Stillness in the Chaos

Two weeks ago on Tuesday evening, we made an impromptu decision that Terry would move back home the next day. It was a difficult decision, as we weren’t planning on him moving home for another two weeks, but our kiddos needed their Daddy. Terry spent the evening packing up the majority of our stuff to go back home- including our bed- and started to move in the morning. During the move, we learned that there was a Covid exposure thus we had to quickly make a new plan. Terry would continue to move home with the kids, and my parents would move back to their house where I was going to continue to stay, but they would quarantine in their bedroom. For one week we all all stayed quarantined in our rooms, only to leave to go to the kitchen masked. My parents continued to test for Covid daily, with the expectation that they would leave if they tested positive. It was a hard week, but luckily we all made it thru without anyone testing positive for Covid. 

Unfortunately, Terry and the kids were not so lucky. The second night that Terry was at home, Kanan would not sleep without being held.  By Friday, he spiked a fever thus requiring Terry to take him into the pediatrician’s office. Due to Kanan’s kidney issues, each time Kanan spikes a low grade fever he has to be taken to either the pediatrician office or the Emergency Room to rule out UTIs and other kidney issues. After an hour and a half of workup, we learned that Kanan had Covid. What followed was a week of no sleep and survival while adjusting to solo parenting and returning to work for Terry. To be honest, I am SO appreciative and thankful for him. If it was myself in that position, I most likely would have cried after the first night. He has handled the last two weeks with such grace and patience- and I know how lucky are family is. 

So the great news is…. I FINALY WAS ABLE TO SEE EMERY AND ROWAN. Okay, I stood on the front step with a mask on and they stayed in the car but it meant so much. It had been 10 weeks, since I saw their smiles and heard their voices in person. The best part, was the majority of the time was spent with them holding up any item they could find in the car in attempt to impress me— and I was impressed with just how much those two could fit in the third row (and scared at the same time) ! 

Since Terry has gone back home, it has been an adjustment for everyone. I felt that I lost my best friend that would take 2+ hour drives with me every day, but the kids gained their Daddy back- which is most important. Terry is adjusting well, but I know that he wishes at time he had an extra set of hands. Picking up Rowan from preschool, making it home in time before Emery gets off the bus, and getting to therapy three times a week while trying to keep a 6 month old happy is a lot for two parents to handle in the evening, not just one.

Both Rowan and Emery know that I am at Nana’s and Papa’s house- which they have done very well at accepting they are not allowed to visit inside. One afternoon Terry had to pick up paperwork from the porch, which lead to Rowan being very confused why the doctor’s car wasn’t at Nana and Papa’s house with Mommy.  I guess he automatically assumed that a doctor would be staying with us too. The best part was, that Terry just rolled with it and said the doctor must be visiting other patients right now. 

We have been discussing with the team about the possibility of me seeing the kids prior to Day 100. We have discussed the importance of both physical and mental health of seeing the family and how we can achieve it. If everyone is healthy and remains healthy, I may be able to see them periodically when my counts are well. Even if it is just a drive-by, I won’t take any of the time with them for granted and maybe I will even find some things to “impress” them with. 

We are going down, down, down. Down to Day -1, which for those who are following along means tomorrow is Stem Cell Day! Yesterday I was started full-blown on antibiotics, antifungals, antivirals and honestly it feels like anything anti you can think of. The hope is that these medications will be on board in case my body starts to have an infection. Some of these medications will be short-term over the next few months while others are needed over a year post transplant. 

Yesterday we were sent home with a pump to allow me to continue to receive medicine and fluids for 24 hours after receiving chemo. Although I would do it again in a heartbeat to avoid staying at the hospital, there is something to say about the extra thinking needed to lug around the backpack and falling asleep to the “humming” of the pump. Today, we were able to leave the pump at the clinic and go back to oral medicine for the time being. We officially have stepped up the nausea meds at home with the continued high-dose steroid and nausea meds in the clinic. We are hopeful that this will help relieve some of the ongoing nausea and what lies ahead. 

Even though today is an “off” day before tomorrow we had to be at the clinic at 7 am to receive meds, Covid testing, office visit and of course my lines were not working so Alteplase it was. It’s so important that my lines work tomorrow for stem cells because I still have so many bruises from last week when I was stuck 5 times for a CT scan. So hopefully this Alteplase will do its job and we will have no problems tomorrow! One can only wish for sure. 

It is crazy that tomorrow is already Day Zero. When we started the BMT process almost a month ago this all seemed so far away. I’m excited for the big day but know that this is still only the very beginning of this journey and that there are still many difficult days that lay ahead. Tomorrow is technically just one more day down but it is probably the biggest day of the process. 

