February 14, 2009
About that tumor...
Well, its been six months since I had gamma knife surgery for that darn brain tumor. I haven't talked much about it since, I've had a bit of rough time, mostly because of the follow up medication which I did not react to very well. The first six weeks were really hard and included one scary trip to the emergency room, but once I got past that very necessary medication, things got tolerable for the most part. The headaches returned though, as did the vision problems, and that was a bitch to deal with, trying to find the right combination of non-narcotic medication to combat the pain. Posting here over the last few months has been light because of it.
Anyways, at the three month check up, it seemed that the tumor had gotten a little smaller and that was good news, but it was dampened with the worry about the severity of the headaches and the vision problems. There was some loss of vision, mostly in my left eye, mostly in the peripheral areas and some concern because the loss over the last few tests seemed to be worsening. Some of that could have been caused by residual swelling from all that radiation, but no one could be sure. Only time would tell.
So. I had a lot of vision tests but the three month period seemed to be the worst point. We were still adjusting the medicatiion and that seemed to help. Over the last couple of months, the blurry vision episodes seemed to lessen and so did the headaches. The vision test last month actually showed improvement, some of the black areas went grey and some of the grey areas went light. That meant I could see a little light in areas where I couldn't see any at all and I could see more light where I could only see a little before.
I had the six month MRI late last week, and I saw Dr. Wolf right after. The news is not only good, the news is great.
Before picture, July of last year:
and... last Thursday:
It's still there, but you can see the change the radiation made. Even if it doesn't go all the way away, the tumor appears to be dead and shouldn't grow again. That's the really important part, because even if it doesn't go away any more than it has right now, I can certainly live with it. As long as it doesn't grow, I'm good!
I'm now off the three month check up schedule. The doctor said, see you in six months, and after that, I'll see you in a year.
What all this means is the treatment is a success and it looks like I'm gonna be okay.
Thank you, for all your prayers, for all your support, for being there for me. I can't tell you how much it meant to me.
August 15, 2008
Whew. It's Done!
Well. Yesterday was an absolutely amazing day.
The early part went pretty much as planned. I arrived on time, they checked me in on time, and I got to use all my standard hospital jokes on a fresh new audience. Sadly, they didn't go over very well. When the nurse asked me if I had any allergies, I said, "only one, Gamma Knife" ha ha. Ha. and... did I have a preference for which arm to put the IV? as a matter of fact, yes I said, I did. Which arm he asked and I said, "yours!" ha ha ha, bada boom.
He chose my left arm and then he doped me up.
Funny thing about that, they had to give me a bit more dope than originally planned. The nurse told me later that although I appeared to be asleep, “those big blue eyes would not close.” My eyes followed every move he made but I was completely unresponsive to every question he asked. I just stared him down and made him so nervous that he finally just gave me some more until I closed my eyes and then he was able to get the frame screwed on okay. When he told me about it later, I said, "Yeah, well, I was trying to figure out why you didn't laugh at my jokes. You shouldda laughed!"
Speaking of screws, well, turns out that they weren’t so tiny after all, pen points, nope, more like sharpie markers - medium point, and under the hairline? Nope, try top of the forehead, just below the hairline. When I saw them coming out, I about had a heart attack and covered up my shock with a Bob Vila joke that didn't go over very well with the head nurse but at least the junior nurses had fun with it. Oh well. I don't know what the two holes in back look like since those are actually in the hair, but there are two holes on the top of my forehead. At least my hair covers them and they’re already healing, Believe it not, they don’t hurt. None of the holes hurt.
They don’t hurt because the entire top and back of my head is numb, according to the paperwork, its gonna stay that way, the back of the head for 3 or 4 weeks and the top for a little less, and that, my friends, is one funky feeling.
Out around noon turned out to be out around 1:45. 25 minutes of zapping turned into 45 minutes of zapping. They didn’t say, but I think it was because the 25 minute zapping estimate was based on the original July 3 MRI and by August 14, the tumor may just have gotten a little bigger. I don't know for sure, and I suppose it doesn't really matter now.
I was completely exhausted when I got home and starving. I was mildly queasy though, ate a little, and had to lie down, ate some more, then back to bed. Finally fell asleep and that was that.
