Outwardly, this adventure began Sunday August 24, when I had a headache severe enough to take me to the emergency room. In consultation with the ER doctor, and after the pain seemed to subside with decongestants and analgesics, Michael and I decided that it was likely a sinus headache and that the offered CAT scan would be overkill. The ER doctor concurred, though her advice was to see our family doctor if it didn't go away completely. It didn't, so we did. On Wednesday August 27 we saw him and discussed the possibilities. In particular, Anna Shea came home from camp with a bug that had made Michael miserable and there were other viruses running around town with the beginning of the semester. He altered the decongestant and pain prescriptions and we agreed to give that a few days. I was still feeling crummy after Labor Day and called his office that Tuesday whereupon he ordered a CAT scan, just to be safe. By the time of the scheduled scan on Thursday, I was feeling enough better that it seemed wasteful to follow through, so I was inclined to cancel; Michael advocated for going through with it, so we did.
After the scan, they had me wait while it was read to assure it was a solid scan and didn't require a re-do. I was then called into a back room to take a phone call from my family practice doctor to discus the results. He told me then that the scan revealed a large mass in the left parietal region of my brain, large enough to be causing "chronic mass effect." Given the shape and placement, he and the radiologist and neurosurgeon (with whom he'd been talking on the phone while they all looked at the image over their network) believed it to be benign, but also that it was large enough that it needed to come out right away. (I wrote down that that it wasn't a huge rush, that any time in the next week would be fine timing for removal.) The reason for the quick action is that it is quite large, 7 cm X 4 cm and putting pressure on my brain. It shows in multiple of the CAT scan “slices”, suggesting that not only is it large at the top, but also deep. It's a meningioma, which is actually not IN the brain, but on the lining, which is very good news. From the imaging they've done so far, it does not appear to be entangled in the brain. Although Michael got the picture instantly, it took about two hours for me to realize that all these words meant that I had a brain tumor. That timing was fine, in retrospect, as it allowed me to process in smaller chunks.
We are told that meningiomas are distinctive in appearance, with clearly defined edges and a shape make them susceptible to clean removal, and that mine is a "classic" meningioma, which is encouraging. Meningiomas are the most common brain tumors, very slow growing, and eminently curable. We have read that 2-3% of autopsies reveal meningiomas that have been non-symptomatic. Many are revealed through scans performed (we guess) for other reasons, and those that are small (2-3 cm) are often just watched so long as they are non-symptomatic. Since mine is both large and symptomatic, it needs to go. It will be tested after surgery to assure that it is, in fact, benign. We are told that these tumors are rarely secondary appearances of other tumors that have spread. A couple of
good sites for those who want
more information are: http://www.mayoclinic.com/health/meningioma/DS00901 and http://www.brighamandwomens.org/neurosurgery/Meningioma/Meningiomafacts.aspx.
As we mull things over, it's pretty clear that I have been symptomatic for some time, but that we didn't put the whole picture together, since it all developed so slowly. When I told the nurse in neurosurgery (as she and her colleagues were heroically getting insurance clearances, scheduling pre-op appointments and getting me onto the operating schedule on very short notice, all with remarkable good cheer and charm), that we had considered canceling the CAT scan, she smiled. She said: "You'd have been back soon anyway!" One interesting comment she made is that it probably did feel like a sinus headache: there was pressure in my head, it just wasn't in my sinuses.
Over the last year or so, I have had repeated instances of not being able to summon up the precise word I was seeking. I didn't really feel “right” all summer. I have been chalking this up to senior moments and viruses, respectively. I've been coping in various ways. For example, I've been having balance problems for some time, that were greatly improved through doing strength and balance training--until the last few weeks, when I've gotten pretty wobbly again.
Other symptoms I have had include two incidents after our return from France on August 10 when I could not type, even though my fingers were properly placed on the keyboard and I knew what keys I wanted to type. These were both disconcerting events, as I have been typing proficiently since I was about 13 and my father forced me to take a typing class in summer school. (I have since been grateful, though wasn't remotely at the time. Score one for parental wisdom even when disliked.) I am also now having some difficulty with handwriting. Anyway, the list goes on, and we're most interested to see how many ARE artifacts of aging and how many might be symptomatic of the tumor. We'll know more when it's gone, to which we look forward.
Friends from here and around the country have provided instant, caring and expert advice leading us to our decision to have the surgery right away, and in town with the surgeon who has been very strongly recommended. We're in everyone's debt not only for that advice and guidance, but also for overwhelming support and help, from stepping in to cover my classes, to calling, writing and making incredibly moving, thoughtful expressions of support. You know who you are!
I will have pre-op tests on Monday and Tuesday, including a baseline MRI and a physical. I'll then report Wednesday morning at 5:30 for a final MRI to compile a brain image to use as a roadmap in the “
stealth guided surgery”. It will include placement of "fiducials" to mark specific places on the skull. ( see http://www.neurospinewi.com/newsletters/stealthsystem.html for some details) We understand that all should be ready for that MRI to begin about 7 a.m. Wednesday, with surgery thereafter lasting about four hours.
We're very optimistic and we feel really good about the medical team, the prognosis and everything. While it's pretty weird to be in this situation--I don't FEEL like a person with a brain tumor--given that we're here, things are in good shape. When I told a dear friend that I feel betrayed by my brain, she said that it might be a betrayal by my brain, but it isn't by my mind. That seems like a pretty good distinction to keep hold of.
Michael, Kearney and Anna Shea will now take over this saga and keep you all informed about how it's going until I get home from the hospital. We are expecting one day in the ICU and "several" in the hospital. The recovery period could go very quickly, and I should be able to be back to teaching in a couple of weeks if there are no complications. I've cancelled September speaking obligations and we'll wait to see about October events until we have a sense for my strength and energy levels.
Thank you for all your caring. We are grateful and we look forward to finishing this story and getting back to our regularly scheduled and fulfilling friendships, occupations and diversions.
These pictures are from about 7:20 this morning after the surgeon had applied the "fiducials" to Tina's head (10, I think) prior to the pre-op MRI scan. These are used as benchmarks for the surgery that allow for 3-d mapping with the MRI scan data. The data gathered are used to help control the depth and location of instruments during the actual procedure...and we all want that done accurately. The MRI took about 45 minutes.
