5 Years: 2,682,000 Minutes

When I was first diagnosed with MBC, I had no idea what my life expectancy would be, no one did. The average life expectancy upon diagnosis with MBC is 3 years. Only 1 in 5 living with MBC live to five years. This past September, I passed five years living with Metastatic Breast Cancer. I know I am so fortunate, but the longer I am living with this disease, the more I prepare for the uncertainty, mentally and physically. Lately, it’s been more mentally.

At my most recent Endocrinologist appointment for my thyroid cancer, my doctor told me she has not treated a MBC patient with thyroid cancer for this long. I remember thinking right there how fortunate I am to still be thriving.

During October, Breast Cancer Awareness Month, all the pink is in our faces. Michaela and I spoke the other night about “pink, pink, you stink” and how, over these past 5 years, so many women we met or followed on their own MBC blogs are no longer with us. Holley Kitchen, Beth Caldwell, Larissa Podermanski, Susanne Kraus-Dalhgreen, Andrea Parker, and so many others.

I think about treatment options the most right now. Are they going to stop progression, and if so, how long are they going to last? I don’t have the best track record with treatments lasting a good amount of time. How many more are out there for me?

The latest chemo treatment didn’t work. My recent scans showed progression in the liver and brain. I knew something was up before my scans. I was experiencing fatigue, weight loss, pain, weakness, and loss of balance (I had fallen a few times).

A few weeks after the scans, I started to experience vertigo and facial paralysis. A repeat MRI showed nerve problems due to progression.

I’m on quite few medications to help deal with these symptoms and have started a new chemotherapy called Irinotecan. I receive it once a week for two weeks with one week off. Fingers crossed I get some good mileage out of this treatment.

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10 thoughts on “5 Years: 2,682,000 Minutes

  1. Thank you for once again sharing. I to am an anomaly…first diagnosed in 2001. Told because no lymph node involvement I was cancer free after my bilateral masectomy. 10 years later my beautiful tabby Chino cat found it…he kept putting his nose on my sternum there it was two bumps. My doc makes it pretty clear he can’t believ3 I am still on this earth 17 years since my first diagnoses…7 since it showed up 10 years after the mastectomy. Like you the treatments work for a short time then it’s back…radition twice and chemo which put me in the hospital with fluid in my lungs. The last tumors the showed up again around my sternum caused damage to my thoracic nerve!!! So now every 7 months outpatient surgery uo fill the cord in my throat so I don’t aseparate food into my lungs. My voice is left raspy and wears out quickly. I have to say PInk Pink Pink Stinks…sometimes I feel all that pink makes cancer almost seem pretty. I am thankful for the fund raising it helped cover chemo pills that my insurance would not, $5000 a month!! Medicare refused to let m6 doctor give me his choice for my last chemo treatment…he scowl and tells me some “suit” sitting in a cubicle has made his 10 years of medical study obsolete!!!! I fear my cancer will show up on my sternum for a third time then I can’t receive more radiation. The radiation also dried my thyroid so now on meds for that..also on monthly deep muscle injections trying to “dry up” as much estrogen as possible, $14,000 a month so far Medicare covers it but that may stop too. I am 70 so there is a chance the “suit” may decide since my I have MB C and no cure that I have received enough care. It has been on my liver and lung so expecting like you my brain is next on the menu!!! Yep blessed to still be on this earth but at times it takes all that’s on.me not to let it steal my happiness😘😘Prayers dear sister

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      • You too Susan. I am saying major prayers. The fact that cancer runs our lives is something most people cannot fathom. Travel is even curtailed…cannot just pick up and take off for a week without a lot of planning around medical appointments…who would know that cancer leads to having a throat doctor, a lung doctor, an eye doctor (because the steroids cause cataracts) …a brain surgeon, a friend is looking going thru the gamma knife procedure because her MBC has returned to her lung and liver. And now you with the brain involvement. So I know I am talking to the choir as I write to you…facing down this monster is such a lonely journey in many ways. We put on a happy face so it does not take the precious time we have And so there is so much behind that happy face. God bless and am so praying the next step puts you back in remission. 💟💟

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  2. May you continue to be the woman who defies all odds while still being able to see the positive. You are so inspiring and I wish you the best with the new meds. 😘 xo

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  3. Susan, meeting you with the DFCI panelist last October was my inspiration as I was newly dx July 2017 and quickly learned how medical bc teams have little to share with MBC patients, especially lobular mbc…my new life partner. It was your beauty and strength that enabled me to say to these 2 incurable cancers, stg-4 non-hodgkins lymphona since 2012 now with lobular mbc, that I am driving this journey, my journey, and if disease is coming along, it’s in the back seat. Learning how to be strong, smile and stand proud is what you continue share and teach all of us as one faces challenges head-on. Stay strong my friend, I look forward to seeing your updates and smiles as inspiration as we face each new day; perhaps we’ll see your smile again at the DFCI workshop later this month! I travel from TampaBay FL to share a day with sisters all standing strong together as they walk forward daily sharing hugs with smiles. Sending strength from FL, Dotti

    Liked by 1 person

    • Hi Dotti. Thank you for the very kind words. I’m very sorry to hear of your lobular MBC diagnosis, and of non-Hodgkins lymphoma. You certainly have a lot on your plate. I hope you are feeling well at this time. Safe travels to Boston. Take care. 😘

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