Spoiler alert: Everyone is fine, but it was another scary day.
This morning, Finn and I left the house just before 9:00 to go meet someone to pick up another donation of breast milk. Half a mile from our house, a car turned left in front of us. I saw the car, knew they were going to go, knew they didn't have time to make it. I slammed on my brakes, swerved hard to the right shoulder, and felt the jolt and the crunch as the car hit me. Finn started screaming, and I took off my seat belt and tried to open my door to get out and check him. My door wouldn't open. I jumped over the center console into the back and began unbuckling Finn's car seat buckle. He stopped crying within a few seconds, but I was still terrified. I got him out of his seat as gently as I could manage and looked him over. He seemed fine and curled into my neck when I put him on my shoulder, which is what he loves to do when he's sleepy.
I dialed Kevin, who was fortunately working from home today. I told him someone had just hit us, told him the intersection, and asked him to come, and then I called 911.
The police officer found the other driver to be at fault, which was obvious but still a relief when he said it. My car wasn't able to be driven, so the police called for a tow truck while I got on the phone with my insurance company. Kevin called the pediatrician, who recommended we take Finn to an urgent care or ER to have him checked out. My shoulder and head were hurting, and so once my car had been towed, Kevin and Finn and I headed to the urgent care to get checked out. Fortunately, we have a car seat and base for each of our cars, so we could still keep Finn safely strapped in for the car ride. We were both cleared; the doctor said that babies are far better protected in their car seats than we are with just our seat belts. She said I'd probably be sore but they didn't see anything concerning.
Kevin would probably be disappointed in me if I didn't mention Finn's phenomenal up-the-back, into-the-armpits blowout in the waiting room. It was easily his biggest and messiest blowout yet.
I spoke with the insurance company a couple of times while we were waiting, and they confirmed the claims adjuster would be out later that day to give an estimate for my car and set me up for a rental. We weren't able to pick it up today though, as the satellite office we went to didn't have any cars left today what with the holiday weekend. We'll pick it up in the morning instead.
We finally got home a little after 1:00, and I still didn't have the milk I'd gone out for five hours earlier. I went back out for it while Kevin kept Finn so he could get a good nap in. I haven't added up how much we got, but it looks like it's going to be several days' worth! I will pick up the other batch of milk that's being donated tomorrow. My boy is five months old today, and he's had only breast milk. He started on oatmeal two weeks ago, and I'm so pleased that we were able to reach both of these milestones with him. I never would have expected that we'd be able to keep him exclusively breastfed for so long. Nearly a dozen women have shared their milk with us, and it amazes me every day when I go into that freezer to pull out milk for the next day.
Friday, November 25, 2016
Thursday, November 24, 2016
Thanksgiving
Kevin is quite fond of talking about how much 2016 has sucked, with the obvious and amazing exception of this amazing kid:
He's right. There's been so much bad this year. So much loss, so much pain, so many challenges. But a few weeks ago, my mother-in-law said something that strikes me just as hard today as it did then, a reframe that eases my heart and gives me hope for the future:
We just need to remember as 2016 the year you beat cancer, rather than just the year you had it.
Debbie is a very smart lady, even if I do beat her in Phase 10 a lot.
I beat cancer. I made and grew and delivered a healthy baby boy who has captured my heart in ways I didn't know were possible.
I was am constantly overwhelmed by the love,
generosity, and support of people we know and people we don't know. I
didn't just survive, I thrived. And I'm thankful for the opportunity to
continue to do so.
 |
| Thanks to my mom for the amazing picture. |
He's right. There's been so much bad this year. So much loss, so much pain, so many challenges. But a few weeks ago, my mother-in-law said something that strikes me just as hard today as it did then, a reframe that eases my heart and gives me hope for the future:
We just need to remember as 2016 the year you beat cancer, rather than just the year you had it.
Debbie is a very smart lady, even if I do beat her in Phase 10 a lot.
I beat cancer. I made and grew and delivered a healthy baby boy who has captured my heart in ways I didn't know were possible.
 | ||
| How I feel when I look at Finn. Also: otters and puns. |
Sunday, November 20, 2016
Still Cancer Free...after a scary few days.
Monday night, I found another lump. It was a little bigger than a pea. I told Kevin, took an Ativan, and went to bed.
Tuesday morning, I called my oncologist and spoke with the nurse. I got a call back soon after, and she said they wanted me to see the surgeon ASAP--they had an appointment scheduled for me at 1:30 that afternoon. I saw them surgical nurse practitioner, who said I needed an ultrasound to check it out. She walked me next door to Advance Radiology to have the ultrasound. I knew if she was acting that quickly, it meant she was concerned. She was reassuring though, and said she was a hugger and asked if I wanted one. Of course I said yes. I called to update Kevin and my parents, but I didn't have long to wait. The ultrasound took only a couple of minutes, and as I watched the sonographer's face, I suspected it might not be good news. She said she would show the images to the radiologist and be back soon.
After a few minutes, the NP came in and said that the ultrasound showed a solid mass inside of a seroma (a seroma is a fluid-filled cavity that is common after surgery and nothing to worry about). I would need a biopsy. I asked how worried I should be. She said she was concerned. It was a solid mass, definitely not a cyst. The mass could be scar tissue, but they had to do their due diligence to make sure. They could do the biopsy that day, in about an hour and a half, if I wanted to wait. Obviously I did, and I asked if I could call to have my husband come to be with me. She said of course, and that I could get dressed and go get coffee or take a walk until my appointment.
