The roller coaster that is my life...

Now that I got you caught up on the medical aspects of my condition, it's time for a bit my depth into the psychology of my disease. I mentioned the depression at the diagnosis of the brain cancer and the hiding from the disease itself. Throughout the radiation and the first couple of chemos I thought I was done. My Mother got to a point she stopped all her testings and refused anymore treatments. I resented her for that for so long...I apologized to her last month....she died June 4, 2007...not from the actual cancer but from a complication of cancer, about 15 years after she stopped taking her tests. She lived it out her way. My chemo went so easily last year I really wondered why in the heck she didn't wanna fight for every breath she could have in this world. Then this year came. Though our situations were different, she fought colon cancer with reconstruction, I fought brain with radiation, the pain and the sickness had to be similar. I got to a point that I told my Dad and hubby that I was beginning to understand why Mom stopped it all and just wanted to live as normally as possible. I was getting tired of constant pain, constant wasting, constantly looking like an alien, and constant bad news. Just living a few months being normal, without meds, with hair, and no tests would be so refreshing. I really got why my Mother made the choices she made....I also had to realize that I didn't have the luxury of being selfish. It was selfish to leave me and my Dad without her in this world cuz she had no idea how very much we needed her. She didn't make that decision to be selfish though, she couldn't take it anymore and we had to be selfLESS and understand that we were grown adults, able to take care of ourselves...I have babies...a 1year old, 12 year old, and 15 year old that NEEDED me to take care of them. I have a husband that NEEDS me to help him raise them. I have a Father that can't take watching his only child die of the same disease that was responsible for taking his wife of almost 5 decades. I had to be here!! It reaffirmed my commitment to doing whatever it took to stay in this world for as long as possible. I wasn't quite ready to be the patriot of cancer again yet but I was ready to fight like hell for me and my family...maybe the desire to be an example would come back to....and ya know, I just realized...I got back to blogging tonite...maybe that 'example thing' was coming back to!! =)

Secrets

There were reasons for my improved situation that I was only made aware of on a 'need to know basis'...I guess I only needed to know when I asked...LOL...I had been explained to that the further away from the radiation I got, the easier the chemo would get becuz my head getting fried weakened my body tremendously and I hadn't had the time to recover from it before I had to hit the chemo again. I was waiting for that to happen and #3 seemed to start showing that progress...so I thought...after #4 was so much better, it was time to check my progress with a PET scan. It came back pretty good but not as good as I had hoped (which was remission, especially after my oncologist had told me that he expected to get this under control easily and after 3 treatments last year and much worse invasion I showed no signs of cancer)...that wasn't the case this time though and that brings us to today...
Chemo #5 and test results...I had a doctor appointment before chemo today. Doc told me that my results were no signs of activity in my chest cavity or pelvic area....okay....didn't expect there to be...the cancer in my liver was 80% gone...and he was thrilled with that after only 4 treatments...I reminded him of our progress last year after 3 and then I got to find out something new...he had lessened the strength of my last two treatments. He thought the nurses told me and they thought he told me....OOOOOPS....well, that explained the easier time of it and the boost in my appetite. My last labs only showed a 1 on my immunity level and even though I had felt fine and hadn't been sick, he wanted to see it boost to be sure I wouldn't pick up and infection that would be hard for my body to battle in that condition and it obviously worked since my labs today were up (not good but up)...he was also concerned about my eating...I am now down to 115lbs. I did explain to him that that used to be my normal weight and reminded him he had met me 3 months after delivering a baby that I had late in life and gained excessive weight with so he wasn't aware of my 'normal' weight. He agreed but still told me I needed to force feed myself back to eating on a regular basis to get off those horse potassium pills altogether. The man knows how to instill incentive in me...LOL...he also gave me some good news that he feels a few more treatments and get a good PET and it'll be time to give my body a break...he made sure to point out he said, give me a break, and NOT take me off chemo....he realized that he took me off last year and I went straight to surgery for my reconstruction, then found the tumors in my head and took radiation, and then went straight back to chemo for this relapse. My body needs a break as soon as possible. That was glorious news....just a bit more and I can take a break!!! Can't wait for that!!

Back to the poison...

