, and we played with him while the nurses gathered their information and we spoke with the anesthesiologist and the surgeon. The surgeon asked to take a few pictures of Finn's lip for his records, reviewed what was going to happen, and reminded us what we could expect after the surgery. The staff let the grandparents come back to give him a kiss before I had to hand him over to the nurse. I cried as they took him back and we returned to the waiting area. The surgery took about two hours; Debbie and I played Phase 10 to occupy us for some of the time. She won, but in my defense, I was pretty distracted. Liz made us all cookies. The coordinator from the Cleft Team came by to see how we were doing. I was glad to be able to introduce her to my parents and Kevin's; she has been such an excellent support for us.
The surgeon came out and said Finn did great and was in recovery. We would be able to go back to see him as soon as he awoke. He had steri strips over his lip and a small bolster on his nose, which will help reshape his nostril to be more symmetrical. He left, and we were almost immediately called back to the recovery room. Finn's area was across the room from the entrance, and though I couldn't see his face, I recognized his bald little head as the nurse rocked him. She handed him to me, and I could actually feel the tension and worry begin to leave my body. I couldn't see the incision, as it was covered by the steri strips, and the bolster turned out to be a little blue blob stitched to his nose. He had arm restraints, called No-No's, on his arms to prevent him from touching his face (pulling at the bolster would be particularly bad!). We were allowed to feed him, so I settled into the chair with him on my lap and gave him a bottle. I had been nervous that it would be painful for him to eat, but he took the bottle with no issue whatsoever. It even took him less time than normal to eat.
We stayed in the recovery room for a good while (I wasn't paying attention to the time), and they allowed all of the grandparents and his aunt Liz to come back in pairs to see Finn. When our room was ready, I was asked to ride in a wheelchair and hold Finn as they took us through the hospital to the pediatric unit.
There was a handmade blanket on the bed from Project Linus, which donates the blankets to hospitals for children to have. It's beautiful and the sentiment of someone making that blanket and sending it to our Finn with thoughts of love and healing is a blessing. We haven't been able to use it much, as the Velcro on the No-No's snags the yarn. We'll use it often once he's out of the restraints.
We'd arranged with the hospital to use donated breast milk from the hospital's milk bank for the duration of our stay. To be safe, however, we had brought a couple of bottles from home. We ended up using our bottles because Finn got hungry again before the NICU milk was ready, so I'm glad we had it.
My appointment was at 2:45, so Kevin and I left Finn with my mom in the room and walked to my surgeon's office, which was just a couple minutes' walk through the hospital. When we signed in, we were told the doctor was running a little behind, so I explained our situation and asked if they could call us about 5 minutes before the doctor would be ready and we'd come back. She agreed, so we headed back.
Shortly after we got back to Finn's room, the cleft team coordinator came by again to check on us, so we got to talk to her again and clarify some information and ask some more questions.
We got the call from my surgeon's office after about 40 minutes that the doctor was almost ready. We got there and were shown to a room, and the nurse gave me a gown to change into. There was a knock on the door before I was fully changed, and I called out, "just a minute!"  I hear, "I've already seen it all." "Fair enough," I laughed, and I finished wrapping the gown as she came in. 
The doctor handed me the pathology report and asked how I was doing. I told her the lumpectomy incision didn't bother me at all and the port removal incision only hurt if the baby bumped it, but that the incision under my arm from the biopsy hurt quite a bit. She took one look at it and said, 'Of course it does. It's filled with fluid.' She said she'd give me an antibiotic for it and explained that they don't drain from that area unless it's really bad, since it would just increase the risk for more infection. She said the tumor was bigger than she'd expected it to be based on the last ultrasound; it was about 2.7cm. Kevin said, yes, but it's 2.7 centimeters of Titmonster that is no longer in me. The doctor laughed and said nope, it's in a jar. She got it all out, with clear margins all around, and my lymph nodes were also clear.
I asked about the chance of recurrence. She told me that she couldn't give me a number, and even if she could, she wouldn't. It is all guesswork, and it wouldn't do me any good to focus on a number, especially one that doesn't really even mean a whole lot. I think was hoping for different information. I wanted her to say the chance of recurrence was extremely low, that I didn't need to worry. But I know that isn't the case; I know that after 2 and after 5 years, my risk is much much lower than other types...but I have to get past those first two milestones.
