Dear Cuties,
The first phase of my treatment began with 4 rounds of AC Chemo. This is a dose dense therapy wherein every two weeks I received 2 kinds of chemo. One of them is known as the ‘Red Devil’, and has a terrible reputation. Just writing this sends a fresh wave of nausea over me, but there are many things about this experience worth remembering so I’m going to do my best to record that here.
Chemo 1
I don’t know that there are really words to describe how I felt on the days leading up to this. A part of me stayed busy making sure I had everything I needed in preparation for the big day; comfy clothes, a blanket, a book, my iPad and computer, a chemo bag, etc. Another part of me moved through the motions like this was all still just pretend. My brain could not believe this was all really happening, and this all felt like I was calling someone’s bluff, and that I’d get there on the fateful day and nothing would happen. Either way, I did my best to eat well, and hydrate like crazy. Dad and I had learned how beneficial green tea was for cancer patients, so I had been diligently drinking cashew milk matcha lattes 2-3 times a day.
On the morning of, we got you kids all dressed and ready for school like any normal day. Shortly after you left we loaded up in the truck and headed off. Dad stopped by Bill Millers to grab me 2 breakfast tacos, as the nurses had strongly recommended I eat a filling breakfast to avoid getting sick from all the meds. Dad had to work that day, and it had already been arranged that grandma Blanca would accompany me for my first chemo session, so he dropped me off at the START center and headed to work. Grandma Blanca showed up shortly after with 2 Large cups of crushed ice from Sonic, since we had learned that chewing crushed ice during the chemo infusions helped minimize mouth sores. I put my lidocaine on over my port access, but we got seen early, so when it came time to access my port the lidocaine hadn’t kicked in fully. This was my first time having my port accessed, and it hurt, but all in all wasn’t as scary as I’d imagined.
I was filled with nerves that morning, and so thankful to have my mom there with me. The nurses were all very kind, and we got my premeds started right away. I have 2 premeds that are administered before the chemo itself for this phase; a potent, nasty anti-nausea med, and a strong steroid. While these are both administered through my port, the nausea med is so strong that somehow the ‘flavor’ comes out and overwhelms your sense of smell and taste. The best way I can describe it is like a terrible mix of cardboard and baby formula. I just gagged trying to write that. The steroids are next, and after a few minutes I can feel them entering my system, making me feel both a little drunk and jittery. Once those are finished, we move to the ‘Red Devil’. This chemo comes in 2 large syringes and true to its name, is dark red in color. The nurses have to administer this one manually, ‘pushing’ or injecting this into my port a little at a time while monitoring me for symptoms. My nurse for this on my first day was a very kind woman named Cyndi. She sat with us and asked me all kinds of questions about the family, wanting to know everyone’s names and our plans for the holidays. During this time, I am also supposed to be chewing on ice, so we filled the matcha latte with the crushed ice my mom had brought and I tried my best to answer her questions while also keeping my mouth full- no easy task! I will say that I regret drinking that matcha on chemo day, as it triggered an aversion to matcha that I cannot shake even now 2 months from my first chemo. Once that was done, I was administered my second chemo med via IV drip (still haven’t bothered to learn the name of that one), which takes just over an hour. I spend a good amount of this time chatting with grandma and a lovely patient who was sitting beside us, and going back and forth to the bathroom.
Once chemo was finished, we decided to grab something to eat and run a few errands before settling in at home. It was a strange feeling, being out and about after chemo, but the steroids had me feeling wired and we thought it best to eat while I still felt up to it. We decided to eat at a sandwich restaurant Grandma has been telling me about for years, Sandwich de Paris, and we had a really nice lunch together.
From there, we picked up a few last minute things we thought I’d need to get through the next few days, and then got home. During this time, Papa Mark had come by the house, and left us all dinner for the evening along with a small note that I later framed.
Grandma stayed with me all that afternoon, insisting that I lay down to rest before you kids got home. She watched over you until your dad got home that evening, and I went to bed feeling tired, wired, but utterly loved.
