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Back to Square 1
It has been a long time since I’ve written. A lot has happened. And in a lot of ways we are right back in the same place.
Let’s Catch Up Some Time
The last post I wrote about having a ton of side pain and dealing with pain meds. It turned out that pain was because of a met that was pressing on my spine. I was able to get that spot radiated, and the pain disappeared. Yay!
Since then I have also tried a couple of different chemo therapies. I tried Trodelvy for three cycles, one day a week for two weeks then one week off, for a total of nine weeks. It did not work. I switched to Enhertu for nine weeks, and that didn’t work either. The spot in my liver grew from something like 1.2 to 2.2 cm.
So it became time to look for clinical trials. I am very grateful to my dad who had done a ton of research ahead of time and even got me in touch with Dana Farber in Boston. I flew out there and to Moffit in Florida, which I was able to get an appointment with thanks to my previous trumpet professor Vince DiMartino!
Trial and Error
Interestingly, my cancer team at the time turned out to be no help. We met with the nurse practitioner who gave us the news about the Enhertu not working and seemed very concerned about the spot in my liver. She seemed to be saying that now was the time to look for clinical trials…and also that she would be no help looking for trials. She said it would be a “full time job.” I remember thinking, yeah, your full time job…
We ended up getting in touch with a new facility which has a clinical trial in town. We found out about it when we went to Boston. Why I had to fly across the country to find a trial near me, I do not understand. Anyway, the new oncologist showed us my scans and made things seem a lot less scary. He ordered a liver biopsy and said he would test for B7-H4 which is a protein my cancer would need to express in order to qualify for a different trial in OKC. He also said he would get in touch with Wash U in STL.
I started to get set up with pre-screening appointments for the trial in OKC. It is a 5 hour drive there. I made the trek on Friday for a brain MRI. Yesterday I was driving there again for an eye appointment. I was half an hour out when they gave me a call and said I had new brain mets which meant I was ineligible for the trial. I turned around and drove 4 and a half hours back home.
Back to Square 1
In the meantime my mets have started to spread and are causing me pain. I have a spot pressing on my SMA that is giving me a lot of tummy pain. I went to the ER for that and they told me to go home and take Tylenol. I went home and took morphine…until that ran out.
I had also gone back to the ER for what I felt like was some pretty sudden onset liver pain. I was worried, even though it was a week out from the liver biopsy. It turned out to be a new met in the very bottom part of my lung.
After scrambling and calling different doctors, different pharmacies, and my insurance, I finally got my pain meds refilled. The morphine helps a lot but it doesn’t get rid of the pain. So I am back where I was. In pain, struggling to get pain meds and poop, and wondering what to do next.
I have an appointment tomorrow with the new oncologist to talk about possibly radiating the mets in my brain so I might qualify for the trial in OKC. We will also be talking about the next steps treatment-wise. There are some standard of care therapies I can try, and we will also look at other clinical trials.
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Pain
I am having severe side pain. It has been ongoing for 5 months. Now I can’t sleep or eat.
Medical Attention
Getting pain meds at first was very difficult. I went to my doctor 4 times before they admitted they didn’t know what was wrong with me. 3 of those times I met with a male nurse practitioner, once with a woman I didn’t recognize, none of those times with my actual doctor. It was only by the third visit, the one with the woman, that she prescribed painkillers, the lowest dose of opioids they could put me on.
Then I went to my previous oncologist. I had just finished calling the pharmacy because my meds had run out, they said I had to call the doctor. I did that and they said to call the pharmacy. So I did that routine twice with no results. It was a relief then, when the oncologist prescribed Hydrocodone-Acetaminophen at the lowest dose.
For a while that worked. Relief! Now it is starting to subside. I messaged my new oncologist’s team. They listened to me an immediately put in a prescription for Oxycodone. I took some and felt great at first. I felt high, and I barely noticed any pain. Then the pain came back with a headache, nausea, and extreme fatigue. I was a wreck and a zombie and at one point lost peripheral vision in my right eye. So, after another 3 hour nap, I stopped taking them and went back to the old ones after a discussion about my options which included morphine. What a difference to feel listened to.
Opioids Oh No
I get it. There is a huge problem with opioid addiction. It is highly addictive and has become a massive problem. The crisis has even been declared a public health emergency.