I appreciated her honestly, even if it wasn't what I wanted to hear.
We returned to Finn's room for a mostly sleepless night, what with the nurse visits and the screaming and the poopy diapers and the gassiness.
The next morning, the speech pathologist came by to see how Finn was doing, and she answered a couple of questions for us. We noticed a stitch coming loose in his mouth, and so the nurse called the ENT on call, but she was in surgery. We waited all day for her to call back or come examine Finn, and finally around 4, when we were out of breastmilk and it was nearly time for Finn to eat again, we decided not to wait any longer. The stitch that was loose had fallen out entirely hours before, and the nurse had said she didn't think it was something to be concerned about. We also knew the internal stitches would work their way out over the next several days, so we were pretty sure it wasn't anything to worry about. And we were really ready to go home. We finally called the nurse's station to say we didn't want to wait any longer, and she said they'd just reached the doctor, and she was in clinic. I assume that means she didn't even bother to check in before returning to her office when she finished surgery. We were pretty aggravated about it; we could have left by 11.
The steri strips over Finn's lip were pretty loose, and Kevin and I were pretty amused at how they fluttered when he breathed. I'll post a video once I can get it transferred to my computer.
Our AC was out again when we got home; it was well over 80 in the house again. I'll called and arranged for the repair guy to come back out in the morning, and the three of us slept in the basement, where we have a separate AC unit; Kevin and I took the couch and Finn in his playpen. My mom said she was comfortable enough in the guest room on the first floor with the windows open.
The next week was pretty uneventful. Finn was up at least twice a night for about a week and a half, which made me pretty nervous about my upcoming return to work. By the second weekend after surgery, he got back to his previous (wonderful) habit of sleeping through the night, from around 8pm until around 6am.
Finn got his stitches out the Monday after surgery. I was glad, even though he no longer had the jaunty little nose hat (I had so much fun with that phrase that my phone learned it and suggested it whenever I started typing jaunty). They had me wait in the lobby while they took Finn back to remove his stitches. Smart thinking...I'd have been a hot mess. I could hear him crying, but it wasn't for long, and he had stopped crying by the time they brought him back out to me. They said he didn't like the bright surgical light; the actual suture removal didn't bother him. The surgeon handed me back his No-Nos and said we didn't need them anymore. Yay! He was very pleased with how everything looked and said when we came back in a week we'd talk about scar minimization. Until then, we would need to apply Aquafor to his lip three times a day.
The last weekend before I returned to work, we went to Ocean City with Kevin's parents, sister and her husband, and his aunt and uncle. It was Sunfest, a big craft festival, and so there was a bit of a crowd. It was downright hot on Friday before the clouds and rain came in for the weekend. His Aunt Elizabeth got him an adorable hat and sunglasses since he was squinting in the bright sunshine. We took Finn down to the ocean Friday afternoon and let him try out the water. He was...less than impressed. I think if the air had been a little warmer, he'd have enjoyed it more, but it was late afternoon by the time we took him down, and I think the shock of the cold water was too unpleasant. Elizabeth kept him for a while on a blanket in the shade so Kevin and I could play in the water for a while. We hadn't been to the ocean since Thanksgiving, and we hadn't been in the water in over a year; it was so nice to splash around. It was also pretty cool to not have to worry about my hair. ;)
We got back Sunday afternoon, and I spent some time getting everything prepared for the following day. We loaded the car with everything but his diaper bag, since I'd have to put his bottles for the day in it in the morning. The morning went very smoothly, and we got out of the house with no issues. Traffic was pretty light, and I had plenty of time at Kevin's parents to get the playpen set up, his supplies put away, let his parents know what he'd need through the day, and still get some extra snuggles in.
My first day back was uneventful; I spend most of it getting organized, catching up on how my clients have done with the other therapist, and cleaning a few months' worth of grime and mouse poop from my office. I did see one kid. It was nice to be back to work and getting to be a social worker again. I didn't realize how much I'd missed work until I was back. Returning to work when I know my kid is so well and lovingly cared for helps a whole bunch, too.