Chemo 2
This was a hard one upfront, emotionally. Chemo was set for December 26th, the day after Christmas. Because we knew the care I’d need after treatment, it was decided that the best thing would be for you littles to stay with Grandma Donna in the valley for that week. That meant leaving you all behind in the valley on Christmas Day. My heart struggled with this; I knew this season would shape things differently, but not having Christmas at home or even entirely together brought me to tears several times. Our family did an amazing job of stepping up and helping out, and for what it’s worth you guys all seemed just fine with this arrangement. We said our goodbyes as you headed out, excited to see a movie with all your cousins, and we got back home later that evening.
For this cycle, your Dad was there by my side. Cyndi was my nurse again, and we had a nice time catching up on the holidays. Dad had been gifted a metal puzzle that we hadn’t been able to solve, so we talked and laughed and worked on that during the session. Afterwards he took me to a coffeehouse I really like off Broadway, The Commonwealth Coffeehouse. I ordered a favorite plate of mine and a croissant to go. Just like the matcha, I haven’t been able to eat there since; even thinking of it now makes me feel squeamish. Chemo is weird in the way it shapes aversions for me, I wish I’d learned that lesson sooner.
We went home afterwards, and I basically napped in my recliner, watched a lot of TV, and ate when I could manage it over the next few days. I leaned much further into my meds to manage my symptoms, but they made me groggy and kept me glued to my recliner so it would all get very boring and monotonous. I had shaved my head before the first chemo session because the nurses had mentioned that it was easier, and that the hair kind of hurts when falling out if you don’t, and this cycle proved that to be true. My scalp was immediately tender and inflamed following the first chemo treatment, but now rubbing my head left me with a hand covered in tiny stubble from my follicles dying. This was a mildly painful, annoying phase, and I feel like I spent those first 2 days post chemo just rubbing my head and cleaning the hair off my hands constantly. I quickly learned that keeping my head shaved seemed to offer the most relief, and I’m guessing that by this point I’d lost about 60% of my hair.
Chemo 3
This was just month ago, and it’s already a little bit of a blur for me. Papa Mark took me to this one, and by now we seemed to understand the rhythm and routine of my care. I do remember that I forgot my lidocaine entirely and my port access hurt like hell, from that day on I always carry it in my purse. I also remember being very cold during treatment and my angel of a nurse (Cyndi again!) having a pocket hand warmer ready to share. I believe I tried fasting for this session, after learning about its benefits, but my plans got thrown for a loop. I tried making bone broth to prepare for this round, but my ratio of bones to chicken feet must have been off, or my stomach just wasn’t ready to take on the broth, because it gave me terrible stomach pains when I drank it that morning, and I was too nervous to try it again. Papa stayed with me through the day and we talked and talked as the time passed. He took Faith, Evelyn and Eben for sleepovers for the weekend, and Ylde stayed home with us. Again, a typical weekend of naps, low energy, and managing nausea.
This cycle was much harder, maybe not due to the chemo itself, but the bone shot I have to get afterwards. On Sundays I have to return to the START center to get a shot that is supposed to stimulate my bone marrow. It is a shot that they must slowly inject, and it burns the entire time. For whatever reason, I got extremely tired after the shot, and spent the rest of the day in bed. I felt like my body had been buried in sand, and it also felt like all the bones in my hands arms and elbows were broken. Grandma Donna came in to help that same day, planning to stay until Tuesday, but I could barely get out of bed to welcome her in.
When the other kids came home that night, I was lying in bed not asleep, but simply too exhausted to get up and greet everyone. I could hear everyone chatting and laughing through the door, and got very emotional. It felt like I was hearing life go on without me, and I admit that I felt like I hit a new low. Thankfully, I was able to call out for my mom, who came in and hugged me and offered comfort. I told her I wanted to see the kids so they came in one at a time and I was able to pull myself up into the sitting position to talk and hug and visit with them for a bit. Faith seemed to be the most emotional after her sleepover, you are often the one that misses us most, so we had extra hugs and cuddles. Dad and Grandma got you all ready for bedtime, and thankfully my energy was better the next day so that I could at least sit in the living room once you were home for a little bit after school before retreating back to the bedroom.
I’m so thankful grandma Donna was there to help, and she prepared her famous Noodle Casserole for all of us to enjoy. We had a nice morning running to Trader Joe’s and McDonald’s for her coffee before she headed back home Tuesday, leaving our fridge and hearts full.
