Hello Everyone,

My friend Joseph originally set this up for me last year (2024) when they first found tumors in my breasts . But since things have been changing so rapidly, and he moved overseas, he transferred it over to me. So I’m updating it some.

January 24, 2024 I felt a lump on my left breast during a self exam after feeling extreme pain in my breasts.

I went in for a mammogram and ultrasound and they told me they saw a mass during the procedures, but then when they were done they put on my report that I was good to go and they saw nothing.

So I asked my primary to get a referral for a second opinion. She argued at first the report said I was okay, and I told her what they told me, and she then said “They shouldn’t have told you that!” Which of course I said I’m glad they did. She agreed to do a second opinion, then never put it in. She even felt the lump at my next visit, said she would put it in, never did. This went on four times, between the arguing and her saying she would but didn’t, knowing my strong family history with breast cancer. Finally my insurance got involved, and I went in, the radiologist saw it, and found more during the ultrasound. He insisted on an mri because I have dense breasts and a biopsy. My primary then said she would only put in for the biopsy but not the mri, that I didn’t need it. (Yes, she is no longer my primary.) After a lot of fights with her, I went to my OB and she sent me to an amazing surgeon who sent me for an MRI, and guess what, more tumors. He sent me in for a genetic testing as well, and they discovered that I have two very rare genetic mutations that cause tumors to grow rapidly, that less than 3% of the world has, and also I can’t be exposed to too much radiation because radiation causes tumors to spread more rapidly with these. I have LZTR1 genetic mutation and SDHA genetic mutation.

August of 2024 I had a partial mastectomy and removed the large (first tumor) that I named Big Bertha as she was a big “b”. I ended up having seizures during the surgery, as I suffer from a rare epilepsy called catamenial epilepsy which is caused from hormonal changes, and the drop in hormones from the surgery plus medications sometimes caused my body to react. I spent a day in the hospital as my insurance didn’t want to pay for more, and then recovery.

During all of this, I have been diagnosed with fibromyalgia and lupus. And had to see my neurologist and start treatments for migraines that started occurring from everything. the joke is at this point, I am a medical anomaly. (I have dark humor to process this all as it’s overwhelming)

At the three month follow up from the partial mastectomy, they did an ultrasound and then immediately wanted an mri. The mri showed that the tumors I still had had grown substantially and that I had more. Getting that convo with my surgeon was not the news I wanted and hard. Especially after coming home from being evacuated during the fires for 9 days. We scheduled an mri guided biopsy again (which those are the most painful in the world). During that they found more in the month it took to get it. Next step is to see the plastic surgeon on July 28th, and then schedule my bilateral mastectomy after that. There is concern that my insurance doesn’t want to pay for the reconstructive surgery afterwards. So hoping they can, or else the funds from this will also be going towards that.

I had a colonoscopy a few weeks ago, which I’ve been getting those for 17 years now as family and personal history in that area. The prep was the most painful prep I’ve ever done. And during the procedure even though I was coming out clear, they said I still had stuff in there. Afterwards I tried to eat a couple of bites and immediately had extreme pain and started sweating and having a fever. They told me to come back in, and the CT scan showed my stomach was distended and full of food and I had fecal matter in my upper right colon. They did an endoscopy and biopsy. They also did a CT with contrast and discovered a mass on my left ovary. I ended up in the hospital for a week, and then told to follow up with my GI. But also with my OB to schedule surgery to make sure my endometriosis wasn’t causing adhesions again but also surgery to remove the mass on my ovary.

Last week my GI called to inform me that the biopsy results came back that I had abnormal mast cells in my colon. So I have to follow up with my oncologist and hematologist to do more procedures to get the exact diagnosis from here. But they believe I have a rare cancer called Systemic Mastocytosis.

During all of this my body has been changing into a person I don’t recognize. Swelling up from fluid. And in so much pain I can’t sleep or function most days. I am weight restricted as my breast is inflammatory as well. And since the strikes work has pretty much stopped, but regardless, I can’t work like normal because I can’t even function most days. It’s been the worst year of my life, and I feel like I’m always chasing the next answer from my doctors as to what it could be next.

Tomorrow (June 13th) I have to have a secondary biopsy on a spot under my left armpit as well that extended the margins when they removed a mole from there. So that’s a concern too.

I just feel like I have been on a rollercoaster going downhill for some time now. My body is tired and giving up, but I’m trying not to.

Thank you everyone who has made it this far in this long winded rant. Thank you everyone who has donated and shared, you’re keeping a roof over my head and bills paid during this hard time of uncertainty.

I can’t explain the gratitude from you all with the prayers, love, support, donations, shares, and just the presence during the hardest time in my life. Thank you for giving me the space and grace during this journey.

-Kels

Update: On August 12, 2025, I was officially on paper diagnosed with a rare cancer called Systemic Mastocytosis that only 0.01% of the world has. It has harmed other organs, and I will be going through Comprehensive Molecular Testing to see what kind of treatment I can receive at this point. It is not curable, and it’s only a matter of trying to control the symptoms and slow down the progression and damage it has already done so far on my internal organs. I’m not giving up, but I am very sick and basic things are now becoming challenging. I am being assigned to a team at UCLA that specializes in my condition, and I am being assigned a palliative care physician as well. Thank you everyone for the continued prayers and donations, and just love overall. Not sure how much time I have left on this earth, but I’m going to try to live with nothing but gratitude in my heart. All donations are being used to try to keep my home and bills paid right now as I wait for disability to start.