It has been way too long since I’ve posted. There has been a lot. I’ll do a quick recap so you can catch up and I can organize my thoughts:
August 2019-Clean Scan
Oct-Dec 2019-Chemo/Treatment Break
January 2020- New Chemo-Doesn’t Work
April 2020-New Chemo-Doesn’t Work
August 2020-New Chemo-Hospitalized due to side effects
October-Back to Chemo-Back to Hospital due to very low blood counts
November 2020-Referral to Sarah Cannon Cancer Center for Clinical Trial
November 2020-January 2021-Clinical Trial
So this is where I will pick it up. The clinical trial was not easy. The drug had to be taken at very specific times and under specific circumstances. It made me nauseous and I threw up on occasion. Overall, I felt worse and worse as the trial went along. When my January scan came back, it showed more progression. In other words, the trial drug did absolutely nothing. On my last day, they were concerned about my breathing and mobility and sent me for a chest CT. It was determined that I had a pulmonary embolism (blood clot in my lung.) I was quickly put on blood thinners. I had to get two shots a day in my stomach for two weeks and began taking an oral blood thinner as well. I was shocked that they didn’t hospitalize me, but I would always rather be at home.
I’m not sure if I can stress how horrible I felt at this point. I needed help getting up and down. I needed help showering, I couldn’t walk more than a few feet without being completely out of breath. I spent most of January and February contemplating death. I felt it was coming quickly and I had no energy to stop it. I cried a lot, I wondered how painful the process would be. I thought about my family and if there was anything I could do to make this easier on them. I really, truly thought this was it. No one wanted to talk about death with me. It’s funny because everyone is going to die at some point, but no one wants to acknowledge it. It seems like just talking about it makes people think it will somehow summon the Grim Reaper.
Then came the call to my oncologist. I told her I wasn’t ready to give up and asked what was left on the menu. She said the only thing left was a harsh chemo and given my physical state, she worried it would/could do more harm than good. And then, here is the turning point…..the suggestion that saved my life. I told her I had read some medical journals and there was some anecdotal evidence that some women who had been treated with a drug called a CDK inhibitor, actually got better results when some time had passed and they went back to the same class of drugs. I fit into this particular category. I had been on a CDK inhibitor back in 2016/2017.
Here is my soapbox moment: This is why you must be proactive with your health. Don’t just accept what the doctors are telling you. Do your homework. Read about your disease and treatments. Ask good questions. Never allow someone else to make decisions about your health in isolation. Insist on being involved and get a variety of opinions! Now stepping down from soapbox.
Another hurdle was the insurance company. They don’t like to cover treatments that are super expensive and not considered “standard of care.” Just because there is anecdotal evidence that this has worked for some women, it isn’t considered clinically significant until clinical trials have been conducted. My doctor had to go to bat for me and talk them into allowing me to go down this road. I’m not sure what the conversation was, but she did get it approved.
I started the drug at the end of January. I did not get my hopes up because I didn’t want to deal with the disappointment. Keep in mind I’m still not in great physical shape at this point. Mark had to take me places in a wheelchair, I was sleeping about 12-15 hours a day. Most of my healthcare was taking place at my house via home healthcare. I did physical therapy, occupational therapy, nurse visits, and blood draws……all at my house. Which was so wonderful. I am definitely a fan of the home health care system!
Over the next couple of months, things got better…..very slowly. I’m still not anywhere near 100% but in comparison to January and February, I am doing great. And my scan at the end of March confirmed that I was responding to the treatment. There was significant improvement in both my liver and my bones. There is still plenty of cancer, but a lot less than there was prior to the medication. Part of me is still in total shock. I’m so thankful that this treatment is working for now. I’m hoping it buys me some more months with my family. I dare not hope for years at this point, but I’ll take whatever I can get.
We have a trip to Hawaii planned for June. It will look different than trips of the past. I will need frequent breaks, help with mobility, and lowered expectations as far as what we can see. But, regardless of my limitations, I’m thrilled to be going. 12 weeks ago, a 15 minute car ride was a challenge, now I’m about to embark on a 6 hour plane ride to fulfill a bucket list item,
I think that catches everyone up. I know a lot of people knew what was happening to some extent. The outpouring of love, support, and food was unbelievable. I am so incredibly blessed to have so many people willing to support me and my family. I will never be able to thank you all enough or repay the level of kindness I have been shown.
I promise not to wait too long until the next update.
You are my heroine. Always planning your next trip. Mary