Here’s to my re-birthday TOMORROW! 

We are rocking our way into Day -3. These past few days have been good, but exhausting. I have slept through chemo- which isn’t like me- and have even napped as soon as we walked into the door afterwards.  Yesterday morning I fell asleep in the recliner right after getting out of the shower, like who is this person? One day I may have even forgotten to get a picture with a sign during chemo because I fell asleep, but I promise I was here.  Even though the exhaustion is real, Terry and I try to go down to the long hallway in the clinic and get at least a mile in after chemo. 

Our current day activities involve going to the clinic in the morning, getting chemo and other supplementary vitamins/electrolytes, and heading home afterward. We are currently wearing masks in the car- something we have been instructed to do to try to prevent inhaling any dust that may be circulating from the AC or heater. My body can also think that there is something foreign and not know how to respond to it, so taking all necessary precautions is necessary.  So if you see two crazy people driving in the car with masks on, you now know why. 

As we start approaching Day 0, I am getting excited yet nervous. I know that the positive days are when your body starts experiencing the intense side effects as it also tries to engraft at the same. We can do everything we are supposed to do and still end up in the hospital because of neutropenic fever or other things outside of our control. Although, we are trying everything we can to prevent that because if I have to be admitted I will most likely be there until engraftment.  

Tomorrow is my last day of conditioning chemo- and it will be the chemo agent that has been known to cause horrible mouth sores that go down your esophagus and nausea/vomiting/diarrhea. There have been multiple studies that show chewing ice before the infusion, during, and at least 2 hours after the infusion could help lessen the side effects. For those who know me, they know that I have trained my whole life for this. As an adamant ice chewer- still apologize to those who sit near me at work- I was literally born for this. The nurse yesterday stated that some people just can’t chew ice for that long or a period- and I looked at her and said I’ll be a chipmunk if I have to.

Monday is considered a “rest day” from chemo before I get my stem cells back on Tuesday. However, on my rest day, I am scheduled to be at the clinic for 5 hours for other infusions and lab work, so I’m not sure how much resting will occur. But I guess it’s all in the eye of the beholder lol. 

I’ll try to update again before Day 0. If you messaged me or text me over the past few days, please know I have read most of them and truly do appreciate all the kind words. I am trying to also respond but to be honest my bed has taken top priority the last few days. In all honesty, the kind words, cards, and small gift packages have provided some joy when the house has become too quiet. We appreciate you all so much. 

We started the morning bright and early at 7 am. For the first time since it was placed, my tri-fusion line worked on the first try, allowing for an easy blood draw for labs. For those that are currently keeping track, we are now at ¼ or 25% that it has worked correctly since it was placed a week and a half ago. After labs were drawn, we waited for the oncologist to discuss the results and approve the start of Day -7. As we previously discussed the possibility of happening, my thyroid officially burnt out. Unfortunately, there is only a small likelihood that it will ever start producing correctly again, thus I will be on Levothyroxine for full replacement moving forward. Otherwise, my labs looked great, and I received the green light to begin chemo.

As the nurse walked in with the chemo bag, Terry received a call from our wonderful nanny, Paisley. I could immediately tell from Terry’s facial expressions, that something was wrong- very wrong. Calmly, Paisley told Terry that my mom had fallen on the concrete and hit her head. At that moment, she was being loaded into the ambulance to be transferred to the St Luke’s Trauma Center for evaluation. My heart literally sank, as I tried to hold back tears. I was connected to the IV and the waiting game began- waiting for any updates that we would receive. I honestly felt helpless in the little room and felt trapped for the first time. Luckily Terry was right beside me, remaining cool, calm, and collected. Like, if I can learn anything from this man that would be it.

Almost forty-five minutes later, my dad and sister made it to the plaza to be with my mom. My mom suffered a concussion, a broken nose in at least two spots, and her eyes go through phases of being swollen shut. To put it lightly, it is not a good situation. Luckily, she did not experience a brain bleed and was released this afternoon- although I am not sure to call it released, as she had to stay in a bed in the hallway in the ER due to no available emergency room beds. Well, that did not stop me from Facetiming her as she laid in the hallway. In Lisa fashion, the first thing mom did was apologize for falling and not being able to take care of the kids. I mean, the lady’s face is black and blue, and she is trying to apologize to me?

My mom is currently recovering at home. She has a long road ahead. We are so lucky that we have a support system that has stepped up when Terry and I feel helpless. Tina, Terry’s Mom, immediately jumped in her car without us asking and headed to KC to help care for the kids. Jordan, Kaitlyn’s husband, left work immediately to care for Kaitlyn’s three girls which I couldn’t be more thankful for as it allowed Kaitlyn to help with the kids this afternoon while my Dad cared for my Mom.

