It was another 7 hour return trip from Houston and the traffic jams remain a total mystery. The upside to being trapped in the car for so long was being able to catch up on podcasts. Chris has introduced me to the Ricky Gervaise show podcast and the walking enigma that is Karl Pilkington. The man is nearly indescribable and yet I will try. He is the mouth breather standing too close to you in the elevator, the creepy stranger giving you dirty looks from across a crowded room, the bathroom philosopher who ensnares you in his prat logic. I find myself gripping the steering wheel too tight in frustration at something ridiculous that he has just said, or howling out loud at an anecdote involving his poor beleagured girlfriend. The man is an absolute savant. He does a segment called monkey news where he relates an allegedly legitimate story in which a monkey does something fantastic. One of my favorites involves a monkey spa staffed and owned by chimpanzees whose clientele is exclusively made up of monkeys. Did I mention that it's in Ohio? I think I actually stopped breathing when I heard him trying to convince the cohosts that he wasn't making it up.
If you've never heard of Karl Pilkington, you'll have to google him when you have some spare time and a few brain cells to kill. It's a paradox wrapped in an enigma.
Now that that's out of my system I can talk about Houston. Tuesday kicked off at 7AM and didn't finish until after 6. First up was a blood draw and let's be honest, I've become spoiled by these longer intervals between visits. The needle stick made me want to whine and that never happens. I'm becoming a diva in my recovery. We ran into our friends, Aubry and Kelly which was a very pleasant surprise. Aubry is doing well and just getting used to life in the ATC clinic. We traded war stories and caught up on our doctor gossip.
I had a CT scan with contrast, which means you get injected with iodine via an IV. I can't remember if I've ever described the feeling and feel that I'd be remiss if I didn't. Imagine laying on a cold, narrow table covered in white paper. You're in your underwear swathed in scrubs that are either too big, too small, or a combination of the two. There's a short coil of plastic tubing connected to your IV and it mysteriously disappears off to the side of the machine. The table slowly slides back into a giant metal doughnut, exerting steady pressure on the coil. The coil that is attached to the IV which is just a hollow needle in your arm. You hear a pre-recorded voice telling you to breathe or hold your breath. Slowly, you start to realize that there's a strange metallic tang in your mouth, and your nostrils have begun to burn. You start to feel flushed and worst of all, you have the overwhelming need to urinate. It's the iodine. The nurses always advise you to stop by the restroom, even if you don't feel the need. I'll be honest, the first time I had the procedure I actually thought that I had wet myself. Thankfully, I hadn't but the experience never changes and I've lost count of how many times I've had the procedure. I suppose you can guess the iodine damages your kidneys, so you're supposed to drink plenty of water over the next few days. Always a treat.
I had a bone marrow biopsy immediately after this and for once, I remembered to bring Darvon. It's a pain killer that I'm allowed to take instead of tylenol. On the rare occassions that I've been allowed to take tylenol it's been my experience that it's superior to Darvon. Long story short, tylenol masks fevers so I haven't been able to take it. I took two darvon to mitigate the forthcoming pain and I must say it helped. The nurse was able to collect several samples of bone marrow and a nice bone fragment from my hip. Good stuff. The whole procedure tends to be uncomfortable, but not unbearable. Rosie, who performed the procedure thanked me for not wiggling around. Apparently people tend to squirm and fidget during the event. I tend to believe that the act of punching a long hollow needle into bone requires utter stillness. It's a courtesy thing.
The fun doesn't stop. After the BMB, I had 10 minutes to hustle to a lumbar puncture. It was more of a pained waddle, but hey, at least I was ambulatory. The pharmacy was late with my chemo, as usual, which made me feel bad for Jill, who performs the LP. She's always swamped since she's one of the few nurses trained to do this in the stem cell clinic. She told us that she's in the middle of training other nurses to do it, and in fact was asked if I could be a learning procedure. She cracked me up when she told me that she refused when she saw my schedule, stating that I'd already been through enough. I do love Jill. She's one of the fun aspects of my clinic visits. Believe it or not, I don't mind going to the doctor. I always get to catch up with someone and it's just nice to see that other patients are defying cancer and beating the odds.
After a lumbar puncture I'm required to lie perfectly flat for at least 30 minutes. This made me exactly 30 minutes late for my last appointment. I saw Dr. Kim, my opthomalogist concerning the GvHD in my eyes. I was on a course of steroid drops for a month which I finished about 2 weeks ago. As soon as the drops stopped, my discomfort amped up. Dr. Kim told us that my eyes were significantly better and wants me to try Restasis drops 4 times a day for a week. I already use restasis twice a day. If after a week my eyes are still bothering me, I'll start another steroid drop in addition to the restasis. The steroid this time around would be significantly weaker than the pred forte I was using before.
To recap the day, I was pierced multiple times in multiple locations, donated various bodily fluids and had paper strips stuck in my eyes. I almost forgot to mention that something strange did happen with my eyes. It actually has to do with my sight. Normally I wear reading glasses, which I lost a few months ago, and am deemed farsighted. After my transplant I became nearsighted due to cytaribin toxicity and steroids. My vision is now 20/15. Go baby stemcells. I haven't been able to see this well in forever and I'm going to enjoy every minute of it since I'm sure it's just temporary.
Today was nice and short with just one appointment to keep. Dr. Kebriaei gave me the once over and declared that my throat was red and slightly inflamed. I haven't had a sore throat, but have noticed that my post nasal drip has increased since I started using restasis. It's a drug that stimulates tear production and acts as sort of an anti-imflamatory for the eyes. Dr. Kebriaei wasn't sure if this was the sole reason for the throat issue and wanted to discuss it with my opthomalogist. She's also worried about my skin GvHD, particularly the skin on my legs. I still have huge bald patches and the skin is a bit shiny. She wants to nip it in the bud so to speak and so I'll have another visit with the dermatologist. She's also arranging for the clinical photographers to start documenting it. More fun to come.
My CT scan results were in and it would appear that the Rituxan is doing its job. My tumors are resolving and are all less than a millimeter. The node in my lung was noted as difficult to distinguish. The tumor in my sinus cavity is miniscule as are all of the ones in my digestive tract. Hooray for that! One white blood cell was detected in my spinal fluid sample which guarantees an irregular result. I should know more about this one next week. All of the other tests are still pending. My WBC/ANC counts was a little low, RBCs OK and the platelets cranked to the max. Dr. Kebriaei snickered when we shared our theory about the ublicial cord being from a future stunt man. To put the WBC/ANC numbers it in perspective, they were roughly half the numbers they were 2 weeks ago (Chris will post them tomorrow cause I'm bushed right now). Dr. Kebriaei has assured us that these things happen and are expected and that we shouldn't worry. Who, me? I have an appointment with my local oncologist in 2 weeks, so we'll see what's what.
Drumroll please...I have been given permission to stop wearing my mask in public. I only have to wear it in the hospital and in situations where I'm in confined spaces, like a plane or train. This doesn't mean that I have carte blanche to go crazy. My immune system is still comparable to a newborn's minus the edge gained from colostrum. I'm still very susceptible to infection and could very easily end up in the hospital because of a cold or virus. I'll be responsible with my new found freedom, but I have to admit, it will be nice to forego public speculation for the most part.