Okay, it was time to start the chemo...my oncologist explained to me that the meds I would be on this time would not be as harsh as what I endured last year. That sounded pretty good to me cuz he had me on the harshest stuff he thought a body could endure and I really tolerated it well. No nausea, very little pain...I was ready, let's go...I even wore one of my wigs and make up to my first chemo...
It didn't go as well as expected. I had to take 20mg of steroids the night before which kept me up for a couple of days. I had lots of energy and thought it was going pretty well until 3 days later. I was taking treatments on Tuesdays and on Thursday night my body seized up. It felt like a hideous case of arthritis in all my joints. Then my mouth started feeling like hell...I couldn't taste salt at all...anyone who has eaten too many sweets know that after a while it will make you sick to your stomach...everything I ate tasted like sweets and it only took a few days to turn my stomach and make me ill. I not only couldn't eat, I didn't want to. I began getting weak and hurting worse and the first 3 weeks were unbearable. I began dropping weight quickly. My 2nd round of chemo approached quickly and I was dreading it. I had already lost 10lbs and felt weak. The blood tests confirmed that. In all my 8 months of chemo last year, my immunity levels never went down a bit. My first lab this time showed it was totally annihilated and I was immediately put on antibiotics. Three days later it was followed up by a phone call that continuing tests were showing my potassium levels low and I would need pills for that. I picked those up from the pharmacy and about fell over. These suckers were as big as my index finger knuckle and he wanted me to take 2 a day. Are you kiddin' me?!?! Food wouldn't even go down and I was supposed to swallow 2 of these a day?!?! I tried to no avail the first few days and couldn't even get one down so I started experimenting with different ways to take them. Nothing worked and I just began to try to take one. That worked most days. I told the nurse about it my 3rd round of chemo and they explained to me (along with my nurse mother in law) how potassium was vital for brain function....BRAIN...there was that word again that I taught myself to forget about for a while, but if this was a vitamin I needed to help my brain, then back to the drawing board. I began trying to take 2 again...it began to work swallowing them with milk. I also noticed that I was beginning to eat a bit better and that the 3rd round of chemo was alot easier and I only ached for 2 days of the 3 weeks....I was getting better!!! YAY!!!!

A little bit of cute...

Now last year when my hair fell out, I felt very empowered to be bald...after the weight gain and the baldness, it was just annoying this time & I decided maybe I should try some wigs...I went to the wig shop where this older but very eccentric woman had lots of experience fitting wigs for cancer patients...I took my 12 year old daughter with me and we had a blast picking out wigs in different styles, lengths, and colors and trying them on...I picked a couple out that I felt good in, one short, one long, and the lady even gave me a discount on them...I spent some weeks wearing them when I went out in public (more the short cuz it looked better on my round face). It brought me back a little further to feel normal when I wanted to....eventually in the first 4 weeks of chemo, my brows & lashes fell out again and I felt odd with hair on my head and not my face so I went back to predominantly wearing my bandannas....I still wear the wigs occasionally and feel good in them but it's only for special occasions. I still wouldn't recommend them for everyone, but if you feel it, buy one and try it out. I was shocked at the difference it made when I needed them!!

Waiting for light to get kicked in the head...

After my radiation, my radiologist explained to me that it would takes weeks longer for it to work. It would continue to bake in my head and keep my brain swollen and keep working so we wouldn't test for the results for a while....hmmmmm, how do I take that....do I remain depressed about brain cancer or do I push it out of my mind while there was nothing I could do about it and get the heck out of my funk for my family, as well as my self preservation? I did choose the latter and began coming back to the world....
Then I got a reason to refocus...it was PET scan time and I had every confidence that it was time for my continue good news...uh-oh...not the case...when the results came back, I was told I had a reoccurrence in my liver. The good news was that it was very small, very concentrated spots right outside the scars from the original cancer which meant my body was trying to contain it and my oncologist felt it wouldn't be had to eradicate. However, the bad news was, back on chemo....it was almost enough to knock me back into my funk until I remembered how well my chemo went last time...much easier than the radiation, no weight gain, and I had a sense of peace knowing that there was going to be medicine constantly coursing thru my veins fighting with my body. Okay, no depression...back to fighting mode...it was refreshing...

