Half way...

Yesterday I reached the half-way milestone in my radiation treatments. This is good. It's not fun, but not as horrid as I thought it might be... at least not yet...lol. I know that they say side effects can kick in further down the road. But for now it's okay. I would say a little easier than chemo. With chemo you know you will be really sick for like a week and then sort of rebound to functioning again. So you know what to expect. This has the unexpecteds, but not the immediate feeling of "ouch" that the chemo does.

The treatments are short; but wow... I will never forget that smell or somewhat skin burning feeling as those blasts of light go through. Unreal. It feels so "outer space". I'm sure if you are kidnapped by Aliens they have such a machine...

I made a mistake though... egads. I had felt those side effects and that coupled with some well-placed "you could have this happen...." type of comments from others who didn't mean to scare me; I over did the steriods hoping to avoid worse side effects. So I made myself steroid sick. Not good. Instead of staying at the minimum like suggested to me by the doc; I kept upping until I was at the max thinking I needed to in order to avoid losing my balance or ability to speak...... NO... didn't need it.

So I've been cutting back on them as suggested and I feel a lot, lot better. Effects not worse and according to the doc are probably from the treatment itself and not some "giant tumor try to strangle your brain stem..." thanks.

My son is so mad at me. The last week has been rough. We talked about it. He is mad that I am sick again, he is mad that I have to go get "medicine" every day, he is mad that I was so well and fun and now it's ruined. It's hard. His big-time temper is coming out in every way. And I don't blame him. I'm pissed off too. He battles for my attention and doesn't want me to leave his side. I know we will get through it, but whew...

So yesterday on my way back from radiation I stopped at the sporting goods store and bought him boxing gloves, targets, a hanging boxing bag and showed him how to use them. It worked. He loved pummling the targets in my hands and kicking and running at them.... or um.. .me. It's kind of hard for a Mom to say "okay go ahead and learn to fight and hit...as long as I'm safe..." but I don't care anymore. It needs to be. And if one day he is Golden Gloves Champion; I'll be proud.

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.

So I'm gonna dye my hair and get a new tattoo....

Yesterday my son came running up to me with a large red heart he had cut out of construction paper for me. He said "here Mom I made this for you." Touched, I said "oh thank you.." and then he said "it has words on it, do you want to know what they say?" "yes" I said. So he says "It says Dear Mommy, I love you and I'm very happy you are going to stay here for a long time." Stunned, I had to think for a minute. I've been very careful to make sure he did not get an idea of how serious my illness is because I didn't want him to worry about potentially losing his Mom. So I asked him very gently "were you afraid I was going to leave?" "Yes" he says, "I thought you were going to be an angel." I said, "you did?" and he replies, "yes, I did but I'm glad you are going to be here a long time". So I ask "why did you think that? was it because I was so sick?" "No" he says, "it's because you are so old."

It was hard not to laugh, but I managed to contain myself. And so I said "I'm not that old honey, I'm older than most Moms, but not that old." "Oh" he says, then asks "when are people old enough to become angels?" I think for a minute and then say "well it's different for each person, but usually people are in their 70's or 80's and that's along time away for me". He says "how long?" I say "that means you will be married and have your own kids and house and everything". This comforts him and he says "oh good, I was worried about who would take care of me, but I'm glad you going to be here a long time."

It's true I had him at an older age than most; it was just a few months shy of my 41st birthday when he was born. And for awhile it wasn't that big of a thing. Once in while someone would make a mistake and call me his GrandMa. Here in Utah people start their families very young and my high-school peers have grandchildren his age. So it's understandable. But now after my year of illness; I look 10 years older; and that "Grandma" thing happens constantly.

Like I will be paying for our groceries and the check out clerk will say "oh I bet this star wars book is for your Grandma and these sprouts are for you?" and he will roll his eyes with impatience and look at me. Sometimes I explain; lately I haven't. It gets built upon when I have to stop running and playing with him because I'm worn out.

And my hair came in almost completely white. It has amused me thus far. I wanted to see how it turned out. It has darkened up a bit, it looks much like Jay Leno's hair did couple years ago before he went nearly all white... except I'm cuter of course. But the hair does it. I look like a grandma. I didn't think much of it and was thinking of growing a little longer and just seeing how it looked. But now I'm thinking I need to look a little younger and stop the grandma assumptions a little.

I don't want to be one of those people with really obviously dark hair that doesn't match their face either. So I'm thinking of colors. My sons say purple.

A week or so ago I got my usual round of anti-cancer drugs. I'm back on herceptin and I found that after being on it for a couple weeks I started feeling much better. Dr. Johnson believes it is due to the herceptin. So I probably started spitting out cancer cells again over Valentine's Day when I was off the wonder drug. That's scary. I'm dependent on the drug that beats up my heart. I'm hoping this time I don't get the heart reaction and I can just stay on it. Or I guess if I do we take a break from it again and then hope for the best and get back on it as soon as I heal. It's a lot to think about. But the idea here was to keep me alive and comfortable until someone comes up with a cure. Please whoever you are - get to work.