I started getting dressed, but she knocked on the door a minute or so later and said that they moved some things around and they could do the biopsy within half an hour. I put my gown back on and returned to the waiting area. I updated Kevin and my parents again (I told Kevin not to come, since he wouldn't be able to get there before I was done; instead he would just pick Finn up from his parents and I'd meet them at home. My mom said she was going to come up. She initially was going to come that night, but we decided it made more sense for her to wait until the morning. I still had to work on Wednesday, and if she waited, she'd be able to get and bring up the breast milk that my brother-in-law's cousin had donated again). And then, I cried. I had mostly held it together until that point, but the fear that gripped me was overwhelming. I was glad that I was the only one in the waiting area. I tried to distract myself with knitting and games on my phone, but my phone battery was nearly depleted. When someone came in to say they'd had a delay and it would be another half an hour or so, I got dressed (I was still in the hospital gown, which was at least a wrap gown so I didn't feel exposed), went to my car to get my phone charger, and then got a tea from the coffee shop. I didn't have to wait too long once I got back. The biopsy took only a few minutes. The sonographer marked a couple of spots on my breast before the radiologist came in, and then the radiologist explained she would numb the area first, then take several biopsies with a needle and put in a marker so that future imaging would be able to identify the area as having already been tested. Once the numbing agent was in place (I'd feel a stick and a burn with it), I should feel only minor pressure as she completed the biopsy. I knew this from the previous biopsy, but the reminder was helpful, since it was hard to focus and think clearly (to use the analogy I often use with my clients, my dinosaur brain was trying to be in charge instead of my thinking brain). The radiologist took four (I think) core biopsies, which means she used an instrument that takes a core of tissue larger than a simple needle biopsy. There is a loud clicking sound with each tissue sample taken, and I had to be careful not to jump when it happened. She finished with the biopsy, the sonographer cleaned up the area and put on some steri strips and gave me my instructions: no showering, lifting over 20 pounds, excessive arm movements or exercise for 24 hours, ice and Tylenol as needed. They put a rush on the biopsy, so I would get the results within three days. The NP had contacted Radiation Oncology already and my RO had said to take off Tuesday and Wednesday and restart radiation on Thursday.
I got home, and I was extra grateful for the Blue Apron box of meals we had for the week. I'd forgotten to cancel the subscription, but as it turned out, the timing was pretty good. It was another delicious meal, and it wasn't too difficult to prepare. It was nice to not have to shop or think much.
I had a really hard time staying focused at work on Wednesday. I saw one kid, instead of my usual five to seven. I tried to do paperwork, but even that was a significant challenge. I couldn't stop thinking about what it would mean if I my cancer had returned.
Mom got in Wednesday evening. It was good to have her there, and it helped distract me. I made another Blue Apron meal, just adding a frozen salmon filet to the barrimundi fish that was part of the meal for that night, and I was pleased with how well it turned out. She was planning to keep Finn Thursday and Friday, so I got to sleep in a little bit on Thursday morning. It was also Mom's birthday.
As I was getting ready, my phone rang. I recognized the number as a GBMC exchange, and I answered it. "Hi, Janet. It's (nurse practitioner), good morning." I said, "Hi, is it a good morning?"
"Yes," she said. "Yes it is. It's a fibroid, and it's nothing to worry about."
I ran down the stairs, knocked and opened the guest room door where my mother was sleeping. I asked the NP to hold on a moment, shook my mother awake, and said, "Happy birthday! It's a fibroid!"
I asked some follow up questions, confirmed I would go back to radiation that afternoon, and hung up. Finn had woken up while I was on the phone, so I went to get him and gave him some extra snuggles of relief before I had to go to work.
I saw my radiation oncologist before my radiation treatment that afternoon, and I asked him what would have happened if my cancer had returned. He said, "Do you really want to go there?" I said, "No, but my mind is doing it anyway, so I might as well know." He told me I would have had surgery right away, either a lumpectomy or mastectomy. I said I'd probably just want to get rid of my boobs if the cancer returned; he said that was perfectly reasonable. He said I'd then probably finish radiation and they'd determine what else needed to be done at that point. He also said that in his 35 years of practice, he's had only one patient whose cancer returned during the treatment phase. He said it was highly unlikely, and he was glad I wasn't in the tiny percentage of people for whom it happened. Then he gave me a hug and sent me for my treatment.
We went out to dinner for Mom's birthday that evening--it was pot pie night at Casey's, and as Kevin told me when we first started dating, that pot pie will change your life.
Friday was uneventful, and we went to Kevin's folks for pizza. Saturday we took Finn to his music class at the library and went to brunch with my mom before she left to go home to Charlotte. We had a wedding to attend for some dear friends, and I was asleep before 10, because I am officially an old fart.