I've felt pretty good today. I took a pain pill early this morning, but Tylenol has been sufficient for the rest of the day

Finn had me up at 4:30 this morning; he wasn't awake yet, but he was grunting and it kept me awake until he was ready to eat at 5:00. He did not go back to sleep for more than a ten minute cat nap until after 8:00 this morning, when I brought him to my mom and went back to bed. I think he stayed awake with her the rest of the morning. He was fussy with me, and he kept banging his head into my chest. That wouldn't feel good under normal circumstances, but with three incisions across my chest, it was pretty painful.

I was excited to discover that I could still wear the baby using the Infantino wrap I've borrowed from a friend. It sits just right so that neither he nor the straps are putting pressure on my incisions. Mom and I ran some errands this afternoon and evening, and as we got to the mall, she asked if I'd put the stroller back into the car. Nope, sure hadn't. Another thing I didn't do? Put that wrap into my car. The Ergo was in there though, so I decided to try it. It worked! It wasn't as comfortable as the other wrap, but it was tolerable, and so Finn slept on me while we wandered the mall. I kept him in his car seat at Costco, our last stop of the day. 

We're working on getting things ready for Finn's baptism on Sunday; there's a lot to get done, but I think it's manageable. I feel bad that we didn't get invitations out sooner than last night, but in our defense, we have had a lot going on. And as I was typing that, Kevin just said to his mother on the phone, "At some point, we'll have to stop using cancer and having a baby as excuses". He's probably right, but it's going to stay my excuse for right now.

And somehow, it's already 9:30, and I really need to get myself to bed. Even after going back to bed this morning, I still got less than 6 hours of sleep, and that's just not sufficient.

Sayonara, Titmonster!

Surgery is done, and my anxiety has eased tremendously. We got to the hospital at 6:00am for all the pre-op work. I got the usual surprise and questions when the nurses realized when I was diagnosed, but it gave me the opportunity to share pictures of Finn, which is always fun.

The surgeon came in to talk before the surgery and have me sign the consent form. She asked, as required, what we were going to do today. I told her she was going to get rid of the Titmonster and I was going to take a nap. The anesthesiologist came in while we were talking and said they'd just returned from France. My doctor was quick to clarify that there were four of them together in France, and said just the two of them could have been a very different story. She said she was jet-lagged, and at 3am yesterday morning she was making corn chowder, and at 3am this morning she was ironing. I asked her if I should be worried that she was jet-lagged and about to perform my surgery; she said no, since her body thought it was the middle of the afternoon and she was good. She also said she fortunately didn't have any surgeries this afternoon.

She came back in a moment later and said, "We have one more thing to do, the bullshit marking for the hospital. The real markings, the ones that mean something, we will do in the operating room. But the bullshit hospital makings have to be done, so, right breast?". And she initialed my boob as required.

When I was first diagnosed, my OB had warned me that the surgeon was excellent, the best around, but that she was very sarcastic and sometimes cursed. I was maybe a bit disappointed when she didn't curse in our first meeting. I was more than a little tickled about the "bullshit marking".

The surgeon said everything went the way it should have. She took out the tumor and margins, one cluster of lymph nodes, and my portacath. I will have the results of the biopsy early next week.

We were home by noon, and I've had only a little pain today. I took a pain pill around 4:00pm, because it was starting to get worse and I know enough to stay ahead of the pain. I was even feeling well enough (and hungry enough) to make dinner while Mom and Kevin worked in the yard and took care of Finn.

TMI Warning:
The doctor warned me that my pee would be a bright blue-green color, and she was right. Kevin told me I'd have to let him see my blue pee. It was cooler than when I had the red/pink pee from the Adriamycin chemo, mostly because it was a prettier color.

Holding Finn and putting him to bed wasn't as difficult as I feared, though I'm prepared for it to be worse tomorrow. We had to change the dressing over the lumpectomy incision, as Finn spit up all over and down my shirt while I was rocking him before bed, and it covered the incision. I also appreciate that the surgeon labeled each of the three incision dressings with a note saying Remove 9/8/16.

Eviction Notice

In less than twelve hours, the Titmonster will be history. I went this afternoon to have the radioactive isotope injected into my boob, hung out in the waiting room for about 45 minutes while it traveled the same path everything--including cancer cells--takes out of the breast. Then I went back and had a couple special pictures made with a camera that measures gamma rays. That showed the technician the area where my sentinel nodes are, and she marked it with a black sharpie. Tomorrow, the surgeon will use that to guide her as she biopsies the sentinel nodes to make sure the cancer hasn't reached my lymph nodes. We don't expect that it has, and that's what I'm praying and crossing my fingers for. It'll take some time (several days) for the pathology report.

