12 11 / 2011
Well hello everyone. Since the medical saga continues - the blog will continue. I thought I had reached my quota of strange medical issues for the year - but as always, God’s schedule doesn’t seem to sync with mine. As my first post in the blog said “everything up to this point” … I am going to have to be unoriginal and use the same line again. Since I am very tired - this probably won’t be the usual, fun, light hearted post. Just relaying facts. Hopefully next time I’ll be more awake.
So, here’s everything that has happened up to this point, since my last radiation treatment.
I have decided to re-vamp my tumblr blog colors - I figure it’s been a while, let’s start new right? You guys have to be bored of the blue.
A while after the last treatment (actually while we were in Italy celebrating the end of strange illnesses to give a time frame) I began to feel strange sensations in my arms, back, etc. and they were extremely extremely sensitive to the touch. To the point that I didn’t like to be brushed up against. A light poke felt like a hammer. Soon after, my hands began to hurt. It felt like arthritis (or what I would assume arthritis would feel like). This happened while the sensitivity continued. I could barely turn my steering wheel. I decided to call up that same original doctor I had visited and referenced in my first ever blog post (the one that said I had one of three things..) He thought it might be a side effect from ABVD chemotherapy (V stands for vinblastine, a drug that can cause nerve damage). I thought that sounded annoying, yet likely. I called Moffitt to tell them about it, and they said it wouldn’t usually happen that far after chemo. Strange. So, what was it? My doctor ran a series of blood tests. First of all, my white blood cell counts were below the normal range (not that strange within one year of chemo). One test came back positive, called an “ANA titer” test, which can suggest an auto immune disease. It was only slightly positive, and apparently 25% of the population will have this test come back positive without having Lupus or any other autoimmune disease during their lifetime. He refers me to a rheumatologist. She is nice, checks me over, and says to play it safe she wants to run some tests. She says “I am expecting them all to come back negative, but you never know”. I test positive for a Lupus anticoagulant and DRVVT ( Dilute Russell Viper Venom Test, cool right?) Yet again, this test is deemed “inconclusive”. By this point I feel as though my life in general is usually inconclusive. Lupus is a very tough disease to diagnose (it can take up to two years and you have to have a certain number of symptoms to “qualify”). I meet the doctor and she says we will meet again in a few months and re-test to see if the findings of the tests are still active. Lupus can come and go, sometimes not showing itself for years until you have a “flare up” or it can be an every day extremely debilitating issue. So on this one for now - we’re just playing it by ear.
After this - I experience some fun new symptoms. I can cause the bottom half of my body to fall asleep/tingle on command by looking down. When I pick Cole up off of the floor or out of the car I get an intense fatigue/pain in my hips and upper thighs that will not go away until I sit down. Once I sit - it goes away within seconds. A couple of days ago I went rock climbing and never felt a thing. I’m a walking anomaly.
I call my oncologist and ask for an early meeting. We had a meet up and PET scan scheduled for December (as the first check to see if cancer has returned). When I meet with her she says she would like to schedule a PET sooner - as well as perform an MRI of my brain and entire spine to check for pinched nerves as a cause of the tingling/numbness when I look down. She says she assumes it is damage to the lower spine, which would be the area responsible for feeling within the legs.
We meet again. The MRI is completely clean, no pinched nerves or anything. She is still going to send me to a neurologist to run some nerve tests with him (this meeting will take place in a week or so). The PET however, is not as clean as we had hoped. If you remember in an earlier post, I mentioned a spot that faintly lit up in my hip. We had all written it off as a bruise, but this time it was more than twice as bright on the scan than it was on the last test. My doctor says it is unlikely that it is Lymphoma (although still possible) and could also be an auto immune phenomenon. She says the latter seems more plausible. She also mentions that there are many more things that it could be, and only a biopsy will help. She wants to run another MRI on my left hip to see if this lit up area is a mass that can be removed or not. If it is - it will be a major surgery (but the sample will be more accurate) and if it is not a visible tumor they will simply knock me out and stick a large hollow needle into the area to take a sample. This can cause some crushed artifact and it may be harder to truly identify the cells that they’re looking at. The biopsy can actually tell them if it is in fact autoimmune, lymphoma, or something else. Thank you modern technology. Incredible. During this meet up Cole decides to reach his hand into a tupperware of pasta and take out a handful and shove it in his mouth, spilling it on the floor. Then he cries for the next hour.
Yesterday I ran after the doctors appointment to the other Moffitt for a last second MRI. usually I know that they will be putting me in a gown and helping me tie the back, so I come prepared. Today I had leopard print underwear and some loud halloween socks on. I’m sure the nurse enjoyed that. They start up an IV in my left arm. They wrap it and tell me not to bend it. They then bring me some forms to fill out. This ends up being an interesting experience as I am left handed and short, so I end up having to fill out the papers on my tip toes with my arms straight. They take me back to the MRI room. The technician looked at me like I was crazy for coming back for more. We had JUST missed the hip area in the MRI the day before by going to the bottom of the spine - so we had to go again just a bit farther. This MRI is better than the last one. In the first one, they have a plastic cage over my head and a big mat strapped to my chest. There are loud banging noises, and I am pushed into a small tube. I hold an “emergency bulb” that I can squeeze. I don’t know what else to do, so I listen to the banging noises and find a pattern. Six knocks, seven bangs, seven knocks, seven bangs, six knocks, seven bangs, etc. I realize that doing this for an hour and a half might make me crazy, so I start to sing christmas carols in my head. This made me so much happier and excited for Christmas, my second favorite holiday. After this first scan a nurse tells me she will lead me back to the dressing room. She gets lost and I help her find the way back - this is my area of expertise because we end up by the radiation rooms). I bring her in and the other nurse asks if they can hire me to give tours of the new facility. This made me proud. :)
In the second MRI (only hip) I still have a mat strapped to my chest (reminds me for the infant sushi roll costume that I thought about forcing on Cole this year). This one doesn’t roll me all the way in, and I get to wear head phones and listen to Adele since they’re not scanning my brain, instead of having ear plugs in my ears (MRI’s are notoriously very loud). I accidentally forgot to take my ring off (no metal can be worn in an MRI) and it begins rattling and shaking on my hand - crazy sensation). After this Chris takes me to international mall (sweet of him because he hates malls) and then we get home and collapse on the couch with Harry Potter and the Deathly Hallows : Part 2. This was a nice end to the day. Go Harry.
I will be getting a call from my oncologist on Monday to let me know what type of Biopsy I’ll be doing, so there will probably be another post that day. Now we wait. My doctor should have the results of the MRI on Monday, and then we will know how serious the biopsy coming up this Wednesday will be! Thanks for tuning in, once again. :) Join us at the same time next week.