It’s done, it didn’t hurt, no real side effects. I’m on some heavy duty steroids to reduce swelling and tylenol to keep my temp down, gotta check that periodically because they really heated my brain up with all that radiation. The ‘roids are supposed to cause some barfing but I haven't noticed that yet, but I am taking something at the same time to help and maybe that's why. I felt purty darn good today, just tired. I went to work, I was fine, but I left an hour early because I was so tired. I asked for a CD of the procedure, but forgot it when I left. Darn. I asked them to mail it, I hope it gets here soon.
Its going to take about three months for the radiation to do its job. I’ll have an MRI then to see and hopefully there will be nothing to see and Dr. Aizik Wolf will live up to his name.
Aizik in Yiddish means “He shall laugh” and so will I if the tumor is gone. Laughing sure beats crying any day of the week.
It was a very emotional day. Over the past months, you have all given me so much of yourselves, in words, and prayers, thoughts, hope, encouragment, messages, phone calls, and love, and support, it was enough, more than enough, more than I deserve and more than I can ever thank you properly for.
And today, this morning, I found that, as full as my gratitude cup already is, there is even more to be grateful for.
As I'm sure you can imagine, going through these things is difficult enough without having to worry about money, I was scared enough without worrying about going with a doctor out of network and how I was going to pay for the insurance shortfall, so I just did it, and in true Scarlett O’Hara tradition, I did it and thought, well, I won’t think about that now. I’ll think about that tomorrow.
I’ve paid quite a bit already, and borrowed some from the boss which I can pay out over time without interest, bless his heart. I’m expecting other bills to be rolling in over the next month. The basic game plan is to just work and pay, tighten the belt and just plow through it till its done.
On Wednesday night, as I lay in my bed, tossing and turning in anticipation of Thursday's Gamma Knife Surgery, my dear friends, Sondra at SondraK and Rodger at Curmudgeonly & Skeptical held a little fundraiser for me, bolstered by the efforts of my dear friend Wild Thing at Theodore's World and SteveH at Hog on Ice. Between them, they raised an amazing amount of money that will help me tremendously, I plan on splitting it up throughout the payroll deduction period when a large part of my income will go towards paying back my boss, which has to be done before the end of the year.
I can never thank all you enough for all the the support and kindness shown to me and for what you all have done for me during this difficult time.
I am so very grateful.
In the middle of all this, I received a message from a dear friend who said something like “I always wonder why bad things happen to good people.” And in reply I said something like, “Maybe this tumor happened to me so that I could know how very much I am loved, and if that’s true, then this tumor is worth it, this feeling is so tremendous, so overwhelming and so wonderful, it is truly a gift from G-d and one that I cannot help but be grateful for.”
I mean those words. Thank you, all of you, for being part of G-d’s gift to me.
August 13, 2008
He Shall Laugh
For those of you who have been following the tumor saga, well, there has been a change in doctors, and a change in plans.
By the end of July, I was practically a crazy person, worried about the whole tumor/vein/thru the nose surgery maybe thing, crazy from the headache, and very discouraged with the way things were not moving along. I had a diagnosis, and a scary one, but I couldn't get anyone to talk to me about it. The neurosurgeon was on vacation, the neurologist was on vacation, I couldn't get treatment explained, planned or scheduled. I was in pain, I was scared and I was miserable.
On July 30th, I spent seven hours at the neuro-ophthalmologist, remember the blurry vision? At that point, to tell the truth, I couldn't possibly have cared less about the blurry vision and almost didn't go, but in the end, well, I went. And... I had about a dozen tests, some of the most evil known to man. Hour after hour of lights so bright that finally I told them where Bin Laden was hiding, and then I told them where Jimmy Hoffa was buried. I was ready to confess to shooting JFK when they finally turned off the lights.
Guess what? My optic nerves were swollen, and other stuff in there was also swollen, stuff I can't pronounce, or spell, all thanks to the tumor. That's where the headaches and the blurry vision are coming from, not the compression of the vein, at least not directly. The compression of the vein is causing the other stuff to swell or some such happy medical horseshit that I don't understand.
