what it's like to have more than 20 brain tumors....

...freaky.


I had been symptom free for the most part; except for that small part of the front of my tounge that had gone numb. Then suddenly over the weekend I started feeling stuff. Like for example;

Nausea. Oh my.... hate that. Both my docs were out of their offices so I had to pursue until I found the on call guy. He sounded sort of shocked and awed by my chart.. I'm getting used to that. He said of course he could get me something to help. When I got to the pharmacy the pharmacist said "what do you want.." "huh," I said "I don't know this is new for me..." The pharmacists said that the "doctor said to give you anyting you want.." Ohhhhhh, now my mind goes off into possibility. I glaze over as I am thinking of the street value of certain things and how many cancer bills could get paid... I'm interupted by the pharmacist who sees my visions too and seems to know what I am thinking.. and he says "he means do you want tablets or suppositories." Oh... ewe. I pick tablets. He points out that there is a concern with driving because it can cause severe drowsiness. Oh rats. So I head over to the drug store and load up on black licorice and cream soda. My own nausea cure.

My son is a huge Monopoly genius. Seriously he can play the over 10 year old version like an expert and we had just gotten the new electronic banking game. He was excited to play. I can't add up the numbers on the dice without extreme concentration. Good thing he can.

Ever have a car that you rammed into a big chuckhole? Knocks out your suspension and for awhile it pulls to one side or the other? That's how it feels to walk. I start out straight but my legs pull to the right, then I straighten up and my legs overcorrect and pull me to the left. I look like I am walking under the influence.

At times it feels like I have a hundred misquito bites on my head. It itches, sometimes feels more like a bite from a hungry ant met on a picnic. It makes it uncomfortable to lay my head down at night.

Better though; once the steriods started to kick in a lot of this went away. But the steriods keep me awake all night... and all day...

I had my first radiation treatment yesterday. It went easy. Today I am braving it without the benefit of Valium. I think I can handle the promised 5 minutes. Otherwise they promised to knock me out with a big rubber mallet. The techs are jokers. They have to be I guess....

I found a photo of the radiation mask on someone's blog. I'm snatching it. Thanks to whomever you are. This is what it is like. You also have your feet attached and hands to remind you not to move. It looks worse than it is.... really.

20? Did he just say 20?

It was a long weekend, and an even longer Monday. I had convinced myself that no news was good news. Then I finally go the call. I was in the parking lot of the grocery store at about 5pm Tuesday. I had waited and waited and finally thought "it must be nothing" and that I would have heard by now if it was. So I packed us up to the store.

I could tell the minute he said hello that it was bad news. I had prepared myself for what I thought was the worst, a couple spots, cyber knife, you'll be okay. What I heard was something that I didn't even have enough of a concept of to create a nightmare. "Multiple spots, you need whole brain radiation". I was stunned. I did not know what to say. Horns were honking around me, my son was listening carefully. In that moment time stopped for me.

So I ask; what about cyber knife? He says "no, there are too many". I ask "how many?" I can tell he doesn't want to say, so he says "it just says multiple". I ask, "like what 4 or 5?" He says "no, like 20... but they are small and widespread". 20? I cannot believe he just said "20". He says that cyber knife won't work on that many and I need to start asap. They will make appointments for me and call in a prescription for steriods to help with brain swelling.

He says that word that I now find to be the magic one "treatable". I know that means we cannot cure you, but we can kill this stuff and give you some time. It may or may not come back and we don't know if or when it will. Time. I've now come to the point where I am fighting for "time". Damn. These won't kill me, but may have shortened my life by a few more years. I tell him I'm "okay, as long as it is treatable because I need to be here for awhile longer.." He says "yes I know, and I promise we will do our best for you". I tell him to have a good vacation because I will need him to be fresh when he gets back.

Whole brain radiation scared me. It came up in my previous google searches and it sounded so aweful I skipped over it and zoomed in on the cyber knife. Now I had to go back and read it. Too many images of things like Young Frankenstein and bad looney tune cartoons.

The next day I get a flurry of phone calls and an insistant appointment for that day with the radiology doctor. I had to juggle a dental appointment to see him, but went back to get the dental work because you cannot have dental work while being radiated. Finally I arrive at the cancer center offices. It's a different one than I usually go to for chemo. It's a lot more fancy.

