I had some decisions to make the last time I came home from Portland. After meeting with my surgeon and endocrinologist whom I trust more than anyone – we were all in agreement that the Azedra chemotherapy was the path I would need to go. I felt comfort in knowing that everyone was on the same page, but at the same time felt torn knowing that this meant I would be receiving heavy amounts of radiation, more trips away from my family, and would be locked in a hospital room totally alone until I was deemed as safe for the general public, that length being extended because no one is confident they know the exact amount of time it would be safe for me to be around Mila.
The next step I had to take was call the Portland oncologist to let him know that I had made my decision to follow through with his recommendation on treatment. I had the idea that it would be a lengthy conversation and was scheduling myself to have a bit of privacy away from Mila where Toby could watch her and I could be completely focused on what the oncologist was going to tell me.
I was wrong.
All he said was, “Ok, Lauren! I’ll have Adam call you! Byeeee!”
I felt like I was scheduling a meeting with a business partner or something and his assistant was going to call to schedule it. It was so underwhelming that I was almost shocked that the phone call took less than 30 seconds, yet would have such a big impact on my life and my future. I try not to get offended because I know this doctor sees it all day, everyday, but like….I’m not scheduling a lunch date. I’m scheduling something to hopefully save my life.
It was also a bit irritating and relieving at the same time that this oncologist I likely wouldn’t even be seeing during treatments. I’m used to my surgeon, endocrinologist and perinatologist constantly checking on me while I’m at the hospital during pregnancy, surgeries, etc. strictly to say hello and give me hugs. It’s irritating in the fact that, this doctor doesn’t seem to care, he is making a decision by barely looking at the results of my chart, and he gets the BIG bucks.
It’s relieving in the fact that everyone else I’ve met with at OHSU is extremely nice, knows my baby’s name, asks about her and sits down with me to have a genuine conversation to see if I’m ok and what I need.
I was told by my surgeon that I couldn’t wait any longer to get this treatment done, so fast forward two weeks and here I am…in Portland again, this time alone.
This trip up to Portland is for what is called dosimetry. You are injected with a small dose of Azedra and the process basically measures how much your dosage will need to be during actual treatment. You get scanned an hour after the injection, 24 hours later, then again 72 hours later.
The plan is by 72 hours to have it fully out of my system so I can fly back home that night and snuggle in with Mila (and Toby of course). We’ll know for sure on Thursday, then we’ll have a better idea of how long I’ll need to be away for round one.
Flying out yesterday was a bit nerve wracking. I’ve flown places solo several times. It’s not a big deal, but knowing what this destination brings just puts a damper on everything. The morning of, I just cuddled, fed, and played with Mila. My mom arrived so she could basically follow me around the house with Mila while I packed. Toby had a few gigs in the morning and came home, rushing to get everything done before we left and he had to take over with Mila. He knows what he’s doing, but as most parents know, getting as many responsibilities done before being solo with a 4 month old helps relieve a bit of stress!
At 1:30pm, I had 30 minutes left before we had to go and realized I hadn’t eaten anything. I was too busy, too emotional, too much happening to even think about food. Toby picked me up a paleo coffee cake from one of our favorite paleo bakeries – Nectarine Grove. I took it with me.
As I was leaving the door and watched them snuggling together I started to cry a bit. I knew the days were going to go by slow for me. I had to shut the door quickly before I got anymore emotional.
My parents took me to the airport as I picked on the coffee cake a bit. Once at the airport I grabbed a drink to mellow out and a salad to hold me over. I had to force it down, knowing I’d arrive late and I needed some fuel. I don’t know about you, but nerves always wreck my appetite. Anything emotionally draining is always a good time for me to lose weight because I just can’t eat.
The plane ride over was lonely.
The gentleman next to me asked me what brings me to Portland. I was desperately looking for someone to talk to, something to help the loneliness on the flight and blurted out “getting chemo.” I’ve been asked so many times, while checking into security at the airport, at the gate, the car rental place, restaurants, etc. and I always come up with some generic reason for why I’m in Portland. I honestly felt bad for unloading on this poor guy, he handled it well though and told me all the good local spots to check out in hopes of keeping my mind off of what was happening.
It’s such an awkward thing when you’re going through something heavy, exciting, emotional that you feel like you have to sensor what you’re going through to shelter the person that asked.
When I arrived at my hotel that night I couldn’t turn my mind off. I watched TV for a while, well actually had it playing in the background as I starred at the baby monitor and watched Mila. I finally fell asleep, waking up at the normal times Mila normally starts to wake at night and stayed up watching her get her midnight feed.
This morning I woke up at 6:30, looked at the monitor and Mila was just starting to wake. I stayed in bed for a while and did absolutely nothing. I took my time getting up, getting ready and getting out the door. If I couldn’t be around my family I was going to try my best to relax.
I went to Case Study Coffee in the morning, worked on my computer and took photos of all the pretty streets, trees and delicious coffee. Still trying to find some joy in this shitty situation.
Shortly after that I headed to the hospital.
I needed blood work drawn prior. I got totally lost. OHSU is like the Disneyland of hospitals. It’s beautiful, there’s statues that look like Walt Disney waving as you drive in, I don’t think it’s Walt Disney though. Probably some rich founder! I finally found the lab where a phlebotomist put a heat pack on my arm because she couldn’t find a vein, then proceeded to go on Walmart’s website and look for teal hair dye and talk to her coworker about going teal or dark blue. Then began to talk to me about professionalism. Honestly, I don’t really care what you do while I’m not there, but it’s just so weird to me how different people at a hospital just brush off whatever their patients may be going through. Maybe I had a short temper, or maybe it was the fact that when I walked in and sat at her chair she grabbed my closed water bottle out of my hand and said “No food or drink aloud! I’ll put it in the lobby for you! Gotta follow the rules.” Whatever, lady.
I then walked back to the nuclear medicine hall, in the basement where they put an IV in my arm, had me take a pregnancy test (wouldn’t that just be ironic?), and injected the Azedra, where three men watched in total silence like they were ready for me to spontaneously combust or something. They took the IV out and put the tubing in a double glove and very carefully placed it in the nuclear biohazard waste.
It’s honestly pretty unsettling that these guys were SO concerned with this medication touching any part of them or any equipment, yet they were injecting it all directly into my vein.
Next, I sat for 30 minutes in a room full of recliners and just looked at the Christmas ornaments on Target’s website. Trying to keep my mind busy anyway I can. I can say now I’m REALLY looking forward to decorating when I get home. That always brings joy! And now plopping Mila down in front of the tree…oh my god, cuteness.
After I waited the 30 minutes, I was laid on a table for 20 minutes, scanned with an MRI type of machine and I was so exhausted I immediately fell asleep. It was a nice power nap. I woke up a little disoriented with that feeling of when you wake up in a different area than you normally sleep and are like, “Where am I?”
I now have to come back tomorrow to see how this radioactive stuff is going through my body.
Tonight, I grabbed a heaping bowl of pasta from Grassa down the block, ate it alone at the restaurant which is lonely, liberating, and kinda boring and now I’m snuggled back in bed watching Toby cuddle Mila to sleep, Below Deck reruns are on the in the background and I’m sipping on Oceans Away Pine Coco cider pretending like I’m in Hawaii.