I haven’t posted in a while because I haven’t had anything good to say. This week got the best of me and I am down and out emotionally. It’s been 7 days since the Adria leak and my arms are still killing me. I fight with myself everyday to try and stay positive and not let this process get the better of me — but it’s been a serious struggle.
Since I don’t really have anything inspiring to offer any of you today, I’ll just recap our experience last week. On Tuesday I went in for my AC infusion as usual. All was fine until the Adria push. As you know, Garrett was administering the drug personally and decided to stop the push after I kept complaining about it. Once we arrived home, Garrett called us to tell us he’d reached out to some colleagues about what happened and they suggested that I get the antidote. He explained that he was in the process of locating a practice and/or hospital that had the antidote in stock. Apparently the stuff runs around $10,000 a pop (yikes). He said he’d already spoken with CPMC and they didn’t have any, but he was about to call in a favor over at UCSF, where he used to work. In the meantime, he’d ordered the second and third infusions to be delivered to his office the next morning for me — so we knew I’d be getting those from him directly. It really just came down to where and how I would get the first infusion on Tuesday night.
The scary part about all of this was that I had to get the antidote into my body within six hours of the onset of pain. So we were up against the clock. Garrett called us back within 30 minutes or so and told us to head over to the UCSF ER. I was sent with strict instructions. He told me that my name would be flashing on their screen as a high priority and that I should not wait more than 5 minutes upon arrival. WHOA. He also said that he wanted them to avoid inserting another IV anywhere near the vein he had used. His preference was to go higher up on that same arm or to use a vein in my surgical arm (which I thought was completely off limits for ever more — but apparently not in a situation such as this).
So we arrive, and Paul drops me off. I walk in on my own because he has to go park the car. They were waiting for me and I was escorted to the back past a room full of other patients quietly waiting in the ER. Everything was really rushed. They took my vitals but didn’t ask me for my insurance card. Not really sure what that was all about — hope we don’t get served up some insanely huge bill in a few months.
I hear the nurse talking about an emergency that’s coming in and then one of them impatiently asks “Wait! Where the girl with the arm?” to which the nurse who is taking my vitals, replied, “she’s right here.” Holy crappers, they really were waiting on me as a high priority — this must be really serious.
Paul arrives and we are moved to a room down the corridor. The ER is really busy and you can hear people wailing in pain. It’s really distressing. Once in the room, I down my hospital gown and climb into the bed. Within a few minutes, I realize there is another patient in the room with me, we are separated by a curtain. But that curtain can’t conceal her utter crazy! From what I could gather, she was an elderly British woman with the flu. She kept hacking up a lung and screaming out for food. That’s when I insisted Paul and I don surgical masks. Hell if I’m going to catch the GD flu while at the ER.
A few more minutes pass and a male nurse comes in and says he has 10 minutes left on his shift, so he’ll be inserting my IV for the infusion. I instruct him on where to place it per Garrett’s orders. Then someone from the chemo lab came up with the antidote bag (BTW, the drug is called Potect (aka Dexrazoxane)) and she said that while the bag says to drip it over 2 hours, she wanted him to do it in 90 minutes. (Just a quick aside for all of you who will inevitably go on to research and Google Potect and all of it’s side effects, please keep all the information to yourself. I have no choice but to put my 100% faith into this drug and assume it did more good than bad to me — so if you learn otherwise, just do me a favor, and spare me. I really don’t need more information to make myself crazier than I already am).
Flash back to the male nurse who is now feeling the pressure of getting this IV in before his shift ends and is also feeling the rush of getting this antidote dripping within my 6 hour window — and enter unmitigated disaster. He went after a vein around my right elbow area and failed MISERABLY. He got the needle in fine, but when he was threading the plastic bit, it hurt like a bitch. I looked at Paul for strength and saw him gasp and hold his hand to his mouth. Then I felt it — wetness all over my arm. Blood was shooting out everywhere. It was all over my gown, the gurney, the floor and me. Seriously? Seriously! It looks like a bear attacked my arm at this point.
After this goes down, I tell the nurse to just use my surgical arm. So he went in and placed the IV without too much trouble. Then he placed the antidote bag and set it to two hours. Paul had to correct him and tell him to make it 90 minutes. OMFG.
During our 90 minutes, I was visited by the ER resident as well as the doctor in charge of the ER. They did all sorts of neurological and strength tests on my hands and arms. Interestingly, the resident confessed to me that she’d never heard of the drug they were giving me and that Garrett had called in very specific instructions on what he wanted them to do for me. I suppose I was an anomaly to everyone in that ER! She said she was going to go research it and would be back to explain what the drug was doing. WTF?
Eventually she did come back and tell me that the antidote has a 96% cure rate and it works by circulating throughout the bloodstream and protecting my cells from harmful free radicals that are created by Adriamycin. I felt a lot better hearing this news. I also felt better knowing that the antidote wouldn’t undo the Adria that I did have in my system. It would’ve sucked to have to repeat the third infusion all over again.
So, we eventually are discharged and head home. The cancer blues have fully settled into my bones at this point. Paul and I argue in the car about the fastest way to get home. I am just crabby and beyond uncomfortable.
The next two days (Wednesday and Thursday) see us back at Garrett’s office in the late afternoon. He administers the second and third antidotes into my surgical arm and keeps a watchful eye out over me. By the third day, I was stupid enough to do some Googling on my own about Adria leaks and read that amputation may be involved HOLY FUCK. It was that day that I lost my shit. I was just quiet and inconsolable. I didn’t speak to Paul the entire drive up to Garrett’s office because I was so stuck in my head. The pain in my arm wasn’t getting worse, but it wasn’t getting better. Would I need my arm chopped off on top of all this other fucking shit?
When we arrived for the third infusion, Garrett could tell I was at my wits end and he assured me that amputation was not going to be needed, that the Adria damage had been mitigated and that it would take a couple weeks of pain to get my arm back on track. He continued to check in on us every night and reassured me that all will be fine.
We have to go back to see him tomorrow so he can get a really good look at my remaining veins and make the game-time decision of whether I need to go have a port inserted prior to my fourth, and final AC infusion. We are assuming, he’ll say go with the port. So I have that to look forward to for the duration of chemo. Ugh. Oh, and the half moons on my fingernails (well my thumb nails and my pointer fingers only, so far) have started to turn black. I hear this is yet another lovely side effect of chemo. I cut all my nails down short and am going to walk over to the Scarlett Sage Herb Co on Valencia later today. I hear that rubbing tea tree oil into your cuticles can help you avoid having the nail detach from the bed entirely. Jesus Christ.
What a shitter of a week. Early on I tried to be a trooper and put together cute outfits. Doing this always makes me feel better. But you can tell by the end of the week, that I’m totally fed up. But, I’m including all these pictures here for you to see, because this is what cancer looks like this week for me.
Hopefully each day will get better from here. Hopefully my energy and sanity will be restored as quickly as they left me. I have a lot of social commitments to look forward to this week, hopefully all of that will help pull me out of my funk. If not, I may have to do some retail therapy right quick!
OK, enjoy these pictures, they are all over the place — just like my mind today!