Tuesday morning, I called my oncologist and spoke with the nurse. I got a call back soon after, and she said they wanted me to see the surgeon ASAP--they had an appointment scheduled for me at 1:30 that afternoon. I saw them surgical nurse practitioner, who said I needed an ultrasound to check it out. She walked me next door to Advance Radiology to have the ultrasound. I knew if she was acting that quickly, it meant she was concerned. She was reassuring though, and said she was a hugger and asked if I wanted one. Of course I said yes. I called to update Kevin and my parents, but I didn't have long to wait. The ultrasound took only a couple of minutes, and as I watched the sonographer's face, I suspected it might not be good news. She said she would show the images to the radiologist and be back soon.
After a few minutes, the NP came in and said that the ultrasound showed a solid mass inside of a seroma (a seroma is a fluid-filled cavity that is common after surgery and nothing to worry about). I would need a biopsy. I asked how worried I should be. She said she was concerned. It was a solid mass, definitely not a cyst. The mass could be scar tissue, but they had to do their due diligence to make sure. They could do the biopsy that day, in about an hour and a half, if I wanted to wait. Obviously I did, and I asked if I could call to have my husband come to be with me. She said of course, and that I could get dressed and go get coffee or take a walk until my appointment.
I started getting dressed, but she knocked on the door a minute or so later and said that they moved some things around and they could do the biopsy within half an hour. I put my gown back on and returned to the waiting area. I updated Kevin and my parents again (I told Kevin not to come, since he wouldn't be able to get there before I was done; instead he would just pick Finn up from his parents and I'd meet them at home. My mom said she was going to come up. She initially was going to come that night, but we decided it made more sense for her to wait until the morning. I still had to work on Wednesday, and if she waited, she'd be able to get and bring up the breast milk that my brother-in-law's cousin had donated again). And then, I cried. I had mostly held it together until that point, but the fear that gripped me was overwhelming. I was glad that I was the only one in the waiting area. I tried to distract myself with knitting and games on my phone, but my phone battery was nearly depleted. When someone came in to say they'd had a delay and it would be another half an hour or so, I got dressed (I was still in the hospital gown, which was at least a wrap gown so I didn't feel exposed), went to my car to get my phone charger, and then got a tea from the coffee shop. I didn't have to wait too long once I got back. The biopsy took only a few minutes. The sonographer marked a couple of spots on my breast before the radiologist came in, and then the radiologist explained she would numb the area first, then take several biopsies with a needle and put in a marker so that future imaging would be able to identify the area as having already been tested. Once the numbing agent was in place (I'd feel a stick and a burn with it), I should feel only minor pressure as she completed the biopsy. I knew this from the previous biopsy, but the reminder was helpful, since it was hard to focus and think clearly (to use the analogy I often use with my clients, my dinosaur brain was trying to be in charge instead of my thinking brain). The radiologist took four (I think) core biopsies, which means she used an instrument that takes a core of tissue larger than a simple needle biopsy. There is a loud clicking sound with each tissue sample taken, and I had to be careful not to jump when it happened. She finished with the biopsy, the sonographer cleaned up the area and put on some steri strips and gave me my instructions: no showering, lifting over 20 pounds, excessive arm movements or exercise for 24 hours, ice and Tylenol as needed. They put a rush on the biopsy, so I would get the results within three days. The NP had contacted Radiation Oncology already and my RO had said to take off Tuesday and Wednesday and restart radiation on Thursday.
I got home, and I was extra grateful for the Blue Apron box of meals we had for the week. I'd forgotten to cancel the subscription, but as it turned out, the timing was pretty good. It was another delicious meal, and it wasn't too difficult to prepare. It was nice to not have to shop or think much.
I had a really hard time staying focused at work on Wednesday. I saw one kid, instead of my usual five to seven. I tried to do paperwork, but even that was a significant challenge. I couldn't stop thinking about what it would mean if I my cancer had returned.
Mom got in Wednesday evening. It was good to have her there, and it helped distract me. I made another Blue Apron meal, just adding a frozen salmon filet to the barrimundi fish that was part of the meal for that night, and I was pleased with how well it turned out. She was planning to keep Finn Thursday and Friday, so I got to sleep in a little bit on Thursday morning. It was also Mom's birthday.
As I was getting ready, my phone rang. I recognized the number as a GBMC exchange, and I answered it. "Hi, Janet. It's (nurse practitioner), good morning." I said, "Hi, is it a good morning?"
"Yes," she said. "Yes it is. It's a fibroid, and it's nothing to worry about."
I ran down the stairs, knocked and opened the guest room door where my mother was sleeping. I asked the NP to hold on a moment, shook my mother awake, and said, "Happy birthday! It's a fibroid!"
I asked some follow up questions, confirmed I would go back to radiation that afternoon, and hung up. Finn had woken up while I was on the phone, so I went to get him and gave him some extra snuggles of relief before I had to go to work.
I saw my radiation oncologist before my radiation treatment that afternoon, and I asked him what would have happened if my cancer had returned. He said, "Do you really want to go there?" I said, "No, but my mind is doing it anyway, so I might as well know." He told me I would have had surgery right away, either a lumpectomy or mastectomy. I said I'd probably just want to get rid of my boobs if the cancer returned; he said that was perfectly reasonable. He said I'd then probably finish radiation and they'd determine what else needed to be done at that point. He also said that in his 35 years of practice, he's had only one patient whose cancer returned during the treatment phase. He said it was highly unlikely, and he was glad I wasn't in the tiny percentage of people for whom it happened. Then he gave me a hug and sent me for my treatment.
