The last time I wrote I had just found out that the batch that was created for me had failed. Treatment was halted until today – February 3rd. After a lot of heavy emotion in the morning and snuggling with Mila, my parents picked me up to bring me to the airport.
Everyone at the airport was strangely over the top nice to me. I almost thought that maybe my parents had put a sign on my back that said “Be nice, I’m going through chemo.” The woman in TSA helped me put my bags on the belt and let me keep my sweater on right after she yelled at the people in front of me to hurry up and put their bags up, the gentleman searching bags (who had to search mine because my friend, Kim had gifted me a jelly pineapple to squeeze in stressful situations in the hospital was super nice and cracking jokes with me the whole time and even though it was considered liquid – let me keep it, the woman in the convenience store was super friendly too. It made me think about how a little kindness from strangers can go a long way. You have no idea what the person in front of you is going through.
The flight over was long, but found out that when I rebooked my flight from the last treatment mishap – the Alaska Airline employee upgraded me to Premium Class (not first class, but not coach either)! I have a feeling he did this after I had explained my whole situation to him. I watched that Bruce Springsteen movie, Blinded By The Light. Kind of a tear jerker, but kept my mind busy for the duration of the flight. The closer we got to landed, the more the reality of what was about to happen started sinking in. The past weeks I’ve had thoughts racing through my head of all the what ifs. What if this doesn’t work? What if this causes me more harm? What if something goes terribly wrong?
Unfortunately, what option do I have left?
I arrived at the hospital and got checked in. I showered and scrubbed down in the hottest I could get the water to go – I wouldn’t be able to shower for a few days because of risk of radiation contamination to my surroundings. I was shown my room – covered in thick paper and duct tape on the floor, plastic wrap on all the handles, sink, shower, toilet, remote, phone, ziplocs over the light switches (so scientific….ha) even parts of my bed were wrapped in plastic.
My nurse went over my medication list and IV therapy began trying to administer two IV lines. After five total tries, 4 numbing shots and an ultra sound they finally found two areas that were successful. It took over an hour and despite the numbing that kept wearing off – was pretty painful.
Next thing you know, the doctor comes in who originally saw me and confirmed that Azedra was the right treatment for me. His resident went over all the medications with me again and asked me a long list of questions.
Next, waiting on anti-nausea medications because I was likely going to be extra nauseous after administering the drug.
By this time it was 6:15pm.
The nuclear medicine doctor I had been working with and a new one I had been introduced to today walked in. The new one already had a bit of an attitude with me when I had a long list of questions for how today would go. We didn’t seem to hit it off great, but I didn’t read much into it. He had said things to me like, “Like I was saying…” implying there was no room for me to ask questions and get confirmations. I also told him that I have a baby at home and that is the hardest part for me. He said “He totally understands that feeling.” I responded with, “Oh, you have kids?” He said “No, but we have patients that do.” Ok, buddy. Then you don’t understand AT ALL. You aren’t getting chemo with a seven month old in a different state that you have to be in isolation from. Don’t downplay my feelings and say you understand.
Anyway, he says “We have some bad news…” I thought he was joking so I laughed and said, “Haha..yeah right!” He didn’t laugh.
He continued “Unfortunately the drug has expired.”
Ok, what the f*ck does that mean?
I said “uhh..tell me more. I don’t know what that means.”
“The drug we have for you expired and we can’t inject it. We can hopefully get another batch ordered for you and flown here or reschedule for some time in the future if they can’t send it soon.”
DUDE! I have cancer. Let’s keep putting it on hold. Just like the mishap in December, it will just wait, right?!
I asked them to leave the room so I could call my family and decide where the hell I was going to go tonight. They gave me the option of flying home and back and fully paying because it was their error.
Oh, and by the way – the drug expired at 5pm! They had plenty of time to inject it before the error occurred.
I called Toby and my mom. Both, obviously, were livid. My life isn’t just on hold because I’m here.
I’m not booking a hair appointment that needs to be rescheduled for a couple days later. This is my life. This is my family’s life. This mess up is a big deal.
After a lot of emotional conversations with Toby and my mom, the doctors came back in saying “We have some great news! We can get the new medication on Wednesday for you!” I immediately corrected him and said “This isn’t great news. Great news was everything running perfectly and the drug already being administered and counting down the days until I’m better and at home.”
I was upset that this doctor said “whoops,” and “sorry,” with no sign of remorse.
At this point, I’m sitting here still in the hospital. I’ll get some freedom tomorrow while my plastic wrapped room sits with nothing happening in it.
I don’t know what to do and honestly feel like I’m in a hell or a prison. A very disorganized prison.