Hello 2020! I have not written an update in quite some time, so I decided to force myself to write while I have a little time to myself.
Going into this new year and new decade should feel exciting, but part of me feels some grief for the end of the last decade and the start of this one. This will be a decade of scans every 6 months, of wondering if my cancer is going to come back – and if it’s going to come back worse. Sarcoma likes to go to the lungs, so I’ll have MRIs on my leg and CT scans on my lungs for all of the 20s. If it doesn’t come back, then in the 30s I’ll be home free, but if it does…
It’s not something I like to think about but that creeps up on me when I least expect it. It comes to me in the silence of the night and when I’m alone, in the quiet few moments I have in the morning before the rush of mothering takes over. The grief for the normalcy I have lost, for the pain that I’ve been through, for the fact that more than anything I have faced the stark reality of my mortality. Not a day has gone by that I haven’t thought about my cancer; it doesn’t help that nearly four months out of my surgeries I am still not “back to normal.”
My leg muscles basically atrophied from lack of use for months and the process of getting them strong again is not going to be a quick one. I’ve been going to PT for three weeks now and I have noticed the improvement in my gait and my strength since starting but man, I have a LONG way to go. I still can’t run or jump properly and still struggle with going down the stairs. My walking has improved immensely and I’m trying to walk as much as possible to get that strength back, but I get tired quicker than I’d like. I have youth and determination on my side, but I have bone damage and a missing muscle working against me.
Less than two weeks ago I met with my plastic surgeon and my surgical oncologist to look at my healing and check up on me. I am officially discharged from plastic surgery! My plastic surgeon is a genius and one of my favorite people that I’ve had to work with during the past six months but I’m happy to never see him again. If for some reason the calf muscle that was rotated to my shin doesn’t relax in the next year, we may talk about a second surgery to cut out the nerves. It just feels really wrong – for lack of better verbiage – whenever I move that muscle. My cat scan and MRI are scheduled for February 24th – which means I’ll get to spend my birthday (the 25th) anxious for my results.
I’m what they consider NED – no evidence of disease. I’ll be cancer free if I make it through the next decade without sarcoma making another appearance…which it very well may, considering that it was high grade. So what does that mean for me? Do I stop living my life because my cancer might come back? No. Do I live in constant anxiety that it might? Also no. But it does mean allowing myself to crack my defenses a little bit every so often. It does mean that some days I feel that grief in my throat and that pit in my stomach. It means that some moments I do feel like it’s just a matter of time before this damn thing comes back with a vengeance. But I think that’s just…part of my life now. It is part of what this is. My new normal.
And part of that new normal is also figuring out what is healthy for me. I’ve been slowly but surely realizing that social media has drained me more than I expected and more than I’d care to admit. When I was stuck in bed or in my wheelchair it was a good way for me to occupy my time, but now, as it’s been some time without family staying in my house to help me, it’s becoming an extra thing on my to-do list. Social media is important to me for a lot of reasons – it’s a way for me to connect with others, it’s a way to update those around me and it’s a source of income. But social media is vicious and a lot of times I get caught up in “succeeding” – what my insights are, how often I post, feeling the need to post every day, etc. But I don’t want social media to be another thing controlling my life. I have a lot of collaborations and partnerships this month to get through but then we’ll see if it’s time for a well-earned break. All of my experience with cancer has made me recognize how fleeting time is, how quickly days and weeks and months go buy. I feel robbed of months of my children’s lives this year because of this situation – and I don’t want social media to do that too.
I don’t know what the new normal is going to look like for me, yet. I’m hoping that in the next few weeks I get some clarity about what’s best for my overall health.
After my first surgery I thought that I’d have the wound VAC on for 2-3 weeks, minimum. My appointment to meet with my plastic surgeon was nine days post-op because it was clear after the first VAC change that my tissue wasn’t going to grow back on it’s own. That’s the thing about radiation; it doesn’t discriminate. Just because I’m young and otherwise healthy didn’t mean I got to escape the full force of radiation. My tissue was (and is) so damaged. Too damaged to consider any other alternative.
My plastic surgeon came highly recommended, with a last name that no one could pronounce. My oncologist told me everyone loved him and my nurse raved about him. I wasn’t sure what I expected but I suppose a counterpart to my older, very experienced surgical oncologist? Instead when the plastics team walked in I was surprised to note that they were all fairly young – and the Ativan I had taken prior to this third VAC change loosened my lips enough to ask if I should let them operate on me (OOPS. Remind me that anxiety meds are not my friend). They assured me they were (and to further comfort myself I did some background checks and yes my doctor was very qualified).