"It's Been Awhile"...another rockin' tribute (thanks Staind)

It has been a while since I posted...as anyone who has battled cancer for any length of time knows...sometimes you just need a break! It gets too much, time and time again of being told bad news...the first few radiation treatments seemed harmless and, for the most part, the actual radiation was...but those steroids...I started bulking up. I couldn't help but eat all the times and at the end of about a month, I had gained up to 155lbs. I'm 5'1" and was still heavy from inactivity after my pregnancy. I began radiation at about 135lbs when I usually teetered at around 125. I felt huge and bulky and at the end of my rope. I got huge pregnant, but I knew that weight would come off...I didn't know if this would...and to top it off, my stomach churned all the time. I couldn't help but eat and then I felt like crap on all levels. I began to get depressed and life sucked. I couldn't go out to feel better cuz I didn't fit in my clothes, and any chick will tell ya that that will sink your world when you can't ever feel the least bit cute. I was difficult on my husband and moody towards my children and the very last thing I wanted to hear about in any sense was cancer. You never realize how many shows have references to cancer on tv, or how many commercials are about it, or how many specials come on raising money for it, or how how many billboards are out there about it...it's everywhere when it is the last thing in the world you want to be reminded of. I went into hibernation throughout the rest of my radiation and hid from the world as much as possible...

Bustin' bricks...

Now to today. Today was brain fry #3. It has been exactly like they said. I walk in and about 7 minutes later, I'm walking out. The steroids are giving me a little boost in energy and I've found myself in overdrive at the house. I've figured out it's happening again. Just like when I was first starting chemo, whenever I felt good, I'd go into a cleaning & organizing frenzy. I've come to understand it's becuz of the total lack of control I feel I have over my body and I have to feel 'in control' somewhere. Oh well, the house is clean, the clothes are clean, the dishes are clean, and my closet is now organized.....guess it's all good for sumthin! LOL!

My first brain fry...

They girls at the office called me to tell me that my first appt would be a bit longer than the rest cuz they had to set up the measurements on the machine the first time. I went in and she put me on the table and put the mask on me. If you can't tell from the pic, the mask is actually locked down to the table so that my head cannot move. It sounded like a torture device but actually wasn't that confining. I couldn't move my head but the mesh was so open that it really didn't feel that confined. I can hear fine thru it and talk thru it so I was okay. She started doing the measurements & we chatted about what to expect...all the things I had talked about with my friend yesterday. It was nice to hear the exact same things from both of them. About 20 minutes later, she told me we were done with the measurement part and we were gonna do my first treatment. Be still and I'll be back in a minute. She walked out, flipped a switch, and a little hum came on for about 30 seconds. She came back in and switched the machine to the other side. She went back out, flip, hum, 30 seconds later, she was back. 'You're done!' She told me that was all it was gonna be from here on out with here. I could even bring my baby and the girls up front would push him around in his stroller for the total of 7 minutes it takes up to do this each day. Wow! Okay!

Radiation 101

First thing in the morning, I got a call from the radiologist office. It was a girl who happened to be the sister of my my Mother's best friend, the nurse at the doctor's office she worked at before she died. She had recognized my name on their appt book and decided to throw herself into action. She got my appt that day switched to the other office where we could get all the prep work done to start radiation ASAP, instead of having to spread it out over a couple of days. She also explained to me some of the facts of radiation. There are little to no side effects, with the exception that you hair falls out in the treated area. Yep, I was gonna lose my hair again. At least this time, I get to keep my eyebrows & lashes. There was some fatigue but with all the healing from the breast surgery, I'd prolly not notice that much & I was going back on the steroids to help that anyway. Oh joy, let's gain another 10 pounds! It was good to talk to a familiar voice though, and it did calm my nerves a bit.
Hubby took me to see the radiologist. This is the same woman I saw in the beginning who didn't want to do radiation cuz I had no tumors in my body. She's 6'5"...I'm not kidding....and just such a comforting soul. She explained to me first and foremost that I was NOT to look at this as 'here I go again' cuz that wasn't the case. Our brains have a saran wrap shield around them and these spots were prolly there before but the PET couldn't see them. Also, as far as chemo, the meds don't get to your brain becuz of that shield unless it is given directly into the spine for brain, which mine was not. My chemo worked beautifully just as it should and there was no reason to think that the radiation wouldn't do the exact same thing to these...gulp, tumors....in my head. She said she was very 'cautiously optimistic'. She also told me that we'd do about 3 weeks, every day but weekends, all over my head, then spend about a week concentrating on the one bigger one that was pressing against my brain that was surely causing this vision problem. She said if all went as planned, my vision would be just fine. Okey doke, then....
The nurse took me back and explained to me that we had to make a mask that would steady my head for my treatments. It was an eerie hot mesh that laid over my head and hardened. We finished that up in about 10 minutes and I was done for the day to report back to the closer office the next morning for my first radiation treatment.
I was numb. Brain cancer. Tumors. Radiation. It was hard not to feel like 'here we go again' but I had to keep thinking the same way as the first time....'Trust the doctors, trust the meds, trust God'

