Last Monday, I voluntarily checked myself into the hospital to have a little surgery on my brain. The doctors, Jon, and my parents kept telling me it was a normal procedure and that many people have wires and small boxes in their head. When Dr. M arrived home from vacation, he did his due diligence, visiting me in the hospital and comparing my MRI scans with those I took at Alemana in November. Since there were only possible benefits, the surgical procedure was part of the treatment plan. The surgery may help with my balance and speech issues. It may not improve anything; it remains to be seen.
When I was locked in the hospital the week before, the neurosurgeons were insistent that I have surgery soon to put a stent in my brain to help drain dangerous fluid build up. You see, my head hurt because I had so much swelling, called edema. Since I have never actually seen my scans and know they look bad, I was pretty upset that I was shown them so readily. After a few days, the doctors calmed down, and actually looked at my previous scans of my tumor. It turns out when they actually compared the scans, the tumor hadn’t grown since my last MRI in November. However, the neurosurgeons were very concerned because the tumor is preventing regular drainage of my edema, or intracranial brain swelling. Since there is blockage, and not normal drainage, the stent is meant to circumvent the tumor. Since I have a huge tumor, the box was implanted to allow for natural drainage into my stomach. The neurosurgeons drew me about 27 pictures of my brain and the blockage. They were worried. According to healthgrades.com,
“fluid collection within the brain tissue, called edema, can result from…numerous causes, including infections, trauma, brain tumors, certain toxic substances, extremely high blood pressure” and all those high altitudes I fly and travel to. I’ve agreed not to fly anywhere until I’m recovered.
- Right before the surgery I was nervous, because even though it is a relatively normal procedure, afterwards I will forever have a wire and a small metal box in my head. I shut my eyes tightly in order to pretend they were not cutting into my head. I fell asleep to the anesthesia that was administered correctly by a nice anesthetist, and in went the stent. I did pretty well, I thought, as I complained only minimally. Of course the surgery went fine, but I am in pain trying uto find a comfy way to lay my head on a pillow. Try as I might, all I can feel is (it’s not hard…) a wire and a small metal box, which I apparently pointed out too much. I wasn’t in the recovery room too long before they brought me to my parents and Jon in this tiny hospital room on the cancer ward. We all tried to sit in the room but Jon was on the floor, so the three of them took turns spending the night. Even though my curtains opened to a magnificent view of the Andes mountains, I’m not sure anyone slept really well because my steroids could only think about eating the next meal. Everyone did such a good job of feeding me, except the hospital. The food was so, so gross. Who wants to eat a processed manjar cake, a chalky red sandwich on toasted white bread, and canned peaches for every meal? My stomach didn’t actively hurt, but I was bloated for sure.
- I wasn’t in the hospital long, because my insurance company couldn’t afford it (go figure!). As I swung my legs around to the edge of the bed, I took joy in the fact that I could go to the bathroom without anyone watching me like during my last experience. What a relief! Unfortunately though, a nurse had to help me shower before I left the hospital. I was humiliated, but running the water over my naked body felt so good. Although I was cold and kept thinking of the showers in the Holocaust, (always a history nerd) the cold water felt good on my body. Due to the surgery, hair was matted to the back of my head with blood. The nurse had to work really hard to get the hair to separate from the drainage box. The back of my head is still matted, and I have a Band aid centered in the middle of my forehead that I can’t remove until Tuesday when I have my post-surgery follow-up. I also can’t clean my hair till Tuesday so that presents a little problem…
- I feel the weight of the steroid pills, even though my dosage has halved from what it used to be. Like an acne-ridden teenager, my nose has been a mess with pimples, white and black heads. It is slowly healing itself. My neck and chin have puffed up to the point where I can no longer recognize myself. Before I go to sleep at night, I play a game where I try to bite down on my jaws, as I have full on steroid clench. My mouth is clamped shut from the pills, so it is very painful. For days and days, I had intense and painful diarrhea brought on by the new medicine. Well, it got so bad, that Dr. M had to take me off all medicine, except steroids, in order to clear out the mess in my gut. Next week we will try to reintroduce the more effective oral chemo pill, which was so strong it was choking me and making me pass out in the middle of the day. The pill made me very sick, so I hope I can tolerate it. If not, I’m not going to take the oral chemo pill, because quality of life is important to me. I’ve already got many people to support me on that one, including Jon. There’s no point keeping me alive if I’m not myself anymore, and that’s how I feel about that. Obviously I want to take my pills appropriately and stay alive, but not at such a huge cost.
In order to make sure this blog is not one long list of complaints, which it is turning into, I’m going to stop here. I’ve already detailed on other posts how much I hate steroids, and the long-term affect they have on my body. Supposedly, when I feel better from the surgery, I will benefit from less swelling, and therefore, less steroids. We will see how that goes! Ojala…