First I meet with a tech who takes my vitals and starts to explain the radiation procedures to me. And much to my relief; it doesn't sound as bad as I thought. About the same side effects as chemo, but they have drugs for those. Except for fatigue. Can't drug away the fatigue. It's highly targeted, not the "we dip your brain in acid" impression I had. I feel much better. After she was done I ask her, "So if you were me would you have this done?" I can tell this question shocks her. But to her credit she only hesitated for a brief moment, she teared up and said "yes, absolutely". She goes on to say "you are a single Mom, you need all the time you can get. I would do it without a doubt." I like her.

Next my radiation doctor comes in. I had met him a year before. He was the new shoe guy. He has changed a little. He wears Calvin Klein socks. No body here does that.. it amuses me. He goes in deeper detail on what is going on in my brain. "Yes, multiple spots, yes 20 or so," I ask him what size? and he says most of them are very small and pulls a pen out of a drawer to show me, about the size of the end of a pen or to me a sequin. They are the size of a sequin. Can't get the dancer out of the girl... Then he says one of them is bigger; "an inch across". whoa. an inch? Yes, an inch.

Based on all of this and my history he recommends whole brain radiation for 2-3 weeks daily, and then after about a month probably cyber knife on the big one. He says there is a possibility that the radiation will knock out the big one two, we just have to wait and see. I ask him about long term effects and he said some people do get memory problems like a year after treatment stops. He says you might forget names, won't be able to balance your checkbook... ah geez.. I can't do that now. Ask my accountant.

He offers to show me my MRI. I've never had a doctor offer to show me any of my scans before. I'm thrilled. I guess most people don't want to see them. He said "I thought you might.." so we go into his office where he pulls them up on the computer. MRI's are done in layers, like a cake sort of . I'm awed by what I see. He shows me layer by layer and I see at least 5-6 spots on each layer. It's everywhere... looks like my brain has measles. I think there is more than 20. I see the big one, it is f-ing huge compared to the others and sits right next to my brain stem. I'm stunned. Finally I say "okay, let's get rid of them".

A flurry of activity happens next. Appointment times get discussed, and somebody mentions doing my "set up" the next day. To do whole brain radiation you have to be perfectly still and they have to precisely aim the beams each time. So they achieve this by making a mask of your head that bolts you down to the table each time. I'm somewhat claustrophobic, I see trouble coming.

I was reasurred that I only have to be in the mask for about 5 minutes. I think that I can do. But nobody mentions the 30 minutes or so it takes to make the mask... So I showed up today to get my mask made. It's a soft plastic mesh that they stretch over your head. You cannot open your eyes and you cannot talk. You are bolted down until it dries. The tech suggested I take a valium before I come in on Monday. lol.

I'm over the drama now. I just want to get it done and over with. So I'll lose my hair again and be tired. Been there done that... I'm still going to do our Mother's Day business. I think that will be good for me and keep something positive going on while I'm being radiated. I'll probably to a smaller number of orders and enjoy it.

Okay...now I'm really scared.

I got my results of the scans on Friday. In Dr. Johnson's carefully chosen words "it appears to me the diseases isn't any worse..." good right? yes, very good. Except a huge surprise; a few spots of "uptake" in your brain. WHAT??

Did not even think or imagine something like that. Uptake is used in PET lingo to mean that that are of the body is having a lot of metabolic activity. Which is how cancer shows up on the PET scan. It's excellent if you have another test like an MRI or a CT to match it against to see if indeed an "uptake" spot is a tumor. The PET can tell you if the tumor is alive or dead. So yes, it's possible to have "uptake" and not cancer in that spot.

In the words of Prince Ahmed the head of nuclear medicine; it "could be metastatic cancer or normal metabolic activity in the brain." Dr. Johnson called that "vague". But man talk about making your heart drop out of your chest... brain tumors? I can't imagine anything more frightening at this point.

Next came the questions; have you had headaches... yes geez. But I also needed new lenses in my glasses and I went through Valentine's Day and wow.. that's always a headache. However I haven't had a headache since I got the new lenses and so gee... not in at least a month or more. I've been headache free.

Have you lost you balance? hmmmm.. not really. I can tip toe through my house where the floor is full of lego and k'nex pieces easily and with grace. Haven't fallen down. That's a big no.

Any coordination problems? No. I still have that single Mom ability to do about 8 things at once.

All big NO's.

So you think I'd be more relaxed about it all. But damn; this is really a scary thing for me.