I'm nervous, not so much about the surgery--I'm looking forward to being cancer free, but about how the next couple of weeks are going to go. I will have an incision over the lump, on my right breast. I will have a second incision under my arm for the SNB. I'll have a third incision over my heart for my port removal. The placement of these is going to make it pretty difficult to hold and care for Finn like I will want to. My mom is in town; she came in yesterday, and she, Kevin, and my in-laws will be able to do all the things I can't. But it's going to be hard for me not to not be able to do it all. It's hard for me to be dependent, and I feel like I've only just gotten to the point where I can do all the things I want to do and used to be able to do.

The timing is also less than ideal since Finn's surgery is Tuesday. I'm hoping that I'll be feeling well enough by then to hold and comfort him in the ways he likes best--on my shoulder and held snugly.

Other big events in the next week: Kevin's cousin Brittany is getting married Friday night, and Finn will be baptized on Sunday. In true Janet-and-Kevin style, we didn't get the baptism scheduled until last week, so most of my family won't be able to come. It is important to us that he be baptized before his surgery, and by the time we realized this and started talking about it, this Sunday was our best bet.

I'm also feeling some general cancer anxiety. I know of too many people who have died from cancer recently. I know the stats for my cancer. I know my prognosis. I know I'm going to continue to kick the Titmonster's ass until there is nothing left to kick. I still get scared.

I try really hard not to dwell on it. I think I've done a particularly good job staying positive and not letting myself get trapped in fear or anger or helplessness. Sometimes though, it creeps up. I let it visit for a while, and then I take a few deep breaths and try to refocus. I've just had to do it a lot in the past couple of weeks. My oncologist said that's typical as people move from one phase to another, so that's a little helpful to know. I keep remembering the line that my friend has tattooed on her forearm:

"still I'll rise"

She got it shortly before beginning her chemo journey this spring, not long after I did. I love it, and I keep thinking maybe I'll ask her if I can be a copycat. Anyway, it's a reminder that whatever comes my way, whatever obstacles I'll face, I've got this. I'll make it through. I'll be stronger in the end.

PS: I'll write soon (hopefully) about the amazing community of women I have found who have supported us through this journey with breastmilk donations. We bought a deep freezer in May to store the donated milk we knew we'd be getting. We hoped to have enough to get Finn through six weeks before transitioning him to formula. With donations from eleven women from Pennsylvania to South Carolina, our freezer is completely full, with more in storage elsewhere, and it looks like he may be starting solid food before he ever has to have formula. So much gratitude. So many tears of joy and thankfulness. So much love. So much boob juice.

PPS: I have a couple more entries in draft form that I'll post as soon as I fix the darn formatting and get Kevin to edit them. It'll happen when it happens, but I'll try to make it soon.

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.

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.

Three weeks old today

Finn is three weeks old today. He's starting to show his personality, letting us know when he is content and when he is not. He loves his hands, snuggling, tummy time, and bath time. He is not a fan of wet diapers--or diaper changes, or of being cold. 

He's a great eater, most of the time. He's up to 3.5oz per feeding, and he's eating about every three hours. He'll sometimes get hungry after two or two and a half, and occasionally he'll go four hours. He has an adorable (and only sometimes annoying) way of avoiding the bottle when he's not hungry anymore. He opens his mouth wide and lifts his head and shakes it back and forth. It almost seems like a game to him. We need to get a video of it. Other times, he'll just close his mouth and nothing will get him to open back up.

Thanks to the generosity of my brother-in-law's cousins, Finn has been fed exclusively on breast milk. We've probably got two or three days left of milk from one cousin, and then we'll start on the milk from the other. I'm hoping we'll be able to make it to six full weeks, but it'll be close. The cleft team's dietician has recommended we save enough breast milk to allow us to have a gradual transition to formula, so we may be cutting it a bit close. Regardless, the fact that he's been able to have only breast milk so far is amazing. When we were still in the hospital, the lactation consultant came by and said their whole team was impressed that we were able to get donated milk for him, but honestly, it was very little our doing, and all thanks to the cousins.

