Stillness in the Chaos

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.