Emotional Roller Coaster with MC Breast Cancer Beast!!

My name is Tina. Ever since I was 21 or so I’ve been having cysts biopsied mainly in my left breast but some in my right.

In 2008, at 41, hubby & I were in Niagara Falls for our 20th anniversary. When I got out of the shower I bent over to dry my feet off & my left nipple was inverted. I was devastated!! I knew it was a sign that’s rarely talked about but almost always positive for breast cancer. Got back from the get-a-way & went to my doctor's appointments. Was a whirlwind of the doctor, then a mammogram, then a biopsy then results. Breast cancer IDC in left stage 1B & lobular DCIS in right in 2 spots.

Didn't fully understand what was to come next

I didn’t fully grasp what exactly breast cancer diagnosis meant. I just know that both parents died in 2000 of AML leukemia & I didn’t have that! Happy dance. I thought take them off, put them back on, done!
I laugh at that now.

Deciding what to do next

Lumpectomy 10/31/08. Not clear. Double mastectomy 12/7/08 another tumor found in left the size of a pea that wasn’t on mammogram or ultrasound. Scans showed all clear. Whew!! Declined chemo. My Why was because all I was offered had a chance to cause AML later in life. After watching the hell my parents went through, AML risk was a NO, I’ll take my chances.

More lumps, more doctor appointments

18 months later in 5/2010 scar line itching on the left side &, I felt a lump the size & shape of a grain of rice. Oncologists dismissed it as scar tissue. Surgeon on vacation. The plastic surgeon removed it in the office. Said looked like normal scar tissue but was sent to pathology. IDC has embedded inside the scar tissue. 4 rounds of chemo & 72 rounds of chemo to the chest wall. I asked why so many rad rounds. Was told because was local recurrent so soon. Scans again were All clear.

A persistent cough that wouldn't stop

8/20/20. I had begun coughing in late June early July. I’m asthmatic & it was allergy season. Meds changed. Helped a little. Early Aug did a chest X-ray as coughing had slightly increased. The night before I had a very bad bronchial spasm (so I thought) & I was short of breath. I work in healthcare & was covid tested every 2 weeks so I knew from the beginning that was off the table. X-ray showed a large pleural effusion with a partially collapsed lung...what I thought was a bronchial spasm from asthma was most likely partial lung collapse. Left side again!! This left side was a PIA! My GP contacted oncologist & I was in his office the same afternoon due to my breast cancer hx. Could of been other things but he was fastest to be seen by as no referrals needed. He ordered a draining for relief of symptoms as well as to DX if cancer or not.

The cancer had returned

Cancer returned...IDC. Port placed. Chemo started 9/2020. 3 rounds are done. Severe short of breath. Passed out & was sent to ER. Echocardiogram done in ER, then TEE for better view of heart & had an right atrium clot. 4th round chemo never done as needed to deal with clot. That was mid oct 2020. Mid Nov was talked into starting Ibrance. Should of listened to my intuition as I had a very uneasy feeling about it. No reason for being uneasy.

More side effects

Black Friday after 10 days of Ibrance I had spontaneously started gum bleeding. ER, I went. Platelets had plunged to 16 after Only 7 pills!! I was on the off days when this happened. Transfusions it was. WBC 0.3
Neupogen shots to boost those. Removed from Ibrance. An echocardiogram in early Dec showed clot dissolved. WBC up to low side of normal after 11 neupigen shots!! Uggg I’d never needed more than one while on IV chemo red devil. Was able to return to work the week of Christmas 2020.

Scan, scan, repeat

I’m scanned every 3 months. From the beginning although not common, my pleural effusion was & still is my only Cancer location as I type this. Aside from draining in Aug 2020 I have only needed to be drained 2 other times & that’s been 6/11/2021 (stopped due to vaso) removed 750ml & again on 6/22/2021 & removed 400ml that time. My oncologist was on vacation & a fill in ordered the 6/22 draining w/repeat X-ray 6/29 due to coughing still after 6/11 drain. My regular onc returns Tuesday 7/5. Will see what he has to say about needing 2nd draining so quickly & see what he says about X-ray report. I was just told I’m “stable” by fill in onc. nurse when called to give me results.

No more chemotherapy

I have been off chemo since Nov when I stopped Ibrance. I have my next PET 8/3/2021. After needing to be drained in June I fully expect to need chemo of some sort again. I like all of us with MBC pray I have a clean scan without further spread. I’m planning to stop work in Sept & I’d like to be able to wait till then to need chemo again.

As we all know on this journey, Chemo is to stop spread, it’s not a cure so if it hasn’t spread on 8/3/21 scan I want to wait. Crazy me, I want to feel like I have Some sort of control even though I know in reality I don’t. My onc & I are on the same page.

Quality of my life is my #1 priority

I fought like hell to get back to work 12/2020 last year. My excuse in my head was insurance needs which were real but also a lie to myself. The reality was that if I could go back to work, stage 4 cutting my life short at 54 wasn’t my reality. I’m ok & not fighting for my life. I was back to “normal." What it was, was a much needed at the time distraction to my new reality. What a difference a year since DX has made for me.

Applying for disability

The reality is....work will replace me in a heartbeat & not give me a second thought. My husband & family deserve to have me now while I am feeling great, not just while I am too sick to work. Reworking our budget when I was dx last year, we have fought to get debt-free while fighting cancer. Stopping work & collecting disability will allow me to stop working & not be stressed over finances.

Spending the time I have left with my loved ones

I need to spend as much quality time with my hubby of 33 years & my 3 adult daughters making memories, talking, having hard conversations not only about the future but also healing old hurts so that when I’m gone They Don’t Have the “Would of, Could of, Should of” said XYZ but now I can’t. I don’t want my kids having regrets & childhood hurts that can’t be healed. We all have childhood hurts of some sort. They will hurt when I’m gone. Regrets makes it even more painful. I don’t want my hubby to feel as if my job & patients were more important to me than spending quality time with him.

Fully accepting my diagnosis

I have made the decision to go back out on FMLA in early Sept, that’ll carry my ins through the end of the year. I will then medically retire. I thought about doing that & not returning to work 12/2020 but had severe anxiety over leaving work. This year I’m in a different place emotionally. I feel like I have fully accepted my dx & my new reality of a shorter life. I might have a week or 10 years. I didn’t want to leave work “too early”. What if I live 10 years? My answer before was... I’d regret leaving work as I love my job. My answer now... my family deserves to have me well for as long as possible as this is a roller coaster ride of ups & downs as I will be in & out of treatment.

I feel at peace with my choice to leave the workforce. I know this is long. Thank you for reading.