The kids are holding up as well as they possibly can in this situation. Tonight, while Facetiming Rowan, he told me the story of what happened to Nana as if he was present. Ironically, he was at preschool at the time of the incident, but he was certain not to leave out details about the ambulance, fire truck and even the police car in his story. And from my understanding, his story was surprisingly accurate from what I heard.

It wasn’t a day I could have imagined, but it was a reminder of how our family comes together when times get hard. As for me, I am doing okay. The main side effect of the drug I received today was supposed to make me feel drunk, unfortunately, I skipped that phase and went straight into the hungover phase. But we are ready for another day tomorrow—hopefully, it will just be a little less exciting than today.

Tomorrow is the official, official first day of Bone Marrow Transplant. We had to push it one day due to testing positive for rhinovirus last week, but the BMT team feels that we can move forward tomorrow based on my symptoms. Thus, tomorrow I will receive conditioning chemotherapy prior to receiving my stems cells back next week. I have never been so excited and scared at the same time. 

The chemo I will be receiving, called BEAM, contains 4 different chemo agents that will be given over 7 days. The high intensity of the chemo therapy kills the cancer cells but also kills all the other blood producing cells in the body.  Therefore your body is unable to make red and white blood cells or platelets.  This can be life threatening because your body has zero ability to fight off any infections, even the most minor one. For example, I must use an antimicrobial soap daily and I can’t even cut my finger nails due to risk of infection. Jokes on them… I tear my nails — just kidding.. kinda. 

During chemotherapy days it’s a countdown. We start at Day -7. Each day that I receive chemo this week, we will go down. So -7, -6,-5 and so on until we reach Day 0 and the we start counting up. Day 0 is the BIG day, as that is termed “re-birthday” and I will receive my stem cells back. This is the day that I will celebrate every year and it’s a HUGE deal. You better believe that I will be celebrating 2 birthdays every year, almost exactly one month apart. 

After I receive my stem cells back, we wait for engraftment. Engraftment is when the stem cells begin growing and making new white blood cells, red cells and platelets. This usually occurs between day 14-28 days after transplant. Once engraftment occurs, the patient usually slowly starts to feel better and their numbers start to rise. As time progresses, my immune system will begin to grow. It’s important to remember, my immune system will be weaker than a newborn baby, thus it will take time. Ironically, Kanan and I will both be receiving newborn immunizations within months of each other. Like mother, like son? 

After tomorrow, the side effects can begin at anytime. We have tried to mentally prepare for as much as possible, but we honestly don’t know how I will respond and what side effects I may experience. What we do know is that we will continue to take each day, one day at a time and will try to cherish the good moments during the ride. 

It has been exactly one week since I made a promise to Emery that I never imagined. It was something that’s been weighing heavily on my heart the past few months and something that unfortunately has not gotten easier with time. One week ago, I promised my five year old that her Mommy would come home while saying goodbye knowing that I couldn’t answer the question of how long we would be gone. 

It all started last Thursday after testing positive for rhinovirus (common cold) at the clinic. We knew how important staying well was in this journey, but we didn’t quite understand the magnitude of how quickly any changes in my health could affect the treatment plan. After testing positive for the virus, we discussed the possibility of chemo being delayed with the oncologist. It was at that moment, that Terry and I decided it was officially time to move out. For those with little kiddos, this time of the year is rough when it comes to sickness. I mean, I cannot remember a day over the last month that Emery or Rowan have not had a cough or runny nose. We were told by our Bone Marrow Transplant team at the beginning of this journey, that there would be a time that Terry and I would have to isolate- and we were officially there.

We had made the decision a few months ago, that Terry and I would move out of our home and switch houses with my parents. This would allow the kids to continue their normal routine and provide some stability and normalcy- or as much as possible in this unfortunate situation. We prepared the week before, showing the kids both the hospital and the clinic that Mommy would be “get better” at. We walked the halls of the hospital and clinic and showed them that it wasn’t a scary place. As much as we tried to prepare for this moment, there are no words to describe having to say goodbye to your children. 

As unfair as this has been for Terry and I, I am even more upset that Emery, Rowan, and Kanan’s lives have been turned upside down. We missed Thanksgiving yesterday and will miss Christmas and New Year’s. Luckily, children are resilient.  Even though we missed Thanksgiving, we are still thankful. We are thankful for our parents, who are changing their lives to be with our kids during this time. I am thankful for my sister who has stepped up as Aunt Kiki and who has spent so many hours already with the kiddos. I am thankful for modern technology allowing us to FaceTime to celebrate big moments, such as Rowan pooping in the big boy toilet, something he has been trying so hard to do for the past 6 months. And even though my Dad may despise it, I am thankful for our security cameras that allow me to check in at any time, especially during those times I am really missing them. 