Anyways, he gave me a drug that should alleviate that, he said no surgery would be necessary, thru the nose or otherwise, and he cleared me for radiation therapy. And, bless his heart, he gave me a mild happy drug for the short term to alleviate my stress and tension and elevate my mood a little. I suppose I appeared to be more than just a little f-d up. I think he got that idea after I burst into tears and yelled at his staff but hey, anyone might have done the same thing after suffering through two months of killer headaches with little to no sleep while thinking about a brain tumor and then getting about six hours of bright light torture with no food or water. He promised that in three days I would feel like a new person, and yannow what? He was right. I did. The headache let up, a lot. It didn't go completely away, but it pulled back enough to make life worth living again.
At the urging of a good friend, I saw a "second opinion" on August 4. The "second opinion" is Dr. Aizik Wolf, and it was an interesting and educational appointment. Turns out that while my doctor offered me the best treatment he had available, it was not the best treatment available. Everything we were so worried about is no longer a problem. Dr. Wolf is not just going to stop the tumor from growing, or maybe, hopefully shrink the tumor a bit. Dr. Wolf is going to destroy the tumor. The position of the tumor, where it is in relation to the vein is not troublesome to him at all. He is going to destroy the tumor with the latest version of the Gamma Knife, the version he helped design. Its brand spanking new, fresh out of the box this past January.
End result, tomorrow, I have an appointment to have this MFCS of a tumor eradicated. I'm out of my insurance network, which means I'm going to be out-of-pocket a bit but so what. I'm getting the best treatment available and I'm getting it right now. I'll deal with the financial fallout later.
Tomorrow, the battle begins.
I have to be at the hospital no later than 5:15 am, for check in. I'll likely be cranky without my coffee, but I won't be cranky for long since right after check in, the first order of the day is to get me sufficiently doped up so they can attach this horrible metal frame-halo-torture device to my head. Attach, yes, attach as in, with screws, yeah, screws, real screws, screws that go in my head, screws that they assure me are very very small and that screw into my head under the hairline. sigh.
The frame itself with my head inside then slides into a helmet thingie and then the entire kit and caboodle with my head inside slides into the actual Gamma Knife machine thingie. Its all very star wars like and modern and stuff.
They tell me that's going to be the worst part of this battle for me, and the set-up for this procedure takes way more time than the procedure itself. After they get the frame on, and slide me into the "machine," they take a bunch of MRIs or CATs, or both, whatever, and then they store me somewhere while they feed all that into the computer and discuss it, and plan it all out and then.... well, then they shove me back in that machine (drugs should be worn off by then) and zap that bastard with 201 Gamma Rays of Radiation all focused into one small spot, make an adjustment, zap again, adjust, zap, adjust, zap, and so on and so on and so on.... Dr. Wolf said the actual zapping itself will likely take about 25 minutes. I should walk out of the hospital around noon, hopefully, I'll be enjoying lunch by 1:00 and napping in my own bed shortly thereafter. At least, as I understand it, that's the way the day should go.
Even considering those teeny tiny screws, it sounds way easier than actual brain surgery.
It will take around three months for the full effect of the radiation on the tumor.
If you're so inclined, prayers will be appreciated. If you're davening, I am Maita Leah bas Mayim. "May the tumor be reduced to nothingness"
I'll check in tomorrow afternoon, maybe before, or maybe after my nap and let ya'll know what I had for lunch!
Thank you for your support. Hopefully, there will be one last good news post and that will be the end of this.
and... Please, no frankenstein jokes, or photoshops.... and that means you, Rodger! heh.
July 28, 2008
I get by with a little help from my friends...
Guess what was in my mailbox today?
Ha! Just what I needed for the headache, and it came from the other side of the country, all the way from SondraKisPstan, just to put a smile on my face, and it got here just when I really needed a smile.
It was a bad day with bad news. To quote the radiologist:
Interval development of invasion of the superior sagittal sinus superior to the torcula. This significantly narrows the flow-void of the superior sagittal sinus at this level.
Superior sagittal sinus adjacent to previously described extra-axial mass appears to have moderately decreased diameter, probably representing compression rather than invasion, although the latter cannot be totally excluded.
Yep. That means I've won the jackpot, the tumor is constricting the vein and I likely get to have surgery for that before I can have the radiation. Oh goody.
On a happy note, the decreased diameter of the vein "probably respresents compression rather than invasion, although the latter cannot be totally excluded." So, maybe the tumor is not actually growing in the vein, but they can't be sure. Great. I never even considered the possibility that it was growing inside the vein, but now I get to think about that.
