My hair

In 2016 I went through chemotherapy. I was told that I would start losing my hair after the first infusion, right around 2 weeks in. So to prepare for that loss I got a really short hair cut. It was cute and spunky and prob not a look I would ever do again haha. And right on time, 12 days after my first infusion I was running my fingers through my hair and a whole lot of hair came out. Then a couple of days later hubby buzzed my hair off in my kitchen with the kids there as a welcome distraction.

I wanted to cut my hair and then shave it on my own terms but the unexpected happened. No one prepared me for the day I would be in the shower and my hair, although shaved, wouldn’t stop coming out of my head. It was physically painful, it was overwhelming, it was traumatic. All of the tiny hairs that were left in my scalp and hadn’t fallen out on to my pillow or in my hats, were now flooding the floor of my shower. I wept. I sobbed. It was just hair I kept telling myself, but that was me trying to rationalize this experience. There is nothing normal about losing my hair at 31.

The next major insult to injury was losing my eyebrows and eyelashes; I felt like an alien. You loose hair everywhere, but the weirdest place to loose hair that know one “sees” is the hair in your nose. My nose was running all of the time. The silver lining was not shaving my legs and arm pits for a good long while.

You might be wondering why I’m telling you about this experience now; why I want to take you down memory lane. I appear to have all of my hair still and I don’t look sick. MBC is a hidden illness for many of us because we look normal and we are doing normal things. But my hair has changed a lot. As it grew back I had curls and I loved it! But today I am reliving that traumatic experience of 2016 every day, in slow motion.

Each time I take a shower or brush my hair, and absurd amount of hair comes out. I know normal hair loss, and this isn’t normal. My ponytail has decreased by about 50% in the last year. Additionally, my hair growth has slowed down dramatically. So I am losing hair at a slower rate than I did in 2016, but it’s still falling out.

It just comes with the lack of hormones, or because of thyroid dysfunction, or as a side effect from my medication, and likely a combo of all of it. I don’t know if it will ever stop or if my hair will ever grown back to the thickness it once was. I expect not. You may never notice the thinning, but I do.

I don’t have a love affair with my hair, but it does make me feel feminine and I know my husband and kids like it. It keeps my head warm and I generally love having hair more than not having hair. I’d like to hang on to as much of it as I can for as long as possible.

Recently though, I decided to order myself a couple of cute hats from Style Esteem. They have a wonderful story so check it out. I am excited about wearing these more frequently as my hair thins. They keep my head warm and they help me to feel feminine. I also have some other tools in my arsenal to cover the thinning when I am not wearing a hat. Having some control over how this disease affects my appearance is nice.

This is just another part of perpetual cancer treatment that isn’t pink or pretty or easy. Collateral damage as we say in Cancerland.

It’s all good!

Short and sweet update tonight 🙂

My scan results are showing that the inflammation in my gut is much improved. So much so, that if they would have seen it for the first time today they wouldn’t even be treating it. I’ll be meeting with my GI doc next week to go over the treatment plan going forward but I am hopeful that we will start a taper plan for the steroid. And hopefully that means I’ll be able to get off of the omeprozole soon too. I’d love to get off both of them eventually.

Oh and the cherry on top is that I’m still showing no evidence of active disease. No progression and whatever cancer is lingering around in my body is sleeping and staying quiet.

Thanks for all of the words of encouragement and love!

MBC Day!

Greetings to all of you followers! I have been taking a big step back from regular updates in order to really be present in my normal day to day life. It’s been a nice break! Just because I haven’t been posting doesn’t mean things haven’t been happening in Cancerland though. Just the opposite actually. Nothing terrible, but it hasn’t been dull.

I’ll give you a quick recap to get you up to speed, and then I will let you know where I am at today and why this post is called MBC Day. So back at the beginning of 2020 I was having some lung inflammation (likely due to the immunotherapy) which was a bummer because it wasn’t getting better after a break from my immunotherapy. Then COVID hit, and we decided that if I were to stay on the immunotherapy and my lung inflammation continued to worsen that would put me at even hirer risk for comorbidity issues if I were to catch COVID. So I have officially been taken off the immunotherapy, but I am still in the clinical trial and still take my daily oral medications (abemaciclib and anastrozole).

