Random Musings of an MBC Patient
Last updated: February 2023
After sharing her story with AdvancedBreastCancer.net, Jane also wrote down musing throughout the year 2022 about trying to be positive, treatment/medications, and finding support in different people and places.
Trying to be positive, sometimes I just can't
I haven’t really shared with you, what it’s like right now bc I try to always give you the positive me, unless I just can’t.
I have a full afternoon of appointments Monday, and a full morning of appointments Tuesday, & can’t take a chance on depleting the little energy that I have. These visits will also result in pain from riding in car, sitting in chairs, etc.
It’s hard to explain the pain that comes & surprises me, the extreme fatigue that the pain creates, the pain med fog/dizziness, and the Letrozole dizziness/sleepiness.
I haven’t even had radiation & chemo yet!!!
Hopefully, the radiation will ease the pain before the cancer has a chance to create new stuff.
But I’m always hoping a semblance of quality will return...It’s a rough time right now & while I try to be positive most days...some other days I just can’t.
I’m still glad for every breath I’m able to take, but this shit is hard!
My outlook on life
Needed this today as I’m driving myself crazy trying to understand...I do know that I need to “Let it go”...because I can’t do anything to change whatever outcome is meant to be.
“Miserable people focus on what they hate about their life. Happy people focus on what they love.” -unk
These words reminded me of the required Medicare questions during my PCP visit yesterday. One was along the lines of “how do you feel about your life?”...My initial reaction was a sarcastic and negative, “I just love having cancer”...but then I thought about my VERY SUPPORTIVE AND LOVING family & friends...and I responded, “No, seriously, my life is great”, and explained about the love & support that surrounds me EVERY day.
So...THANK YOU to all of you who are caring for, loving, and supporting those of us with MBC. You mean more than you will ever know. XOXO
To my fellow MBC sisters
If you were my daughter, I would love on you every day and remind you that you have purpose. That purpose may be to inspire others, or to live your life like there’s no tomorrow, and be that “someone” for others to look up to. At any rate, from an aged woman...I will tell you that time passes quickly, even during the hard times when it seems to drag.
And know that you are precious, you are phenomenal, and you are loved. You are not alone in this travail; you are not alone...ever.
So beautiful woman, live every moment as fully as you can; and surround yourself with positivity, those who have your best interest in their hearts—by words AND actions. ❤️XOXO ❤️
To my support system
I sit in wonder of the people around me. My sons, my grands, my sister, my few close friends. Each has been there for me in a different way.
My son, who has been with me since the day I told him, has not missed an appointment and hears everything that I hear. He is there when the pain is so great that I cry, when I can barely get to the bathroom. He feels me so deeply. We have cried until we no longer can, we have laughed until we no longer can. He is my main support and carries with this load, my eternal love and gratitude. We express our love often, in words and deeds. There aren’t enough words to express my appreciation, but I try. His hugs, his presence, are everything.
My son, who lives in another state has the difficult burden of carrying my diagnosis from a distance. Be it a blessing or not, he doesn’t hear everything. I admit that I rarely share the “tough times” because of the distance and knowing that he couldn’t do anything anyway...not for these minor setbacks. His “love you momma” texts mean so very, very much. And I know that a simple call/need would put him with me as fast as he could travel. He keeps me in contact with my grands & him. Those visits mean the world.
My grands are teenagers, and words don’t often come easy for them. They each do little loving things that mean so very much.
My sister calls me often. She is also in another state, but we remain close at heart. We share so much history. She understands why I am who I am, and I understand her. We laugh & her calls always brighten my day. Yet, I can still share the serious stuff. I love her deeply.
My few, but very close friends are there for me. They know (because I tell them) that I sincerely love and care for them, and I know the same of them. Their calls and texts are beyond valuable.
It’s cliche, I know, but my wealth isn’t in money or things, but in these beautiful people that surround me and support me; and it’s in the love that we share.
When I near the end of an Ibrance cycle, I’m reminded to not only be thankful for the day, but so very thankful that I’ve lived another month. Can I do all of the things I want? Maybe not...but I can do the most important things...appreciate, love and be loved, use most of my senses, hug and be hugged, and wake each morning in my bed, my room, my home. Besides family and friends, these are the “things” that have come to be of value for me. How thankful I am.
Is it an issue if/when:
- You consciously note the cycle of Ibrance you have just finished or are beginning, like you are tracking time/your existence.
- You consciously note, at random times, when your next scan should occur.
- You dread, but also look forward to your monthly labs/visits with oncologist and your monthly Xgeva injection appointments.
- You wish that your oncology center had a mask requirement (and you REALLY don’t want to change centers).
- You’re really tempted to do some “normal” things: dinner at restaurant, go to movie, go shopping BUT concerned/hesitant at same time.
A metastatic breast cancer analogy
I took a response post from a MBC patient and expanded on it to create the following.
Metastatic breast cancer treatment is like a stack of cards in a game we’ll call Life. There are a set of certain limited cards that can be played for your specific breast cancer subtype and whether you are pre- or post-menopausal. You play the cards one at a time as long as they keep working for you. No one knows how long a card will work: weeks, months, years. No one knows whether your body will handle the side effects.
Bloodwork and scans help determine whether the card (treatment) is working. Results indicate no change in tumor size, reduction in tumor size, more tumor growth, new tumors, and all of these can happen at the same time because of all of the areas that can have metastases. Some players will experience NED (No Evidence of Disease) that means the scans/labs cannot detect cancer. Not that it’s not there, just not detected. Others experience NEAD (No Evidence of Active Disease) that means the tumors are no longer growing. No one with MBC is ever “cured”. And it is treatable as long as a treatment exists.
If one card/treatment stops working you try another one from your hand, as long as it still matches you and your cancer subtype. Subtypes can mutate and change for no apparent reason.
At some point you simply run out of cards that match you and your cancer, and you can no longer play the game of Life.
Your hope is always to to stay in the game as long as you can, while also experiencing the best quality of life that you can.
This is my story.
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