Farewell March..

I never thought in my situation that I would ever be wishing my months away, but March is one I am happy to see go. Let's see, it all started with the new scans. I was really hoping that my decreasing cansir markers also meant that I was really going into remission, but nooooo. I discovered that I still have a tumor on my liver, a very painful one in my shoulder and 1 in my brain again. So I am still on nasty chemo. it takes at least 2 weeks to recover from treatment. The drugs I am on now are called carboplatin, abraxane, xgeva, herceptin, and the day after I have these I get a shot of something called neulasta to boost my plateletts because my body is having a really hard time producing it's own. I don't think I have been this tired since the whole thing started. 2 weeks ago, I was feeling really dizzy, almost fell in the pool, found out that I only had about 1/3 of the red blood cells that I am supposed to have. I had my first blood transfusion. Wow, I felt so good after that it was amazing.Thank you so much to donors out there.
I am currently undergoing radiation treatments to my shoulder and will once again have SRS surgery to my brain in the next couple of weeks,possibly 5 days of it this time, I can hardly wait to see how I feel after that. That makes 3 times for the brain radiation. (((SCARY!!!)))
I am still working some and am so thankful for the time I can spend doing what I love. I am thankful for all of my time really, I am just soooo tired, tired of all of this.  I worry so much about the toll this disease is taking on my family. I don't think Rocco understands, but Ron worries so much.
 I freakin hate cansir, I wish it would go away and leave my family alone. Sometimes I feel like it is inevitable that things will slowly get worse, and then sometimes I still don't believe that I have this disease. Sometimes I think that if I don't think about it that it will go away. I think all of the time, not a moment goes by that am not trying to rationlize it away.
I lost another friend 2 weeks ago, Chris. she fought for 7 years, had brain mets just like me, treated with SRS just like me, 3 times just like me..finally they could no longer control it in her brain. WTF!!!!
this is making me nuts!!!!
I am having a new brain scan on Thursday, it is called a kuperman study, it is an mri that shows your brain in small slices.The purpose is to show the radiation oncologist excatly where to point the radiation. I am praying to the scan gods that I still only have 1 new one in there.
I seen  a nutritionist today, she is concerned that I am losing too much muscle, I am concerned too, but most days it is all I can do to get out of bed. So today I forced a workout and a swim. I must say I felt better after. Life for me is a fight, the fight for my life ,my family's life, this disease will eventually beat me, but for now, I am standing strong, fighting to exist.
I am praying for a brighter April....

Give me the beat boys and free my soul, I wanna get lost in your rock and roll and drift away...

Sometimes I wish I could get lost or just wake up from this reality that I am forced to face every day.
Lately, I find myself weary. I am noticing that I don't feel as strong as I did with the first rounds of chemo.
My numbers are coming down, but I am completely exhausted and nauseas most of the time. I have treatment every 3 weeks now with a booster treatment on the in between weeks, when my blood is strong enough to handle it. So far I haven't had to have any booster treatment because my bloodwork keeps coming back a mess. Currently, I am on Abraxane, herceptin, carboplatin ( I call it barfoplatin, because that is how I feel for about 5 days after treatment.) and xgeva. They are working for now. I have finally accepted the fact that this stuff is not going to go away, I will have times when it is in remission, but the nature of it, it always comes back. I am not being pessimistic, I am just being realistic. I know miracles happen every day and still hope that there is one for me, but I need a plan just in case that don't happen.
I am now completely bald again and I think I have about 4 eyebrows left. I bought myself a pretty cute wig, but I hate the way it feels, I wear it sometimes when it is easier than trying to explain cansir to people.
Next week I am going to start putting scrapbooks together for Rocco.I have tried to do this on numerous occasions, but find myself paralyzed to think that this is how he will remember me. When this first started I used to think that I would live forever . I used to think that somehow God made a mistake, how could this happen to me, I just adopted a baby, I have a business, a husband, I have a life.. but cansir don't care and neither do the bastards that have poisoned our world. I was at lunch today and met a young girl 24 years old who has been battling lymphoma for about 5 years, she has been to hell and back. But just like me she has to go on. I pray that God blesses her sweet young life and that she can will have time to achieve her dreams.
 Every headache I get, Iwonder if it is a new tumor in my brain, every time I cough, I worry that I have a new tumor in my lung.  it never ends..THIS IS TURNING ME INTO A CRAZY or should I say ( CRAZIER PERSON)) LOL!!! I have new scans coming up in March, I will let you know how it goes.
Today, I found ou that I may possibly be back in remmission, my ca-15 blood test came back at 20, WOOOO HOOOOO!!!! I have all of my scans sceduled to restage, my cansir coming up in the next 2 weeks. My oncologist is confident that I am once again going into remission. (( PRAISE GOD for that ))). She also said that my body is pretty beat up from the chemo, so we are going to try to take a chemo break after my scans. I am sooo looking forward to this. So for now I am at peace, completely exhausted, but so happy for the sweet time I have been given..I pray for the strength to glorify him in some way. God is good all of the time, sometimes I don't think I understand his plan, but I have total confidence that he knows exactlty what he is doimg. I hope he forgives me for ever doubting his power..
Have a blessed weekend, I already have..