We went out to dinner for Mom's birthday that evening--it was pot pie night at Casey's, and as Kevin told me when we first started dating, that pot pie will change your life.
Friday was uneventful, and we went to Kevin's folks for pizza. Saturday we took Finn to his music class at the library and went to brunch with my mom before she left to go home to Charlotte. We had a wedding to attend for some dear friends, and I was asleep before 10, because I am officially an old fart.
Tuesday, October 4, 2016
Countdown to radiation
I saw my oncologist this afternoon. I came prepared with a list of questions...and still forgot one.
Things I know now:
I can get a tattoo if I want (sorry Mom and Dad).
I can (and should) get the flu vaccine, whopping cough, and any other vaccines I need.
Radiation will start around the beginning of November, and I should get a call from Radiation Oncology in the next few days to schedule my first appointment. I'll go for about six weeks, with weekends and holidays off. While the fatigue from it is cumulative, it's not as bad as the fatigue from chemo. It also shouldn't matter what time of day I go--it won't be that severe, though I may want to go to bed earlier than I usually do. It is completely safe to be around Finn (and others); I won't emit any radiation.
I won't have an MRI or other scan at this point unless the radiation oncologist thinks it's necessary or there is something that seems suspicious. I can't remember exactly what he said, but I think that once treatment is complete, I'll see my oncologist every four months for about two years, and decrease in frequency after that.
The joint pain I'm experiencing is common, and it could be related to the neuropathy, which has otherwise improved. It should continue to improve over time, and moderate activity and acupuncture may help.
We talked for a good while about maintenance chemotherapy. He shared more details of the study that we had talked about in previous visits, as while we were there looked up what clinical trials may be available in the area. Johns Hopkins and Sinai are both participating in a randomization trial comparing capecitabine (Xeloda, an oral chemo) and carboplatin (given intravenously). One study found Xeloda to increase overall survival and disease-free survival; this study is looking to compare the results of the two. I'm interested, and I will put in a call to the study coordinator to learn more about it and see if I qualify. I don't love the idea of more chemo, but I do like the idea of continuing to fight and doing more to decrease the likelihood of the cancer recurring. So we'll see.
Things I know now:
I can get a tattoo if I want (sorry Mom and Dad).
I can (and should) get the flu vaccine, whopping cough, and any other vaccines I need.
Radiation will start around the beginning of November, and I should get a call from Radiation Oncology in the next few days to schedule my first appointment. I'll go for about six weeks, with weekends and holidays off. While the fatigue from it is cumulative, it's not as bad as the fatigue from chemo. It also shouldn't matter what time of day I go--it won't be that severe, though I may want to go to bed earlier than I usually do. It is completely safe to be around Finn (and others); I won't emit any radiation.
I won't have an MRI or other scan at this point unless the radiation oncologist thinks it's necessary or there is something that seems suspicious. I can't remember exactly what he said, but I think that once treatment is complete, I'll see my oncologist every four months for about two years, and decrease in frequency after that.
The joint pain I'm experiencing is common, and it could be related to the neuropathy, which has otherwise improved. It should continue to improve over time, and moderate activity and acupuncture may help.
We talked for a good while about maintenance chemotherapy. He shared more details of the study that we had talked about in previous visits, as while we were there looked up what clinical trials may be available in the area. Johns Hopkins and Sinai are both participating in a randomization trial comparing capecitabine (Xeloda, an oral chemo) and carboplatin (given intravenously). One study found Xeloda to increase overall survival and disease-free survival; this study is looking to compare the results of the two. I'm interested, and I will put in a call to the study coordinator to learn more about it and see if I qualify. I don't love the idea of more chemo, but I do like the idea of continuing to fight and doing more to decrease the likelihood of the cancer recurring. So we'll see.
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.
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.
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.
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.
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.
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.
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.
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.
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. |
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| Five months after diagnosis, I got to ring the chemo bell. Finn was less than impressed. |
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| 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. |
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| This grin though. I just love it. |
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| He's my favorite. |
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| His End of Chemo shirt, and another smile. |
Saturday, July 16, 2016
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.
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.
Sunday, July 3, 2016
7 Taxols, 8 Days of Parenthood
Friday was my first post-pregnancy Taxol infusion. My mom came with me
while Kevin stayed home with Finn. Leaving him was hard. I may have
cried a bit. Can we blame that on hormones? Yes? Good. Kevin sent pictures to keep me entertained.
Typically, they'd infuse two units for someone in my situation, but since I'd just had the two, and it was so late in the day (transfusions take about three hours per unit), I just got the one today.
I was still able to get my Taxol, so that keeps me on schedule there (yay!), and I finished it about half an hour before my blood was ready. I closed out the infusion center, finally finishing a couple minutes after 5.
The whole time we were there, I felt wide awake and alert and knew that attempting to sleep would be futile. It wasn't until the last forty or so minutes that I decided I'd just close my eyes, even if I didn't sleep, and I think I got about a twenty minute nap in. Every minute counts, right?
