Tag: #OneDayAtATime

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.]