Pushing Pink Elephants: December 2018

Thursday, December 27, 2018

Is 3rd time a charm? Bald yet again!

Hi Friends,

I mentioned in my last post that this new chemo would cause hair thinning/loss. I was really hoping to get through the holidays with hair but unfortunately that wasn’t going to happen. It started falling out around day 14 after only one treatment. Baldness caused from treatment isn’t unusual but for all the other stage 4 chemo’s I have tried this is the 1^st to cause hair loss. I lost my hair back in 2012 from chemo, then in 2017 from brain radiation and now 2018 from chemo. We have been joking about my latest hair loss saying well maybe 3 times is a charm. I mean how many times does one girl have to go through hair falling out by the handful, forced to shave, wear wigs and head wraps? Two Christmas in a row being bald. It definitely does not really seem fair at all. But living your life with cancer and the treatment changes isn’t fair either right?

It’s one of the hardest parts of treatment for a lot of people. Hair can be very personal and a big part of what makes you feel like you. Our hair can define us (or we think it does) and we rely on our hair style for pictures and feelings of self-worth. Everyone’s journey with hair loss is different. Some survivors choose to embrace being bald while others rely on wigs or hats to keep a “normal” feeling to a life changing circumstance. I was never super attached to my hair. Which is strange because I changed my hair a lot. I had amazing curly hair prior to cancer and I would wear it curly or straight, short or long. Whatever I was feeling. When I lost my hair in 2012 I had a baby to take care of and I never cared for my wigs. Although I did have a pretty bad reaction from someone I really cared about that made the emotional side of my hair loss harder. But that’s a story for another day ;0) I wore my wigs maybe two times back then. I chose to just embrace being bald. I got a lot of inspiration from Bald is Beautiful to just rock it. It would only be a temporary side effect and I would have my hair back by the end of the year.

In 2017 I had a similar mindset going in. I wore wigs a few times but not many. Char struggled a little and really loved it when I would wear them. I think it made me look less sick and she could feel normal in public with me. You definitely get staring and second glances when you go out in public bald. This time around I tried to make it a girls night at the spa and have champagne and a head shaving thing. Schedules didn’t really work out and it is hard to plan because you don’t know when the hair will start falling out or how long you can stand it before you are ready to shave. So we ended up doing a quick visit to the barber shop for a shave on Dec 15th. It was a little frustrating because the girl who did it just didn’t want to take it all down and kept doing different guard levels and I kept saying more, still more, ok keep going. Steve actually took it down more a few days later. The whole thing was super emotional this time around. I am not sure what was different. I had done research on the cold caps this time and had decided against it for various reasons. I think I just thought about it more than before this time around. And in all the tube videos I watched the girls were just so determined not the have hair loss they endured hours wearing and switching out the cold caps. It just wasn’t for me, but I would love to hear from people who actually did this and had success. I get cold enough as it is, I can’t imagine how uncomfortable it is to have those caps on. By the time we were done at the barber shop Char, Steve and I were in tears. Char was so sweet, she said “It’s ok it will grow back”. Later I asked her if she minded me being bald and she said “you are my mommy and I love you”. Just simple and matter of fact! Because we don’t know how long this chemo will work I could be bald for a long time and there isn’t really an end date. Once we stop this treatment drug it will take six months to a year to grow my hair back. Maybe that is why this time it was just a little harder on me than before. It is what it is and just par of the course in this life with stage 4 breast cancer.

Xoxo

The saga of being bald

Year 2012

Christmas 2017

Dec 15th 2018

Christmas 2018

Tuesday, December 11, 2018

Cancer is Progressing

Hi Y'all,

Its time for an update! And I so wish I had better news to share with all of you. I have been procrastinating in writing this post because I get tired of the bad news and so want to share happy news! But it's time for me to come clean.

