It’s been awhile since I’ve been able to post, but Northern Ireland was amazing. Absolutely a dream. I was able to push through these barriers and complete my assignments for the course, which honestly, was a surprise to me. We learned so much on the trip in class and saw so much of a beautiful country. I did catch some kind of infection there which was cured by antibiotics my doctor prescribed for me to take on the trip, and I had a lot of back problems, but other than that, no big health issues. I fell asleep in some classes (thanks, low WBCs) and napped a lot, but I still got through to the end! My Ireland blog is here.
To understand where I’m coming from, let me tell you a story. Two decades ago, when I first got “sick,” the doctors were sure I had leukemia. They did a bone marrow test to confirm their diagnosis, and it put fear into a 5 year old that would never go away. I remember being wide awake and feeling an incredible amount of pain. I remember hearing the drilling and noises, and I remember everyone talking and me screaming, and the nurses holding me down asking me to “Be still!” I had no idea what was going on, but I knew it wasn’t going to happen again. My mom later told me that she could hear me screaming during the procedure and had to go to the restroom and throw up. My mom’s super strong so it must have been as bad as I remember it to be. Thank God, it came back negative for leukemia, but the whole situation made my fear of everything doctors and hospitals even worse, and I was scared they’d do things like that to me again. I got over my fear of doctors and hospitals – I had to – but I never trusted them over any kind of procedure ever again.
Fast forward to December when I had a liver biopsy. They told me they were giving me sedation and pain medication, but I felt every bit of it, and was wide awake for the whole thing, and it was not a pleasant experience. So I really have an issue regarding doctors and their exaggerated descriptions of procedures and pain. “Twilight sedation” or the whole fentanyl/versed combo? I don’t buy it. You’re not calm, you’re not asleep, and your pain is not controlled. The biopsy was the “icing on the cake” that made up my mind that conscious sedation and the like are terrible, cruel ways to try to help a patient.
Anyways, it’s been 9 months since my transplant. Everything is looking good except this WBC issue I’ve been talking about for awhile now.
Last week for first labs home, we learned my WBC level is 1.1, lower than before. My oncologist scheduled my bone marrow biopsy for Wednesday. Remember I told him the only way I was doing it was under general anesthesia, which is where you are 100%, completely asleep. He wasn’t thrilled about that and tried to persuade me to get it done normally under light sedation, so I begged. I remembered being 5 years old, being alone and tortured, and I begged some more. My mom was there and agreed with me, telling the doctor what I was saying was true and I couldn’t get it done like last time. No procedure room, but an OR. No light sedation, but general anesthesia. Thank the Lord, he gave in.
It took a month to get this out-of-the-ordinary procedure/set-up coordinated, but Wednesday is the big day. I still hold the fear I had as a child because I don’t trust this doctor 100%, and I’m scared how painful it will be. Was my last experience so bad because I was little and just remember it to be like that, or was it truly horrific? Was the pain that bad? I’ve heard some people tell me it’s pretty bad, so we will see.
You know it’s funny I’m more scared of the procedure than the results. I just want results, period. I don’t fear what they may be – I just need my doctors to find answers on what is causing this and how to fix it. Whatever the diagnosis may be.
Please pray for strength, peace, and answers.
When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.