Dr. Sammy told me that I had a few options. First: I could get a tummy tuck. The location where the sarcoma had made its home was soft-tissue, not muscle, so taking soft tissue and replacing it would be the most aesthetically pleasing solution. However, the surgery itself would be long (~6 hours) and he would basically have to clear a whole day to do it. He said it would probably be another 3 weeks before we could do it, and worse, he said, was recovery. While I’d get the benefit of a tummy tuck after three kids, I’d also have to deal with the recovery which would be difficult and extra painful in an area that would otherwise be untouched.
My other option, he said, wasn’t so pretty. They’d make a long incision in the back of my calf, pull out one muscle, and fill the hole with the muscle. Calf muscle doesn’t belong in the front of your tibia, but it would do the job. It would be a lot less aesthetically pleasing, but recovery would be significantly easier. Either way they would take skin from my thigh or butt and cover the new area. The other thing? He would put me on his schedule the NEXT DAY.
The decision was basically made for me. The only reason to take the first option was for the sake of vanity. And yes, of course it was tempting…but knowing that I could get this gaping hole in my leg filled and the wound VAC off, and to get back home to my kids before the end of September, was so worth it.
I packed a bag, expected to be there for a few days. They said I’d probably say from Friday – Sunday or Monday. My mother-in-law was already staying with us so we didn’t have to worry about the kids. I tried to force my brain to get into fight mode, knowing that my first surgery was harder than expected and not knowing what the second would really be like.
I got to scrub down with that terrible surgical soap again, this time having an allergic reaction (because why not, right?). We were back at the hospital at 9 AM the next day.
This time around my surgery prep team was very on top of things. There was a huge flurry of activity, different people coming in and out, overloading me with information. This time I saw an actual anesthesia team – who informed me that I didn’t need to dump any of my milk (contrary to what the resident of my previous team had told me). They explained that they were going to put a catheter in my leg and it would administer local anesthesia to my leg to keep it numbed in addition to the general anesthesia I’d receive before going into surgery. They said they’d keep this pain blocker in after my surgery to help keep the pain under control. Apparently even after three babies I have great anatomy and the head anesthesiologist took the opportunity to draw some explanations out on one side of my pelvis for his resident. I took it as a compliment.
My plastic surgeon came in with an ultrasound machine to draw all over my calf to plan where he would take the muscle from. He told me that drawing it out he’d be able to minimize the incision to remove the muscle – I’d have a 6 inch incision instead of the usual 12 inch one. Then we figured out where we’d take the donor skin from: my right butt cheek, as close to my hip as possible. And then we were ready. It was a short surgery, they said. 2 hours max. I gave my stuff to the nurse to keep just in case someone forgot to call my husband. And waved goodbye for the second time in two weeks.
Once again they wheeled me away to the surgery room. For whatever reason I can’t remember it as clearly as I can remember the surgical room for the first surgery. I think it was a shorter ride over. The same process – moving to the surgical table, an oxygen mask and then blackout.
Waking up was as hard as it was the first time. I was super disoriented, I remember feeling super parched and exhausted. I told my nurse in my delirium that she was pretty. (She was, I stand by that). It took me an hour or so to do well enough for them to let Lucas see me. Once again, he came in looking more tired than I was. It had been another surgery that took two hours longer than anticipated. I went in at noon and when I saw Lucas it was already after six pm.
But, Lucas told me, had I seen Dr. Sammy? I hadn’t. And so Lucas told me that my surgeon had attempted something new. That I hadn’t been told about. He attempted – and succeeded – to move the muscle from the back of my calf to the front without making an incision. He had spared me additional suffering and an additional scar. That’s why my surgery took longer. Here are the pictures from my surgery that Dr. Sammy sent me, a week later.
Coming out of this surgery was hard. I woke up to another wound VAC on my leg, and a brace. I thought that my last hospital stay was hard; little did I know what was coming.
I should have known that the night would go wrong from the get go. It took them an hour to find my belongings, which should have been taking to a locker but that were somehow misplaced. Once they found my things, Lucas was too tired to stay with me – so I gave him my blessing to take Blaise and go home. Almost as soon as he left my nurses decided to take me to my room. My mother in law and left me some balloons that were a nice gesture but more trouble than they were worth and they made a few jokes about the balloons getting in the way. We got into the elevator and one of my tubes got stuck in the door. We were trapped, for a solid 30 minutes.
I took this in the elevator that we were stuck in. She is pretty, right? I cracked some jokes about how they should be glad that I wasn’t a smelly old man; they agreed. I’ve always been one for gallows humor, particularly during this time that I’ve had cancer. I remember them blaming the balloons.
We did eventually get out, thanks to the nurses on the other side who were able to cut the cord that had gotten stuck in there. We made it out and into my room which was a solo room (THANK GOD. It’s already bad enough to use a bedpan, but using it with another person on the other side of the room? Nah. No thanks.)