Another day the earth stood still...BRAIN CANCER

Finally the nurse came out and handed me this huge envelope with what looked like xrays in it. She told me my GP wanted me to bring these back over to his office....as I walked out & got in my car, I called my hubby. This can't be good. What would my doc need ME to bring these RIGHT over? Hubs tried to calm my nerves telling me not to over think it til I was over there. I went into the office & my 2 aunts that work there funneled me back to one of their offices in the very back cuz the doc was with his last patient. I sobbed. Then I bawled. I knew from their reactions something was wrong......very wrong.....again.....
Doc finally came in and wrapped his arm around me. He slowly explained to me that there were 'spots' on my MRI. These spots would need radiation. RADIATION?!? That means brain cancer!!! He tried to calm me down enuff so that I could understand that I needed to see the radiologist immediately and that the nurse was making me an appointment. He assured me that they were very small spots and he had every confidence in the radiation to take care of it.
I insisted on driving home alone. I needed time to clear my head. Unfortunately, clearing it didn't help...it just presented more questions. How did this get missed in the PET scans? Why didn't the chemo get it? Was it not there before and cancer grew in less than a month in my head? What's radiation treatment anyway?
I went home and fortunately, hubby was off and stuck by the kiddos and let me go to bed. It was almost as bad as a year ago when I was first diagnosed but this time I did fall asleep for quite awhile. Unfortunately for the hubs though, I woke up at 4am in terror!! Waking from a nightmare is a good thing....waking into one....not so good!

Screwy little eyeballs...

The last half of January I started getting a spot in my eyesight. It was like when you look up in the sun and it's a gray spot, but this didn't seem to be going away and it was always in the same spot. It made me nervous and I gave it a week to see if it'd subside. It didn't and I decided that, considering all my past experiences, that I wouldn't put off a visit to the doctor. I went to see my GP just for a visit & to show him the new pups, then off to the eye doctor...The eye doc took a look and said he thought I had a patch burned into my visual field from the optical migraines I get. Unfortunately, he thought it also would be a permanent spot. UGH! He still wanted me to go get an MRI to be sure all was good. I went that afternoon for that....I've never done an MRI and I gotta say...UCK! I'm not claustrophobic, I quite enjoy my PET scans where they strap me all warmly bundled to a table and shoot me into an open ended tube for a 30 minute nap...but this thing was different. I was on a table and they put ear buds in my ears (cuz it's loud), then they put my head in an open box & stuff it with cotton on both side. Lastly there's a plastic mask thing that goes over your face. The face thing I could handle but the sensory deprivation from everything being muffled almost made me come out of my skin and this thing last for 45 minutes!! I hated it!!! Not to mention the pressure that still comes down on my chest when I lay completely flat on my back for too long....oh well, it was done...finally....
The nurse told me to wait in the waiting room so the doctor could make sure it was done right. I sat there for about 10 minutes....I began to wonder what was taking so long....15 minutes, 20 minutes.....okay, my mind is just in overdrive now....

Been a while...

Well, I spent the better part of the last couple months healing from the reconstruction. It's been a bit rough cuz I'm just so sick of hurting all the time somewhere. Hubby keeps reminding me we are in the final stage and that it will all be over soon. I know he's right about the breast surgery but in December I had to get another PET scan and every time one of those roll around, I'm a bit nervous on what it's gonna say. No worries this time, though, cuz once again, it was clean!! We celebrated Christmas this year in grand fashion with a new outlook on the future!!