Friday was my 3 month post-operative appointment in Portland. This time I did not have the long exhaustive list of questions I typed up and I did not do any prep work the day prior. Aside from my insurance card, I made certain to bring the copy of my MRI scan taken on December 21st to the appointment.
I am not sure what I really expected. I guess I just wanted an answer for why I am having intermittent double vision and an impression of my MRI that Harley and I had already looked at.
3 months post surgery, the start of a new year, and I am ready to be done with this. That is the difficult thing with NF2......you are never done with it. Again and again that is hard to accept at times. I was one of the "lucky" ones when I had cancer and it was "done" with. The tumors were gone and I was able to move on and return to life as I knew it before.
With NF2 that is never the case and even more so for someone like me who harbors MANY tumors. It is not like passing or failing a final but taking all the exams in between in a ground hog day cycle (over and over again never reaching the final).
Anyhow, first things first.......What is wrong with my eyes?
We learned that there are other nerves involved with vision besides just the optic nerves (I think I remember the 4th and 6th nerves and I can't recall the third one mentioned). These nerves as I understand now are responsible for eye movement. They are also located where the tumor was and split before reaching the brainstem. During surgery, these nerves get irritated as they are so close to the tumor. Immediately after surgery I had really bad double vision which took a couple weeks to dissipate as the area healed. This was normal. What is happening to me now (small episodes of double vision when reading or trying to read while in movement -a car) will take time to resolve. It is a weakness in the muscles around my eye and also irritation of the nerves controlling eye movement. It sometimes takes 6 months to a year to improve/heal.
My worries about the papilledema I had and if it could return.....I will not know the current status on that until I see the neuro-ophthalmalogist (eye doctor) down there on the 17th. The eye doctor needs to dilate my eyes to be able to look into them and observe the optic nerves. It is unknown on what exactly caused the papilledema as I have so many tumors up there. The surgery would not necessarily resolve that problem. There really is not a solution to the papilledema aside from the medication (diamox).
The MRI
Harley and I looked at the images. Understand that I have experienced two things: cancer (malignant tumors) and these benign yet slow growing tumors. It is still hard for me at times to want to fully comprehend the distinction as for me the cancer disappeared after treatment. That does not happen with NF2 tumors. I know this but get in swept up perhaps in fantasy moments forgetting that.
The point is that we were actually very excited to see the MRI this time and when we saw it our reaction was kind of like "Oh. Sigh. There is still some there. AND That other one looks really big now. Look at all those other ones." Harley was more patient at viewing the images (it is cool technology) whereas a couple minutes was enough for me and I was ready to put it away and not think about it until well after the holidays.
I have not seen the MRI report yet but I was told that it looks good (85-90 % of the tumor was removed and the others appear stable but of course are still there.) In my case the tumor cannot be removed entirely without leaving some hefty damage/side effects.
Then what I was totally unprepared to think about or talk about on my cloud 9 fantasy........when to get the next tumor operated on. I asked that in the last appointment. Apparently I must have still been compartmentalizing the situation as I was able to handle discussing/considering it back then.
This time around not so. I don't know what plane of existence I was on but when the doctor told me they could do the surgery in the spring I was just sort of stunned. That probably is not the right description. What actually happened is that when she said the spring I thought of these things I was planning to do and then like a 2 year old that just had his/her security blanket taken away my eyes started to well up until I could not contain the tears any more. I am not sure if my right eye produced tears but my left eye definitely does.
I got upset like when the anesthesiologist came to tell me it was time to go into surgery. One minute I was fine and the next I was falling apart.
This is not new news. While Harley comforted me he also reminded me that this is nothing I did not know. In fact, this was expected before I even had surgery. It is known that this other large tumor has to be addressed. I have known that and inquired about it for years as we were watching and waiting to see what was going to happen with the first treated tumor.
Really this other tumor was originally planned to be treated by now. If you recall. the right tumor grew quickly in 2004 leaving me with an immediate treatment decision. The plan was to radiate these 3 large tumors over a 2 year period. Unfortunately things did not pan out as anticipated and the first tumor got bigger.
I think before the surgery I was maybe speculating that I could get the second tumor radiated once the other two had been removed and debulked (thinking there was more room if it swelled). Really though, the tumor is too large. It will still be there and pose the same threat as did the other. At this time, the only solution for the time being is to remove as much of it as possible. I don't think I comprehended that point back then as the immediate concern was the current tumor which was larger and causing problems.
So here we are back in a near same place again (worrying about another surgery and tumor). As was before, it is best to get it done while I am strong (especially seeing as I did so well with the first surgery) rather than too late when there are irreversible problems. Yet I am suffering the same grasshopper procrastination as when I went through chemo. It is nice to start feeling good and not want to feel like crap again. As I got stronger through the treatments, it was hard to go back in. Just when I started feeling great it was time to do it again. I had a hard time coming out of surgery immediately afterward that I do not look forward to enduring again.
As I have been doing great in recovery I got on some wild fantasy that I could completely skip 2008 in dealing with any of this and having another surgery. I had the mentality of checking out and taking a vacation from NF2. I am still somewhat in that frame of mind. I told the doctor that I will not even consider surgery until at least the fall when I have my next MRI.
Plans for spring and summer 2008?
A) do some snowshoeing
B) climb the Columbia tower in Seattle
C) improve running to run some 5ks and maybe a 10k
D) paraglide off Tiger Mountain in Issaquah to celebrate my 15th year of remission from Hodgkin's Lymphoma - this is the biggest one that I have been waiting YEARS to do
E) return to scuba - this is another biggie I have been waiting years to do again; in case you did not know, I have been an avid diver since age 19 but stopped in 2004 after the news of the rapid growth of the right tumor which got larger after treatment
F) figure out some way to try rollerblading again - this was also a very big sport for me that I avidly did (completed 4 25-26 miles Seattle Super Skate courses) but have not done since 2004 before the radiosurgery treatment
As you can see, I have lots of plans to which a surgery would put a dent in all those things. I plan to play first - who knows how long that will last? You must seize the opportunity when it presents itself. I have to train to do all these things which would be an added bonus as I have to train, keep fit, and get ready for the next surgery anyway. So that is how 2008 is looking. As my friend Greg with NF2 says "Every day is a training day."
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