I was greeted by a very sweet older nurse named Bill who will forever be my favorite nurse because he made me a peanut butter and jelly sandwich when I hadn’t eaten anything in close to 24 hours; he tried to help me get comfortable and settle in for the night. Little did I know what would happen as the night went on…
Somehow, someone made a mistake. Well, multiple mistakes were made. The first one was that the catheter in my leg was disconnected after surgery; while the catheter itself remained in my leg, the actual drip itself was disconnected. I am not sure who decided that, but it happened before I moved out of post-op. The second mistake was that we took the heart monitors off. That would usually not be a big deal, but the hospital apparently only had a limited number and in order for me to be connected to the pain blocker I had to have the heart monitors on. So without those, I couldn’t be reconnected.
My pain progressively got worse as the pain blocker wore off; I had taken a dose of oxycodone when I first got to my room. Around midnight, Bill had left and another nurse was with me for the night, and my pain was becoming unbearable. She attempted to get a hold of the anesthesiologist on call to reconnect the pain blocker. She tried every 30 minutes to no avail. My IV was starting to hurt, so I got a new one placed. I learned to ask for the IV with the blue cap because that’s the one they use for children and apparently I have tiny veins. Another hour passed. Another. It was three AM and she wanted to give me another oxycodone…except it had been taken off of my chart. The one drug that I had been on since my first surgery had been removed from my chart in the middle of the night, hours after a second intense surgery. I was left to cope with Tylenol for the longest vigil of pain I had ever experienced in my life.
In those late hours of the night I recorded some Instagram stories. I messaged whoever was awake. I remember texting and the pain I was in was so bad that I would black out halfway through typing so the sentence would start out normal and would end like thisshwuejdnwh….
Somehow I made it through the night. I didn’t sleep. We could not get a hold of anyone. I did not get an answer from anesthesia or the plastic surgery team until nearly 9 AM the next day.
It was a mistake, they said. The tall, blonde plastic surgeon with a high ponytail and the hipster, less attractive plastic surgeon with the round glasses. They said they didn’t know how it happened. The anesthesiologists apologized too as I sobbed and asked how the actual fuck everything had been removed from my chart and that there were no heart monitors to put on me to reconnect the pain blocker. I had spent the night feeling like someone had taken my leg muscle and was twisting it like a loaf of Babka and then stabbing me with a knife. My donor site, which I was forced to sit on since they ended up flaying the skin from the middle of my butt cheek, was barely a nuisance compared to the severe anguish I felt from my leg. They told me that usually people can’t handle the pain from the donor site, so that gave everyone some perspective. The fact is that radiated tissue is severely damaged and sensitive; and I had just had my bone scraped not even two weeks prior. Of course that pain was tremendously worse than a sheet of skin that had been removed like roast beef from my ass.
They put the pain blocker back in and put oxycodone back on my chart. I could take up to 15mg per dose, every 4 hours…which is what my previous team had told me I could take in 12 hours if I wanted to nurse. Apparently not everyone is informed when it comes to pumping and that dumping is really a thing of the past. I managed with 10mg for the most part, every 4 hours, with the pain blocker.
When I saw my surgeon later that day he was furious. FURIOUS. I mean, he was angry enough that he repeated multiple times that he submitted an incident report. What had happened to me, he said, was not acceptable. Someone would reap the consequences of their actions – but really, I’m the one who reaped them. He apologized so many times. He wrote his cell phone number on my board for me in case anything happened – and as a warning to everyone else that he was watching.
Dr. Sammy also gave me a new healing and pain regimen. A long list of vitamins (a prenatal, vitamin c, calcium + magnesium), some eastern medicine and this powder called Juven to dump in a drink and chug. He said I needed to be on a high protein diet. Whatever it took to get me to a place where I could start healing.
He also explained a little about why he did what he did in the operation room. He wanted to practice on a corpse first but he didn’t have any time. And really, what he did on me he wouldn’t do on an older patient. But it could change the lives of young sarcoma patients. Sarcoma is only 1% of all cancer. There’s not a lot of funding that goes into it, and not a lot of experimenting. Usually, Sarcoma has two peaks: children under 15, and adults over 60. To get someone in their late 20s is extremely uncommon. But that made me the perfect person to try this out on. The success of this surgery, he said, would change the lives of children with sarcoma. They wouldn’t need to get an incision the length of their arm or leg to move muscle around. They could do it with some cameras and pull it over and know that it would work. This is something that I am still blown away by, a month later.
The rest of my stay was hard. My pain was bad, very frequently. I missed my kids. I hated using a bedpan or the portable toilet that they’d place next to my bed. I forced myself to keep pumping for Blaise. I struggled to sleep because even when the pain subsided, the narcotics gave me nightmares.
I realized then, those first few days out of the six I was in the hospital, that I would not be walking out of there like I had thought I would. The pain was no where near leaving. My kids were not going to have their mom back just yet.
