As anyone who has dealt with their own or a loved ones medical emergency can attest to, sometimes you feel like your job is to make sure other people do their job. There were days I seriously just wanted to scream DO YOUR JOB so I didn’t have to. I have said that I was provided a nurse navigator through my health network system. There were times I could not imagine navigating this process without her. Once the process kept going, she was sort of a last resort to get done what I needed to when I was not able to get things moving. If you don’t have a navigator, as most people do not even though they are becoming more prominent in this sort of setting, it all falls on you and can be even more frustrating. This is where having a notebook, a planner, and a support system buddy at your appointments can really be helpful. You will need to be your own advocate and push people to get done what you need to in whatever time frame is necessary in your situation.
One Week at a Time
After the first day of my second treatment regimen, I was kind of expecting a restful boring few weeks ahead. I was not able to be left alone, drive, or take care of my kids independently so it made sense to expect someone to be here and be able to take it easy. I was also kind of itching to do things and so it was a difficult balance. It was a quest to get back to normal and feel productive, but also take it very easy. No problem, right?
So Many Questions
This middle part of the week, as I continued to deflate, there were still a lot of questions. I was still stuck in bed. I was dizzy on and off. The left side of my face felt weird, including my eye, which is nerve wracking of course. No one had come to a consensus of whether I should be moving my legs around while I was in bed to prevent clots or if that would dislodge the clots I had.
All Puffed Up
So here we are, day two in the hospital, after a sleepless night and quite a day that led us here. That Guy was with me, my dad still hadn’t seen me so he came up at some point that morning. The doctors came around doing rounds. When I awoke, my arms and hands were even puffier than before! It seemed like this day brought even more questions than answers, which was very frustrating.
I was still very out of it. Some might say I always am, so just imagine how I was even worse. I was not allowed to eat solid food we found out and was not allowed to eat anything until after my IR check that day. Someone had allowed me to have dinner the night before, whoops! And that kind of sums up how everything went that day.
Error In My Favor
Once I was back in a little private triage room, which in reality was a hallway where there was a little staff room if I remember correctly, I remember feeling really puffy. I started taking off my rings. Then my necklace. Then my bracelet. And then my wig. The gentleman who had gotten me the wheelchair was seriously the most calm person ever considering the circumstances. He got my mom a little bag to put everything in for me (Catch up with my trip to the ER starting here).
Danger Danger
That Little Girl has a little diddy she likes to sing. It goes something like this, “Danger! Danger! Choking Hazard. Choking Hazard. Danger! Danger! Choking Hazard. Choking Hazard….” It started a little bit after That Baby was born and there was a particular toy she wanted. We tried to explain all the small parts were dangerous to not just her but also her baby sister. We agreed to buy it if she kept it all out of her mouth, something we are still working on. So now she calls all similar toys, “choking hazard Tinkerbell” or “choking hazard such and such” when talking about them. Well, the next part of the story is about me and the day I felt like I was in danger and well, like someone was choking me. Don’t worry, they weren’t.
Wrapping up with AC
So I had finally gotten to the last cycle of this first chemotherapy duo. I was still having these awful moments where I felt like someone was choking me. My chest was still turning purple. I was dizzy “more often out of nowhere” (a direct quote from the notebook I take to appointments). Another direct quote from my notebook, “When do we start worrying about this pressure in my neck?”
Third Time Was Not Such a Charm
Immediately prior to the third cycle, I started to have some new strange symptoms or side effects. For one, I was gaining weight, but the chemotherapy protocol I was on included a lot of steroids and fluids, plus I wasn’t hugely active. It wasn’t out of the question that this would be happening. Additionally, the chemotherapy caused photosensitivity so when my chest and face would appear red and blotchy, I reported it to the doctor, but there were explanations for that as well. The pressure in my neck was concerning, but they didn’t know what it could be. Over that weekend, just helping my daughter get dressed made me breathless and a purpley red coloring. Putting That Baby in the car carrier was extremely difficult since I was bending over even if I was kneeling. My puffy achey eyes were attributed to the chemotherapy. I was told that eye drops would help that, as would using my reading glasses more frequently. What concerned the doctor I saw that day the most was the sharp pain I had in my back/ribs area when I took a deep breath. There were reasonable explanations, playing with my daughter and her friend on a playground or just the Neulasta shot or a normal tweaked muscle. With a history of pulmonary embolisms, he felt that was the most concerning to him. Before I could be cleared for chemotherapy, I had to have a CT scan to check for pulmonary embolisms. That Guy had accompanied me to the doctor appointment, but he had to get to work. My chemo buddy friend for the day was able to shuffle her team to extend childcare and stay with me for the long haul. I’m telling you, it truly takes a village!
All About My Girls 