July 20, 2008
Oy, my aching head!
This is one of the more dramatic pictures from the MRI scan earlier this month:
I've been looking through the pictures, and there are a lot of them. I find them compelling, that's normal I suppose, after all, it is my head, but I confess that I find this one picture in particular to be fascinating. While no one with any real knowledge has explained this picture to me, from what I do know, I assume that the tumor is that small funny shaped grey thing at the bottom center and the rest is just brain fluid in the gap from the last tumor, and perhaps a bit of inflammation.
I look at the pictures and I think.... no wonder my head hurts. Yet, they tell me that this tumor is not really compressing my brain and should not be causing the headache.
I've never had a headache like this. For the most part, if I'm sitting still, holding still, all is well, but the slightest movement, if I move my head, or turn it, or if I bend over or even lean any which way, when I walk, or when I get up or sit down, when I go over speed bumps or any other bump in the road, or when I sneeze or cough, or when I get upset and my blood pressure goes up, pounding pain just explodes across the top of my head.
Even before we found out about the tumor, I figured I was taking too much headache medication, my drug of choice for headaches is advil, I was eating them pretty much every day, and supplementing now and again with a half of vicodin if it was especially bad. No matter what I took, the headache never really went away and its getting worse over time. Of course, the headache was part of the reason that I went back to see Dr. Landy, but then he told me that he didn't think this tumor was causing the headache. I was dumbfounded but then, he's the tumor specialist and I'm not.
So, at his urging, last week I saw another neurologist, a headache doctor. He does his testing, talks about migraine (even though my headache has nothing in common with migraine, except that it hurts) and he talks about concepts like rebound headache (more on that later). Then, he looks at the pictures and he tells me that the tumor is next to the rather large vein that runs across the top of the head and drains the blood. Yeah yeah, I knew all that, this vein was a real issue with the first surgery because the tumor was attached to it and its not like you can remove it. Ten years ago, all we talked about was the main vein on top of my brain, a bizarre coincidence of rhyming words that made me feel like I was living in a Dr. Seuss story. But, the fact is, its more than likely that when they were trying to remove the tumor from the vein (what they do is scrape it actually), they missed a bit, and that would be what's growing now. That's all blah blah blah to me, old information. What about the headache?
Well. He can't tell from the pictures we have, but this neurologist thinks its possible that the tumor may be pressing on the vein and slowing the drainage of blood out of my head. The build up and resulting swelling from a partially blocked vein could cause headaches like I am describing. From the description of my headache, it certainly seems possible, and my heart sunk when he said it. Just thinking about it is enough to make my head hurt.
First order of the day, no bending, no lifting, no straining of any kind, walk softly, move slowly. Stay calm, don't get upset, keep the blood pressure down. Second order, another MRI, a different kind of MRI, to see if that is really what's happening. They use a different dye to light up the vein instead of the brain or tumor and they look for a narrowing. If they find the narrowing, well, then they have to fix that before they do the radiation therapy.
Remember, the cyberknife is not going to remove my tumor, we only hope that it will arrest the growth, and if I'm really really lucky, over time, it might shrink it a little but they tell me not to get my hopes up on that. The real problem now is, when applied, the radiation will make the tumor swell and if the tumor is pushing on the vein already and the tumor swells, well, it could block the vein even more, or even entirely and then... well... you know.
Every thing is on hold until we find out.
This would not be a good thing. It would mean another procedure, one where they have to go through my nose to try to fix it before they try to fix the tumor with radiation. I refused any details about that procedure, I am on information overload at the moment and don't want to deal with what that's like until its a reality.
There is another remote possibility, the doc mentioned a concept called rebound, where the very medications you take for headache cause headache and that could be part of the problem. WTF? I have a tumor in my head, and you think the headache is rebound? Forcryinoutloud, don't I have enough to deal with?
I guess not, because I have been told to stop taking any and all pain medication. I can't take anything at all anymore, not until we figure this happy horseshit out. Its been four days now and the headache is horrible.
To make matters worse, I keep picturing that vein swelling up like a balloon every time I feel my head pound, and I feel it a lot. I had some very real moments of panic over the last few days, and I'm terrified of doing anything that might possibly effect it. I'm even afraid to cry, because then I might have to blow my nose and if I blow my nose... well.