This was the hardest thing I’ve ever done. Emotionally. Physically. I was alone so much, alone with my pain and my thoughts and wondering why, why had God allowed this in my life? To baptize me through fire? Because I’m sorry, but the whole “God never gives you more than you can handle” thing is not true. God gives you more than you can handle so that you lean on him and not yourself. And I can tell you honestly that I had a lot of conversation with God during my time in the hospital, although a lot of it involved swearing…
The sixth day came. At 6 AM they came and took the wound VAC off. They told me they’d work on my discharge papers and my meds. And I was officially free, not “cancer free” because they don’t use that terminology if you’re like me and have a 20% chance of recurrence. But free to go home and free of any more surgeries, for the time being…
I got home and laid down with my kids. And thanked God for letting me be there with them. I hoped then that I would be walking in a week. Well, that wasn’t the case. But I made it. I freaking made it home.
trigger warning: cancer, surgery + graphic images ahead, not for the faint of stomach ⚠️
I have known for a while that it is necessary to write this post, not for you – my readers – but for me to process the significant trauma that my mind and body has gone through. The past month and change has been a grueling marathon of pain and I don’t think that I can properly transmit my descent into the fire, ie, my surgeries and their aftermaths. This verbiage may seem dramatic but the only possible way for me to recall and transmit this is by narrating this as if it was not my own story. I was not prepared for the extreme suffering that my body went through and I don’t think I have properly processed it yet – but I don’t want to forget it, either.
My first surgery was scheduled for September 10th. My understanding was that it would be a quick surgery, that I’d be in and out in two hours. My mom drove up to help me and I told her I’d need her for that one night that I’d be in the hospital because my oncologist told me I’d be there for one night and go back with a wound VAC on my leg but otherwise I’d be fine. I had the pleasure of scrubbing down with surgical soap the night before and morning of that was itchy and left my skin feeling raw. I packed an overnight bag with very little besides my breast pump, some granola bars and a toothbrush – mom essentials, right – and went in that day thinking positive thoughts. We actually arrived an hour later than our “arrival” time because of Boston traffic and I should have seen that as some foreshadowing that this whole ordeal would be a much longer process than I expected.
I went in ready for surgery and they handed me an outfit I hadn’t worn in seven months – a Johnny and those mesh undies you get when you’re at the hospital for L&D. I sent this picture to my friend Elysa who was waiting for her second baby to arrive and jokingly asked if we’d be matching that day.
They brought me into triage and said it would be quick and my oncologist assured me that he would call my husband as soon as surgery was done. I handed my wedding ring over to Lucas and said I’d see them on the other side. The team wheeled me into surgery, my oncologist chatting nonchalantly to me about this art exhibit he had seen at RISD that had a significant amount of modern female artists. Somewhere he had read (pretty sure, notes from my social worker) that I painted and thought it would help me get my mind off of what was about to happen. They moved me to the surgical table, put an oxygen mask on and piled a few blankets on me. The room was cold enough that no bacteria could possibly survive, I joked to the team. They warned me they were about to put me under, and the last thing I heard and saw was my oncologist telling me to think of a painting. Lee Krasner’s Gaea was the last image in my head.
As I sit here writing this I‘m having a hard time remembering how or where I woke up. I don’t react well to general anesthesia and it knocks me out for longer than it should. I remember a few things: trying to look at the clock, the nurse bringing me some crackers and water, wondering where Lucas was. I remember not being able to move my leg and that there was a huge machine connected to it. I remember laying there looking at the people across from me who had also gotten out of surgery. Everyone looked like they were half in the grave.
When the nurse finally brought my husband to me he looked as bad as the other surgical patients, his face lined with worry. Apparently no one had called him to tell him that my surgery had gone as expected or that I was ok. I was brought up to a shared room with a woman who looked (and acted) like the witch from Snow White.
Looking back, my memory regarding this first surgery is barely a whisper, like my brain couldn’t process what had happened and decided to let it fade like a bad dream. That first stay was a day longer than I had planned and I learned very quickly that I was not going to resume normal life right away. I was in constant pain and the resident on my oncologist’s team was calling the shots re: my painkillers. She had me on half the normal dose of OxyContin and said that since I was breastfeeding I couldn’t exceed 30mg a day without having to dump my milk (this was not true). It was not nearly enough considering that I had a huge hole in my leg and a wound VAC inside the space where the tumor used to be. I found out the next day when Lucas demanded to finally talk to my doctor that they had removed the tumor but that they had had to scrape my bone in the process which would mean more pain and delayed healing. The pain from that, he said, could potentially be chronic.
