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.

Weekly Update #92

Things have been moving at warp speed over the past two weeks and there is so much to catch y’all up on! Last time I was getting ready to meet with radiation oncology and kind of bummed that it looked like my family would need to settle in Houston over the holidays to get this treatment in. I was trying to have good spirits about it, but it was a tough pill to swallow.

Well, that consult with radiation oncology went better than I could have imagined, and instead my doctor designed a plan that had me start this past Monday, December 14 and has me finish up on Wednesday, December 23. So I get to head home to Austin that day and be with my family for the Christmas holiday, which is really special to us. And, to add to my fortune, my dad offered/insisted on driving the 1700 miles from upstate NY to be with me in Houston, allowing my husband and daughter to continue their routine undisturbed. Since we’ll be reunited for Christmas, I really don’t mind spending this time apart with what feels like everyone where they are supposed to be.

Radiation has been tougher on me than I expected. I need to keep up with my anti-nausea regimen or pay the price. And I spend a lot of time asleep or somewhere between asleep/awake as I watch TV on the couch. My dad is an excellent caretaker; he’s attentive and takes feedback well. We’ve been bonding, learning about times in each others lives we don’t know much about.

In a continuation of my amazing luck, I got a call at the beginning of this week that I got a slot in a new trial. It’s a highly sought after spot because it is a new immunotherapy drug and this is the last one at the current dose. After I start there’s a safety period to see how I and the others in my dose cohort tolerate the drug before opening up slots in the next and final dose level. I love that the timing works out that I am already here in Houston for the screenings I need to go through to finish qualifying for the slot. I am a little sad that it means I will need to spend time in Houston the week of New Year’s, I was hoping I’d get to recover from radiation a bit longer, but it is not worth giving up this slot for. And this trial has a very low time commitment from me – after the initial infusion day I only need to stay one more day for a blood draw and then I can head home. I’ll need to do weekly visits for this first round, but then that’s it, I just show up for infusion every 3 weeks. This will be so much easier on my body than the travel required for that last trial.

Oh, which reminds me that I should mention my travel fix. I made it clear in my last post that I was not going to be driving myself to Houston, I was going to find another solution. I did indeed, something my lovely host Jacki suggested ages ago and I always ignored. It’s called the VonLane bus, a luxury bus that runs between the major cities in Texas. Currently they won’t sell seats next to each other and masks are required, so it feels as safe as possible in this climate. This isn’t an ad or anything, I just wanted to share the info for anyone curious.

That brings us to a close. My joy this week has been my incredible fortune in so many areas. I’m trying to appreciate every bit of it, including that today is my day off from radiation treatment. I hope you are all experiencing good things as well, my friends.

Weekly Update #91

I do not even know how to open this week because, yet again, there is so much. I’m going to talk about bad news and listening to yourself and amazing friends and tough choices. I don’t want to bury the lede so I will put right here that I learned this week my cancer is progressing and it’s time for a different treatment plan, details below.

The start of the week felt very frustrating and dramatic to me. My trial coordinator logged into work on Monday morning, saw that there was an order to move my scan to this week, and did her best to get me an opening that day. Unfortunately the only opening was 90 minutes from when she called me, and I was in bed, unfed, and unpacked. Oh, also, at home a 3 hour drive away. This lady is convinced Austin and Houston are 90 minutes apart, who knows why. I told her I would have to be late and she promised they wouldn’t turn me away. I hate being late, and especially to medical appointments like this where I know it messes up the entire schedule. I think it is so disrespectful to the staff who will be effected.

But, you know, that tricksy universe has some tricks up her sleeve. Because after my mad dash to MDA, I finish my COVID screening and take maybe 10 steps down the hallway before realizing I recognize the man walking towards me, it’s my cancer friend from home, Ryan! I knew he was going to be there that day for appointments, but never expected to run into him in this city within a city. He was done with his appointments and came and sat with me while I drank my awful CT contrast drink and waited for my scan. It was a serendipitous and much-needed delight.

The next day worked out the same way – Ryan and I had breaks in our schedule so we could have lunch together and he could come to my results appointment with me. Talk about **showing up**, I asked and he was there. As I mention in my opening, the results were not good, showing that my tumors grew and there were a few new ones. So, the trial was not effective in fighting my cancer and it is time to leave it. This is disappointing beyond the news my cancer is growing, which is very bad. I was about to reach the point in the trial where I only had to go to Houston every 3 weeks and instead we are back to square one with tests and uncertainty and continued travel and it’s so hard to face that again. It is exhausting, and I am already worn down with nearly no reserves. I need time to heal and make progress on my weight and I am not getting it.

On Tuesday after hearing the news I could not face the idea of driving home, and my host Jacki was happy to have me for another night. And then Wednesday I kept feeling unready and when it neared the time where I really needed to be on the road I just started sobbing at the idea. So I stayed another night. Finally I was ready to come home on Thursday. It is incredibly uncommon for me to prioritize myself and my needs like that. It felt so selfish and vulnerable to be stuck at Jacki’s and not just suck it up and do what I needed. Jacki offered to drive me halfway and meet Wes, and my amazing friend Chaitanya offered to drive down with her husband, then they could drive me home or she could ride with me and give me some company to ease the ride. Again, what generosity, I am just blown away by it.

Yesterday I got home and told everyone that nothing could make me go back to Houston next week. That I needed to be at home and I was going to put my foot down. And already I have caved and am probably going there next week. But I’m going to figure out an alternative to driving myself because it truly does hurt my health and I cannot afford it.

What has convinced me to go next week? A visit with GI radiation oncology to talk about some palliative radiation to my pelvic mass. It would help with the pain and discomfort I am having there as well as the constant bleeding. It is a tough call because I probably have to do radiation and then be off it for 2 weeks before I can start my next trial. But that means the radiation dates will be all around Christmas. There is a chance this is my last Christmas and how do I want to spend it? What memories do I want Marlowe to have of it? Of a normal family holiday at home? Or a holiday at the hospital in an extended stay hotel, showing her the lengths I will go to so I can be around for her as long as possible? There’s no right answer and I don’t know how to weigh it or what the costs to my health are for various choices and I don’t think anyone can tell me. So I am writing it here, and I am going to discuss it in therapy this afternoon but otherwise am going to loosen my grip on it and just see what happens.

My joy from this past week was definitely seeing how much people showed up for me in my moments of vulnerability. I am humbled by what generous friends I have. And I know that I only heard from the few I opened up to this week and had I shared more widely I would have had even more amazing offers. Oh, and there was literally a present waiting for me at Jacki’s house when I got there that a friend figured out how to get delivered to me there. Truly, I am fortunate to be so loved.