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

Support from friends - 3 days after we learned about the progression 

Happy Thanksgiving

Visit to Santa #1 (festival of trees)

Visit and breakfast with Santa #2

Finding the perfect tree

Letters to Santa

   

Char's drawlings after we learned about the progression

 although we have not talked to her about it she must of sensed 

on some level and started drawling our family