I can understand, then, the hesitancy that comes with wanting to prescribe them to patients. In a lot of ways I am actually proud of the medical field for not just jumping the gun on prescribing these addictive substances.
On the other hand. What am I supposed to do when I need pain medication and can’t get any? I am not alone in going to the doctor and being told to just manage it with Tylenol. On top of that, doctors don’t typically listen to women, especially black women, especially when it comes to pain. So some work needs to be done to believe that women have pain and need medication, and also to not overprescribe opiods.
Side Effects May Include
I have been stopped up like crazy since taking meds. I was told to just take Miralax once a day with coffee by a nurse. I was doing that except when I was too naeuous to eat the mornings I took oxycodone. I also take fiber gummies and now a stool softener.
I get so blocked I don’t even feel like I need to poop. Then I balloon up. I get so bloated I start to look pregnant. It is hard to eat anything because I already feel full. My side hurts intensely and I can’t sleep. I go about 2 days like this.
Then all the sudden I get chills. My stomach starts to hurt. It’s time. I run to the squatty-potty. It hurts while I pass a lot of stool. I feel done and continue my morning routine for about 10 minutes until I have to go again. This happens around 4 times until I’ve left my body weight in the toilet, and then I slowly start feeling better. My constipation routine was very similar when I was pregnant.
Pain has now started to seep into every part of my life. I can’t sleep, so I am exhausted all day. I’m bloated, so I can’t eat. It is hard to carry and lift baby, and there does not seem to be a comfortable position to sit in. There is a chance I might not live too much longer, I don’t want to spend precious years unable to, well, live.
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These Tragic Stories Happen to Others…Not Me
So much has happened since I last wrote. My life has become completely upended. I feel like I am somehow both drowning and spinning in circles in the air as if caught in a tornado.
I’m not just a regular mom, I’m a sk8r mom
I started skateboarding a couple years ago. I wanted to as a kid, but was never brave enough. A coworker let me borrow their board (which I still have). It took me longer to skate to work than to walk.
Then I spent time being pregnant, getting cancer treatment, and then being a mom. It fell off my list. But I decided to get back into it several months ago. It was slow going again, and I ended up getting a pain in my side that I thought was a muscle cramp from how tense I was on the board.
Then it got worse. So I went to my primary care doctor. I saw the nurse practitioner instead, and he ordered a CT scan. They found an ovarian cyst and got an ultrasound which came back negative for cancer. Good, but it didn’t solve the pain. I went back 3 more times to the doctor (who I never saw any of those times). I also went to my OB. They said the pain was probably not from my cyst, but to talk to my oncologist.
Wait what?
It turns out when they did the abdominal CT, they also did a chest CT and found nodules, and did not contact my oncologist despite being in the same system. When I contacted my oncologist they said it looked like stage 4 breast cancer which had moved to my lungs. I asked how long I had and they said 1.5 years was the average prognosis.
I felt so much heartbreak I did not think I was even going to make it that long. The emotions that chewed me up, swallowed me, and digested me made me physically nauseous. I wanted to stop breathing and scream and lie in a puddle and punch somebody. It was like being in parallel universes at the same time and being aware of all of them.
My spouse and I wept so hard we physically shook. My family started a GoFundMe. The news reached out and did an interview. I went to more appointments. I was, and am a puppet on my own crumbling stage and I have to pull the strings to get me to do anything. Like last Friday when I went to get a PET scan and then couldn’t be around anyone for 6 hours after because I was radiated so I randomly drove to Iowa and back.
Vibe Check
This week has been a year long. They did a biopsy where they went down my throat with a tube under anesthesia. I got to cough up blood for a couple days, and the results came back normal lung tissue, meaning they did not get any part of the nodule. Monday we thought we had scheduled a surgery to take a part of my lung and biopsy that. It turned out to just be a consult. I was mad and confused as was my care team including my family.
Tuesday the election did not go the way I wanted to, and added to my plate was the stress of how I as a woman might be treated, but also how the LGBTQ2+ and BIPOC communities will be treated going forward. Wednesday they did another biopsy where they went through my back with a needle because they found a spot behind my lung after the PET scan.
