Forward....march.....

So I have everything going, I think...I got to start my radiation yesterday...they called me outa left field & asked if I could come down & do the set up stuff with the mask & while I was there, she went ahead & knocked out the first treatment. Just like last time, the actual radiation takes like 4 minutes...it takes longer to get on the table...LOL...I did forget tho, today, after the second blast, how so verrrrrrrrrry tired it makes you. Absolutely like someone is sucking the oxygen outa your body. I have got to remember not to push it. They are much more concerned this time around about the swelling I have had in my head and to get it & keep it under control....that's pretty scary stuff....my brain swells....hmmmmm, & for once, it's not a bar joke.....but the steroids are managing that, we hope, and after tweaking the dosage to all the stuff I take to fight those side effects, it's running pretty well...I have gained 14 pounds in about 10 days....but I did start off at about 100lbs in the first place so I needed some butt on me to fight this....LOL!!!
I scheduled my first, and yes, I said my first liver procedure today. When I consulted with the radiologist who will be doing it, I was given a bit more reality than my oncologist gave me....first, this will not be one out patient procedure...he wants to do each side of my liver one at the time & then go back for another round on both sides. He tells me the tumors there are pretty enveloped and obviously so aggressive, growing thru the chemo I have been on, that this is the best chance to make the most impact. I will be in the hospital for 24 hours cuz he prefers to keep his patients for side effects monitoring from the whole thing. I'm hoping they have a massage therapist there while I'm on my day vacay....LOL
I kid, but, gotta say, this time around is scarier than before...
trust my docs, trust my meds...but most of all...trust my God!

Keeping it upbeat!

I now have 7 wigs that I wear...I still will wrap a bandanna around my head...but I've learned to lighten it up a bit and if I wanna try to look cutesy or girly, go for it...mind over matter!

Plan of action...I'm ready!

So after consulting with each other, my radiologist decided she was gonna handle my head & my oncologist would tackle my liver...it was a very busy week of doctors and tests and appt but at the end of it, we had a plan...back on steroids & hit the radiation. I went on the steroids immediately cuz my brain was also swollen & it would help that, which it did in the first 2 days...thank God that the roids were doing obvious positive things to me cuz they were rough last year & I was dreading them so bad. The relief they were bringing me this time in the pain though were making them worth any of the oncoming side effects I knew I was gonna get soon. Doc said we could treat my head with just steroids for a while but to be the most aggressive, going back & doing more whole head radiation could be done....I told her I wanted aggressive & funny enuff, she's been with me long enuff to have already scheduled it up cuz she knew that would be the road I'd want...okay, plan for the head treatments are made...3 weeks of whole head radiation...Monday thru Friday & then scan & see...
Now for the liver...I met with my oncologist & he came in so positive about his course of action, I couldn't help but be...he still wanted to get me away from chemo...ok, but I wondered how if my tumors were growing....he explained....he wanted to do a procedure like the one they do when they go in up your thigh to unblock clogged veins in the heart but do kinda the opposite...they would go in up my leg to my liver & blast the veins that had developed around these tumors to feed them & kill them, thus starving the tumors & killing them entirely...at least that was the theory, but dang, he was so certain this was gonna work...I was kinda excited about it since it would mean, if it did, I would be off chemo all together!! I was signed in for that immediately....he explained I could have the procedure done even while I was doing radiation cuz it was an outpatient thing...I'm thus far scheduled for a consultation next week to get it all pulled together...

New doc & more new of the old stuff...

So I don't know if I've mentioned it but my original oncologist left the practice...I started seeing a new one that I don't think is actually far off from my age. He is the one who thought we needed to get me off the chemo I was on cuz I'd been on it since the beginning. We tried a new kind for a while but....in February 2012, my newest PET scan showed that the tumors in my liver grew. Cancer shouldn't grow thru chemo, but alas...I also had a follow up MRI...hey, guess what?!? More bad news...small tumors back in my brain but this time, all over & now centralized...I was completely deflated & scared to death. Thank God for my Dad & stepmom cuz without them, I am not sure what kind of basketcase I would've turned into that weekend I got those reports. I also had my daughter's 20-something year old sister & husband walk in that Friday night & tell me they were moving into help me. My girl & I were having problems getting things handled with school & appointments & them coming in was just overwhelming to me! I was in way over my head by myself...

It's been a while...

I've been gone off my blog a while & it's not becuz there wasn't anything going on....I went back & read my last input & well, it's been a rollercoaster since almost that post.

Right after that post, my husband asked me for a divorce. He blames it on the gambling I did when I was in my depression but it's so much more than that. First of all, he's a gambler, so it's not like he thinks it's a token sin. I did do it quite a bit but NEVER put my family's finances in jeopardy. Secondly, part of my depression was from the fact I was always home alone with the kids. He was working 60+ hours a week & just almost refused to come home early or take time off. It got so that our kids only saw him on Sundays & that was spent with him taking only one of them to the bowling alley for most of the afternoon. It was lonely & I felt very deserted. If I dare mentioned anything negative about my attitude with cancer, he wanted no part of discussing it...it was over...he was gone emotionally...I resented it TREMENDOUSLY!! I spent July finding a home for me & my 2 kids. I fortunately have some wonderful family whose privacy I will protect by only saying, they are my angels. The love and support of my closest friends got me thru July & August & we got moved into our new home and, for the first time, when I had an opportunity to breath, I realized how much my homelife before was strangling me. The marriage had crumbled & with it was part of strength. I was slowly finding it again in the hope for a future with my babies...nothing to hold me back or to stifle me. Sure, the prospect of growing old alone was kinda a downer but growing OLD was actually the target now & THAT felt pretty dang good to want again!

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...