Knowing how precious the milk is, it is hard when he doesn't finish a bottle. Fortunately, he hasn't done it often, but when we have to pour out half an ounce or more, it's almost painful. People talk about breast milk being liquid gold; it's even more valuable than that when we're dependent on others for it. We figured out that we can reduce the risk of having to pour out any milk by making smaller bottles and adding to it if he's still hungry.

His cord has finally completely  healed, so he got a real bath this morning. He loved it, particularly when we washed his hair. He was relaxed and content the whole time, until we drained the tub and he got cold, that is; then he got adorably mad until he was dry and clothed again.

Yesterday, Finn hung out with his dad and Grandpa B while I was at chemo, and in the evening he had his first trip to Costco and first trip to his Brotzman grandparents' house. Today he got to experience Target. He slept in his infant seat carrier draped under a blanket the whole time, which helped us to get in and out of the stores quickly.

He's sleeping well. He usually has one or two fussy periods in a day; we prefer it when those times are during the day rather than the middle of the night. He's having more stretches of 4 hours of sleep at night, which we really appreciate.

We decided to try a pacifier with Finn, after noticing that he loves to suck on his fingers, that sometimes he just can't settle down, and that when we give him his Vitamin D supplement, he loves to suck on our fingers. We're experimenting with several different kinds now to find one that he can keep in his mouth; from what I understand it can be difficult for any baby, but with his cleft, there's a bit more of a challenge. He wasn't interested in the ones we tried last night, so we picked up a couple more today and will see what he thinks of them. We'd prefer him not take a pacifier, since our understanding is that he won't be able to have it for a while after his surgery, but it seems like it might be something he needs--and it's easier to wean from a pacifier than from fingers, since we can just take away the pacifier.

I'm finding chemo to be easier now that I'm not pregnant. I have more energy even on my hardest days, and I'm so glad for that. I was really anxious about trying to take care of a baby with the amount of energy I had in the days following chemo--Mondays through Wednesdays are my most exhausted and achy days, but they're not as bad as they were when I was still pregnant. It also helps that I can now take ibuprofen for the aches instead of just Tylenol, which didn't seem to do much of anything for me.

I've only got three more chemo treatments to go. It's hard to believe I'm so close to being finished with it. Each week, I walk through the garden on my way into the infusion center, and I pass by the chemo bell, look at it, and think about when it'll be my turn. Soon, I think. Soon. And it is soon: August 5, 2016, which is also Kevin's birthday, is going to be one awesome day.

I noticed on Wednesday night that my lump was much more noticeable and closer to the surface than it had been, and I'll be honest, it panicked me. I talked with the oncology PA on Friday about it, and after checking it, she said she wasn't worried and that it was probably just the changes in my breasts from not being pregnant anymore. My milk never came in (a blessing, I've decided, since I didn't have to deal with the physical pain of letting it dry up nor the emotional pain of having to deal with milk that I couldn't use), so my breasts have changed somewhat over the past few weeks.
Even though she wasn't worried, the PA said she would send me for an ultrasound if it would ease my mind, and I agreed. They were able to get me in that afternoon, and they even worked me in two hours earlier than my scheduled appointment time when we walked over after my infusion finished. We had good news from the ultrasound: the tumor now measures about 1.5 cm, which is less than half the size it was when I was diagnosed March 1. I knew it was smaller, but it's kind of comforting to have that confirmation. I had hoped it'd be smaller, or even gone by now, but I'll take it. My oncologist has said that what we still can feel of the tumor could be all or mostly scar tissue by this point, though we won't know until surgery.

My hair is continuing to grow--Kevin observed this evening that it's sticking straight up on top now, and when he took a picture of me and Finn from behind me, I noticed how much darker it's looking. Yesterday morning I thought it almost looked like I had bedhead! It's hard to believe I almost have enough hair now for bedhead!

My eyebrows and eyelashes are continuing to thin, but they're still there. I know that it's possible, even likely, that I'll lose them completely, and that it might not happen until I'm done with chemo. It's odd to me; my head hair is coming back, and soon I'll have to shave my legs again (ugh!), yet my eyebrows and eyelashes are just now going. From what I've read and heard from others though, it's pretty common.

That's all I can think of for now. Finn's sleeping on my chest as I write, and I think he's got the right idea. Good night.