What a difference a year makes!
ONE year ago today, I was "Rosie the Riveter" for the whole day, helping to register 778 women and young girls dressed as Rosie to set a Guinness World Book Record at the Willow Run Airport in Ypsilanti MI as an effort to help out the Yankee Air Museum. It was a long hard day, and something that Cancer will never take away from me!! While I was tired after the event, Mike & I managed to go out to eat afterward, and I was semi-productive the following day.
At the time of that event, my tumor markers were at 46.5 for my CA-15-3, my CEA was at 1, and there were no new signs of tracer uptake on my bone scan of April 1st 2014. In other words, I was STABLE, despite having had to have a titanium rod inserted into my right femur bone just 4 months prior.
Today, the first anniversary of what our Governor; Rick Snyder, had declared to be Rosie the Riveter Day in 2014, things really look different.
My husband (Mike) and I participated in a small craft & vendor show yesterday in town. My most recent scans are showing progression into the marrow of my LEFT hip joint area, mainly on the femur ball where it joins the hip. Also progression with new or larger spots on the left ribs # 7 & 9, Increased arthritis spots throughout the spine, ankles, elbows, and my fingers are getting nodules on them from osteo-arthritis. They itch horribly if I do not take my Zyrtec daily. My CA-15-3 tumor marker has been up as high as 141 (anything over 32 is considered "HIGH"), where when first diagnosed, it was at 117. March labs have it now at 106, so it is coming back down, and the CEA now at a 2, but the scans show new progression.
After one day at the show, I ended up in major distress (to me at least) with my right knee tender and sore, on ice most of the day. The vein going down my leg is very visible and BLUE today from being on my feet yesterday. I've got my leg braced when not on ice and stuck on the recliner unable to be productive other than here on the laptop. Thank Goodness for WI-FI !! Basically, I feel like I've been defeated compared to one year ago.
Today, I had intended to participate in the celebration with my ROSIE friends at the local diner that supports our local ROSIE the RIVETER's and helped to make scarves and backdrops with my sewing machine over the past month, even loaned out one of my 18 inch dolls in a special outfit to have her look like Rosie to be on display... and ended up sending my regrets that I could not join them after all, due to the pain and lack of energy in my body after one craft show of 6 hours the day before.
As I look upon SPRING and all the yard work, gardening and outdoor activities that are just around the corner, normally; I would be excited. This year, I am wondering how in the HELL I am going to follow through with these activities. We are hoping to find a "real house (we live in a mobile home in a MH Community) where we can have our garden in our own yard, as opposed to at a relative's 10+ miles from our home, and have more space to do our hobbies and have family come visit. A home we can modify to accommodate my future handicap needs like ramps, stair lifts, etc.. Of course, the only income we have to speak of right now is my SSDI as I cannot work anymore, and Mike has injured his back to where he can no longer do the only work he knows how to do without severe pain. He also feels he needs to be close to me in case something happens, like Heaven forbid, I fall again. Part of me wonders if it would be a good idea to purchase a home at this stage in my life, if it can even be done with our income, and then I think, Damnit, I do not want to spend my final years in this "tin box" we call home. Talk about your Catch 22's...
This is the life of someone living with Metastatic Breast Cancer. While we may look healthy to you when you see us on occasion, or in photos on social media, you cannot SEE our pain, our bones, blood, organs, and our major depression that we encounter over our lives being slowly taken away from us. Our loved ones feel they are slowly loosing US because they cannot do anything to HELP us feel better. No little PILL will take away the depression, the anxiety, the ANGER we have over this happening to our body, our LIFE.
In addition, there IS NO little pill or iv medicine that will CURE us. My doc wants me to switch my anti-estrogen medicine, as apparently; the one I've been taking is not working anymore. I'm so not into the idea, after all; I've had zero nasty side effects for the past almost FIVE YEARS on my Arimidex. Reading up on the options ahead of me, and their lists of possible yucky side effects just sickens me to think about having to face that for daily life after having had it "so good"! It's bad enough, having to have the monthly infusion of Zolendronic Acid pumped into my veins to attempt to keep my bones strong, and only being able to use my right arm since I had my lymph nodes removed in 2000, when I was first diagnosed with Stage I Breast Cancer. You see, having had the nodes removed means I am at risk for infection and something called "Lymphadema" if I get an infection, so no needles, no blood pressure cuff, no mosquito bites, kitty scratches, etc. can be allowed to happen to that arm... not an easy task for the rest of ones life I tell ya! The option we are considering for this medication change, is an injection in the muscle (the buttocks) once a month as opposed to a daily pill. Some of the SE's that are to be watched for on this medication can include, but are not limited to: injection site pain, nausea, muscle, joint, and bone pain, headache, tiredness, hot flashes, vomiting, loss of appetite, weakness, cough, constipation, shortness of breath, and increased liver enzymes. Not nearly as bad as some of the other options that I will face if this medication does not help get my cancer stable. I already deal with muscle, joint and bone pain from the cancer itself, and the medications I am taking now give me issues with constipation, tiredness and have put me into early menopause years ago... so I really don't look forward to going back to hot flashes! What is, is though. This medication has minimal SE's to consider, so I think this will be what I select for my first change of treatment. Of course, I have plans over the next several months and don't want to have to feel sick during those plans! That includes a major Fundraising Craft/Vendor Fair on Apr 26 in Ann Arbor to help raise awareness and funding for METAvivor for MBC Research and my step-daughter is getting married in July, so I can't be sick for that!!!! We have looked forward to both of these events for some time now, I'd like to put off changing till after all that, but know that the bottom line is I should change treatment asap to make sure the medication can start to work sooner. My health and life should come first, right? (I'll post more later about that Fundraising project).
For anyone that personally knows me, I am a stubborn woman, of Full German decadency. Some say I'm stubborn, some call it strong willed... either way, I refuse to give up or give in and insist on doing things I probably should not... which could really be a problem in this case ;)
My goal starting today, is to try to post here once a week, to help further chronicle my story. To share with people what this journey really is like, it sure as HELL is not pink ribbons, parties, and being able to walk for 3 days with a bunch of people to raise awareness... nope... I can't walk 3 blocks, and as I tell everyone that tries to get me to play those stupid Facebook games that supposedly raise awareness for Breast Cancer; I am more aware of this disease then anyone should ever need to be!
For now, I close with a reminder, to always listen to what your body is telling you. NEVER let anyone try to steal your thunder and ALWAYS --- let your loved ones KNOW DAILY how much they mean to you. We never know when tomorrow will be our last tomorrow.
Thanks for listening to my ranting :)