Dr. Johnson ordered an MRI of my head asap. I go in on Monday morning at 7am. I'm slightly claustrophobic and so MRI's are not comfortable for me anyway. So he gave me some valium to take. Which is a good thing because otherwise it would have been a weekend of high anxiety for me. The valium has at least allowed me to sleep.

It's difficult to be alone with a child to take care of with something like this going on. Can't talk to a 6 year old about it; so it stews in your mind. I googled it once; but what I read was so awful I stopped. I know sometimes you find information online that is really old or you find what some patient wrote in a blog that was in a really bad mood and it is like a knife cutting through your optimism.

If they do find something; which in a cute attempt at humor Dr. Johnson assured me that "they will find something"... you know a brain...hehehe. Sweet isn't he?? lol. Then the approach would be radiation to wipe out the cancer spots and then back on my usual routine therapy. Maybe follow up with some chemo. All depends on what/if they find.

He did say that he thought it was a very, very small chance that there would be anything. The cancer would have had to make it up there during my time off herceptin; not likely. And I haven't got the other symptoms, blood tests, tumor markers all normal. He tried to be reassuring. But I think anyone would be freaked-out with even the idea of it.

I can't imagine that if there were live cancer cells floating around at that time that they didn't take up in an easier location; aren't cancer cells opportunistic SOB's? why would they go for the hard route up to my brain?

Dammit.... I keep remembering every headache, every mistake I've made here and there... but then I remind myself that I feel good. Maybe 2 months ago during the painful Valentine's Day this would be more believable but not now. And so it goes; I freak out, reassure myself and try to block it out of my mind.... in more ways than one.

And worse case if I need radiation I figure I can lose 50 IQ points and still be smarter than any boss I have ever had... and come to think of it, most of my employees... and gee; probably 100 points and I'd still be smarter than most of the men I've dated. Sorry guys... you know who you are... lol.

If I'm not dead, then I'm still a survivor...dammit

Here I am today; trying not to think about the results of my PET/CT scan I had last Friday. If any spots light up as cancer then I'm back on chemo next week. This time exactly one year ago I was in the same circumstance; waiting for those test results. My life has come full circle.

Once again Prince Ahmed head of the Nuclear Medicine department administered my test. At least I was in the hands of the best. The test was relatively easy. It was hard not to compare it to the first time when I had to be rolled in a wheel chair to the bathroom because I coudn't walk. I proudly hiked up there myself this time. I couldn't read his face after the test and there were no clues. I won't know the results until I meet with Dr. Johnson on Friday.

I had my usual appointment with him to get my herceptin last Wednesday and I told him I still had pain in my ribs that was sort of scaring me. What could it be? What if it is cancer and I'm just sitting here not doing anything about it? So eventhough my tumor marker is normal and I haven't any other "sign"; we decided to scan. I asked him if it was cancer what would he recommend and he said "back to the taxol, it worked well for you before.." that's true. It did it's job and quickly. So I jokingly said "great another bald summer..." he laughed with me and said, "we have a lot of great medicines..... but unfortunately all of them cause hair loss". At least if it happens I'll be better prepared for it this time and Amber won't freak out finding a bag of hair in my bathroom.

He also asked for some new chest xrays. He isn't convinced it's cancer and said "it could be something else and xrays give us a different kind of view". So after my xray appointment I stopped at Corey the Chiropractor's office.

After he got over the shock of my new appearance; the gray hair throws people... I told him what was up and where it hurt. He poked around there a bit and said "oh it's one of your intestines creaping up there". He did some stuff and then asked if I felt like I was being coerced? This made me laugh because I have felt like I was being coerced by someone pretty much every day of my life that I remember... I think that is rather standard for a youngest child. But yeah, especially at that time I did feel like I was being pushed into something.

He said "that's it... it's making your digestive system push up into your ribs...so give up the feeling and it will stop". Sure enough after he completed his magical remedies which I'm sure have some big scientific sounding names that I don't remember; I stopped hurting.

I wish I could say that it stayed away forever, but it hasn't, it has returned, but not as bad. It was gone completely for a few days. And it is definitely not as bad as a month or so ago. I've been trying to work through that coerced feeling. That's tough. I still have so many times in my head when I have felt that. I'm tired of it. As of now; you are not going to get me to do something, no matter what it is.. or how you package it...or try to make it make sense to me..or try to guilt me... I'm not doing it unless I want to.

Except that chemo thing... I'll do it even if I don't want to... lol.