Wednesday, September 17, 2008

another day, another adventure!

Today I began another treatment for breast Cancer stage 4. I am 52. I have been treated since 2003 for bone mets to hip and backbone. In 1992, I was dx w/mets to femur w/ breast primary. Ten years of unusual remission 1993-2003!

new meds are a combination of Avastin and Taxotere. I wanted to change out the Abraxane I took for four months (April 08-July 08), so he said he would continue Avastin and start Taxotere. Somehow my doc had written wrong orders, had to clear that up. My doc is great... a snaffu that would not have harmed me. That's why they always tell me what they are giving, before they give it!

I had forgotten to ask about all side effects, turn out they are roughtly the same as with Abraxane. Dosing schedule is different, which was my main concern. I had two days out of every week that I was out of commission, on a three week on, one week off schedule. I still work fulltime.. have too, and I like my job (teacher of students with mental/cognitive challenges)

Now I will take this new regimen once every three weeks. I am hoping for a less down time.

I fell asleep during treatment so they gave me the side effects page after I woke up. Treatment included a steroid that is given to minimize any allergic reaction, but then the steroid may keep me up tonight so they said to take "benedryl" to counter act that!!! I got some. They also recommended taking a supplement called
L-glutamine to support my body and hopefully minimize side effects of neuropathy in hands and feet and mouth soreness/discomfort. I got some of that, too, on the way home. We'll see...

Like I said, I was sleeping, and after being given quite a bit of liquid during that time, my bladder filled quite to capacity. As I was getting up to leave, I doubted I could I could make it the 15 paces to the ladies' facility, before the dam broke. I was correct!!!! What a mess. Well, being as my oncology office is on the cutting edge, they had some new scrub bottoms available, bless them! I was able to stop in to the drugstore reasonably dry with my mismatched bottoms. I chuckled to myself, and thought, I just want to get home!!!!

So here I am, one dose of benedryl down, one dose of L-glutamine down too, going to take some other herbal supplements to keep everything supported.

I guess others may have reacted to the excess moisture with more dismay. I am just different, I guess. Somethings are just funny to me. Not everything I experience IS funny, but I naturally look for the humor in it, as it comes.

Well I am going to take another benedryl and fall alsep in the tub!!!

Till the next time....

sasha

Thursday, August 14, 2008

a story

The New Year had just arrived. Oh, 1992 was going to be my year!! I had been a single mom for 4 years and had a few rough bumps with new relationships. I realized that I was looking for love in all the wrong places; what I needed was to learn how to love myself first.

I did learn....I learned a whole lot that year. I learned to live with a diagnosis of breast cancer, and not just primary breast cancer, which accounts for roughly 2/3 of those who are diagnosed each year, but with metastatic breast cancer. We account for about 5% of those diagnosed. Metastatic, or Stage 4, what did that mean? There are stages 5 and 6 right? Turns out that stage 4 meant advanced breast cancer; because it had already spread to my left femur (upper leg bone).

I was given choices by my oncologist even before I knew enough to ask what my choices were.
I eventually had a mastectomy, surgery to remove the tumor from my femur, 5 weeks of radiation to the femur, and 6 months of chemotherapy, leading up to an autologous bone marrow transplant (BMT)(using my own bone marrow) that took place in Tampa, at the Moffitt Cancer Institute in December of 1992.

But before that, I learned how to get my son, 10, and daughter, 7, ready for school and drive them and drop them off and then make the rounds of doctors, scans, surgery, unfamiliar medical terms, and so much unknown. I learned how to paint on my eyebrows and work with scarves, hats, and wigs to deal with hair loss. I learned how to laugh as I chose to live, so that my former husband wouldn't raise the kids!!!! I learned to dig deep into the recesses of my being and find the courage to face each day, as my children prayed along with their classmates for their mom to get better.

I did get better for awhile, which statistically was unusual, and had no symptoms after the BMT until 2003, when more metastases appeared in the hip bone. I have been receiving treatment since then, still working and being reasonably active.

Recently it hit me that I did not know other women like me...those living each day with metastatic disease. I guess I had too good of a support system with many friends and a close family! But I sought out programs at my local hospital to seek these other individuals who could share theri wisdom. But I couldn't find (sic) hardly any!! One facility told me they had had a Stage 4 group but it stopped meeting because of lack of attendance. Another one has groups but I am an anomaly.. most of the members are looking forward to ending treatment and do not share my concerns of knowing most likely I will one day die, as my mother and aunt did, of breast cancer.

It's like walking on a balance beam. I want to hope for the best, but I am going to prepare for the worst. I am hoping to bring awareness to our community that we are out there, and that we need services that are specific to our needs. I want to let other people like me know about the resources that ARE available on the web like www.mbcnetwork.org , to help link us together so we can be a voice like the original group of supporters amd survivors that led the way for more advocay, resaerch and awareness 30 years ago. 30 % of those diagnosed today with primary breast cancer, will eventually be diagnosed Stage 4. I want them to be ready.

Wednesday, August 6, 2008

this is maddening!!!!!!!!!!!

Well, I thought I had lost the first post, found it, was going to edit the second one, b ut here I am with a third one, saying never mind!!!!!!!!

slow learning curve, I know. Not afraid to keep trying, veeeerry important.

My 23 year old daughter will help me. Thats why I had her!!!!!!!!!!

My almost 27 year old son is helpful, as well, in other ways. (You know what they say about sibling rivalry.... can't say one nice thiong about one, w/o saying something nice about the other!!)

Are you happy now? hahaha.

I am tired!!
More later.

sash

lets try again

Ok,

I started this a few weeks ago. Couldn't remember how to get back in and post something. So I started from scratch to day. Then I lost my post. ARG, as they say in comic bookland.


Ok,


good news from the dr Monday, Aug 4.

good news!!!!!!!

hello,

here I go again. I started one of these a few weeks ago, but forgot the way to get back in!!!!!!!!!


I went to the dr Mon, Aug 4. The results of my latest scan showed no active cancer at this time!!!!