Wednesday, September 28, 2016

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.

Thursday, September 8, 2016

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.

Wednesday, September 7, 2016

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.

Tuesday, September 6, 2016

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.