My first hospital stay is a foggy rotation of sleeplessness and pain and annoyance, of asking if there was anything I could take and forcing myself to move my bed and pump at 2 AM to keep my supply going. My struggle to sleep was heightened by my roommate who got up to go to the bathroom on my side of the room every 45 minutes and was constantly, constantly complaining about her situation. More than once as she passed through my side of the room she made comments about the fact that I was allowed to eat (by the way, I puked every day that I was there). The fact that I had just gotten a huge chunk of my leg removed was clearly no big deal to her. She was probably as terrible as the nurses who kept refusing me proper pain medication and almost as bad as the nausea.
I lived for the moments Lucas would come to spend time with me and for the time I would get to see my happy, sweet 7 month old who was clueless about the pain his mother was in. I lived in anticipation of going home to my kids. They were the light at the end of the tunnel.
They kept me there an extra day so that they could change my wound VAC. They told me that it would be painful but did not prepare me for how bad it would be. They gave me an extra shot of something and some Ativan; the Ativan made my head foggy and my lips loose. Apparently I asked if my neighbor had left while she was still in the room because I really didn’t need her listening to what was about to happen…
There are no words for the pain I felt during that first VAC change. If you’ve watched a war movie and seen a man get his leg blown off? That’s really the closest I can get to describing the mind-numbing, searing fire of pure agony. The way that the VAC works is that it puts negative pressure on the wound while removing excess fluid from the wound. Because I had a hole in my leg, the sponge of the VAC was placed inside the hole rather than on top of a surface. To change the sponge, you have to turn off the machine which first removes all the pressure on the wound which caused a first wave of pain. I gritted my teeth and squeezed Lucas’ hand as hard as I could. Peeling the tape off caused full body shakes and I could not fight the tears from pouring down my face. But as soon as they touched the sponge my whole world was pain, it felt like someone was stabbing me with a huge burning knife. I screamed.
I would rather push out another 15 babies than experience that again.
Lucas has a stomach of steel and took this picture during that first VAC change.
I went home thinking I’d be able to hobble around on my own (false) and that it would be less painful as time passed (also false). I had two VAC changes before my second surgery, both of which were awful…
At my follow up appointment my oncologist told me what I had expected, but had hoped would not be the case: the radiation had damaged my tissue too much and no new tissue was growing. I’d have to have plastic surgery. He told me it would be 2-4 weeks that I’d have the wound VAC because my plastic surgeon would need time to schedule me in…
I had an appointment to meet with the plastic surgeon on September 19th. And man, I did not expect what was coming then…
Happy Six Months Baby B! You are the chunkiest chunk of love that God has given your dad and I, and I wouldn’t have it any other way. You’re 3x bigger than you were when you were born. And while that makes me a teeny bit sad because you’re getting big so fast, I’ll never take a chubby baby for granted.
Six months later I’ve given a lot of thought to Blaise’s birth story and why it was so difficult for me to write it.
Expectation, comparison and judgment were the key mental blocks I had, and what kept me from accepting the circumstances surrounding Blaise’s birth. Both comparison to my other births as well as to other women’s birth stories, and the judgments that society has of certain aspects of birth. Quite frankly; having cancer has changed my perspective so much and really, I am just SO grateful to have a healthy baby.
I think that there is a lot of judgment in motherhood, especially on social media, that has played a part in how I felt about this birth. I felt like a failure because my birth wasn’t what I wanted or expected. The fact: no matter how it happened, I brought new life into the world. I carried him in my womb for 39 weeks. How is that a failure? In Spanish, to give birth is “dar a Luz,” which literally translated is actually to “give a light.” That’s kind of amazing, and true: every child is a light brought into this world for a purpose.
But for weeks I felt like my birth was a failure and that I wanted a do-over. I kept thinking about how I could have changed it or what I could have done to change it, which is pretty ridiculous because really it is what it is and the idea of a multiverse won’t do me any good. Let me give you some backstory here.
Mathias’ birth was a pushing marathon; I pushed for four hours and because he had pooped in his bag and because I was bleeding a lot, I didn’t get to hold him right away. My heart goes out to all of the mothers whose babies get rushed to the NICU and can’t hold them for days, because even a few hours was awful for me. His birth was traumatic, and there were several distinct thoughts I had during his birth, including: “I’m never having any more kids,” “I feel like I’m dying” and “I want a c-section.” I pushed for so long because I refused to get an episiotomy, and my midwife told me I didn’t need one and we could get him out without needing to do it. This plays an important role in my birthing psychology.
Livia’s birth was the opposite of Mathias’. I was induced at 39+2 because I was already 5 cm and fully effaced and my sister in law was in town to babysit only until the end of the weekend. After the traumatic birth I had, I wanted as much control over Liv’s birth as possible, meaning: my midwife and my husband present and not having to worry about Mathias during that time. They started me on a slow drip of pitocin which didn’t really help my contractions progress, but once they broke my water I dilated the rest of the way and pushed Livia out in 45 minutes. My labor was fast and furious; for whatever reason my epidural didn’t kick in and I experienced the ring of fire. But I pushed four times and pulled her out onto my chest, and laid and nursed her successfully. It was everything I had wanted; to pull her out on my own terms, to have a hungry baby who had the right instincts to nurse, to not tear at all in delivery. She was my redemption birth.
