Hey y'all...it's me....
These words have been swirling in my mind since last night and I actually had a different title for this one though the curse word was rather harsh and I didn't want to start out with such a bang. First before I begin lamenting on again, I need to say THANK YOU. These trite words are not nearly enough to display the gratitude I and my family feel. I have been carried through these last few days on the wings of your prayers, positivity, mojo, good energy and love. I realized this morning that you are my tribe, when yesterday I said I don't belong to anyone, this morning I woke realizing...you, my family, friends, readers....you are my tribe and I am forever humbled by the outpouring of everything I am receiving.
So...let's get down to the nitty gritty Metastatic Mayhem that is now my life. I am sitting front row and center on the cancer train, barreling full speed ahead, destination - well hell, we don't want a destination because that means things we are not going to talk about yet. For now, I am going to do what I can to hunker down and just enjoy this ride....maybe my train conductor could look like Ryan Gosling or some other famously hunky man. But I digress, again.
When I walked in at the hospital and saw the staircase leading to the 2nd
floor cancer center, all I could think of was that I cannot climb these
stairs. This is too much to take on but I snapped my photo, went up, checked in, and suddenly I thought "this shit just got real". A new sense of anxiety blanketed over both mine and my husbands shoulders....the weight was 200 hundred pounds at least and I think we both carried it around all day.
The news....yesterday I met with Dr. K, his nurses and social workers at the Cancer Center. I had more information thrown at me, I thought my brain was going to explode. All of a sudden, I was learning a new language with words and phrases that I swore were not in English. I felt like someone switched the station in my head to Telemundo TV. Let's start with the positive.....the outcome of the biopsy showed nothing more than what was expected, no other organs seems to be affected, Dr K has so many options in his medical bag that it gave me hope, and we will be starting treatment right away...the waiting is almost over. The downside - look at what I did there - I didn't say negative....I am literally patting myself on the back for that positive moment. OK....downside....this is a stage 4 metastatic breast cancer in my bone. The cancer itself is ER/PR + which means it is estrogen / progesterone positive. Those 2 hormones are what feeds my cancer cells and helps them to grow and multiply like dirty little fuckers. OK, folks move your eyes away from the number 4, close your mouth gently so you don't bite your tongue. I know it's scary...I personally now have an utter disgust for the number 4. I am sure Sesame Street would sing some song to me over the benefits of the number 4 but I will never see it the same again. My cancer is a stage 4 because it has progressed outside of the originating cancer site - my breast and advanced to another organ. Stage 4 metastatic breast cancer is not curable - those words are hard to swallow but it is treatable and that is what I am running high on right now.
My treatment will be 2 fold - the ultimate goal will be to rid my body fully and completely of estrogen. WOOHOO....menopause I am coming back....let's throw a party! I just can't wait. I will receive an injection on Thursday to chemically shut down my ovaries, I will receive this injection monthly until I can get my ovaries removed. My goal, because I am not letting the pink cancer grass grow under my feet, is to try and have the surgery ASAP....it is in the works. I will also receive another monthly injection to help strengthen my bones. With the cancer being in the bone, we have to watch for the outer layer of my bone for degeneration, we want to keep that outer layer strong to protect my bones from becoming brittle. Lucky me that the bones affected are not bones that take on a lot of stress - meaning things would be different if it were in my femur or tibia, for example. The next part of my treatment plan are 2 oral medications. The first one is an aromatase inhibitor, this drug will help to block the estrogen in my body further depriving the cancer cells of their "food source". The second one is called Ibrance - it is a drug that inhibits the molecules that play a role in the cancer cells growth. It is this "cocktail" of medications the doctor feels will give me my first chance of remission and it also shows promise of longer periods of remission status.
There are a few other things I need to get taken care of besides my surgery. On Thursday I will also have an MRI of my full spinal cord and brain. Dr. K is more concerned over my spinal cord as the little cancer fuckers are littered throughout my spine and he would like to get some better images for a baseline. I will also have a baseline blood test for tumor markers. All of these tests, including the bone scan will be repeated in 3 months. That will be my stop gap....in 3 months time we are hoping the little fuckers are all fucked out and dormant. If not, Dr. K will alter my "cocktail" and we will go at it again. This will now be my life....forever holding my breath....forever waiting on some test....forever praying for remission. My life was just put on pause and I think the button broke or is stuck or lost - damn this cancer crap. And by the way....I would rather have a frickin' margarita for a cocktail - just saying!
Dr. K patiently answered all my questions, quietly waited for me to catch my breath as I was holding back tears. I told him I purposefully wore mascara for him so I wouldn't cry....I was marginally successful. We have some options for pain management for now however Dr K is really hoping that once treatment is underway my body will respond and my fevers, chills, pain, hot mouth, fatigue, and weight loss will be better. The other shoe falling from the sky is what will the "cocktail" gift me with in regards to side effects. It is yet another unknown and frankly a present I would like to return but I'm not sure where to send it, address unknown. Menopause will bring about it's own fun party tricks, as for the rest, it is another waiting game....in particular concern, the impact on my migraines. Please GOD don't bring them back ten fold....it might just do me under.