Platelets, hemoglobin and walking 5 miles a day...

The past couple of weeks I have been walking 5 miles a day, for 5 days of the week with my friend Ally. It really makes me feel great. However at the same time, my bloodwork is coming back crazy. For the last 2 weeks I haven't been able to have chemo because of low blood platelets and hemoglobin. Platelets are produced in the bone marrow and control blood clotting, while hemoglobin and white blood cells fight infection. The thing that is so strange is that I feel great, you would think that I would be tired or something.
Anyway so I am back on massive greens and grains in hopes that it will start to straighten things out .Today I had to get a lovely neulasta shot,( which makes me feel like hell by the way ) to boost them back up.
Hopefully everything will be back in order by Tuesday so I can get my massive dosage of poison. Anyway, just a short post  to keep track of how I am.  Stay cool!!

Peace!!!

Happy New Year 2012

Dec 27th was my 2 year cansirversary. Hard to believe really. I am still fighting, but am very thankful to have had the first 2 years pretty easy. I started on new chemo the day before Thanksgiving that didn't work so am now on 2 new drugs and had 2 rounds of radiosurgery to my brain since then. I am doing ok though . I could make this post about how crappy I feel, but I am not going to. I am going to focus on the positive things in my life.
I had an amazing Christmas, the people that I spent it with gave me renewed hope. I am so loved. My family is amazing. My son is always so happy , I can be feeling so bad and then he will say something that has me hysterical and I completey  forget for a moment what I was miserable about in the first place. he is growing up so fast and what a remarkable human being he is becoming.
I intend to fight harder than ever this year for my health, my life and happiness, too many people love me and I cannot bear to think how badly they will be hurt if I don't get better.
This morning, I made myself take a long walk, tommorrow, I will do the same.It is crazy how much better this makes me feel. I have also started my green juice regimen again, it was tough to drink them for a few days, but I can tell a difference when I don't.
So screw you cansir!! I will not let you win..
Happy New Year to All, may this be the best year of your lives. I intend to make it mine.

Sending Love and Light!!!

Let the Games begin!!

In a couple of hours I will once again be undergoing a procedure called stereotactic radiosurgery. It is basically very precise radiation to my brain to kill the nasty little cancer lesions that want to live there. This time I have 9 new ones taking up residence on my cerebellum. Don't panic though, the procedure is really not that bad and I have the best radiation oncologist on the planet looking after me. The hardest part about is they have to put my face in a very tight mask and bolt it to the table. If you know me, I am usually a kind of hyper person , so having to be still for any length of time is a challenge for me. I also get to have this procedure 2 times this week because of the amount of lesions that I have. YIPEE!!!!
Hopefully this will wipe them out.
On the chemo front, I started back on taxol the day before Thanksgiving, but found out last Friday that it is not working. My cancer markers keep going up, which is not really what I wanted to hear, but just the same I have to deal with it.  So I started on a new med called Abraxane, which seems to be a little easier, I had it on Friday and other than a little fatigue, I have a pretty normal weekend.
I have been noticing the past couple of days that my hair hurts.. LOL!!! Really, it hurts, it feels like someone is pulling it, I know from experience that it is getting ready to depart. I think I am going to wait this time for the GI Jane look, in hopes that it will hang around until after Christmas. We are planning a trip to Boston and it is soo cold up there, I can't imagine what it will feel like bald.
I have been very angry about this progression and have realized that it is not fair for me to walk around giving everyone a hard time because I feel sorry for myself, I have even stopped going to church, because, I was feeling angry with God,. OMG, am I crazy, I know that he is the only being that can truly save me. I won't even try to figure out his plan, because whatever the outcome, it is the way it is supposed to be.
It seems like every time, I get really low, he shows me something to prove that my situation could be a lot worse. I was walking into Twin Lakes imaging last week for my umpteenth MRI and the minute I walked in the door I almost ran into a woman that doesn't have any legs. I felt like he slapped me in the head.At least I can walk.
 I am very blessed in my life, every morning I wake up to my wonderful husband who has really taken some crap from me since this whole thing started, but he is still here. My beautiful little boy, who is the light of our family and a very loyal old dog, who is 10 years old today. My life isn't perfect, but it is ok, we will get through this and I am anxiously awaiting the day that I can say the word REMISSION once again. Oh and I almost forgot, I  really can't wait to have beer and brownies again!!!