So after two polar opposite births, my expectations were high. I expected to fly through labor again, to not tear, to have that beautiful moment of reaching down and retrieving my baby from my womb and placing him on my victorious body. I had all of the signs that it would be a fast and easy delivery; I had been contracting my whole third trimester and was four centimeters dilated at my 38 week appointment. A few days before he was born, the ultrasound technician measured Blaise around 6 and a half pounds. No sweat.
The evening of February 22nd I knew that labor was imminent. First – Lucas and I were fighting, which is the perfect time to go into labor (#sarcasm). Second – every 30 minutes or so I would have a super painful contraction and had to go to the bathroom. This continues through the night, and I kept going back to bed expecting to wake up in full-blown labor. Instead, I woke up to a steady stream of contractions increasingly close together, but no more painful. I was 39 weeks exactly.
Lucas had to go downtown to work a huge Home Show, and told me that either we go to the hospital or that I could call him whenever I thought I was close to having the baby and we’d rush to the hospital again. Not wanting to deal with my kids while having bothersome contractions and afraid of going into labor alone or at home (no offense to home birthers – but having the possibility of another special needs baby it is not a responsible option for me or for my child) I chose to go in, despite my pain level not being very high. I even told Lucas to stop at the gas station so he could get himself snacks.
When they checked me I was 6 cm dilated and contracting 3-4 minutes apart. Should be no time at all, they said. So I sat on a yoga ball and chatted with my husband for an hour, two hours, with no chance at all. Then my midwife arrived and asked me if I’d like to just break my water to “get the show on the road.” My midwife, Anna, has delivered all three of my babies and I’m so blessed to have had her on my team. I know a lot of women don’t even get their OB to deliver once. But Anna is as much a doula as a midwife and I called her cell when I decided to go into the hospital. She’s the best. She remembered that with Livia all it took was for my water to break to fly into labor. So I said let’s do it.
My water broke in a huge gush that continued to spill out for several minutes after I thought it was over. At 7 centimeters, my midwife suggested to get an epidural before the pain was too high for me to sit through. I hesitated; Lucas looked at me and asked if I wanted to try to do it naturally. I said nah let’s just get this over with – and waited for the epidural.
It took nearly 45 minutes to get my epidural because of some missing equipment, and in that time I hadn’t progressed at all. It was just taking SO LONG.
Once the epidural was placed, the nurse assigned to me asked me if I’d like to do some spinning babies techniques to try and help Blaise move along. I said yes, and so for an hour I rotated from side to side, peanut between my legs, stretching and trying to get this baby (who for so long seemed like he wanted to come out early) to finish the job. As a baby moves down towards the birth canal, they kind of nose-dive from your front to back. Blaise seemed determine to stay in the front and push down on the wrong place.
During this time, things started to get increasingly more painful. I’m not talking about pressure – I’m talking about searing, intense pain, and contractions that made my eyes water. On multiple occasions Lucas told me to hit the epidural button to get more juice; I ignored him the first few times and succumbed one or two more times. Because my epidural was so dense with Mathias I couldn’t feel a damn thing and I didn’t want that to happen again; so I try to take it easy with the anesthesia. My ideal epidural: one that takes the edge off, but isn’t so thick that I can’t tell what’s going on with my body. It was at ten centimeters that Lucas asked if he could press the button for me, and I succumbed through tears.
So epidurals work like this: the anesthesiologist places a catheter through the needle into your back. The needle is taken out, but the catheter stays in place to provide more medicine as you need it. It’s not like an IV drip; it’s controlled by a machine and you can hit a button to inject more anesthesia as you need it. It was over two hours from the time the epidural was first connected to when I needed to start pushing, and since I had a walking epidural the whole time (total control of my legs) I didn’t realize what had happened; I just thought that the pain was getting worse. In reality: the wire that connected to the machine had disconnected and I hadn’t gotten any epidural juice since my first injection, which explained the intense amount of pain I had felt as Blaise moved down into the birth canal.
The anesthesiologist was called into the room and after the machine was back in order he told me that I could hit the button and get more anesthesia, but that it might not kick in until after I had the baby. I didn’t care. I pressed it anyway, hoping for some amount of relief.
My midwife got her gloves on and we got ready for me to push. I pushed twice and she told me –
“You’re a great pusher. One more push and his head will be out.”
His head was out in the next push.
There was a variety of exclamations and I was told to push one more time to get the rest of his body out. I pushed. Once, twice, for longer than I pushed to get his head out. I pushed as hard as I could and nothing was changing. The sounds around me changed from excitement to an anxious cacophony as Anna attempted to pull the baby out while I pushed. Lucas’ face was concerned as urged me to push faster and that the baby’s face was turning blue. The baby hadn’t cried. NICU had arrived in the room, ready for the worst. All this in what felt like seconds.
