Weekly Update #93

Y’all, I lied to my doctor today and it was such a dumb thing to do. I am so very lucky that things worked out in my favor despite my deception. I haven’t mentioned it here much, but my breathing has really declined in the past 3 weeks – you can hear me wheezing on every inhale and exhale and if I do a task like, say, put on pants I have to sit down and recover my breath. After mentioning this to every doctor I saw at MDA, hoping someone would get me relief, I finally got a referral to a pulmonologist. This pulmonologist is going to do a procedure tomorrow to remove some tumor that is growing into one of my lower airways and possibly causing all this shortness of breath. And this is where the lying came in. I was supposed to stop taking my blood thinner a few days ago and totally forgot, so I lied and said I hadn’t taken it the night before. My doctor said that was fine, I only needed two days off the Xarelto (my blood thinner) to be safe for the procedure. As soon as I left her office I regretted my decision to lie and knew I needed to fess up because it is just not safe to mess around with unexpected bleeding during a procedure.

My next stop was phlebotomy (blood draw) and I got to see a nurse there that I have really bonded with. I told her I was sad today due to my actions and started crying. She gave me an appropriate side eye when I told her I lied, but was incredibly gentle with me while telling me that I did need to tell the truth. We talked about how sometimes mistakes like these help things to work out the way they are supposed to, which I have totally seen in the past and believe. She held my hand and told me it was going to be okay. After leaving phlebotomy I sat on a bench outside and called pulmonology and told them about my lie. The nurse said she thought my procedure could still happen on time and after checking with the doctor confirmed that to be the case. I feel so incredibly lucky that my error didn’t alter my schedule, and I hope I have gained more bravery to tell the truth to my providers in the future. During the consult the pulmonologist did warn me that there is a blockage in front of the one they really want to clear, and that they may not be able to get through the first one to actually give me any breathing relief, but still thinks it is worth trying. I really appreciate her honesty so it won’t be a total surprise if I wake up unchanged tomorrow.

I am all done with my pelvic radiation to decrease the mass in my pelvis and as a result get rid of the pain and discomfort it was causing. While I am still recovering from radiation, I am feeling better every day with more energy and almost never any pain anymore. One thing about killing cancer tissue is that then your body wants to get rid of it, so I am still passing dead cancer and it looks like I will be for a while. Due to my anatomy and the location of the tumor it’s basically like I will be having my period for a month. It is way easier on my body than a single traumatic event where I expel it all, but it also means I am constantly watching for anemia.

I realize that last time I skipped over a wildly traumatic experience that happened in that time period and I do want to come back and revisit it because it was one of the top 5 scariest events of my life. I got to Houston for my radiation by taking a bus and my dad met up with the bus to drive me to our AirBnB. Exactly where and when this handoff occurred was a terrible rain and more importantly windstorm. Based on the reading I have done since, my estimate is that it was windspeeds of about 60mph, no exaggeration. Walking the half a block from the bus to my dad’s car was terrifying and took all of my energy. As soon as I got to the car I had to sit down and spent 5 minutes gasping for air before I could catch my breath. When my dad got in the car his door was nearly blown off the hinges, it took about 6 tries using all of his strength to get it shut. And it felt awful to sit there helpless, knowing that there was nothing I could do to help. But the scariest part was afterward as I sat in the car recovering, seeing this evidence of how vulnerable I am and knowing that 5 minutes alone in that weather and I could easily die. I am so unused to having my life threatened by mother nature and it was terrifying to experience. I still get a little nervous whenever the wind picks up now, so I’ll clearly be processing this for a little while.

So my schedule for this week is jam-packed. Today I saw the pulmonologist and had blood work and another Covid test. Tomorrow I’ll see my trial doctor and get final sign off for my new trial, and after that have my procedure to hopefully help my breathing. They say recovery from that will be minimal, which is good because the next day I get my first dose of my new trial immunotherapy drug as part of a 9 hour appointment (they have to do blood draws for up to 8 hours after my 1 hour infusion). Then Thursday I have one more blood draw in the morning and finally my dad and I will get back on the road to Austin. It will be New Year’s Eve so we want to get home and off the road as soon as possible. I am looking forward to knocking all these things out before the end of the year, and being able to start 2021 with my worst side effects addressed and a new trial underway.

My time at home between last week and this one was wonderful. It was such a relief to be in my own bed with my family. My husband worked so hard to clean the house top to bottom for our return, which he totally didn’t need to do, but was exquisite to come home to. My joy for the week is easy, my daughter played us a Christmas concert on her piano. She has been practicing Christmas songs most of this year and it felt amazing to hear her perform them and eventually invite us to join in and sing-along. She also made us playbills with the date and time, an enumerated set list and quotes about her playing she solicited by us, “Nothing makes me happier than listening to you play piano” – Christina Aurora Bain to Marlowe. The whole was incredible.

4 thoughts on “Weekly Update #93

  1. I’m so happy to hear you got to spend time with your family – and a Christmas concert! And relieved that your pain is reduced going into 2021. Sending kindness and warmth, and thinking of you. Thank you for your openness and for sharing ♥️


    • I’m so glad to read hope in your post. And that your father has been there with you. And that you got to spend Christmas at home. Good luck tomorrow! And always.


  2. Omg the playbill at the concert made me smile and tear up. What a cool kid.

    Sending you love and strength, my friend. Hoping for the all best outcomes for your upcoming week ❤️


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