A few weeks before Thanksgiving I had a MRI of my L spine and pelvis. I had been having some breakthrough pain and had been increasing my pain meds. The scan showed some abnormalities which initially were thought to be osteonecrosis, which is the death of bone tissue due to lack of blood supply. This could have been caused by radiation to that bone, but it was unclear what had caused this to happen. A pet scan was ordered for 10/31 and on 11/7 Dr Fetting called with the news. Steve & I went in to meet with him later that same day and the news was extremely upsetting. The scan when compared to May 2018 (6 months) showed extensive growth and new cancer in the spine, pelvis, ribs, lymph-nodes and a new spot on the lung. All other organs remain cancer free, but the new spot on the lung is definitely of concern. We were beyond devastated since May's scan had shown such positive results and no cancer growth. We were finally breathing again and hopeful for continued "no growth" and counting on the effectiveness of treatment prior to this news. The carboplatin/olaparib combination worked for about 6-9 months. But it has stopped being effective and my cancer has gained the upper hand once again. It took a couple weeks to get things in order with scans and tests. My last combo of carbio/olap was on 10/23 and a new chemo called Eribulin started on 11/27 and boy did it hit me hard! My anc neutrophil blood counts went from 2,250 on the chemo day to 370 on 12/4 (had to skip chemo) to 140 on 12/6. I have been neutropenic for over a week. Last time my ANC was this low I spent a week in the hospital. So far we have stayed home and I am trying my best to stay germ free. This is the worst time of the year to have such low neutrophils. With all the holiday shopping every place I go is crowded with people. We had a little family trip planned for last weekend to visit NY and see the lights. That unfortunately didn't happen since my counts were so low. I am hoping my counts are on the up and up this week, but I am not sure. Based on how I feel they seem to be getting better. They will be checked next week and hopefully we will be able to do another treatment of eribulin. They are working on the right dose that will keep my counts in a healthy range while still being effective to stop the cancer from growing further. The dose on 11/27 was too strong since it caused such a huge quick decrease in my ANC. I also had a updated brain scan on 11/8 which didn't show any new or advancing cancer in the brain or along the lining!!! This is GREAT news!

On 11/19 I had six lymph-nodes removed from my neck for genomic testing. I am still waiting on the results to be explained by my doctor. More to come on that soon hopefully. That may change the course of treatment.

Although I was upset the chemo combo stopped working, I am so thankful it worked for the fluid around the lungs which continues to stay at bay (those tubes and draining procedures where no fun). The cancer on my skin also dissipated and continues to be invisible to the eye.

This holiday season has been great so far. I was in pretty bad shape this time last year. Between Nov and Dec 2017 I was having daily brain radiation treatments. It was pretty debilitating. I have such a limited memory of this time last year, just bits and pieces of memories come through. I am so grateful to be aware and able to enjoy this holiday season. Decorating the house has been so fun and its very festive at home. I think I have watched over a thousand holiday Hallmark movies so far this year ;0)

Although the news of progression is disappointing, scary and upsetting we have had time to progress the news and come to terms with it as best we can. It wasn't easy to deal with and emotions were really high. A new chemo means new side effects and it will take some time for my body to adj to the latest poison we are putting it through. This new chemo also causes hair thinning/loss which aside from brain radiation, hair loss hasn't been a side effect of all the other chemo's I have tried for stage 4. I estimate I will be loosing my hair in a few more weeks. I already have that scalp tingling/tender feeling after just the first treatment so it won't be much longer before I have a third head shaving session.

Thank you so much for your continued support and prayers. Pray for my counts to rebound so that we can continue with treatments next week. The schedule will be once a week for 2 weeks then 1 week break.

I am so grateful for the time I have with friends and family. Despite the bad days I have, I am having some really great days. Energy is low more often then not but I keep pushing on. I am trying to really listen to what my body needs and resting when I need to. Its so easy to push beyond what I should and then realize I am totally exhausted. Its a day to day, week to week assessment.

So much love from me to you and if I don't write again before the holidays please have an amazing blessed Christmas. Hug your family members and friends. Take a minute to really take in all the parties and get together's and be present in the moment. Life changes in the blink of an eye so embrace your people and make sure they know your love for them this holiday season.

Lots of love & merry Christmas - Erin