In May, I started experiencing almost debilitating indigestion. I would do a few weeks on omeprozole and taper off to see if that would fix the indigestion long term. Nope nada. I tried Pepcid AC and tums and still the indigestion would come back. It not only wasn’t going away completely, but it was coming on with intensity more frequently. I kept track of what I as eating and drinking and how I was sleeping. I was uncomfortable often and nothing seemed to trigger the indigestion. I started working with a GI doctor at Brigham and Women’s Hospital that specializes in immunotherapy related GI issues because my doctor didn’t know if what I as experiencing was as a result of the immunotherapy I had been on previously, or if it was as a result of the abemaciclib. I tried a break from my abemaciclib. The frequent runs to the bathroom definitely cleared up with a break from the abemaciclib, but other than that I had very little relief from the indigestion. The next step was to do a bunch of blood tests and head in for a upper and lower endo scope.

I ended up being told I had a C-Diff infection which was a surprise to say the least, and I am not even sure that it was truly a full blown infection. That’s another story all together, but at the end of the day I took a course of antibiotics to kill off the C-Diff infection. After that I went and had an upper endoscopy and a colonoscopy. The results of the scopes showed a delayed immune response likely due to the immunotherapy. The gift that keeps on giving! Yes immunotherapy is amazing and has huge promise, but it also comes with big risks — this being one of them. At any point in time my body could see itself (instead of the cancer) as the enemy.

I am now on a steroid that is supposed to calm my GI tract, a new anti-diarrheal medication that has less side effects than immodium, and I am back on omeprozole. I can say I actually feel pretty good, but this added a shit ton of drug coordination and number of pills to my daily load. If I don’t time everything just so, the whole day is off and then I worry about how I will feel. I went to my oncologist to talk about this because it was overwhelming. But my schedule is generally this:

6:15am Thyroid medication (remember immunotherapy killed my thyroid): 1 pill

6:45am omeprozole: 1 pill

7:30am breakfast (has to be timed just right with the thyroid med and the omeprazole)

8:30am abemaciclib: 3 pills

10:00am steroids and anti-diarrheal: 4 pills

8:30pm abemaciclib and anastrozole: 4 pills

Bedtime: anything I need for sleeping because steroids.

Thats a minimum of 13 pills everyday. I am a person that before cancer took nothing, so that’s a huge jump for me. But now that I have a schedule it’s mostly manageable. The pills added to deal with the GI stuff are hopefully not in my treatment plan indefinitely, but for now there is no end in sight. The steroids take 6-8 weeks to really show an effect. I am coming up on week 6 with them so hopefully my most recent scans will show some improvement on the inflammation in my small intestine and stomach. Once the inflammation is calmed down I will taper off of the omeprozole and see how my gut feels.

If y’all know anything about me, it’s that gut health is really important to me. I have been interested in healthy gut flora for a long time, so being on all of these medications for my gut feels so bizarre. But I don’t believe that some miracle water, some supplements, enzymes, or probiotics will fix this issue. We needed to hit the reset button and see where that takes us. I’ll keep you in the know about how it goes for me.

And this all takes me to why is the post called “MBC day!”? Well it is because October 13th is the one day out of Breast Cancer Awareness month specifically designated to MBC Awareness. And if I have done my job at all, as a patient and advocate for MBC, you will know this is NOT enough and we need more: more publicity, more knowledge, more research, more funding. My story is just one of the thousands of MBC stories. And my story isn’t pink or pretty or “Rah Rah for your Ta Ta’s” (yes I have seen this statement made). We need real funds and real research to find a cure for breast cancer. Early stage breast cancer doesn’t have a cure. Yup I said that. Here’s my reasoning: early stage breast cancer doesn’t have a cure because breast cancer as a whole doesn’t have a cure. If you have MBC it is most certainly a death sentence (average life expectancy is 3-5 years after diagnosis). And if there isn’t a cure for MBC there isn’t a cure for breast cancer. Find a cure for MBC and we can say there is a cure for breast cancer. So for those women diagnosed with MBC right from the get go (called De-Novo) or for the 30% of us early stagers that will reoccur with MBC please consider donating money to Metavivor. More money to research means more research and progress for a cure.

Tonight the #lightUpMBC program is happening at 8pm EST. You should have it on and tune in on Facebook Live.

I’m two years into this chapter and I am never giving up on getting more for MBC because even if I am doing well, there are many folks out there that aren’t. I have lost 5 friends in the last 12 months from MBC. Keep fighting the good fight my friends! I can’t do any of this without your support.