“Faith, she’s cutting you, she has to cut you -” Lucas stammered, wide eyed, torn between watching me and watching what was going on. “She cut you.”
The baby gave a weak cry and was passed immediately to the NICU team. They had to check to see if they had broken anything. He had gotten stuck at his shoulders, Lucas explained to me. There was nothing I could do, he was really that stuck. He was really big. Over 8 pounds! Bigger than my previous babies, a week ahead of schedule. And he was ok.
I laid back, exhausted, upset that I couldn’t hold my baby. Lucas checked his toes and said they were normal; 93% of children with Smith Lemli Opitz Syndrome have second and third conjoined toes (it was the key to discovering that Mathias had SLOS) and since we don’t do genetic testing in utero this is the closest way to get an immediate answer. Sidebar: for those who are wondering, there’s only one way to know if the baby has SLOS in utero, which is an amniocentesis. Amnios are done after 20 weeks but there are some risks associated with it and according to Mathias’ geneticist the results are inconclusive for SLOS babies. To be completely honest: it doesn’t matter to me. We’re having the babies we have regardless of their genetic makeup. Liv and Blaise were both tested via cord blood testing after they were born, and they are both carriers (like myself and Lucas). But I knew right away with both of them that they didn’t have SLOS because they were able to latch and were obviously hungry from the moment they were put on my chest.
I told the team too late to not wipe Blaise down, my mind focused on my midwife stitching me up. Lucas told me I had a full episiotomy. Emotionally destroyed, I asked Anna how many stitches I needed. Her answer: “a lot.”
We named him faster than either of our other kids. “He has to be Blaise.” Lucas said. “He got stuck at his neck.”
We had a few names that we’d tossed around for a while, but Blaise and Liam were our top two. St. Blaise is the patron saint of the throat and it was too appropriate.
When they handed me my new baby he nursed right away. My mind drifted between the present situation and the fact that I had failed. That’s how I saw my birth. A failure. A failure because it took so long; a failure because it didn’t go according to plan; a failure because I had an episiotomy. The reason I pushed for four hours with Mathias, thrown out the window. My previous two births had left me with a total of one stitch. Now – one long scar, where no woman should have to have one.
I couldn’t, wouldn’t accept it. I kept replaying the day in my head, telling myself that if I had gone in later, or waited longer, or gotten more exercise, maybe this wouldn’t have happened the way it had.
I had totally different expectations. I thought I would have a fast labor, with minimal pushing and no tearing because that’s how Livia was (and frankly, that’s how Mathias was too, minus the four hours of pushing). But nope. That wasn’t the case.
I was so upset about it and I think I needed my body to fully heal before I could accept it. Healing was awful, and it was by far my worst recovery. And in my obsession with my failure – which was completely out of my control and totally necessary, as my husband and my midwife repeatedly assured me – I lost focus on the good and how happy I should have been to have a healthy, hungry baby.
Because at the end of the day, that’s what matters, right? That my baby isn’t just healthy, but thriving. Before Mathias, I took the health of my children for granted. Before cancer, I took my own health for granted. It is not guaranteed. It is not something to take for granted. So today that is what I am so grateful for: that this baby was born healthy and full of life.
Blaise is my happiest and easiest baby. He is constantly being shown love by both of his siblings – something that I didn’t imagine was possible. Mathias ignored Livia for the majority of her infancy but he has grown so much since then and he shows Blaise affection at least five times a day. Livia is a little mamacita whose first word every morning is “Blaise?” when I go to take her out of her crib. The amount of love that I felt from my toddlers when they met their baby brother far exceeds anything I’ve ever felt from them before. It was a magical moment and I’m so grateful that Allison Wolf was there to capture all of those first moments with them less than 24 hours after Blaise was born!
As I write this, I am well into week 4 of radiation. I have seven sessions left, which seems like nothing. The end is in sight!
It has been a roller coaster of emotions. Exhaustion. Gratitude. Frustration. Sadness. Loneliness. And sometimes – on a good day – acceptance and peace and hope.
When I was diagnosed with sarcoma my surgical oncologist told me that this type of cancer is very rare, very aggressive and very resistant to treatment. I can honestly say that I believe that my tumor has shrunk during this time of radiation and I truly believe that it has been so effected because of the myriad of prayers that has been continuously poured out for me across the globe. It has been a tremendous thing for me to witness – literally thousands of people praying for me, most of whom I have never met in person. It’s when I reflect on this that I am overwhelmed with gratitude and hope.