Today we went to a different hospital for a second opinion. The experience was completely different. All of the staff were super sweet. The NP and doctor both sounded more optimistic, and said there was nothing life threatening happening yet, so I had more time to do more tests to get the exact right treatment for my type of cancer because they were disappointed in the testing that had been done so far. They also have access to clinical trials which the place I have been going to does not have access to.
It has been a confusing wall of information thrown at us. I have been scared, angry, sad, hopeful, accepting, confused, empowered, grateful and pissed. But now I am switching to a new doctor who will hopefully treat me better, and get the right treatment plan going so I can live as long as possible with metastatic breast cancer.
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Where Are You?
I have been contemplating my identity as a mother after cancer. Do I want to be an elder emo cool mom, a minimalist homestead mama? It only dawned on me recently why I was so concerned with this.
I walk a lonely road
Every parent goes through some sort of change in self-identification post-birth. I am not trying to be gender-exclusionary, but I feel like it is more significant for mothers. Especially mothers who breastfeed, which I did not. Researchers are increasingly studying the process of matrescence.
There is so much more pressure put on the image of what society calls “mother.” She has to be very demure, very mindful. For some reason, there is this push to give up any sort of self-image that is unique or doesn’t give off the image of someone who is nurturing.
I was already in contemplation of what genre of mother I wanted to be when I gave birth. Then everything got completely derailed. Until recently I was forced to be defined as a cancer patient and NICU mama. Despite being that person in my own way, such as putting the emo back in chemo, it still provided the outline of my day-to-day. Even when the baby came home, I still battled cancer. It was matrescence thrown in the dumpster and set on fire.
I’m okay, trust me
Now I’m in the survivor camp. And more than that, as of a week ago-ish, I don’t have to do treatment anymore. I am now contemplating my identity as a mother after cancer. I feel like I should feel relief. Shouldn’t I be jumping for joy? It should feel like I have a new lease on life and I can go and do anything.
That…is not how I feel. I feel exhausted trying to keep up with a baby who is speed crawling up the stairs, pushing up on everything, and thinks they can stand but they are just short of that. But beyond that, I feel…lost. I don’t know who I am anymore. I feel loved and loving to be sure. But I don’t know who I am supposed to be outside of Mama.
That’s not super surprising to me. As a millennial with three college degrees, I am used to pushing myself toward a goal past burnout. The big goal is now gone. I have been fighting for it for 18 months. Now, my brain is floundering for a new thing to focus on. I guess that is my self-image, or at least wrapped up in it.
So here I am it’s in my hands
So I guess that’s it. I am feeling like, what’s next? And I keep trying to tell myself there doesn’t have to be anything. This can just be it. Existence is enough.
I won’t or can’t hear it. Get chickens. Be the goth girl. Learn to skateboard. Give even more to work. Give less to work and more to motherhood despite already giving more than you have to motherhood. Pick up something new. Read more. Game more. Start a wardrobe of outfits you see on other people that you think look cute. Bake more. Get more plants. More, more, more. Why?
Can’t I just wear what’s in my closet that I feel like in that moment? Why can’t I consume a small amount of books as time allows? Why can’t I just exist?
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The Plan (this again?)
I am uniquely talented at stressing myself out. Doing chemo and being pregnant? Not stressful enough. Let’s add house buying to it. The stress of being a micro-premie parent not enough, lets contemplate solving the world’s problems.
The Sight
There is a fabulous ritual by Shiva Honey called The Sight. I have a book called the Devil’s Tome which lists it out, but I think it is also on her blog. It is one of the easier ones, but one that really helps me re-focus when I get overwhelmed.
The oversimplified summary is, you listen to some music, drink your favorite beverage, and think about a long term plan. Where do you want to be? Who do you want to be?
After ruminating on the subject, you write down your thoughts on a piece of paper. Then you take the time to reflect on what you have written, and you come up with a short term plan. My super simple long term plan…make a difference in the world.
A Vision
To be honest, my thoughts during this ritual were very scattered. I kept getting this image of who I used to think I wanted to be. The woman in this vision has long, curly, red hair that is unkempt in the cute way that takes hours to look like you did nothing. She is wearing a full length green skirt and a cotton blouse. Her child is on her hip and they are both covered in flour from baking with spices from the garden and eggs from the backyard chickens.
