The past couple weeks have gone by quickly and slowly all at the same time. I was told that my next treatment date would be December 9th. I could arrive that morning and they would start the inject shortly upon my arrival to OHSU.
I wanted to spend all my time at home, snuggling Mila between the last trip to Portland and this new one. I also wanted to see all of my friends and spend time with my family. Toby, Mila and I pretty much had plans every night with different people to catch up and to somewhat just avoid the reality about what was about to happen on December 9th. We did everything from celebrating Thanksgiving – a special day for us as we found out last Thanksgiving that IVF worked for us and our little embryo took, to coffee dates, dinner dates and some hot yoga thrown in there too.
Everyday that got closer to leaving, I had a harder time putting Mila down. My anxiety started to build and the idea of going into a room in isolation, with nothing but my own thoughts to keep myself busy just sounded like torture. I wasn’t looking forward to any of it, but I was looking forward to getting this step over with so I could return home and not have to think about the next trip for another three months.
Everyday since I found out what treatment looked like has been full of thoughts rushing in on having to leave Mila and be alone to go through this. I was looking forward to having those thoughts behind me and being able to go through my days with my family and not have them drowned with the idea of future treatments happening. I deserved that.
On December 5th I called OHSU. I had not heard from anyone since I left last time on November 21st. Last time I had left, they told me that they would have to scan all my belongings that I brought into the hospital room with me to see if they were deemed safe from radiation to take back home with me. I was told my cell phone, laptop, basically anything that my hands touched would be put into bags. I’m still not sure how I’ll be facetiming Mila and Toby with a plastic bag over my camera lens, but we’ll make it work I guess. The question that does come to mind though is – what if my cell phone and my laptop are not deemed safe from radiation when it’s finally time to return home? Do I leave it there? Does it get disposed of? Do I have to wait for it until it is “safe”? When I spoke with the team on December 5th with all of these questions I was basically told to not wear or bring any clothing with me that I was attached too – the possibility of the clothing needing to be disposed of was high. As far as more expensive things like my laptop and cells phones, they would have to scan. There wasn’t a real direct answer on what would happen to my belongings if they did have radiation detected on them, but in short – I was told that there was possibly an area they could store them until my next trip up when I could retrieve them. This didn’t make sense to me because my next trip up wouldn’t be for another three months and how does one survive in this decade with no cell phone or laptop?
Clearly, these are still huge questions for me. Thinking I need a cheap, old iPhone to get by so I don’t have to chance leaving behind my valuables. Aside from that, I knew I had some old PJs stored away in my drawers that I wouldn’t mind parting with so I wasn’t too concerned about that. Basically, anything that I touch will have radiation transferred to it so I think preplanning once I arrive is going to be very helpful. The conversation ended with “See you Monday!”
That same afternoon around 4:30, I received a call from the same team. Thinking maybe they left something out from our conversation that morning, I answered quickly with Mila in one arm and my phone in the other. On the other line I heard the head of nuclear medicine say, “Hi Lauren, unfortunately we have some new news…”
That word sticks out and is something you NEVER want to hear in any medical conversation, let alone one that precedes you going in for chemo.
“Unfortunately the batch of Azedra didn’t work.” Ok – what the hell does that mean? The drug in general doesn’t work?!
Turns out they made the batch that was designed for me incorrectly. I drilled them with questions because, how could you not? How often does the batch “not work”? What does this mean for me now? Dude, I bought non refundable tickets because I was told it would for sure be happening December 9th! What does this mean for me now? What about my health? What about this disease progressing?
I was shocked. I was relieved. I was disappointed.
I was excited I didn’t have to leave yet. I just got more time to spend at home. I was concerned about what this meant for the growth of disease in my body. I was just really freaking confused.
After going back and forth a bit, the next available date that would work for OHSU and the drug company is February 3rd. That’s a long way from now. It’s a lot to wrap my head around because with disease progression, there is just so many unknowns. It’s risky. I’ve had to put it off for months for pregnancy, healing, taking care of a newborn Mila, then rush rush rush to get this taken care of and now everything is halted because someone at the drug company made a huge, very expensive mistake.
I’ve chosen to focus on the positive of being home with my sweet baby girl for longer. I’m enjoying not having to cram everyone’s visits in so quickly.
I’ve also had to sit on the phone for countless hours explaining to the airline, hotels, car rentals what is happening and hope for a bit of empathy in changing the dates without charging me. Unfortunately, I’m not coming out very lucky on that. My ticket was luckily switched without an issue, my mom’s got a huge fee, the hotel will not budge and the car rental was prepaid so they won’t budge either. It’s upsetting that these huge companies don’t want to help, or the employees just don’t care. I’m guessing they hear it all too often though. Something comes up to snag someones vacation plans and they come up with a sad excuse. The employees have likely become numb to it and think it’s a lie to get a refund.
Unfortunately for me, it’s the truth.
I’m continuing to let the good outweigh the bad. I’m continuing to immerse myself with joy. My joy now comes from sweet baby smiles, getting to take family photos of loved ones and friends, getting to be in family photos with my family of three for the first time, and enjoying the holiday spirit as I deck out the house in “Baby’s First Christmas” paraphernalia EVERYWHERE.