Stillness in the Chaos

Sometimes quiet can make people uneasy. In our case, it means we are doing good overall. There have not been many changes last week in regard to health. I now have weekly appointments instead of daily which means that we are moving in the right direction, but also means some days seem extra long.

One thing that has changed last week is that I am starting to notice a lot of brain fog. I will be talking and mid sentence forget what I was going to say. I also won’t remember if I have taken my medicine 30 minutes after, which makes me trying to be more independent difficult. Cue the pill organizer box in my next Target order- at least they are colorful. I know it’s somewhat normal to experience, but it’s still very frustrating. Luckily,  Terry is okay with my awkward smile instead of the end of the sentence.  

Oh the biggest news of all, we were able to see Kanan for the first time in over 50 days. Due to my counts being high enough this past week, I was given the okay to spend time with him as long as nobody else was sick. I worked up the moment that I would see Kanan in my head literally since the day I left that sweet boy.  To be honest, it wasn’t anything like I thought it was going to be and was harder than I imagined. As somewhat expected, Kanan didn’t remember us. I have tried to rewrite that sentence so many different ways to make it sound not so dramatic but in all honesty, it’s the truth. My happy boy, who supposedly never cries at home, cried hard every time I looked at him. And instantly the mom guilt and pain of our current situation all came flooding back. 

Luckily, Terry was able to calm Kanan and make him a little more comfortable and help with the tears.  It meant so much to watch Terry and Kanan bond after almost two months.  I, myself, am not able to hold Kanan but one day soon, I will be able to get all those cuddles.  Until it’s safe I will continue to watch these special moments  from afar. 

The hardest thing of all is that we weren’t able to see Emery and Rowan  due to them going to school with other kids and the germs. This literally broke my heart and I honestly felt guilty for seeing Kanan without them. Luckily, they had a fun day with Nana and Papa during this time and just thought Kanan went to “an appointment” for a few hours. I am hopeful that we will be able to have quality time soon and will continue to enjoy the FaceTime calls. 

Well, we have reached a monumental milestone… we have reached Day +30!! When we started at Day -7, this day seemed like so far in the future but we made it. We have officially “graduated” from daily clinic appointments and will be transitioning care to my primary oncologist over the next few weeks. For those worried that I will miss my BMT team, don’t worry I will be back soon to complete my full work up at Day 100 which will include another Bone Marrow Biopsy and a PET Scan. 

Before we start talking about Day 100, let’s first just celebrate making it to Day +30! Today, I will have my weekly appointment and lab draw to see where my numbers are.  My numbers during my last blood draw were improving but my ANC – one of the most important ones- still remains low and unchanged.  We were on the line where we could have done more growth stimulating shots, but decided to see what more time would allow my body to do on its own- so today’s numbers will be very telling. 

We also redrew my TSH, or thyroid stimulating hormone, and it has only worsened since the first draw. It currently sits at 56, with the normal value 0.35-5., so over 11 times normal. This means that my thyroid most likely has stopped working and is no longer producing hormones- leaving me with a VERY under active thyroid. We increased my meds again but we think some side effects, including fatigue could be related. We have a referral in with endocrinology and hopefully will meet with a specialist in the near future. 

Other exciting news is, I received my first vaccine, my flu shot, last week. Although this may not seem like a big thing to most, it means my body is strong enough for the vaccine and hopefully will provide some protection. The major concerns with an auto bone marrow transplant is infection, especially during the first 100 days. During this time, your body is spending all its energy learning how to remake red blood cells, white blood cells and other bone marrow components that it’s too weak to fight infection.  Thus something as small as a cold or sniffles can become deadly.  

It’s also important to understand that my body no longer knows how to respond to previous infections that the normal adult would have antibodies or “directions to rid of the infection”.  Every infection, every disease is now brand new, similar to a newborn but without the antibodies from Mom, thus my body will have to relearn how to fight it off. Then at 6 months, I will start getting newborn immunizations to help with protection. 

I also had my trifusion line removed which means I can shower without having to cover myself in cling wrap and tape. I honestly don’t know what to do with all the extra time I have around showers. Although it’s great it’s removed to prevent the risk of infection, it causes a little uneasiness knowing I’ll still have to get blood work done each appointment. Hopefully blood draws will be simpler than the trouble we have starting an IV. If not, you may see me asking for a PICC line— just kidding, well kinda. 