Chemo 4
The final dance with the Red Devil! I was eager for this day to come as treatments had gotten progressively harder, and was in high spirits this morning. My dad came to pick me up early, and we decided to head to Academy to exchange the shoes he and Grandma Lizzy had gifted me for Christmas. We settled on a new pair that made me smile because they reminded me of shoes I had as a kid, and we headed to the START Center. My treatment on this day was in a different treatment room than before, so I missed seeing Cyndi, but was of course still treated so kindly by my new nurses. I was surprised to find that I’d developed an aversion to my anti-nausea meds; even with sucking on strong breath mints while the nurse administered the meds I struggled to get past its ‘taste’ and gagged several times. Once we got past that though, the rest of treatment went smoothly. I had been hydrating like crazy beforehand and also requested additional IV fluids this time around, and think it really helped my recovery.
Once treatment was done, Papa took me to Chipotle to pick up lunch. I fasted the night before and into the morning, and while I wanted to try to fast through the evening, my stomach had other plans and I figured it was best to eat while I had the appetite to do so. We sat and talked for awhile before the kids all got home, and this time Faith stayed at Papa Marks while the boys stayed with Grandma Blanca, leaving Evelyn home with me. We had a calm evening together waiting for Dad. I am happy to say that this was by far my bodies best response to treatment; I had decent energy, and little to no trembling through the weekend. I started to develop an aversion to my symptom relief meds, so I was thankful that I barely needed to touch them this time around. This was also the weekend of the ‘big freeze’ here in San Antonio; Evelyn got to go to her friends birthday party before the freeze set in and we stayed warm and inside Saturday night. Dad was thankfully able to pick up the rest of the kids and we were all home safe and snuggled up through Monday since school was cancelled. My bone shot got moved to Monday and since the roads were surprisingly clear, Schuyler drove me to that appointment. We had a nice time as always talking and joking to and from the START center, and even stopped to grab Summer Moon for him and Dad. I then spent the rest of the day in bed recovering from the shot, but mentally I was better prepared for that and all in all am really thankful that we closed the chapter on AC chemo in better sprits.
This was not an easy chapter by any means; I struggle with nausea and fatigue daily, I am bald and my face has aged at least 10 years in the last 2 months. I am slow to recover from minor injuries like broken cuticles or simple scrapes. I am dealing with hot flashes, an overly sensitive nose and body tremors, and I don’t have work to distract me or bring me the satisfaction of an income. I have slowed my life down drastically, and have had my fair share of low days.
But there are so many other things I don’t want to forget that happened during this time, too;
Schuyler shaved his head with me before my first treatment, and dad was our merry barber, having a little too much fun shaving our heads.
We got to celebrate Christmas with the Saenz family between chemo sessions; an unexpected and welcome surprise. Schuy even helped make tamales!
I got to attend a few field trips and eat lunch at school with you all one by one on my good days.
I started volunteering at the church and am getting to better know our church community.
I started my holistic therapy treatments to mitigate my chemo side effects and support my immune system.
We celebrated Dad’s Birthday quietly at home; it was just a few days after my second chemo and you kids helped me make Grandma Donna’s 3 layer dessert for him. You all also decorated cards for him, and helped me prepare our grazing table for dinner that night. It was a small and humble celebration but we all enjoyed it.
I started my mistletoe injections- this started off really rough; injecting myself took me hours the first few times, wherein I’d be crying, sweating and shaking, but I got through it! Eventually it became very empowering.
We got to enjoy kids losing their teeth, I got to give you all your family haircuts, and your Dad and I looked on in amusement as you all enjoyed weekend campouts in the living room following our movie nights.
We had delicious meals brought over from both my parents and my Tia Letty following treatment days; chicken soup, calabaza, soft chicken for tacos, fideo loco, even Papa Marks delicious banana bread. These dinners were so helpful and comforting. Our families pulled together and sent us funds to help cover the costs of my treatments, and also had toiletries and basic pantry supplies sent over as well. People were always checking in offering prayers, support and love.
While parts of AC chemo were hard, and other parts absolutely sucked, it is thankfully something we were mostly able to manage in the background of our busy family life as far as you kids were concerned. We were surrounded by blessings, and it’s my deepest prayer that this next phase be marked with more good health, strong support, and lots of love.
Sincerely,
Mom