Several of the office staff and my regular nurses stopped by to see pictures and ask how we were doing. I'm not going to lie; it was fun showing off pictures and talking about how awesome Finn is. They also liked my awesome new socks from my sister Caren.
Unfortunately, I overdid it. My sister Kathleen, her husband Will, and their 11-month-old Graham came in for the weekend on Friday night. Kathleen and Mom both offered to take any feedings during the night, and I told them I'd get them if needed. I did not. Finn pulled an all-nighter, waking for his 11pm feeding and not going to sleep for more than ten minutes at a stretch until 5am. Every time I thought ok, it's time to wake someone up, he'd fall asleep, and I'd think we were in the clear. Then I'd lay him down and he'd start crying again. Eventually, he took a whole bottle and fell into a deep sleep, and I was able to go to bed as well. I slept about four and a half hours, got up for a bit to have breakfast and visit with everyone, then went back to sleep for another hour or so.
 |
| Cousins! |
Here's Finn at exactly one week old. Yes, I cried.
I was smart enough to recognize that I shouldn't try to do the tour, but we did enjoy a tasting and sitting under the pine trees while Finn slept in his stroller and Graham played in the grass. I have spent very little time outside lately, so it was a big boost to my energy and spirits.
Life is good.
Happy baby!
Finn got his first bath at home a few nights ago. My mom captured this amazing shot of him with his big wide smile. I love it so much.
Tuesday, June 28, 2016
Finn Caleb is here!
We are so in love. We are so tired. We are so amazed by this tiny human we created. We are parents!
Finn was in no hurry to come out, and I spent over 24 hours in labor, but he was a trooper. He was 7lb, 7 oz and 21 inches long at birth, and he's already putting back on the weight he lost in the first two days. He has a little bit of jaundice, but the pediatrician wasn't concerned about it at our first visit this morning and said it should begin to ease by tomorrow. He's a fantastic eater; his little cleft lip has posed no problems for him. He has more hair than his mom, though I will point out how much mine is growing in and that it's starting to get (relatively) long. It's also super soft.
I had some difficulties after he was born and ended up needing two units of blood the following day, but it has helped me feel much better. I was a regular blood donor up until pregnancy, but I never thought I'd be on the receiving end. Kevin made his next appointment to donate platelets before we even left the hospital; he'll go in on Thursday. If you're interested in donating, you can schedule an appointment online. I'll have a minimum of 12 months deferral once I finish treatment, but for as long as they'll take my blood, they can have it. Also, hopefully, the federal regulations surrounding eligibility of LGBT people will soon catch up with the reality of the lack of risk posed.
We will write more about him and our experience so far, but my brain and my body are too tired right now, and I'm going to try to get some sleep before Finn wakes up and is ready for playtime...from about 11pm until 3am.
I had some difficulties after he was born and ended up needing two units of blood the following day, but it has helped me feel much better. I was a regular blood donor up until pregnancy, but I never thought I'd be on the receiving end. Kevin made his next appointment to donate platelets before we even left the hospital; he'll go in on Thursday. If you're interested in donating, you can schedule an appointment online. I'll have a minimum of 12 months deferral once I finish treatment, but for as long as they'll take my blood, they can have it. Also, hopefully, the federal regulations surrounding eligibility of LGBT people will soon catch up with the reality of the lack of risk posed.
We will write more about him and our experience so far, but my brain and my body are too tired right now, and I'm going to try to get some sleep before Finn wakes up and is ready for playtime...from about 11pm until 3am.
Monday, June 20, 2016
So very close.
I had my second-to-last NST today. Baby was a little more stubborn than usual, so it took longer than it has in the past, but everything checked out just fine. Without doing a full growth sonogram, the tech estimated the baby is about 7lb, 14 oz, which is just fine with me--not too big, not too small.
TMI Alert. I've had some stomach issues for the past few days. Until today, I assumed it was just from the Taxol, since I have had minor issues each weekend afterwards. When the issues continued into today, I began to get concerned that it could be the diarrhea that I know often accompanies early labor, especially since I've had lots of contractions today. Some of them have been painful, but most of them have just been uncomfortable. The nurse said if I continue to have issues tomorrow, or if it gets worse, I should call the doctor and see if they want to do anything about it, but for now, I just need to make sure I'm drinking enough water.
It would be pretty nice if I went into labor on my own and didn't have to be induced, though the idea of this baby coming already is just a wee bit anxiety inducing. I know it's just a couple of days at this point, but somehow, those couple of days gives me a cushion that keeps it from being too real.
We had plans already to see Finding Dory with Kevin's parents, sister, and brother-in-law, and while I decided I was still up for it, I was worn out from the day and not up for cooking. We went to dinner at Red Brick Station, which was definitely a winner, particularly with the half-priced burger special. Finding Dory was excellent, and I only missed a few minutes of it when my bladder and the baby combined their powers and I had to sneak out to pee.
I took a nice long, warm-not-too-hot bath when we got home, and it eased some of the contractions discomfort. I'm now sitting with my feet up and drinking a bottle of water while I write, and I'll put myself to bed in just a few minutes. The usual Taxol aches have begun to settle in, so bed will be extra nice.