We also received the “okay” to no longer wear masks while driving in the car! Who knew this would be such good news! Terry and I have now taken multiple drives the past few days around town just to get “out” of the house. It’s crazy how much a drive can help your mood and mind during these days. 

And some of the most exciting news, as of today I am able to walk outside for the first time since Day -7! It may be only a high of 40 degrees, but I am so looking forward to sitting outside for a few minutes to get fresh air. 

It’s been 22 days since I received my stem cells and what a ride it has been.  For the first few days afterwards I continued to feel okay without too many complaints. On Day 5, I did a complete 180 when my counts completely bottomed out.  I went from feeling okay to not being able to walk from the bedroom to the living room without assistance. I was so weak that I had to use a wheelchair to get to clinic. For those that know me, you know that I wear my pride on my sleeve and that was hard to admit I couldn’t make it that far. I joked with the nurse that I didn’t want to have to wear a yellow fall risk bracelet for the next 6 months, and that was the only reason I agreed to it. It was some of the hardest days I had ever experienced.  

During this time I wasn’t able to eat or drink without being in intense stomach pain that would stop me in my tracks, thus I didn’t. I can only describe it as your stomach being twisted and pulled- similar to a labor contraction without the relief. It’s honestly some of the worse pain I have ever experienced and I have had two babies without an epidural.  It would take over 2 hours for me to take my medicine (only 3 pills) because I couldn’t handle a small sip of water. I remember telling the NP, that I was still able to take medication when she asked, I just left out how long the process took. The moment they started IV fluids the pain would start immediately and I can’t tell you how many times I sent Terry for a puke bag- thank goodness he can still run pretty fast after training all these years running after the kids. 

Around the same time, I started to bleed for no known reason. This was a concern due to my numbers already being so low. As my platelets continued to drop, it became evident that a platelet transfusion was needed.  Thankfully luck was finally on my side as my body handled the platelet infusion like a champ and we started medication to stop the bleeding.

It wasn’t long afterwards that I spiked a temperature and was sent to clinic. Part of the contract we signed at the beginning of this states that we must reside within 30 minutes of the clinic during BMT for this reason. We had to get to clinic, during rush hour, in 30 minutes as every minute with a fever can be dangerous. When we arrived , the team had blood culture bottles ready to go and antibiotics hanging ready to be infused.  I have never seen such orchestrated and organized chaos. We immediately started antibiotics and there was a bed in the hospital ready 30 minutes later. 

In the hospital it was determined that my fever was most likely due to early engraftment. This was great news that my body was engrafting but my hemoglobin was continuing to fall. I wasn’t there long before I was given a blood transfusion to help my body. Thankfully this was our only real “excitement” of the hospital stay. 

After a few days, we were released from the hospital and instructed to resume our daily clinic visits. By this time, I could finally drink a few sips of apple juice without getting sick which was a huge improvement compared to before being admitted. I felt like I was finally moving in the right direction, but unfortunately there were few setbacks in side effects due to some regressions in my counts. 

Today, my fatigue level is something I can’t even explain. I am currently sleeping around 18+ hours a day and try to make it 2 hours between naps. I am currently battling bleeding still and my numbers dropped requiring addition growth stimulating shots last week, in hopes it would help raise my WBC and ANC. I am still unable to eat or drink like normal. I promised my oncologist that I would try to drink 2 liters per day and there are many days I drink a total of one glass of fluids- but I am trying. I can literally go from feeling okay to feeling horrible in what seems like the flip of a switch which is hard for me to accept.  I know we are making steps in the right direction but I don’t know if I was mentally ready for this marathon. Although, I don’t know if anyone can fully be prepared no matter how much reading you do before hand. 

This week we will be in clinic. We will be meeting with the survivorship team to discuss how everything will go until Day +100. I have a lot of questions to ask, especially about the timeframe for us to be able to see the kids again. We are longing to hug them as it’s been 5.5 weeks since we said our goodbyes but also know that we can’t rush the process.  Here’s to another week being half way done.