I also just do not feel like that person. I dreamt hard of this homestead wife life, and now it feels like I’d be shifting from 1st to 5th. Like the hard tack I would make to go basically back the way I came would knock me off the boat.
I feel so much more like the cool mom who drops her kids off covered in tattoos wearing a metal t-shirt. Which is wild, because if you would have asked me 4 years ago if I felt that way, I’d say you were out of your mind. And sometimes I doubt that is who I want to be, even though I’m living it now.
Making a Difference
I realized I was focusing a lot on what I wanted to look like, rather than what I want to do. As I started to think through things, the biggest feeling I had was that I wanted to help make a difference in the world around me. All of the other thoughts sort of fell into a word map around that idea.
I want to build a tight community. We are already doing a good job of looking after our neighbors, but I want to have a great garden and give away half of the yield, same with backyard chicken eggs. The best way I know how to make a difference is through work. I have already been doing so much, but I want to do even more if I can.
I also want to let my child lead the way. When they are older, I look forward to arts and crafts and playhouses. Their needs are foremost in my mind. I also know in order to pour energy into them, I need to relax and recharge. So I want to learn new things, get crafty, read, and game.
The Big PictureI am already doing a lot of this. I play with our child every day, and I expect that will continue and evolve. We look after our neighbors. I am doing a great job at work. I am hoping the new plan will help me focus on the big picture, helping me to not get to bogged down with the minutiae.
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And I Will Reach 500 Milestones
There is already so much to keep track of as parents. Are they pooping, are they eating enough, what did they just put in their mouth? On top of all of that you get to worry if they are developing at the “normal” rate.
And I will worry 500 times more
I am sure I would have regular worries about hitting milestones anyway. Because our little one came 3 months early, I feel extra worried there will be something “wrong” with them developmentally. This causes me to be extra focused on making sure they are hitting the right milestones.
So far, for the most part, so good. Some things are coming a bit later than the books and the posts and the tik toks and the other blogs say they will. Good thing all of the information out there is completely truthful and every experience is exactly the same…
When I worry about a milestone they are not hitting, suddenly it will click, and then I will wonder why I ever worried about it in the first place. Like babbling, they weren’t really making sounds, and I got worried they were never going to be able to speak. Now they love babbling and “talking” up a storm.
Just to be the baby to crawl 1000 miles
Now they are not crawling, and I am worried. They are developmentally around 9 months old. The milestone people say crawling comes between 8 and 10 months. And we are so close. But of course there are people online showing their babies crawling out of the womb (not really) and it doesn’t help.
My additional thoughts on the subject are twofold. First, the general worry would be that they would be immobile. That is clearly not going to be the case. Within the last week they pulled themselves to standing! So for our little one, they really just hate tummy time. Part of the worry is really frustration knowing if they push through and discover being able to get around, they will be so much happier.
The other thought is that it doesn’t feel fair to worry. So what if they had been mute? So what if they turn out to be immobile, or they don’t hit another milestone, or aren’t developmentally “normal?” I would love them anyway, and I don’t judge other babies who are neuro-spicy or spicy-abled as less than. It doesn’t feel fair to individuals with “disabilities” or who are neuro-“divergent” to worry about not hitting milestones.
To fall down at the researchers door
I am realizing I haven’t considered what I discovered about “milestones” before. When I was pregnant, thing seemed to be very different for me than what was written. And I learned so much about how flawed the research process is in that case, so why would this be different?
The issues with research during pregnancy was due to ethics. You can’t ask a bunch of pregnant people to drink 3 glasses of alcohol a night and see what happens to the baby. “Hey, we think deli meat might be basically poisonous to your fetus, wanna find out?” Doesn’t go over too well.
Because you can’t ethically control a study in this way, it all tends to be after the fact observational reporting, which is useful, but not flawless. The same is true with milestones, you can only observe when a baby starts crawling and then discover if they are more coordinated later in life than a baby you observed to crawl later. Then you have to collect a lot of that data, and see if there is some sort of average. But there are so many things that could correlate. Maybe babies who crawl sooner have more advantaged households who can also afford baby movement classes which was not taken into consideration during the study.
The point is that every baby is different, and even if they never crawl, their happiness, and the amount of love you give them is all that matters.