I was mulling all this over as the chemo nurse was preping my port for the needle... she asked how I was? So I told her that "I got really sick off herceptin, so I guess I will be on it all my life..." She in all seriousness very kindly said "well you have a beautiful port...it's nice, it gives good blood.." it was so cute and it made us both laugh. So I said "yes, it is lovely isn't it? I think I'll start wearing off the shoulder tops now that spring is coming and really show it off.." by that time we were giggling out of control.

But then I thought of it... hey, what if I got a tattoo around my port? How cool would that be? Like it could be the center of a flower, or a moon with a fairy on top, or a Celtic circle of life.... my mind went crazy dreamingly thinking of the possiblities. But I'm not sure you can do that.. I'd hate to mess it up and then have to have surgery to put in a new one. Maybe it could be around it somehow and not right on top of it? hmmmm... I'm still thinking about it. Next time I'm a little bored in the chemo room I'm going to ask Susan the super-nurse... that should get a reaction.

Why the pain?

wow.. I did not realize so much time has gone by since I wrote on my blog. I've been recovering from Valentine's Day. Really! Recovering in every way. Physically, mentally, fiscally. And I have not been feeling very good. That's not good. I was in a ton of pain and extremely exhausted after Valentine's Day. I thought it would go away in a few days like the Valentine fatigue always does. But it has not.

I had an appointment with Dr. Johnson a week or so ago and got some really good news; my MUGA scan shows my heart to be functioning great now. So I got to go back on herceptin. But that good news added to my dismay; if it isn't my heart making me feel this bad, what is it?
When I explained my pain and tiredness to Dr. Johnson his face fell. Like he just got told he didn't pass a very important test that he was sure he did. The look on his face said a lot. He then asked me some questions about the pain etc. "Is it bone pain?" he says. Hmmmm... I don't know. How would I know? I tell him I think it's mostly muscular because I feel it after exertion. Like I vacumned the living room and then I'm sore for two days. He looks at me like I'm nuts. His fear is that during my time of herceptin cancer started resurrecting and is metastasizing to my bones. Oh crap.

In his way of thinking out loud; he said if so the question would be "was the treatment valid and just stopped to soon? or was it a complete failure?" Oh crap again...
But I said "what about my tumor marker?" "good, normal" he says. So of course I argue "wouldn't it be way up if that was the case"? He says "yes, but also maybe not.." Silent screams are going off in my head. He also points out though that I'm not anemic; patients with bone metasticies are anemic. So he says his plan for now is to put me back on herceptin and see how I am in three weeks and if he feels it necessary he will order a scan to see if indeed the cancer rose from the dead.

I tell him that I think I am just exhausted; you know like the rock stars get and have to go away for a few weeks? He laughs and says he "doesn't believe that exists and that he thinks I work much harder than a rock star."

After all this time I still had high blood pressure, it never went away again. So I went off to Dr. Alsup. He had not seen me in year. There was a lot of shock and awe when I strolled into his office. "Weren't you stage 4?" "Did you have a mastectomy, lumpectomy?" Once they got over the initial "what happened?" He began to prescribe stuff. He's one of those types. "here's a scrip for this, here's one for that, and this..." I came home armed with a new load of medications. Even one made from snake venom. Ha...take that blood pressure.

I've been adjusting to the new meds. It's taking a little time but it's a little better sometimes. I still have some things I need to fix that I'm sure is contributing to my pain. Like a trip to the dentist and the chiropractor would help a lot. I have those scheduled as well as the eye doc.
But even as I have been pinpointing all that; there is unexplained pain; especially around my rib cage. It hurts to breathe deeply, sneezing and yawning are torture.
Researching on the 'net I found there are two types of bone pain; metasitic and non-metasitic. Since I'm not anemic and have normal markers I think it is the latter. If not then I guess it's back to chemo or whatever Dr. Johnson deems necessary.

Today I had a short-lived break from pain. I take as much painkiller as allowed when I need it; which is all the time. But lately it's not taking all the pain away and is only making me feel sort of sick. But finally today after I got done working I sat down in my recliner while my son was building with his K'nex and relaxed and felt no pain! yay. So of course I dozed off.

Maybe 10 minutes went past before I awoke to a horrible banging. My delightful impatient son decided to wake me by banging on the chair. Both me and the cat flew at least a foot in the air. A hiss was heard and a slight scream. "Oh man...why did you do that?" I asked and he says "I wanted you to wake up and help me build". I said "but honey, you build all by yourself, you don't need my help." He says "yes, I know but I really enjoy the company." Sigh. The pain free state so far has lasted into the night. I'm hoping to get some good sleep.