If you see my Mom over the next few weeks, please tell her that she is doing a great job. Jumping from Nana and Papa roles to parenting roles with three kids under 5 is not easy. I’m sure she didn’t expect to spend her 60th birthday tomorrow, waking up in the night to take care of a newborn, but she is doing it without any complaints. If you see our kids, please give them all the extra love and hugs that you can, because honestly, they deserve it. 

I made a promise a week ago that I intend to keep. We may have a rough road ahead, but there isn’t anything that will keep us away from hugging our kids in the future. Until then, we will take this journey as a reminder of how much we have to be thankful for even in our darkest days. 

[PS- If you see our kids, they do NOT know that we are at my parent’s house. They are under the impression we are at the hospital, so they do not want to visit. We start full-blown isolation on Tuesday, only being able to leave the house for our daily clinic appointments. I will plan to post more of the timeline this weekend.] 

Is there anything better than collecting your stem cells the Monday before Thanksgiving? I mean looking forward to sweet potato casserole is one thing, but seeing your stem cells collect brings a whole another level of excitement. We have been anticipating this day for months, since the first time we discussed the process with my oncologist. After a previous discussion, we knew there would be a chance my body would have issues releasing stem cells, due to previous radiation seven years ago thus we were hopeful for good results.

After 4 days of shots, we arrived at the BMT Apheresis clinic early this morning at 6:30 for lab work to determine if we were able to proceed today. If they were too low, then we would head to the clinic tonight for additional shots and try again tomorrow. I knew this was a possibility, but in an attempt to keep our timeline for chemo, we needed it to be high enough. Unfortunately, what we didn’t know is that my newly placed trifusion line wouldn’t work and the possibility of not being able to move forward today was discussed before even drawing my labs. Luckily, after about 45 minutes, we were finally able to get my line to work and labs drawn… and now we waited for the results.

Sixty minutes later, we received the news… my counts were high enough for collection. Actually, my labs were the highest that the BMT clinic has ever seen! Our goal was for my WBC to be around 50ish and mine were 114. The second value, CD34 was supposed to be at least 0.02, and mine was 0.22. As happy as I was for high numbers, I was even more “happy” that there was a reason that I was experiencing crazy spine and neck pain the past four days as they have seen that pain usually correlates to how high your numbers are.

Now we have a six-hour day ahead of us collecting stem cells. Collection can take anywhere from 1 to 5 days with most individuals requiring 3 full days- just in time to enjoy that Thanksgiving sweet potato casserole.

I will continue to try to provide updates this week. We are currently still trying to figure out the reasoning behind the lymph nodes around my thyroid lighting up on my PET scan. It was determined that I have thyroiditis due to Pembro but the concern is that it would have also been that the lymphoma spread to that location as well. The biopsy that we did a week and a half ago didn’t result, thus I have a CT scan tomorrow evening (after collection) and a visit with the ENT surgeon on Wednesday. Unfortunately, until we can fully rule out lymphoma, I will not be able to start chemo and receive my stem cells back. Chemo is still on the calendar for next Monday, so we are hopeful that we can figure this out quickly.

The past week and a half has been anything but easy. Shortly after chemo, I spiked a fever along with sweats and chills. I was hopeful that I could “ride it out” at home, but the low grade fever still remained after alternating the Tylenol and ibuprofen. After a conversation with my nurse, and very low blood pressure the day prior in the clinic, I was sent to the Emergency Room for further workup.

The visit to the ER was a nightmare. My heart rate and blood pressure were both extremely high upon arrival. When I was finally taken back to a room, blood was needed for cultures which turned into a 30 minute event. For these particular cultures, two different blood collection sites were needed. They did not want to use my PICC line thus the nurse drew blood from my “good vein” but still needed another site for the second part. After looking unsuccessfully for five minutes, she told me she was going to get their specialist who had an ultrasound to find the second draw location. The “specialist” arrived with his ultrasound to find the vein for a “quick blood draw”. He promised that it would be a quick pinch as he found a spot on the inner part of my arm. Well, that quick blood draw lasted more than ten minutes. I remember looking at Terry while he was digging in my arm and tears rolling down my face. I finally said “I am done. We won’t be getting any more blood right now” and asked him to stop. I have never asked anyone to stop in regards to healthcare and pain, but at that moment I felt empowered. Afterward, it seemed as if he would have kept “trying” until he succeeded no matter the ramifications.