We talked about time....this is a number that I was focusing on much of my day yesterday. There was a neon sign flashing in my mind.....but as Dr K reminded me....it is really another unknown. So much can change, good or bad so instead of looking that far ahead down the track, I need to look at now. Again, I am only marginally successful. I took all this in, John and I had lunch, chatted, reached out to family and friends but honestly it's not real. I mean, I am not crazy, I know what is happening, it just feels like an out of body experience. In a matter of a few short weeks, I went from a pink warrior survivor to a lost cancer patient. I still identify with the color pink but I no longer am part of their army. I am walking the combat lines, looking for my army but I realized no one talks about Metastatic Breast Cancer. There are others out there like me, I know that but this cancer doesn't have a voice. It is the ugly step sister to the Cinderella pink fairy tail. It is the scary breast cancer, the one that may drive the research but there are no voices talking about this life, this fight for life, this rite for life, this fucking terminal breast cancer.
My husband seems to feel that maybe this is my purpose. If we cannot explain why bad things happen, why God has chosen this particular path for me, maybe God is encouraging me to find my voice for this disease. Maybe I can bring hope, change, awareness, and understanding to the something hushed and unspoken. I don't know if I agree with John, I just know that writing clears the demons, gives me hope, and reminds me to find a way to push play on my life once again.
My day yesterday was fraught with so much but one thing hasn't changed. I am still a mom and so after all the crap, the talking, the calls, the crying, I got up, got dressed and went to be a mom with my son at the high school he will be attending in the fall. This was my first big outing since I boarded the train....not going to lie, I broke down at the end. I think, I was tired, I was over thinking, it was nighttime, the scariest part of my days. There was an emphasis on the class of 2021 - my son's graduating year and I had this moment of resign - what if.....how will he cope.....and that is what did me in. I know I cannot think like this but I ask you how do you not let it creep in every now and then? How does the devil not insinuate himself in your head and fuck with your mind when you have something inside your body that doesn't belong. I was with a group of women and realized these are things hopefully they never have to face and I became sad for the burden I carry and for that I am so sorry. I am sorry that I let the devil win. I am sorry I have this disease. I am sorry of the financial stress it will put on us, the emotional stress on everyone, the physical stress it is going to take to fight everyday and win everyday.
All I can ask is for today. Today, I am going to push the devil away and I am going to win today because each little success can be woven into a quilt of strength. This, overtime, will comfort me and remind me to always persevere.
Peace ✌
Jo
You are still on the pink team 🎀 And never kicking you off! Once again you do such a great job expressing yourself. Praying positive thoughts that the first cocktail works and you have little to no side effects. Always here for you lxo
ReplyDeleteThanks Mary - you were the first person to welcome to the "club" LOL. You are a gem. Love you.
DeleteI think you're still on the Pink Team. You are definitely giving a voice to this fork in the road called Metastatic Breast Cancer. Keep putting the gloves on everyday and beat the shit out of this and continue the candor. Use the curse words if it is the only way to express it - it's like giving this entire thing a swift kick in the balls. I don't have any idea what the road ahead of you looks like, but I hope you remember to focus on the sun when you wake up, and give thanks to the day you had when you go to sleep. I admire that you are pulling all the fighting spirit/ammunition you can draw up from your core, and I understand all the words & overthinking - (What I'd call it, because I recognize it as something I'd do too) - as you look around you and try to navigate. As a friend, a woman, a Mom. Continuing to pray for all of you and continued strength as you take this one day, one hour, or just one minute at a time. ~Suzanne (friend of John's since 8th grade)
ReplyDeleteThank you so much. This is beautiful and I appreciate your kindness and encouragement. Blessings to you.
DeleteJo..I am so glad you have this blog. Writing your thoughts and expressing your heart is gong to be very therapeutic for you.. and for all of us. You are a warrior, girl...I can feel your strength through your words. Keep on fighting! We got your back. **hugs** Regan
ReplyDeleteThanks Regan so much. Sending you hugs as well.
DeleteYou ARE a warrior! If there is anyone who can kick this in the ass is absolutely you! Your courage, strength, dignity, and inspiration are amazing. Keep kicking ass lovely lady and know that my prayers will continue to lift you up. Lots of love, Jeni
ReplyDeleteThanks Jeni....I need you whispering this in my ear all the time. LOL. Thank you for your prayers and love. Hugs to you.
DeleteJo- I've really enjoyed reading your posts. Your rawness and honesty really shine through. You are one strong woman. Your perspective is humbling. Thinking of you! <3 Olivia
ReplyDeleteThanks Olivia so much. Hope you are doing well. I appreciate your kindness. Hugs to you.
DeleteYou are so brave! You don't have any choice about the disease, but sharing your hopes and fears this way is just amazing. Thank you. We are wishing you the best. xx
ReplyDeleteThanks Mary so much :)
DeleteI saw your post on the Naperville Talk FB page and just read your blog posts. (So that explains this comment from a stranger, ha!) Thank you for sharing your story and your feelings. Am so sorry that this disease has reared its ugly head again for you. From a fellow fighter here in Naperville (3A triple pos), I send you positive vibes of peace and strength as you kick those mets to the curb! ��
ReplyDeleteThank you so so much. This means the world to me. I hope you continue to read along with me on this journey. Wishing you all the best as well and thank you for the encouragement to keep on fighting. Hugs.
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