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Perfectionist Control-Freak
I have been going to therapy on and off since elementary school. It has made me feel like somewhat of an expert at the experience. Yet, that being said, not many (exept maybe my mother, love you <3) pointed out something that I wish had been glaringly obvious much earlier in my life, I am a perfectionist.
I have to be perfect and in control
My current therapist pointed out that I tend to need things to be perfect. Mind = blown. The fact that my perfectionist tendencies were so eye opening is probably hilarious to those that know me really well. I had heard it from my family and educators when I was pursuing a career in music. But I had dropped that. Hadn’t I relaxed since then? I’d say sorta, but not all that much as it turns out.
Upon realizing it during my last session, I began to acknowledge the pressure. I felt compelled to embody the perfect cancer patient, driving myself to move forward despite battling exhaustion and nausea post-treatment. Balancing work and household chores became a demand, despite the emotional toll of daily visits to the NICU and enduring profound turmoil. The tidy place needed to be a house, not an apartment, despite everyone telling me it was too much for both my spouse and myself to go through.
In this reflection, I grapple with the societal pressures on women to embody perfection. From maintaining appearances to juggling multiple roles seamlessly, the expectations are relentless. Despite the strain, there’s a glimmer of pride in my ability to manage it all. I find solace in my knack for organization and planning, effortlessly orchestrating various tasks and projects. Amidst the chaos, there’s a sense of hope that I can conquer it all, fueled by my talent for synthesizing information into structured plans.
The perfect plan to stay in control of no longer being a perfectionist control freak…
Well, I thought, I should probably start taking it easy on myself, but how? Also, we had talked previously in therapy about validating my needs. How could I both as for what I needed and give up the need for perfection? Wasn’t I giving up control of my needs if I gave up needing to control everything? I knew I could figure it out, so I made a list.
It has ten items on it ranging from self-awareness of when I feel like I need control and/or perfection to reminding myself that setting boundaries is an act of self-love. Each of the ten items has three tasks. Tasks include things like three affirmations, instructions to delegate tasks, reminders that imperfection is part of being human.
So yeah, the perfect plan to stay in control of taking a chill pill and also validating my needs. I’m not sure it is working. Chilling out initially improves my mood, but then I begin to freak out when I realize I haven’t meticulously planned every detail, becoming overwhelmed by even the smallest hint of clutter. But I still want to keep trying. If not because it would be imperfect to give up in the middle of the list I set for myself…
It doesn’t end here
I just started on this list to fix the fact that I am a perfectionist. Right now I am trying to delegate activities, though I forgot today. I am also reminding myself that uncertainty is part of the human experience, and perfectionism is counterproductive.
But what would I do if I didn’t have a plan after that? Starting with step 1, tear myself down. Step 2, build myself up. Step 3, profit. Kidding, step 3, fix the world. Small tasks as always.
Thank fuck I have therapy Friday. I would love to float through life experiencing things as they come, without dissecting and dissecting my entire story. It feels good to let go for a while, and then I get fearful of falling.
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Did You Know Babies Are A Lot of Work?/Why It Has Taken So Long To Update You/ Sorry This Post is So Damn Long…
Oof, I am so sorry dear readers! I cannot believe it has been since August 2023 that I last wrote. It is amazing how life will pass by you so quickly when you are so wrapped up in it. As my Dad, also known as Opa likes to say, “the days are long, but the weeks are short.”
The Final Countdown My Ass
I love that the last post was one where I thought I was almost cancer free. Whoo that would have been nice. Instead, the week after my last post my counts were too low to get treatment again, but if I remember right I threw a fit, they gave me a booster, and they gave me treatment the next day. Something along those lines anyway. For my final treatment I could barely walk. My knees were so messed up. My counts were way too low, and the oncologist said the risks outweighed the positives of having one more treatment. So, to my surprise, instead of treatment I got to ring the bell!
I think it ended up being 6 weeks later that I got what they called a partial mastectomy, which is another term for a lumpectomy. My mum and dad were very sweet and flew out to help me out and my mother-in-law agreed to come the week after my mum had left. They ended up removing a large tumor, almost 6cm, and some of the tissue around it. They took out one lymph node, and it came back negative for cancer. So they stitched me back up and were congratulatory that I did not have to remove my other lymph nodes. They scheduled me to meet with the radiation oncologist.