The whole point of radiation is to kill the cancer in the tumor as much as possible so that the surgery is easier and there’s a higher possibility of getting all the cancer out at once. If it shrinks, that’s a huge positive that no one was expecting. Of course some part of me is hoping for a miracle despite the improbability. A tiny voice has told me on more than one occasion that so many people are praying, maybe it’s possible…
But that, really, isn’t the point of prayer. I’m praying for acceptance of my situation whatever it may be. I went into this knowing a few facts that were hard to accept. That after surgery I won’t be considered “cancer free” by my oncology team until I’m 10 years out. My chance of sarcoma appearing somewhere else is 20% – and that’s a high number for me to think about. The fact that the cancer was still localized after having first noticed this lump two years ago is very unusual, and that the sarcoma itself is high-grade (aka, more aggressive) gives me hope that maybe once I’m past surgery it won’t reappear.
Last week – week three – was hard for me. Honestly: I struggle to show weakness to others. I talked a little bit about this in one of my posts last week, but I’ll explain better here.
Without going into details, last week two different things happened with other radiation patients that made me feel the injustice of my situation. Everyone – everyone – is at least 30 years older than me, probably closer to 40+ if I’m being honest. Everyone comes with their spouse and their grown up children and I imagine that they don’t have jobs and can go home and rest or do whatever they want after radiation is over. And here I am, with my little nursling who just this week turned 5 months old, my stroller, my diaper bag, my phone volume on high in case my sitter calls me about the two tornados – ahem, toddlers – at home. I have been told by all of the faculty (doctors, nurses, social worker) that I need to take time for myself but I feel guilty because I have a husband who works his butt off for us and three very little children who need me. Sickness is part of old age and part of the process of walking towards death. As I put it bluntly in my frustrated vent to my husband – old people are supposed to get sick. I am 27 years old. Not even 30. Not even close to “halfway” through my life, and I’m in the same situation as them except my situation is harder because I’m not in a place where I can spend all day doing what I want to do.
This attitude rocked me last week and made my life a lot harder. I’m sure that getting angry is part of this whole process, but in that moment I was like – this is not fair, I don’t understand why this is happening. I let other people who are also suffering get under my skin with their comments instead of letting go and letting God. I don’t understand the plan of God but I do believe there IS a plan.
Week four has been very exhausting. My whole body is tired. My radiation site is red and puffy and irritated because we are killing that dang thing and killing some healthy cells in the process. I am nervous about what the next few weeks will bring. Once I’m done with radiation we will redo my scans (MRI, CT), see what progress has been made and make a game plan for surgery at the beginning of September. If all goes well, then the best case scenario is that I’ll go in for scans every 3 months for the next 3 years and then twice a year until I hit the 10 year mark.
Pray for me, that I don’t let the little things get me down and that I remember all of the good things that have happened to me in my life, and in this time! I’m almost at the end of the first stage of this journey.
I’d love to answer questions in another post – so feel free to send me any you may have!
A little over a month ago I went to a general surgeon to take care of what I thought was a lipoma in my leg.
I’ve had it for two years and in that time it has grown from a tiny barely there lump to several inch oval. In the fall I started to get concerned about it because it became dark and I knew it was noticeably larger and uncomfortable if I put any pressure on it, but my dad has lipomas and multiple doctors told me that they were genetic. When I finally saw the surgeon in April she made me get an ultrasound and an MRI and told me that it was a tumor.
She referred me to a surgical oncologist who had a busy schedule so I waited four weeks for my appointment. When I saw him, he told me he’d be shocked if it was cancerous. I had the biopsy last Wednesday and this morning I got the call….
The first words out of his mouth were “I’m so sorry…I’m genuinely shocked that this is a lot more serious than I thought.”
The lump that has innocuously grown slowly over the past two years is a sarcoma.
Right now, this is our course of action: check to make sure that the cancer hasn’t spread to my blood, and then do radiation 5 days a week for five weeks straight. Then surgery.
When I received this news this morning I didn’t know how to respond or what to think, and I still don’t…my normal response is to joke when I’m put in a serious situation 🙈 but I’m asking for your prayers to help me to stay positive and strong 💪🏼 and that this cancer is located in the tumor only.
I have already received so much support and so many prayers since I made this public. Thank you so much, from the depths of my heart, for all of it. I will be making some phone calls tomorrow to get a second opinion about treatment options.
It’s been a while since I posted a recipe on here – and since National Donut Day was last week I’ve had donuts on my mind!
There are a few artisanal donut shops in Boston (namely, Blackbird Doughnuts and Union Square Donuts) and both have vegan options. I’d probably buy more donuts if they weren’t $3+ per donut….when I can make 6 at home for that price.
I adapted this recipe from Baker By Nature, substituting coconut milk for milk and vegan butter for butter!
Pro tip: use a piping bag or a gallon bag with a corner shipped off for easy donut pan filling.
I would definitely make these again! They were fast and easy and only made 6 donuts … Livia and I devoured them on our own.