I spent 3 days in the hospital receiving IV antibiotics to treat sepsis. Luckily, my nurses on the oncology floors were wonderful. The brightest part of the stay was the attending oncology physician. Every time he came into the room, he would say with the most exciting voice you can imagine, “Your blood doctors are here!”. It may not seem like much, but we needed something, after all the TV in the room didn’t work for 12 hours due to a power outage. We needed some entertainment from something and the “blood doctor” provided it. Each day, I asked when I would be able to go home, and after a little persuasion on my part, I was able to convince the oncologist to release me Sunday night. See what the oncologist did not know was my husband was leaving out of town and there was no way that my kiddos wouldn’t have either their Mom or Dad at their Fall Parties with them. I was determined to leave the hospital one way or another.

Well even with my determination, I didn’t make it to all 3 events. I was able to attend Emery’s fall party and watch Rowan at his preschool parade before the exhaustion was too much. Thankfully my Mom and mother-in-law stepped in and decorated the car and handed out candy at Rowan’s trunk or treat in my absence. We honestly couldn’t have done last week without them.

Although I didn’t have chemo this past week, the exhaustion has remained along with new mouth sores. I have spent the majority of my days sleeping so that I can spend quality time with the family after school.

The additional sleep will be needed this week, as this week is a HUGE week. Tomorrow morning is my PET scan. This PET scan will show whether or not I am in complete remission. If I am in complete remission, we will move immediately into a Bone Marrow Transplant (BMT) workup. If it shows active cancer, then I will have to complete additional rounds of chemotherapy before the Bone Marrow Transplant. As scared as I am of the BMT, I need it to be the next step.

I should be walking through the doors of work today, my first day back from maternity leave. I should be taking care of “my” immunocompromised patients but instead, I am now the immunocompromised patient. I thought my only worries during maternity leave would be surviving the newborn phase not just surviving. There are days of Kanan’s early life, more than I care to admit, that Terry and I feel we are missing out on. We have spent numerous hours at doctor appointments, clinics, and infusion suites spending time that we will never be able to get back. And I think what hurts the deepest, is that this most likely will be our last newborn phase. Our last time we worry about how many wet diapers in 24 hours, how many ounces the child has eaten, and jumping out of bed at the sound of soft whimper– and it was a decision that cancer decided for us.

Shortly after I had given birth, we had strangers ask us both if we were now “done” having kids after learning he is our third. It’s like when you hit number three you would be considered crazy to have another. In my experience when a couple first gets married, everyone is overjoyed and is eager to know when there is going to be a baby in the picture. If you are lucky enough to get pregnant and have a child; the question, then becomes when are you going to have another and don’t you want them close in age? Once you have three children, the excitement fades and there becomes speculation that the family must be complete. 

To be honest, when I was asked the question I couldn’t give a definite answer. I had a rough pregnancy, full of highs and lows, and didn’t know if we could go through the mental strain again. Although asking a Mom who had just given birth, whether or not her family is complete can result in some crazy emotions. It was a question that I couldn’t answer and didn’t want to answer, especially to a stranger. 

What that stranger didn’t know is the internal struggle that Terry and I were dealing with and to be honest, still are. If we did indeed want another child to complete our family, it would no longer be our decision. They didn’t know that hours before we had met with a fertility specialist to discuss our options before beginning chemotherapy to prepare for a bone marrow transplant. They didn’t know we had decided not to proceed with harvesting my eggs due to the cost and finding the money in the short time frame. They didn’t know that I was dealing with an internal struggle. Feeling that I would be considered ungrateful for my amazing, wonderful children because I longed for the ability to have one more, especially when some women are unable to conceive. 

To sit in the fertility clinic again, seven years later, was emotional. I felt that my body failed me, again. I love my children, all three especially the crazy one (the crazy one changes from day to day), but I wasn’t ready to make a definite decision on whether our family was complete. 

But six weeks ago, the decision was made for us. In an attempt to find peace with this decision, I have been focusing on how grateful and blessed I am to be able to have children. Seven years ago, a frightened engaged couple trusted that what would come of their journey would be the road they were meant to take. They trusted in things they weren’t able to control and found peace with their decision. Below is an excerpt from my blog post written in August 2016 (yes, it still does exist and is a good reminder of how much we endured and achieved). As relevant as it was seven years ago, the words hold true today:

“So, today we decided not to go forward with fertility treatments. We are both ok with letting God take control going forward. We know there is a chance that we may not be able to have biological children and we may have to adopt, but we are ok with that. We will continue to pray that one day we will be able to provide a loving home for our four children, whether they be biological or not. “

We aren’t sure we will have that fourth child and that’s okay. Plans change, and people change. One thing that hasn’t changed is that we will provide a loving home for our children, whether they be biological or not.