When I met with radiation, he said I should probably have another surgery to have the rest of my lymph nodes removed. I am to this day perplexed why they didn’t just do that in the first place. The radiation oncologist said the other lymph nodes looked big on the scans, and confirmed with the surgeon that, yes, I should probably have them removed. They called me to let me know this, and to tell me it was scheduled for two days after they had called me! My mum was incredible and turned right around and flew back two days after receiving the call, just a month after she had left. My mother-in-law was also amazing, and came back as well the week after that. After the first surgery I was doing ok, after this surgery I couldn’t even lift the baby…more on baby in a sec. It took me a few weeks until I had the strength to do that. And then I had to go to PT.
PT said that I had what they called cording. Basically, in the absence of the systems your body is used to, it creates sort of guitar strings, or cords, between your armpit and thumb. Those prevent you from fully being able to lift your arm. And the way to get rid of them…is to snap them. Yup. She helped snap 3 or 4 of them, and I did 3 or 4 on my own, one on accident while we were moving…more on that later in this post as well.
Something like a month after the second surgery, I started radiation. I went for 30 business days, for about 20 minutes a day, with a 20 minute drive there, and a 20 minute drive back. My symptoms from radiation were fatigue and basically a really bad sunburn which has since peeled. Now I have rung the bell again. My nurse navigator told me this meant she was no longer my nurse because instead of being in the navigating cancer category, I had been moved to the survivor category!
That doesn’t mean I am fully done. I still have 6 months of a chemotherapy pill to take from home. I still have follow up appointments with the surgeon, the oncologist, and the radiation oncologist. And I will have a yearly mammogram and be monitored closely to see if it will return. But for now I am a cancer survivor, and I can focus on being a mama to my beautiful baby.
The Baby
The baby is home! They came home over two weeks after my last post. They spent exactly 100 days in the NICU. I love that I am all excited about how they were taking full bottles in the NICU. A full bottle was something like 1.5 oz. Now they are drinking 8.5 oz with no problem, and they weigh 17.6 lbs!
They did end up coming home on oxygen. They were so close to not having to. There was just one feeding on the final night where they tested them in the NICU that they failed without oxygen. Man, that shit was a hassle. I knew it was going to be. Initially they had told us that they were hoping to get baby off of oxygen because it was a lot to deal with at home. Then when they learned we were coming home with oxygen they switched their tune to one of assurance that it wasn’t that bad. They lied. Our child was still hooked to wires, and we couldn’t carry them too far. We moved this heavy oxygen machine upstairs to sleep and downstairs during the day. Whenever we wanted to go for a walk or go to an appointment, we had to hook them to an external oxygen tank and take that with us along with a monitor that was showing their pulse and oxygen level based on a sensor wrapped around their foot. The sensor was awful as well, and because of a poor signal, the monitor would beep incessantly, even in the middle of the night, leading to very little sleep, on top of having a newborn in our home. It was enough to drive me absolutely mad.
Now we are off oxygen and living a normal baby life. It is a bit interesting when people ask how old they are. They are 8 months old now, but because they spent 3 months in the NICU, they are about 3 months behind developmentally. So think of a 5 month old. We are learning to push up all the way during tummy time, and to sit up without help. We also just started foods. We don’t really like carrots or oatmeal, which is all we have tried so far. We do really like throwing food across the kitchen.
The Kitchen
We got a house! We had stopped looking for a while with everything going on. Then we got a new realtor, and two months later we were home owners. It is a split level, 3 bedroom, 2 bathroom, and we love it. It has a very large back yard for the dogs to go crazy in, and later for River to follow suit. It has a nice entryway to hide our piles of shoes, and strollers, and car seats, and future backpacks. And that 3rd bedroom is perfect for guests.
We have hosted all of the parental units here. My brother and sister in law also visited us for the holidays. After all the craziness of the holidays and people visiting, and the stress of buying this new place and then moving all of our stuff, it is nice to just exist in a new space.
It is also so healing to be out of the old space. The old space held the memories of learning I had cancer, and calling 911 which led to baby being born. My spouse and some friends were very sweet and redecorated the bathroom and rearranged the bedroom to help shift the feeling. It really did help, but being in new space feels like a fresh start.