Its irrational, I know. If they thought that I would do anything that would blow that vein, I would be in the hospital, but every time my head pounds, rational goes right out the window.
I won't have the MRI until next Thursday, and between now and then, my darling neurologist, Dr. Koch, goes on vacation until the end of August.
Silly me, I thought this was gonna be easy.
July 08, 2008
Show and Tell
Did you know I had brain surgery? Yep. I did, 10 years ago.
Some of you might have read about it, but maybe not since I've only posted about it a few times over the years. They removed a rather large tumor, it was about the size of a man's fist. It was also - Thank G-d - in my meningies (the tissue between the brain and the skull and known as a meningioma), it was not in my brain so they didn't have to dig and, it was completely benign. But, since I ignored the headaches and other symptoms for a long, long time, by the time they found it, it was too big for anything other than surgery.
I don't like to talk about it all that much (although there are more than few funny stories) but I will say this, brain surgery sucks. I don't recommend it.
The surgery was on March 4, 1998, and they told me then that the tumor could come back, but with every year that passed, it was less likely, and after ten years, unlikely.
Well. Last year, just as I was thinking I was home free, the headaches started again, and the blurry vision, which I ignored, as is my habit. But, while I can live with headaches, after a bit, the blurry vision made me nervous.
So, I visited the doctor, who sent me for a half-assed MRI, without contrast (dye) which... turns out... renders the MRI useless for us brain tumor people. In other words, it showed nothing. So... then I went to a neuro opthalmologist, who decided I have dry eyes and that's why my vision was blurry, and the blurry vision was why my head was hurting. He sent me home feeling foolish and loaded down with eye drops.
And... time goes by, the blurry vision still comes and goes and the headaches still come and go and I use my drops and stumble ever onward and forward. Then... the back of my head where they went in starts feeling funky when I brush or wash my hair, doesn't hurt but feels funky, weird, but I don't want to deal with it so I ignore it and... the headaches come more often and they're more intense and they last longer and so does the blurry vision. The computer kinda bothered me and I found myself using it less and less, keeping this place going began to be difficult.
So... a couple-few weeks ago I had my hair done and when the girl was washing my hair she pressed right there on the back of my head and I almost came out of my chair. It hurt and this during a headache that was hanging around for a couple of days. The headache stuck around for over a week and finally, I called the neurosurgeon. I had the heavy duty MRI early last week and saw the doctor last Thursday.
See that shiny thing shaped like a comma? Oops. I read that wrong. Let me try that again...
See that little black blob under the shiny thing shaped like a comma? Well, that my friends, is a tumor and all the rest of the stuff you see there is my brain. If you've ever doubted that I had one, well, doubt no more!
Yep. The tumor is back, dammit and I'm pretty pissed off. I was so darn close to that ten year mark!
I guess in my heart, I knew it was back last year, but I wasn't prepared to deal with it. I'm not sure I am now, but then, I don't have much choice in the matter, do I?
Thankfully, there is good news with the bad news. First, its re-growth, not a new tumor. That means we know what we're dealing with. Second, and probably the best news, its not cancerous (meningiomas rarely are). And third, its small enough so that they are not recommending surgery this time. Good thing too, because brain surgery is something I am not ready to deal with. Once was enough.
The doctors believe it can be treated with radiation and I'm going to experience first hand the modern medical wonder that is the Cyberknife, with the goal being to stop its growth and maybe even shrink it a little.
If the doc had recommended surgery, I would likely be going out of my mind. There are contradictions and risks with radiation, but I'm ready and willing to take those risks rather than have surgery. Radiation is non-invasive, fast, painless and out-patient, it requires no hospital stay (I hate being the patient). It won't make me vomit and I won't go bald. The Cyberknife sounds like a cake walk compared to brain surgery. Treatments will likely be over the next month or so and hopefully, they'll work.
I'm fortunate to have a team of doctors that are some of the best in the country, I have friends and family to help me and other than the tumor, I'm in good health. It should come out just fine.
So. Hang in there with me, please, and if you're so inclined, prayer is always appreciated.
If I'm absent a bit over the next month or so, now you know why, but don't worry. I may miss a day or two, but I'll always be back. Glowing a little perhaps, but I'll be back.