As I type this post, I currently sit in the infusion suite receiving my third drug for today’s chemo treatment holding a blue bag. Unfortunately the blue bag isn’t there to hold my money, but instead in case I vomit- oh the joys of chemotherapy. With nausea hitting hard this round during the actual infusion, maybe it means the next few days will be smooth- one can only dream, right?

During my appointment this morning we talked about the next cycle of chemotherapy with the oncologist. It will be similar to the last three weeks with chemo on Wednesday for two weeks, a Neupogen shot on Thursday followed by a week off. After the week “off” I will get a PET scan to determine if the chemo has been working. Our goal is that I’m in complete “remission” with no signs of cancer on my scan. If it’s clear, then we move forward with the bone marrow team, but if it still shows active cancer then I will have to receive additional rounds of chemotherapy. If we have to add additional chemo, it means our time frame will lengthen and the ability to use my own stem cells will start to decrease. Hopefully, the odds will be in our favor! 

Although the stress and anxiety have started to creep in today, I am so grateful to have the last week to spend with the kiddos. For the first time since starting chemo, I finally felt well enough to get outside and enjoy the fresh air. We were able to go to the Pumpkin Patch over the weekend and even though we didn’t stay as long as we normally would, the kids still had a blast. Last night they were even able to talk us into eating dinner inside the pizza restaurant instead of taking it home. I can’t explain how much these moments I would have previously taken for granted mean to me, even if I have to nap for hours afterward. 

As time moves forward, I am getting one step closer to beating this, but also closer to a bone marrow transplant which will be hectic and unbelievably hard. We received a tentative schedule this morning at 8 and after a quick glance, I put it away as it made everything seem real. We know the chemo that I’m enduring now is “easy” compared to the road ahead over the next few months. But today I will choose to look at the present not the future– I’ll leave that for another day. 

Well, there isn’t any way to sugarcoat it but the last 5 days have been rough. Wednesday was my second chemotherapy infusion. The actual infusion went a lot better than the first, after adding five additional premeds to help prevent any reactions from occurring.  It was an all-day event arriving at 9 and finally making it home right before Emery got off the bus. By the time we were home, I was exhausted so I made my way upstairs in an attempt to “sleep off the chemo”. When I finally awoke, the nausea was intense, so I took some medicine and went back to bed hoping it would be better in the morning.  

On Thursday, I went in for my first Neupogen shot. After chit-chatting with the nurse while waiting for my observation time to be over, she became quickly concerned about my nausea. I took notice of her change in demeanor and told her I would eat after this appointment and call if I hadn’t eaten by tonight. Luckily, this sufficed and I quickly texted Terry that we needed to grab something on our way home from the clinic. I placed a to-go order on our drive home and within 20 minutes had a quesadilla in my lap. However, within 5 minutes I knew I made a mistake and settled on a sugar cookie instead.

Unfortunately, nausea, vomiting, and diarrhea have lasted a long time after this infusion. On Friday, I finally caved and asked for additional medicine to help with the nausea. I was getting sick upwards of 25 times a day and knew I needed something before the weekend. On Sunday, I was sick 6 times before I even attempted to eat breakfast and sick shortly after which seems to be a pattern. Today I feel a little better and I hope that the GI discomfort is finally resolving.

As the GI discomfort is slowly improving, it is making my body ache, bone pain, and neuropathy become more noticeable. I have been having difficulty moving due to my body aching in a way I have never felt before.  The tingling and burning sensation has started in my hands and fingers which makes it difficult for me to hold my phone, let alone Kanan without pain. As hard as this is, I am thankful for the time I feel good enough to sneak downstairs to be with the family.

Although my weekend was rough, the kids had a great time going to a local Pumpkin Patch with Nana, Grandma Tina, and (great) Aunt Amy. They could enjoy the beautiful weather and run out some extra energy. Terry and I were able to sit in silence for a little while after another crazy week, which was just what we needed.  We are so thankful to have the extra set(s) of hands and help and couldn’t do it without everyone. 

This week is a week off from chemo, and to be honest it couldn’t have come at a better time. My body is in need of rest and I wouldn’t be able to stomach (quite literally) chemo again this week. Although there is no chemo this week, we still have a few doctor appointments, labs, and dressing changes ahead of us.  Most importantly, we meet with a cardiologist who specializes in oncology patients. Our hope is that we get a better idea of my heart health after two cardio-toxic chemotherapies (seven years ago and now) plus the upcoming bone marrow transplant. In addition, we hope to learn that my heart is strong enough to undergo the bone marrow transplant which will be coming quicker than we ever imagined.

