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!!!

Blah Blah Blah

I am getting really tired of having cansir. I mean, don't get me wrong, I am thankful that I have responded to chemo so well and that God has blessed me with 2 more years of my life. I am just exhausted, tired of constantly having test.Tired of devoting about 5 hours of my life every month going to doctors and chemo and labs. Tired of constantly being exposed to more doses of radiation which inevitably will give me more cansir. Tired of what can happen, what might happen, what might not happen. I am tired of walking into a room and people looking at me like I am a lepper. I am tired of people judging me and whispering about how I am crazy since the cansir. Well I have news for everyone, I was CRAZY before the cansir. If you are wondering what brought on this rant, I just want to be normal again, I don't want to be tired all of the time and constantly have to worry if I decide to eat a hot fudge sundae or a cheeseburger. Wonder if it will make me come out of remission. I want to get botox again, have a facelift. I want to go out in the sun without getting burned. A lot of people say that cansir has been the best thing that ever happened to them. Don't believe it, I mean maybe the ones that are cured feel that way, but not people like me for which there is no cure . I will continue this battle until it kills me. I won't give up, but I am not always going to be happy about it. THIS SUCKS!!!! in the worst kind of way..
OK, I feel better, I must go to work now.

Cruising at a boring normal..

Since this is breast cancer awareness month I felt compelled to post. I haven't posted in a while, I really have no new news on the cansir front. I continue to be in remission which is AWESOME!!. If I didn't have to go to chemo every 3 weeks, I  would forget all about this damn cansir.   My hair is now about 3 inches long, I actually had a ponytail on the top the other day (( LOL!!!)  If I am feeling really brave I will post a picture of that later.
I really wanted to post this for everyone that has been touched by cansir. I feel so blessed and that I am one of the lucky ones so far. My prognosis was pretty grim in the beginning and when I was dx with brain mets, I though my whole world would come crashing down around me. But , it didn't, God continues to bless my life in so many ways.
I  am a new vegan, it is not too bad, I am actually enjoying, the challenge. My doctor said that I now have to lose all this weight, that I have gained since dx. Apparently, it can help me to stay in remission. I am planning on starting hot yoga in the next week or 2. My goodness I hope i don't have a hot flash and pass out in there.. LOL!!!!
So to all of you who are walking, running zumba-ing, fundraising, I am sending a big fat kiss your way.
Thank you..

When fear creeps in..

This week 1 of the women I know from chemo passed away and another woman who has been fighting
the same amount of time as I is in hospice. It seems like it wasn't that long ago, I was talking with them and they were both doing well. I say to myself, how can that be? Is that how it is going to be for me, here feeling great for now, and then just 1 day, I get sick and it is over. How can that be?? HOW CAN THAT BE!!? I am so sad about this. I just want to scream..  Am I fooling myself, am I in denial about what is probably inevitable?? I must stay strong for my family, I must.  May God give me the strength I need to to survive this damn disease.
Rest in Peace Barbara, I am praying for your family. Judy, I hope your last few days here are peaceful. I know there is a painless beautiful place waiting for you in heaven.  GOD BLESS!!!!!!!

My Blessed Life

It has been a while since I  posted anything new to this blog . I have been so busy back to living this amazing life that God has given me. I recently had the opportunity to spend 5 days with some dear friends at a photography conference in Arizona. We laughed and cried , I made new friends and had the much needed time to reconnect with some old ones. Although I am completely exhausted my heart is full.  When I got home my wonderful husband a sweet little boy were waiting for me with open arms. I often ask myself and am trying to figure out why God has spared my life, I know that it is because there is something that he wants me to do,  Until then I will try to do the best that I can to serve him and teach others about what I know.
Hallelujah!!!!

Mother's Day

I am writing this post today because it just occurred to me how we are all intertwined

in this journey of life.  As women we play so many roles day to day, we work, take  care of our children and families and try to be responsible for the happiness of so many others. Yesterday, my husband , son and I went to my studio to take a family portrait. It was very hard to get them to cooperate and to get good images on self timer, but it was fun and I think I will make it a yearly tradition. When we were viewing the images later on last night, the fun was all they remembered. How cool is that!!  As women we are powerful, God knew that, that is why women have the babies and the responsibilty of taking care of our families. As a photographer, I have witnessed this same scenario over and over, sometimes it is hard to get everyone together but in the end all that matters is is the laughter. I hope you all had a wonderful day..

May

Wow, May already. I can't hardly believe it. I used to think that time went by too quickly, but now I really do. It has been 1 year and 5 months since my cansir dx., and April was 1 year since I have been in remission. Crazy, it seems like a blur. On the health front, I am doing ok. My cansir seems to be happy in remission right now, I hope it stays there. I am still having treatment every 3 weeks and have recently been dx with RA, which is a lovely side effect from the cansir drugs. The rheumatoid arthritis has caused me to get a bad case of carpal tunnel which I will be having surgery on sometime in the near future. But all in all, I am doing really well. My oncologist sent me to a nutritionist, because I got too fat on the steroids.(LOL!!)Funny thing about cansir, my kind anyway, that fat can cause it to come back. So I am really trying hard to get it all off of my body.I recently had another birthday and I am proud to say that I am 47 and cannot wait for the next and the next.I will be celebrating my 3rd Mothers Day and my 21st wedding anniversary next week. Wow!!! 21 years, that man really loves me!!
I am so blessed.

God is So Good!!!

I am so happy to say that I  am still officially in remission. I had a very stressful week. We cansirites call in Scanxiety. I swear I had a headache for a week before yesterday, I just knew that they were going to tell me that I had more brain tumors. But they didn't , WOOOOOOO HOOOOOOO!!!!! My oncology nurse also called me as soon as she received my PET scan report to let me know that everything is still stable. How many healthcare providers do you know that would go out of their way to give me the news asap ? The staff and doctors at Halifax Oncology ROCK!!!!!!! I am so lucky to have them in my corner. 
So to all of you, have a wonderful weekend,, I am going to get out and enjoy this amazing day that God has given us.

A story of Hope..

I just read an article from a woman named Katherine Russell Rich who is a 17 year survivor of metastatic breast cansir. Her story is one of hope. Some of what you are about to read comes from her book.  I am inspired and completely get what she is saying. So enjoy.
I deeply believe that there is no such thing as false hope: all hope is valid, even for people like me, even when hope would no longer appear to be sensible. Life itself isn't sensible. No one can say with ultimate authority what will happen with cansir ,a job that appears shaky or reversed fortunes .So you may as well seize all glimmers that appear.
Not to say that having stage 4 cansir is easy. It is tough, the waiting for scans, the pain, the drugs, the side effects, the not knowing what the future has in store for you. The dark days. Trying to plan for what might or might not happen. Some days I worry so much about what will happen to my family if this stuff decides to kill me. I try not to have too many days like that, but sometimes they just sneak up on me.
This past year I have had the joy of watching my sweet little boy, grow taller, get smarter ( he is so smart ) and learn how to talk . He is amazing. I also realized that my marriage is so strong and built on a foundation that only God has the strength to provide. I have a new appreciation for my family and friends. I am so excited about my work. I savor the opportunity to create someting beautiful for people that they will have for their lifetime.
I have new scans coming up on Feb 7, please say little prayer for me.
Wishing all of you blessed day. Do something today that makes you heart sing..