A Fresh Start
Here is to a brand new year. I am a cancer survivor. Baby is a NICU survivor. They eat and weigh more. They are hitting all their milestones. The smiles and giggles are heart-melting. My hair is growing back, my joint pain is 99% gone. I can do the things I have been struggling with because of fatigue and nausea, like the dishes, in a dishwasher, which we didn’t have before! I am excited to sink into a new normal. I get to figure out baby napping/feeding schedules, and lose my mind singing the same songs along with Miss Rachel, and I can start a garden, and get work done, and baby and I both get to continue to experience life.
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The Final Countdown
I haven’t posted recently because it has felt like we have been caught in an endless loop. We have been going to the NICU every day for 84 days. I have been doing chemo since the beginning of February. It has felt like it was never going to end…
Putting the Emo in Chemo
I have been putting the emo back in chemo. I have chemo treatment scheduled every Thursday. To keep things feeling lighter, and as sort of an inside joke with some of my friends, I have been dressing up. I put on a black wig with bangs swept over my eyes which are encircled in thick black eyeliner. I wear a black band tee and distressed, black, skinny jeans. My checkered vans adorn my feet, and I accessorize with different earrings, spiky wrist cuffs, studded belts, and lock chain necklaces. It helps me to focus on something other than the chemo.
For a sec there, it got really bad. One week I didn’t get treatment because I was very anemic, and they gave me a pint of blood instead. More recently I had severe, and very weird symptoms. I have had a blind spot in my vision three separate times, and occasionally my vision would get blurry in one eye. I also had extreme confusion. There were terrible toothaches, I had a sore stiff neck, and my stomach was upset. My knees also got super swollen and stiff and it was hard to stand up. Depression swallowed me. I thought it was because of the Gabapentin I had been prescribed for neuropathy, but I stopped taking it and the symptoms persisted. I did an MRI and learned it was, thankfully, not a brain tumor. This week I have been taking steroids and all of those symptoms went away. This means they were side effects of the Keytruda, which means I will no longer be taking it.
I have two chemo treatments left. That could be this Thursday and the next and then done. I also know I could become anemic again or something else could happen. Because I have been doing treatment for so long, and there have been other problems, it doesn’t feel real that the end is in sight. It’s like the first few moments of sunlight where you can barely tell the sun is going to come up. I know once it does it will be just as fast as watching the sunrise. After those two treatments I will have 30 days so my blood count can recover and the risk of infection drops, then it sounds like I will be able to do a lumpectomy. They will do an ultrasound to figure out if that is really the case. If it is, then it will be surgery followed by 4-6 weeks of radiation. And…if I am not doing Keytruda, I may be able to attempt relactation and try to breast feed, which I something I would really like to try and do!
Baby Hungy
Speaking of feeding., the little one has been taking full bottles! They weigh 6 lbs now. This morning we received great but shocking news. They are going to try to wean fully off of oxygen. This morning they turned it down to 0.1 liters, which is the lowest volume it can go without being off. If they do well with it, they will take them off of nasal cannula tonight or tomorrow. They did well with it while we were there this morning. Additionally, if they take 47ml for three feeds in a row out of a bottle, they will take out the NG tube. And if they take full bottles for 48 hours in a row, they get to come home! Initially they told us that would be as soon as Tuesday or Wednesday. Later they said Friday, because they need an MRI, echo, hearing test, and eye exam before discharge and all of that has to be scheduled.
Again, because we have been there for so long, it doesn’t feel real. It feels scary to be hopeful. It feels like something else is going to go wrong, and they are going to have to be there another month. And like that will just happen over and over to both of us, so that I am never done with treatment, and they will never come home. The rational part of my brain knows that is not true, and slowly I am starting to let myself believe that things are turning around.
It is here. It really is here. I really am almost done with treatment and cancer free. They really are coming home. It is really happening. No, really brain, it is.
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What plan?
If you read my earlier post, you know things did not go according to plan. It seems silly now that I was adamant I did not want to be induced at 37 weeks, and I told my care team to please wait until 39 weeks. Ha! Guess that is not an issue now. Here is how my postpartum recovery is going.