My mom is planning to head up tomorrow afternoon. She will be bringing the donated breast milk from my brother-in-law's cousin; another family member is bringing it from Charleston, SC to Charlotte, and she'll be on the road as soon as she picks it up from them. She'll have the car filled with gifts from the virtual baby shower my sisters hosted for me last month, as well as items that my almost-one-year-old nephew has outgrown. I'm looking forward to having her here. Dad will come up in another couple of days (sooner if needed), and it'll be super awesome to have them both here.
TMI Alert. I've had some stomach issues for the past few days. Until today, I assumed it was just from the Taxol, since I have had minor issues each weekend afterwards. When the issues continued into today, I began to get concerned that it could be the diarrhea that I know often accompanies early labor, especially since I've had lots of contractions today. Some of them have been painful, but most of them have just been uncomfortable. The nurse said if I continue to have issues tomorrow, or if it gets worse, I should call the doctor and see if they want to do anything about it, but for now, I just need to make sure I'm drinking enough water.
It would be pretty nice if I went into labor on my own and didn't have to be induced, though the idea of this baby coming already is just a wee bit anxiety inducing. I know it's just a couple of days at this point, but somehow, those couple of days gives me a cushion that keeps it from being too real.
We had plans already to see Finding Dory with Kevin's parents, sister, and brother-in-law, and while I decided I was still up for it, I was worn out from the day and not up for cooking. We went to dinner at Red Brick Station, which was definitely a winner, particularly with the half-priced burger special. Finding Dory was excellent, and I only missed a few minutes of it when my bladder and the baby combined their powers and I had to sneak out to pee.
I took a nice long, warm-not-too-hot bath when we got home, and it eased some of the contractions discomfort. I'm now sitting with my feet up and drinking a bottle of water while I write, and I'll put myself to bed in just a few minutes. The usual Taxol aches have begun to settle in, so bed will be extra nice.
My mom is planning to head up tomorrow afternoon. She will be bringing the donated breast milk from my brother-in-law's cousin; another family member is bringing it from Charleston, SC to Charlotte, and she'll be on the road as soon as she picks it up from them. She'll have the car filled with gifts from the virtual baby shower my sisters hosted for me last month, as well as items that my almost-one-year-old nephew has outgrown. I'm looking forward to having her here. Dad will come up in another couple of days (sooner if needed), and it'll be super awesome to have them both here.
Saturday, June 18, 2016
The cat and I are not friends.
I wasn't given the option, of course, but if I had been, I'm pretty
sure I'd have eaten an entire jar of pickles over giving a cat a bath at
38 weeks pregnant. Pickles, in case you are unaware, are cucumbers soaked in EVIL and I hate even the smell of them.
Apparently Homer wasn't too happy about being put in the crate to get his nails trimmed this morning, and he let me know it by using the crate as his litter box before we got back home.
Don't let the pathetic expressions fool you. He was disgusting and covered in bathroom mess, and Kevin was not at home, so it's me you should feel sorry for. Thank goodness his nails were freshly trimmed. I don't want to imagine how shredded I would have been otherwise.
Apparently Homer wasn't too happy about being put in the crate to get his nails trimmed this morning, and he let me know it by using the crate as his litter box before we got back home.
Don't let the pathetic expressions fool you. He was disgusting and covered in bathroom mess, and Kevin was not at home, so it's me you should feel sorry for. Thank goodness his nails were freshly trimmed. I don't want to imagine how shredded I would have been otherwise.
Last Taxol before baby!
I went in yesterday for my last chemo before we meet Baby B. Everything went well, and many of the staff and volunteers came by to wish me good luck. I got lots of hugs and requests to let them know when the baby arrived and how we were doing. I also won in Phase 10. My sweet, kind, and gentle mother-in-law called me lots of unbecoming names. I mostly deserved them: I won by several phases this time.
After a nice nap on the couch while Kevin finished his work from home day, we headed to his parents' house for our pizza dinner and then drove back to GBMC for our infant CPR class. That was the last major thing we needed to do before the baby comes, and so I have officially given Baby Brotzman permission to come when she or he is ready.
The weekend is, as they all seem to be lately, packed. We have to pass on his cousin's son's first birthday party, also this afternoon, as he had a high fever last night and has been exposed to hand, foot, & mouth disease, which is something I absolutely do not want to be anywhere near, but there's plenty of other stuff going on. While Kevin cuts the lawn at the row house, I'll take Homer to the vet to get his nails trimmed. The other cats will let me do it, but Homer is next to impossible, so it's worth it to pay the vet to do it. Also, those suckers are long and sharp--definitely something we don't want to worry about when he meets the baby. We've got Kevin's Mannion family reunion picnic this afternoon, which is always a fun time. Besides that, we'll be doing a little last minute reorganizing of the cabinets in the kitchen, because I've finally decided where I want to put bottles and other baby supplies, and we'll hopefully get the decorations hung in the nursery. I imagine they'll look even nicer hanging on the walls than they do propped up on the floor against the wall. There will likely be at least one nap in the midst of that.
Kevin will go with his dad and sister to the Orioles game tomorrow afternoon. He's pretty excited about the newsboy cap giveaway for Father's Day. I'll stay home and rest, since I'm usually feeling pretty puny starting on Sundays.
