So today, I am attempting some laundry (only out of sheer necessity), have both knees lightly wrapped in gauze w/ pure bees wax salve on the wounds from my fall. I look around the house and see all the leftover project mess from my dress making for the wedding, and the carpet needing the attention of the vacuum, dishes piled up on the counter, and don't even get me started on my flower beds that have been neglected this year... but here I will sit with my 2 bottles of water, my laptop, and my ABC on TV. I have my cell phone and cordless phone on my end table should I get up, I must carry one with me in case I fall, since I am presently home alone. I might attempt to get some photos edited and added for the ETSY Store... just to feel productive. After all, I do all these things to occupy my mind, and have something to do since I can no longer work a normal job where I can go and forget about my illness, my pain, and my uprooted way of life. I am writing this blog as part of my productivity, for awareness, and to help get the word out for anyone that might wonder... what is life really like for someone in "MY" situation. I don't make much, if any money from any of it, (my store and handmade products) but it does give me a feeling of accomplishment, and that there will be something of me left behind when it comes my time to go be with my parents once again. I admit that for the first time in a while, I cried myself to sleep last night with all of this going through my mind. The bitter acceptance that this IS my life. And I will never be "the old me" again. I will never DANCE and enjoy swaying to the music, run to the arms of my loved ones, SWIM freely without pain and agony, walk without fear of falling, or do many things that a woman of nearly 53 should be able to do without hesitation.
THIS is what living with Stage 4 Breast Cancer is like. One day, you are on top of the world, having the time of your life, happy and glowing. Then you take one step too many, or think you took the step but your leg did not move, and you are literally flat on your face in the middle of the road; and you fear taking another step without someone to hold you upright. I do have my walker to get around with outside of the house, and will take it with me again to game #2 tonight. My wonderful grandson came to my assist when we arrived yesterday and helped me get down the grassy hill to the ballfield...as hubby was parking the truck at that time, (poor design for anyone with a handicap ballfield down in a valley) and we enjoyed ourselves despite the obvious... I hate having to rely on a device to help me get around; be it a walker or a cane. I hate having to have a handicap ramp for a front porch because I am not able to walk up or down steps. I want to be able to walk upright to my KK's games, sit on the bleachers with the other grandmas and parents, jump up and cheer out loud when she hits the ball, and pick her up in my arms and swing her around at the end of the game when they win or loose. Instead I must sit in a padded folding chair with back support, and the cushioning for the bones in my bottom and hips that are filled with tumors. I have not picked my grand daughter up in my arms in over 3 years, she seldom is able to sit on my lap so we can read a book together because the cancer is in my leg and hip bones and is too painful. This is not fair to HER or to ME. I hate this. I hate that it feels like she is afraid of me because I have cancer.
I am Not trying to be a downer here, but sometimes, I feel people just do not understand what it is WE go through physically, or emotionally with this disease. I try SO hard to NOT let it RUN my life, but the reality is; it does. I guess I just wanted people to know that about me. I am not a super hero, I am just me. A Daughter, A Wife, A Mother, A Step-mother, A Grandmother, A Aunt, A Cousin, A Sister, A Sister-in-law, A Friend, A Neighbor, A Crafter, A Seamstress, A Gardener, and a woman, living life with Bone metastasis and lung metastasis from Breast Cancer.
To Clarify a few things that have been asked of me: I DID find the cancer early enough, in 2000. I went through surgery, chemo, radiation, hormonal treatment, and physical therapies... I was CANCER FREE for 10 years. Until one day when I woke up in pain...on my stepsons birthday no less... and this has been my life now for the past FIVE years... Breast Cancer spreads to other body parts and is still BREAST cancer... it is METASTATIC Breast Cancer and that is what I live with, and will always live with unless by some MIRACLE, a CURE is found. I LOOK healthy on the outside. I am not all grey skinned, bald, malnourished looking nor do I look like someone that has been given nuclear waste for lunch every day. THAT is a stereotypical image of a CANCER patient. I receive treatments monthly to strengthen my bones, and to eliminate the estrogen that feeds the cancer cells in my body. I also take medication for moods swings that are caused by the hormonal imbalance I was forced into, as well as the sheer depression and anxiety that one living with a terminal illness faces on a daily basis, and neuropathy from the nerve endings being damaged by the many holes in my bones and the osteoporosis that is caused by the bone strengthening treatments that are infused into my arm once a month, every month. I know people look at me and think, "She is not sick, look at her" or "her bones are fine, she can walk and sit and stand..."... My cancer is not on the outside of my body, I do not presently receive chemotherapy so my hair, while it has been cut short and continues to thin and has ZERO body to it, is not falling out of my head requiring me to wear a "cancer wig". I cut it short because I have pain in my shoulders and it is easier to tend to than when it was long. I have been on this therapy treatment now since May 2010, FIVE years. I have surpassed the "average lifespan" for someone in my situation, so I guess some would say I am living on borrowed time. I want to be here a LONG time... so I do not drink alcohol because it FEEDs the cancer and can COUNTERACT with my other medications, such as my pain patches I wear beneath my clothing to help ease the bone and nerve pain I feel daily. I try to eat healthy, though sometimes I will indulge in some good sweet dessert or something fattening... but I avoid Sodas especially the "diet" ones because they are full of chemicals and make me feel ill... I believe had I avoided them in the first place, my chances of being where I am today would have been much slimmer. So yes, I try to 'warn' my loved ones now, to share with them what I have learned the hard way, in HOPES that they will believe me, and they TOO will take a step to improve THEIR life in their FUTURE. I'm sure they just see it as "mom is being a nag again"... LOL NOT the case, I assure you! I NAG because I LOVE...and I have learned the hard way, and do not want to see anyone else have to endure what I have thus far, and will continue to until I am gone.