My vocabulary is getting larger..

It is amazing how many new words I am learning every week. They are not words I wanted to learn or words that I ever thought would apply to my own life, but just the same they are now a part of my every day
vocabulary,
progression, radiation, necrosis, tumor, ca25,cansir markers, protein, taxol, herceptin, arimidex, adriamycin, , tamoxifen, carboplatin, tdm-1, nausea, constipation, diarrea, hair loss, secondary cansir, primary cansir,
zofran, steroids, pre-meds, prognosis, quality of life, cranial swelling, nuclear medicine cat scan, pet scan, muga scan, radiactive tracers, efficacy, drugs that work, but can cause that, drugs that don't work, but still cause that.. brain radiation., co pmts, tykerb, xeloda, blood brain barrier, what crosses it, what doesn't..take this not that!!!!!
Eye Yi Yi!!!!
I just want to drink beer , eat brownies and take a nap...

BACK TO THE MOSH PIT

As my oncologist explained to me my current situation she reminded me of the voice of the teacher on the Peanuts cartoons. The MRI brain scan showed 5 new lesions in my cerebellum this time .My latest PET shows that I now have a new lemon sized tumor in my liver, a new one in my breast and one on my rib.After that she sounded like she was in another room talking to someone else.The problem with the drugs that I have been getting is that they don't cross the blood brain barrier , so sneaky little cansir bastard cells creep in to your bone marrow and go there to set up camp.  So once again I am facing SRS Surgery (radiation to the head) probably around the 2nd week of December. I can't even explain what this does to my head. Last time I felt like I was was walking in the clouds for about 2 months.For a moment I thought we would be trying new chemo drugs,that would cross the barrier and  wouldn't make my hair fall out again, but when they told me what I had to pay equaled $7000 month , I thought I would throw up. Apparently, because the new chemo is in pill form it isn't covered like the other drugs I have had  by infusion. I was also considered for a clinical trial to get the new super drugs, but wasn't accepted to the trial because I am  now what they call on 2nd line treatment. So I am hoping that the FDA will approve it before this stuff kills me. Our healthcare system is so messed up .Apparently the wonderful herceptin and tamoxifen that I am on has stopped working. When I have drugs by infusion it is a whole process. I go to the lab, blood is taken, if all of the numbers are ok, I am hooked up to an IV and my meds are inserted over about a 4 hour span. I used to call it my spa day. Now I call it my bullshit day!! The drugs that I am on now, make me feel like I am in a war zone.Now I have to get them once a week again. I start feeling better by about day 5 so I have approximately 2 good days a week. I pay a fortune for my health insurance and it gets more expensive about every 3 months. They keep raising my premium hoping they can force me out. Just in case you are curious, my insurance claims average about $250,000. so far this year. So the insurance guys want me gone. I mean I always knew that this day would come, but you never quite expect it and it never seems like it has been so long since this whole thing started. So here I go again, a new challenge. I started back on Taxol the day before Thanksgiving.I spent about 24 hours in bed after that. It just so happens that I have some kind of virus on top of everything else. I AM EXHAUSTED!!  & I should have a nice bald head again for Christmas. All I know for sure is that THIS SUCKS!!!!! I HATE CANSIR!!!
 I have finally made a decision to put my business on hold again as cansir has become my new career, I was at the doctor or treatment for approx 20 hours or so the past 2 weeks and have needed to sleep the rest of the time. My oncologist sent me to a new doctor at the Mayo clinic, he was wonderful but didn't really tell me anything that I don't already know. I must make a serious effort to avoid stress and to spend this time with my family. Stress plays a big role in this ugly disease, I didn't believe it before, but now I do. For now my life is at the mercy of drugs that will kill the cansir and probably me eventually .Another one of the women in my support group died a few days ago. She fought so hard. This makes about 5 since my dx.2 years ago. Did I mention before that the prognosis for people dx with stage IV BC usually is about 36 months? I figure I have had 24 good ones so far, so technically this could be the last year of my life.I mean I don't know that for sure, but how can I not think about it. I have a 4 year old for God's sake, how am I supposed to explain this mess to him. Whoever wrote the song about skydiving and Rocky Mountain climbing never had cansir and a 4 year old that will be left motherless again  and a husband who will be left alone to pick up the pieces. I hate that song, it is bullshit!!
 I apologize for the negativity in this post, but this is how I feel. I am searching for the blessing in all of this, I am sure there must be one somewhere.
So for now, I am fighting to put this damn disease back in remission. God Help Me!!!