After a nice nap on the couch while Kevin finished his work from home day, we headed to his parents' house for our pizza dinner and then drove back to GBMC for our infant CPR class. That was the last major thing we needed to do before the baby comes, and so I have officially given Baby Brotzman permission to come when she or he is ready.
The weekend is, as they all seem to be lately, packed. We have to pass on his cousin's son's first birthday party, also this afternoon, as he had a high fever last night and has been exposed to hand, foot, & mouth disease, which is something I absolutely do not want to be anywhere near, but there's plenty of other stuff going on. While Kevin cuts the lawn at the row house, I'll take Homer to the vet to get his nails trimmed. The other cats will let me do it, but Homer is next to impossible, so it's worth it to pay the vet to do it. Also, those suckers are long and sharp--definitely something we don't want to worry about when he meets the baby. We've got Kevin's Mannion family reunion picnic this afternoon, which is always a fun time. Besides that, we'll be doing a little last minute reorganizing of the cabinets in the kitchen, because I've finally decided where I want to put bottles and other baby supplies, and we'll hopefully get the decorations hung in the nursery. I imagine they'll look even nicer hanging on the walls than they do propped up on the floor against the wall. There will likely be at least one nap in the midst of that.
Kevin will go with his dad and sister to the Orioles game tomorrow afternoon. He's pretty excited about the newsboy cap giveaway for Father's Day. I'll stay home and rest, since I'm usually feeling pretty puny starting on Sundays.
Thursday, June 16, 2016
Thank you.
In a week filled with sorrow and heartbreak at the news of the mass murder of LGBT people in Orlando, in our own little bubble of a world, we have felt much comfort from those around us.
Generosity has been the theme of the week for us.
Overwhelmed and grateful have been the feelings of the week.
On Sunday, we met my brother-in-law's cousin to pick up a donation of breast milk. It was enough to fill a large cooler, and it'll feed Baby B for a few weeks. We're also working with another of his cousins to get another donation of milk--the first month's worth, from colostrum to week four! I can't remember if I've posted about this already, and I'm too tired to go back and look for it, so I'll just say that these donations really help to take the sting out of not being able to breastfeed the baby myself.
Our wonderful friend Molly offered to set up a GoFundMe account for Kevin and me to help us with all of the medical expenses that we're facing through my treatment. In five days, 51 people have donated $3250 to us. It's enough to pay our co-pays for one of my A-C (the drugs I had for my first cycle of chemo) infusions, plus about five of my Taxol infusions. I have tried to compose this post for four days now, since the donations first started flooding in, and it's been so difficult. I just don't have the words to express how grateful I am to everyone. We have received donations from family members, friends, friends of friends, and people we have never heard of.
Kevin is a better writer than me, especially when it comes to things like this, where I am so completely and utterly overwhelmed with emotion and love that I often can't find any words at all and tears of thankfulness have to suffice. So I'll share his words (posted earlier this week on Facebook), and I'll pray that each of you knows how much it means to us.
"Sometimes I worry that I'm going to run out of ways to express my gratitude to everyone. Since Janet Anne's diagnosis back in March, our friends, family, coworkers, and community members have given so much: advice, companionship, sympathy, prayers, hope, time. Then there are the material gifts: baby clothes, toys, books, and care items, ready-to-heat meals (that's a biggie)...and of course we were blown away when you donated $3,700 to Janet's head shaving fundraiser for the St. Baldrick's Foundation.
Generosity has been the theme of the week for us.
Overwhelmed and grateful have been the feelings of the week.
On Sunday, we met my brother-in-law's cousin to pick up a donation of breast milk. It was enough to fill a large cooler, and it'll feed Baby B for a few weeks. We're also working with another of his cousins to get another donation of milk--the first month's worth, from colostrum to week four! I can't remember if I've posted about this already, and I'm too tired to go back and look for it, so I'll just say that these donations really help to take the sting out of not being able to breastfeed the baby myself.
Our wonderful friend Molly offered to set up a GoFundMe account for Kevin and me to help us with all of the medical expenses that we're facing through my treatment. In five days, 51 people have donated $3250 to us. It's enough to pay our co-pays for one of my A-C (the drugs I had for my first cycle of chemo) infusions, plus about five of my Taxol infusions. I have tried to compose this post for four days now, since the donations first started flooding in, and it's been so difficult. I just don't have the words to express how grateful I am to everyone. We have received donations from family members, friends, friends of friends, and people we have never heard of.
Kevin is a better writer than me, especially when it comes to things like this, where I am so completely and utterly overwhelmed with emotion and love that I often can't find any words at all and tears of thankfulness have to suffice. So I'll share his words (posted earlier this week on Facebook), and I'll pray that each of you knows how much it means to us.
"Sometimes I worry that I'm going to run out of ways to express my gratitude to everyone. Since Janet Anne's diagnosis back in March, our friends, family, coworkers, and community members have given so much: advice, companionship, sympathy, prayers, hope, time. Then there are the material gifts: baby clothes, toys, books, and care items, ready-to-heat meals (that's a biggie)...and of course we were blown away when you donated $3,700 to Janet's head shaving fundraiser for the St. Baldrick's Foundation.