The photos in this post are from my most recent bone scan and CT Scan done in early July 2015. During this scan, the radiologists determined the nodules in my lungs that they had thought to be stable over the past 5 years, had in fact grown. Not by much, but enough to indicate that it is cancer progression to the lungs. The hot spots you see on the bone, (bright white) are either tumor sites or arthritis sites w/ tumors combined. You see the Titanium Rod in my Right femur that was required in November 2013 after an xray found a hairline fracture that I thought was a pulled groin pain from my physical therapy that year. The rod was required because the tumors were so involved in the hip/pelvic region near the fracture and if it were to spread, it would require a hip replacement, which could cause the cancer to spread even further. That rod placement makes it very difficult for me to rotate my hip, and apply full weight on that leg as the fracture is still present, the rod is simply there to add stability to the leg so it does not shatter completely at some point.
I have also included an image I found online of a "healthy skeleton of a female adult" to show the difference in "her" bones and "MY" bones. I am hoping, that these images will help someone better understand the next time they may meet someone like myself, with Metastatic Breast Cancer; that they won't necessarily SEE their illness. It does not mean however; that it does not exist. I am sharing these in hopes to further educate the world, as to WHAT it is to have BONE METASTASIS. Cancer that is in the bone, but is not BONE CANCER. It is treated with the medicine that treats BREAST CANCER because that is what it is made up with. It is not cureable. It does not GO AWAY. It will be what many of us, including myself, WILL DIE FROM. WHEN, we have no clue. I have known many like myself to be vibrant and enjoying life in the past 5 years, and are no longer with us today. That scares me. I don't want to die. I am not ready to leave my family. I don't think I will ever be ready for that. So for now, I try to spend every possible moment with them. Even if it is just sitting and watching a softball game, or hanging out watching tv with my grandkids, or visiting my daughter where she works for lunch w/ my hubby. Every minute spent with them, is more precious than anything to me. I do not take any of it for granted anymore.
DID YOU KNOW.....?
At present, there are 180 people dying DAILY from METASTATIC BREAST CANCER. At present, approximately 2% of the funding from your popular "pink ribbon campaigns" is applied toward RESEARCH for ANYTHING to do with Stage 4 / MBC. With nearly 30 % of the men or women initially diagnosed with breast cancer in the early stages eventually being told they have progressed to stage 4, don't you think it would make more sense to raise that percentage for funding to at LEAST 30% as well? Find out how YOU can help make that happen. You may donate to METAVIVOR_ to help them make this possible. 100 PERCENT of their fundraising dollars are applied toward RESEARCH GRANTS specific to this cause.
That is my wish. A Cure for future generations of my sisters, nieces, daughters, mothers, Aunts, Uncles, Dads, and all... for no more spreading of Breast Cancer to other parts of the body resulting in imminent death from this disease. While I believe death is inevitable, at some point in our life, I believe we should have some LIFE to LIVE and LOOK FORWARD to without the HELL of living with ANY CANCER... let alone this one. Helping to spread the word by sharing this blogpost, would be one way of helping to further educate the masses. Are YOU afraid to tell the world about Stage 4 Breast Cancer?? If not, all you need to to is share. :)
#Stage4needsMORE #MBCKills #DontIgnoreStageIV #ItsMOREthanPINK #WagingWARonSTAGE4 #METAVIVOR #LIFER #MBCN.ORG