Thank you to everyone who has texted and called over the last week.  I am so blessed to have a wonderful family, friends, and work family who have made this process tolerable knowing that I have the support behind me. Besides continuing to rest this week, I am looking forward to spending some quality time with the family.  #OneDayAtATime #BattleForBecca

**Emery and Rowan helped make my chemo sign again this week and added some much needed extra letters at the bottom. They were thoughtful enough to add a “K” for Kanan.

And so, it begins… the 24-36 hour countdown to my next chemo session. This time has always been hard mentally, even seven years ago. It’s usually the time you feel the best physically, but mentally you know that tomorrow you will have to sit there and restart the process all over again.

One thing that I have already learned this time is that there is no guidebook doing this journey with kids- trust me if there was, I would have found it. We are trying our best to educate them with the correct terms, “chemotherapy, cancer, PICC line” instead of just saying “Mommy’s sick”. We want them to understand that cancer is a different sickness from day-to-day germs. Our goal is for them to not fear getting sick themselves and going to the doctor, but with this comes a lot, and I mean A LOT, of what, when, and especially why questions.

Most recently we have started to talk about mommy losing her hair. We showed them pictures of me without hair 7 years ago to help jumpstart the conversation. At first, it was difficult, and I could see the sadness in Emery’s eyes, but each day the conversation gets easier. Tonight, Emery drew a picture of me without hair and we giggled together. I know as we approach this next chemo, there is a good chance that I will lose my hair. I wouldn’t be honest with myself if I said I haven’t seen strands falling already. Even though we don’t speak of it, I can see the expression on Terry’s face when he helps me brush my hair as he sees it too. It’s such a hard process to lose something you can’t control, and I am honestly not ready for it.

This past week has been rough, especially for Terry. Our main support located in KC- tested positive for Covid on Sunday before the first treatment thus all our week plans changed instantly. Terry had to pick up all the slack, including picking the kids up from school and taking them to therapies, all while working full-time and keeping the house running with a newborn. Luckily my mother-in-law drove 12 hours round trip to come help for 45 hours which allowed Terry to get a little rest over the weekend. We honestly couldn’t have done this past week without meals and gift cards from everyone. We are so grateful for the support that we have received and that we receive every day. 

Tomorrow starts a new week, a new week for treatment and recovery. We are so hopeful that this week will be as smooth as possible, and that I will not experience the same side effects that I experienced last week- especially during the actual infusion. As I start my week, I hope your hump day is great and the rest of your week is smooth sailing as well!

The last 36 hours have been a blur. My first round of chemotherapy started yesterday at 9 a.m. Terry and I arrived at the clinic at 8:45, not necessarily ready for this new journey. Knowing that after today, I would be considered immunocompromised and our journey wouldn’t be over until after successfully completing the Bone Marrow Transplant, we stalled. Instead of hurrying in, we both decided that 5 more minutes of “feeling normal and healthy” was worth being late.   We had prepared as much as possible for this day, but nothing could prepare us for the road ahead.  It’s a road Terry and I have done once before, but this time seems so different. Maybe we aren’t as naïve this time around, or maybe we just have more to fight for, but this time is more difficult than the last.

Promptly at 9 a.m., I was called back to the infusion suite. I had never been through this door before yesterday. This side of the clinic seems forbidden, as only patients are allowed through the doors. Terry and I said our goodbyes and I walked through the doors for the first time.

Before starting chemotherapy, vitals and labs must be completed. The wait for them to result, which was only minutes, seemed like hours. Finally, the nurse stated that everything was good for chemotherapy today. What a blessing and a curse at the same time. I would have loved for 1 more week of normalcy, but I also know the sooner we start, the better the results will be.

Once we started the infusion, I felt empowered. I was sailing through the first two drugs without any issues. Once we hit the third chemo agent, I started to feel some warmth in my fingers. The warmth became so bothersome that I had to stop writing, but it was a side effect I could handle. Finally, we made it to the fourth and final drug. I was so excited to have only an hour before I could go home to my bed. It was a drug I had previously had, well the non-liposomal form, Doxorubicin. Doxorubicin has the nickname “Red Devil” not only for its color but also for the intense side effects that many individuals experience. The liposomal doxorubicin is known for having side effects during the first 10 minutes of the infusion in some patients, but since I had the regular Doxorubicin during ABVD seven years ago I was hopeful it would not be an issue.  