It's precisely because of this generosity that we've hesitated in
asking for more. But Molly Weeks Crumbley offered to set up a donation
page to help defray our medical costs, and I don't mind telling you that
the expenses associated with cancer treatment caught us off guard. Long
story short - Blue Cross/Blue Shield Federal offers great maternity
coverage, but their cancer coverage leaves a lot to be desired.
Our gofundme page has been up for less than 48 hours, and you've already contributed over a thousand dollars. Janet and I both are simply overcome with emotion. Some of you have boosted the signal by sharing our page with your own friends, resulting in donations from folks that we don't even know. What is there to say? Thank you. You've given us comfort, hope, and peace of mind. I hope we can repay you in kind."
I don't know how we'll ever be able to repay everyone for their support and generosity, but I promise you, we will do everything we can to pay it back or pay it forward. We thank you, and we love you.
Adding to this week of spoils, I picked up a mystery package from the post office this week. It was from an organization called Lisa's Army, and it was a comfort package that my mother-in-law nominated me for. The package has hand sanitizer, lotion, Chapstick, peppermints and Queasy Pops, Kleenex, super soft socks, an extra soft pre-tied head covering, a journal, two coloring books, crayons, colored pencils, a pen, a Sudoku puzzle book, a deck of cards, a water bottle, an inspirational banner, a card, a cozy fleece blanket, a bag to hold it all...and an iPad. It's full of all of the things that make those long hours in an infusion chair more tolerable, and it's such an amazing gift. Yes, I cried again.
Finally, here are some more pictures from our maternity shoot, from our photographer's blog. Doug Crowther is an amazing photographer, and we could not be happier with the pictures. If you are in the Baltimore area and looking for a photographer for maternity, newborn, or family photos, do yourself a favor and check him out.
Our gofundme page has been up for less than 48 hours, and you've already contributed over a thousand dollars. Janet and I both are simply overcome with emotion. Some of you have boosted the signal by sharing our page with your own friends, resulting in donations from folks that we don't even know. What is there to say? Thank you. You've given us comfort, hope, and peace of mind. I hope we can repay you in kind."
I don't know how we'll ever be able to repay everyone for their support and generosity, but I promise you, we will do everything we can to pay it back or pay it forward. We thank you, and we love you.
Adding to this week of spoils, I picked up a mystery package from the post office this week. It was from an organization called Lisa's Army, and it was a comfort package that my mother-in-law nominated me for. The package has hand sanitizer, lotion, Chapstick, peppermints and Queasy Pops, Kleenex, super soft socks, an extra soft pre-tied head covering, a journal, two coloring books, crayons, colored pencils, a pen, a Sudoku puzzle book, a deck of cards, a water bottle, an inspirational banner, a card, a cozy fleece blanket, a bag to hold it all...and an iPad. It's full of all of the things that make those long hours in an infusion chair more tolerable, and it's such an amazing gift. Yes, I cried again.
Finally, here are some more pictures from our maternity shoot, from our photographer's blog. Doug Crowther is an amazing photographer, and we could not be happier with the pictures. If you are in the Baltimore area and looking for a photographer for maternity, newborn, or family photos, do yourself a favor and check him out.
Wednesday, June 15, 2016
My water (bottle) broke
So I promised you a funny story from a recent doctor appointment. Here it is.
My doctor's nurse is pregnant and exactly two weeks behind me (for those paying close attention, that makes her baby due the same day as my baby brother's baby!). At our appointment two weeks ago, she was training a new person to fill in while she's out on maternity leave; I'm pretty sure it was her first day.
She got my vitals and led us into the exam room. I've always got a water bottle with me, and unfortunately, the lid to my favorite bottle has started to fail, and it opened while we walked down the hall. I realized it as we entered the exam room, and I said to her, "Oh, watch your step, my water just leaked."
I didn't think anything of it until I set my bag down and saw her stricken face. Apparently, "my water just leaked" is not a thing a 36-weeks-pregnant woman should say to her nurse on the nurse's first day on the job. I hurried to explain what I meant, though it was somewhat more difficult as I was laughing so hard I was in tears.
Kevin and I were still cleaning up the water (which had pooled in the bottom of my purse), when Dr. K, his regular nurse, and the new nurse came in, all still laughing about the scare I gave the poor nurse.
And maybe I had difficulty keeping a straight face last week when I saw her again.
My doctor's nurse is pregnant and exactly two weeks behind me (for those paying close attention, that makes her baby due the same day as my baby brother's baby!). At our appointment two weeks ago, she was training a new person to fill in while she's out on maternity leave; I'm pretty sure it was her first day.
She got my vitals and led us into the exam room. I've always got a water bottle with me, and unfortunately, the lid to my favorite bottle has started to fail, and it opened while we walked down the hall. I realized it as we entered the exam room, and I said to her, "Oh, watch your step, my water just leaked."
I didn't think anything of it until I set my bag down and saw her stricken face. Apparently, "my water just leaked" is not a thing a 36-weeks-pregnant woman should say to her nurse on the nurse's first day on the job. I hurried to explain what I meant, though it was somewhat more difficult as I was laughing so hard I was in tears.
Kevin and I were still cleaning up the water (which had pooled in the bottom of my purse), when Dr. K, his regular nurse, and the new nurse came in, all still laughing about the scare I gave the poor nurse.
And maybe I had difficulty keeping a straight face last week when I saw her again.
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