You’re free to go…again
I gave birth via emergency c-section. The hospital said I had to stay 3 nights total. But when they saw how well I was doing after just one night, they discharged me. I thought that was awesome! I got to do Kangaroo Care with my baby the night after they were born. And for a while, things were great. I mean I felt pain, but I had just had major abdominal surgery, I figured that was a normal part of postpartum recovery. And yeah I had been throwing up, but again, I had just been under anesthesia and my innards had been moved around, surely that was normal!
We had stayed two nights literally down the hall from our baby’s isolette. Then my spouse had booked us a room in the Ronald McDonald house for 3 nights. I spent two nights there, and the next day I felt super tired. That morning I had cheerios for breakfast and some apple juice. I did the exercises the physical therapist had given me. Then I tidied our room. But I kept nodding off. Suddenly I had to throw up again. I went running for the bathroom down the hall and made it just in time to almost be in front of the toilet. I let the Ronald McDonald front desk person know I had made a mess, and I called my OB. She said to go to the ER and have them rule out a bowel obstruction.
We went to the ER in the same hospital as the NICU. We waited for a very long time. Something about being there was like admitting to my body that things were not ok, and suddenly the pain got much worse. Eventually they got the results of the CAT scan and said I had something called ileus. My bowels had stopped moving! Apparently that is a normal part of the postpartum recovery process for a lot of people. They got me a room upstairs, and I had to stay two nights. They also discovered I was anemic and had to have two rounds of blood transfusions. I had low iron and had to have two rounds of iron transfusions. I also had a UTI with ecoli. So they gave me antibiotics. Eventually I was free to go. I still felt sore, but I figured that was normal!
And again…
Cue a week later. My bowels started to really hurt. I figured that was just gas pain. Then I noticed my incision had reopened and was leaking all over the place! I put a bandage on it, and I already had an appointment with the OB the next day, so I figured I would wait until then to do anything about it. She said it looked a little infected, but packed it with iodine soaked gauze, which hurt like crazy, and then said I could put a bandage on it if I wanted, but it was probably good to go.
It turns out that is a pretty normal way to deal with postpartum recovery if you had a c-section and the incision begins to open again. If it opened more, or if it were more infected, they might consider cutting out the infected parts and stitching it back up. Later that day I went out to see my spouse and friends play in a concert. When I went to the bathroom, I realized the wound was leaking everywhere! When we got home I put an extra bandage on it. By the morning it had soaked all the way through. I called my OB and she said I should go back to the ER to make sure the infection wasn’t dangerous. So, after a lot of tears, I went back to the same ER just one week after I had gone in the previous time.
I was literally in the same bed in the same hallway as before. They did another cat scan looking for how deep the infection was, and they found a small bowel obstruction. They decided I needed an NG tube. With no pain killers or sedation, they shoved a tube up my nose, down my throat, and into my stomach. I felt all of it. Then they began vacuuming out my stomach to relieve pressure on the obstruction. Eventually they moved me upstairs and I got to stay another two nights. They put me on strong antibiotics, and a different OB came in and packed the wound with the same style of gauze. After the first night my NG tube just fell out while I was using the bathroom. Because I had pooped, they did not put it back in. Eventually I was free to go again!
But for real, rest bitch!
When I look back on what was happening to my body and what I was doing, it is insane. I was puking up my meals and still trying to do exercises and walk down the hall to see the baby to get my daily walk in. I was falling asleep while trying to do things, and I pushed through until I puked again. My body was telling me STOP! And I didn’t listen. To be fair, I didn’t know to listen. How much pain are you supposed to be in during postpartum recovery? Is it normal to vomit frequently after giving birth? I don’t really know the answers, but take it as easy as you can.
Is that impossible in some cases? You betcha! Let’s say things had gone according to plan. At 39 weeks I would have given birth vaginally. I would be in postpartum recovery from that, and there would be a little one at home that I would have to attend to.
Yes, you might have a little one to look after every few hours. Yes, the doctor said you are free to go! But bitch, between feeding the little one and putting them back to bed, you better be in bed yourself. And yes, the USA has fucking awful healthcare, and terrible maternity leave. Find ways to rest at work. When you get home and the baby is fed, you better be resting like royalty making other people get things for you. That is true whether you had a c-section or a vaginal birth. Whether your baby was born at 22 weeks or 42. Your body needs to heal so you can look after your baby. Take it from someone who didn’t.