Stillness in the Chaos

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