11 years w Metastatic Breast Cancer

11 years metastatic

It has been a little over 11 years since I was told the stage 1 breast cancer had metastasized to stage 4 breast cancer (MBC) a mere year and a half after finishing treatment for stage 1 Triple Negative breast cancer.

I will never forget the day Dr. H told us that the breast cancer was not only back but had grown and had taken up residence in my bones and lungs.

I honestly had no idea that was even possible…not going to say no one told me that it was possible because I am sure that they did tell me this but I choose to not hear it.

When I heard that the survival rate was around 3-4 years, I once again chose not to hear it (yes, I am fiercely stubborn).

The first line of treatment was an IV chemo called Abraxane. That worked for 3 months until the cancer outsmarted the chemo and the tumor in my lungs started to grow more… grow a lot.

Because the chemo wasn’t working, I was then put on my second line of treatment: carboplatin + gemzer + a trial PARP.

6 weeks later, the scans showed No Evidence of Disease (NED)!

I was in shock when Dr.H told me this and in even more in shock when she told I didn’t get to stop chemo. (YES… I honestly thought that when I heard NED, I would also hear “no more chemo” – I was wrong…way wrong.)

This is where it really set in that MBC was a whole different beast than lower stages and some kind of treatment was always going to be needed.

I stayed on that 3 part combo until December, 2011 because my blood counts couldn’t recover even after multiple blood transfusions. After Dr.H worked it out with the trial, it was decided that I could stay on just the PARP to see how I did.

For the next 9 months, I continued the PARP, received NED scans, gathered my fell into a routine of getting the PARP 2x a week and I started thinking life with MBC was no problem.

WRONG!

September, 2012 I was out shopping with my son and when we were walking down some stairs, I stumbled and noticed I didn’t have control over my right side.

I called Eric to come pick us up because I knew driving wasn’t a good idea feeling the way I did. Once Eric got there, I was feeling better and we went to eat BECAUSE I felt a little better and I didn’t know what was wrong…????‍…oh to be young and dumb.

After we ate, I noticed my foot was heavier, I couldn’t feel or control my right foot at all so I called Dr.H. She told me to go to ER. H called the ER to tell them I was coming in and needed a brain MRI.

When the doctor walked in with the results of the MRI, I immediately knew something was wrong by the look on his face…he had sad eyes…I have seen these sad eyes on doctors many times before.

He told me I had a mass growing in my brain…a rather large mass growing in my brain.

I had brain surgery a few days later where the doctor found a sack of fluid and solid tumor “together” (still not 100% sure what that meant) about the size of a walnut.

Recovering from that surgery was a roller coaster.

Recovery was “ok” until I started having issues with my brain swelling. The swelling led to more steroids, the more steroids led to steroid psychosis where H admitted me to the hospital for a few days to “rest.” I talked with the hospital therapist where it was deemed ok…I think meaning I wasn’t going to hurt myself (which that never crossed my mind).

After the hospital, I just coasted for a few weeks until the panic attacks started getting so bad. I was breaking down, hyperventilating and dry heaving several times a day.

I was convinced the tumor was back had 3 MRI in 3 weeks. The first 2 MRIs showed changes but everyone believed it was swelling…until the 3rd MRI where mass was showing within the swelling.

So, not even 3 months after the first brain surgery, I was going back in for a second brain surgery. This one again found the same type of triple negative breast cancer in my brain.

The second surgery was much harder than the first. The second surgery left me without feeling in my right foot and a floaty right hand/arm. I hold my right forearm up to my chest vs down by my side.

I had to use a walker after that surgery until I could learn to trust that my leg was actually there and still worked since I couldn’t feel it.

I had to teach myself how to drive with both feet because I couldn’t/still can’t move my right foot to the break fast enough. I started driving in a church parking and slowly progressed to the streets, then to take Ian to pre school. I still don’t like to drive because the mental energy it takes me…it exhausts me.

All was going good for 6 months until one day I was out shopping for my birthday and my right leg felt more numb and heavier than normal. I instantly knew something was wrong, so I called Dr. H and once again, an MRI confirmed something was up…the tumor was back in the exact same spot.

Back in for brain surgery #3 within 9 months.

When I woke up from the 3rd surgery, I looked at my husband and told him that it was all good…that I felt like the tumor was gone! And it was and has stayed gone since May, 2013!

I started the oral chemo Zometa. This chemo came with odd side effects…blisters/thick painful bottom of the feet, exhaustion and my finger prints peeled off. (I still can’t use the finger print scans for my devices.)

All was going good until June, 2016 when I was diagnosed with a secondary cancer of MDS (pre-leukemia). The best way to treat MDS was a bone marrow transplant to which I was so extremely lucky/fortunate/blessed (I don’t like to use that word blessed because I think about all the others in this situation who it wasn’t like that for them…then I spiral wondering why was I blessed but not others)…sorry about the sidetrack.

For MDS, I received 5 days straight of chemo which kicked my butt.

“Be The Match” found a match for me in a few short months. This was huge because sometimes it takes years for a match to be found.

The bone marrow transplant was hands down the hardest thing I have ever gone through…4 straight days of heavy duty chemo, the transplant day, and around day 12 after transplant the hardcore side effects started and lasted about 8 weeks.

It took me a long time to feel good again, but it came!

I do still have graft vs host flairs from transplant (Kinda like an autoimmune condition that flairs up every once in a while and takes me down for about a week), a numb right foot (yes, sometimes it still surprises me that I can’t feel my foot), sleep at least 10 hours a night, anxiety and depression, and other lasting baggage from those 10 years.

BUT here I am, LIVING 10 years metastatic and 4 years post transplant!

I am still surprised when I write down all I have been through, but am forever grateful for being a medical mystery because I know I am still here for something.

*Metastatic breast cancer and Stage 4 breast cancer are the same thing. MBC is when breast cancer travels to a different part(s) of the body outside the breast. The most common places the breast cancer travels to is the lungs, liver, bones and brain