Prior to starting Doxorubicin, I had sent a text to Terry telling him that I was about ready to start my last drug and that he should go grab something to eat. We hadn’t really eaten breakfast prior, so I knew that he must have been hungry. He sent multiple text messages asking if I was sure, and I assured him that I was fine. Well within 8 minutes of sending the text and starting the medication, I had a reaction. Suddenly, I felt the worst, indescribable pain in my arms and lower back. It was so strong that I was not able to move my arms and tears uncontrollably started to fall. My nurse, who was watching me closely, ran over the moment she noticed a change in my skin tone and knew a reaction was occurring. They immediately stopped the infusion and provided adverse reaction meds. After 15 minutes, the pain had resolved, and we started the infusion again at a lower pace. This seemed to help with the pain, but unfortunately, the nausea hit full force.  Within minutes of feeling nauseous, my nurse came to me and said, “You aren’t smiling anymore, what is wrong?”. At this point, I literally laughed and thought to myself, have I been smiling through my other chemo drugs?  We paused the infusion for some nausea medicine and restarted. At this point, I wanted anything for the infusion to be completed. I was exhausted and had never been hit so hard by chemo during the actual infusion. I had always had side effects afterward, but I honestly felt that the “Red Devil” kicked me on my ass.

I have spent the last 24 hours sleeping and trying to sleep through the side effects as much as possible. Some hours are better than others, but I have wonderful home “nurses” taking care of me. To my surprise, Rowan has been the best caregiver holding my hand and talking to me about the weather. I am hopeful the next few days will bring rest and recovery.

Thank you everyone from the bottom of our hearts for the continued prayers and good vibes. We honestly couldn’t do it without our support system. We LOVE you all and so APPRECIATE each and every one of you.

#OneDayAtATime #BraveforBecca

The past week has been extremely difficult week mentally. We met with the Bone Marrow Team on Thursday to discuss our treatment plan. I am not sure what I expected during the visit but I feel like it was 100 times worse. Admittedly, I did not research (or google- thank goodness for that thing) Bone Marrow Transplant prior to the appointment so I had no prior knowledge.

During our appointment we discussed the two types of transplants, autologous and allogeneic. An autologous bone marrow transplant uses your own stem cells whereas an allogeneic must have donor stem cells.  Our goal is to be able to complete an autologous transplant as there is less chance your body rejects the transplant but this relies on a few things to line up. First, my body has to respond to chemotherapy, if it does not respond then the likelihood of using my own stem cells drastically decreases. Next, we must be able to get enough stem cells to harvest during the retrieval process. Usually this is not a major issue but due to my previous radiation to the pelvic region, the team is slightly concerned. Due to this, they believe they the amount of days it takes to retrieve enough stem cells may be more than normal which means more discomfort and pain.

To be honest the most difficult thing to hear at the appointment wasn’t about the process or prognosis, but instead about what would be required during the transplant. We assumed that I would be in the hospital, but there is better survival rates if completed outpatient with daily appointments (some 4-6 hours). I must  have a full time caregiver 24/7 who has no other responsibilities and very little contact with others thus requiring unpaid leave from work to be taken. Unfortunately the only person who is able to take FMLA is Terry  (plus, I don’t think he would let anyone else do it, he has a trust issue with my life lol ). But if Terry has to take care of me without contact who will take care of our babies?

This leaves us with a huge issue as we have 3 young children including a newborn who requires care. Terry asked the oncologist 3 times it an outpatient was best and each time the answer was the same, “Yes”. So now we face another difficult thing in front of us, we have to leave our kids in care of others. So for 37 days + (depending on how I respond)  WE will not be able to see our children.  We will not be able to hold them, give them a kiss when they fall down or check on them throughout the night per their personal requests. They will not be able to cuddle with Daddy and Mommy if they have a night terrors or tell us about their day at school. We will most likely miss a holiday or two, and the first holidays for Kanan. To be honest, we will miss 1/4 of his life up to this time period. That is a hard pill to shallow and to be honest, I still haven’t.

As hard as this is, and as we still figure out plans, we have to somewhat put this aside. I cannot go into chemo with this heaviness. Chemotherapy is half physical and half mental. Your body will begin to shut down if you are not in the right mindset. So starting today, Terry and I are going to be positive, maybe overly positive. It doesn’t mean I won’t cry, I mean I’m only 8 weeks postpartum but we are going to do our best at making the best of this whole situation.

We continue to ask for prayers and good vibes as we lean on others during this time. Our pride may be a little damaged, but we have come to the conclusion that we need others more than ever before.

To end on a POSITIVE note, when discussing the side effects of chemo with the NP today, alopecia was brought up. I told her luckily, I just cut off 7 inches to beat it to the punch this time. We ARE ready for this, at least my hair is. 🙂

#BattleForBecca #OneDayAtATime