Yesterday, December 6, which was exactly 6 weeks post surgery and 5 weeks past my initial diagnosis, I had my first chemo infusion treatment for Endometrial Cancer Chemotherapy.
My best friend and house mate Gayle and I got up early, although we both actually slept pretty well which has been an issue for both of us.
Since we were up early, we decided to grab breakfast on the way from Big Apple Bagel. This is one of Gayle's favorite places and I had not tried it yet, so it was fun to try something new and it was also the perfect thing to set my stomach up for a good treatment session. An egg and cheese bagel for the win!
We arrived at the MD Andersen Cancer Center at Community North Hospital in Indianapolis at about 7:55. We checked in at the main desk on the first floor. They sent us straight up to the second floor. The patient care technician, Tracey, came to get us soon after we sat down. She took us back to the infusion room that I would be in for that day, which was room 214. I think they put the newest patients closest to the nurse's station so it was not the quietest station in the world and the infusion chair's arm was pretty hard to work. I needed help a few times to get settled back in my chair.
I met my nurses for the day Reilly and Megan. As Reilly started an IV, Megan updated and made sure all of my information was correct in the computer system.
They start each Chemo session with blood work just to see how my numbers are doing. Since this was my first session, all of my numbers looked amazing!! I joked with the nurses that with numbers that good, I should just head home. If only it were that easy.
Everything was back in normal range, including my iron and hemoglobin, which had been big issues throughout all of my surgery and treatment leading up to surgery. It was great to see and good news to start the day.
I saw my oncologist and the nurse advocate. My oncologist for this stage of the game is Dr. Sonnenburg. We discussed the blood work with him and asked a couple of questions although he teased/mocked us for not having many questions since we had had more than a hundred during the first meeting with him. We told him the nurse educator did a far better job responding to all of our questions in the teaching session we had on Monday :-)
The next thing that they do in each chemo session is what they call the premeds. These are meds that help ease the immediate impact to your body of the chemo drugs that. As Gayle says, "they give these so you leave happy and they can say goodbye to you before you start to feel like crap." I'm pretty sure she's not wrong. My premeds include steroids, antinausea medications, Pepcid and some Benadryl to try to stave off any allergic reactions.
Stay tuned. There's more on that later.
The pre-meds have to stay in my system for about 30 minutes with just some saline while we wait for them to have time to take affect. If you're keeping count, by this point we've just been sitting around in and mainly waiting for about 90 minutes.
Although this was when Gayle got her biggest workout of the day.
One of the potential side effects of this chemo is neuropathy or numbess/tingling in your hands and feet. I would really like to avoid this as much as possible. So we have done a lot of research (by we, I mainly mean Gayle) on what can be done to ease the impact of the drug and try to prevent the neuropathy. There are drugs, like Gabapentin, that will treat this. However, rightfully so, the chemo doc doesn't want to mask any of the side effects, other than nausea. They would very much like you to not get nauseous so they'll give you all the drugs you need for that. Back to the neuropathy, the two things that people recommend are wearing compression gloves and compression socks, as well as ice gloves, and ice socks. There is no scientific evidence on this that we can find, but a lot of anecdotal reports of it helping. There is no way of knowing if these are just people who wouldn't have had the symptoms but it's worth a shot.
So Gayle got all of that stuff for me (thank you bestie!) and now it was time to get it all on and ready to go since it needs to be on for about 30 minutes before treatment starts. I put on the compression gloves and she helped me put on the socks since I was hooked to the IV and am basically not allowed to move my left arm in any way that might kink it. Gayle wrestled the ice packs into the ice gloves and the ice socks and helped me get those on as well and at that point, I basically can't do anything because I am covered in these funky, looking gloves.
So then we it was time to get started with the actual infusion.
Reilly and Megan started it, and they started with some saline as well as the drug paclitaxel, which is the first drug that I get.
This is the one that we know can cause an allergic reaction. The interesting thing is the drug itself is not what causes the reaction. It is the preservative inside of the bag that keeps everything stable that people react to. So after about five minutes, we thought we were clear and then almost immediately I had a severe allergic reaction and got to experience my first epinephrine injection straight into my leg as well as my first albuterol treatment to help open my airways back up. It was very scary but within just a couple of minutes I was feeling better.
The nurses did an incredible job. Gayle said she thought at one point she counted nine people in that tiny little infusion room and I was back to normal within probably no more than 15 minutes. Gayle said that I had red face that looked like a pomegranate so I definitely wasn't pretty. It was a pretty intense reaction to say the least. However, while you can't hear it as I am speaking this to text before I edit it, I'm actually laughing about it at this point because I was very safe and I was in the very best place for this to happen so hopefully this will be the only one of those that I will have and if not, then we know what to do and we know what to expect.
After the reaction, they gave me additional Benadryl and more steroids so those had to sit for 30 minutes before we could restart and then we restarted the infusion at a much slower rate. I had a very, very, very minor moment of reaction, but that passed and I was fine, so no additional treatment needed. We were able to keep going no problem
So, now it was just time to sit and let the drugs drop in. Infusion sessions when you get to this point are long and boring. I did get up to go to the bathroom a couple of times and I took one walk around the floor to get up and stretch my legs because it was a long day of just sitting in that chair.
Paclitaxel took about 4 1/2 hours all together I think - even though it was only supposed to take 3.
The nurses then started the other drug carboplatin. It's done really quickly. It's just a 30 minute infusion which is nice after the 4+ hours that we had with the Paclitaxel.
When I was all done, they pushed a little saline through to flush everything out and got us unhooked. Gayle was kind enough to shoot this little video to commemorate the moment.
P.S. I tried like crazy to get this onto 3Speak instead of YouTube. Apologies.
I headed up to the third floor of the cancer center so that I could see my gynecological oncologist for my surgery clearance.
The interesting coincidence is the gynecological oncologist's office scheduled that appointment for that specific time of day on the day that they scheduled my surgery, and it just happened to coincide with the day my first chemo got scheduled. The gynecological oncologist gave me some grief because I had messaged him thinking that the chemo session would end as scheduled and that I'd be early and if I could come up and get snuck in. He said sure. So then he was giving me grief that he had to stay late for me so that he could get me in since my appointment and infusion took so long, but I am now cleared from surgery. I can lift and move, bend and twist and do all those things. He said I'm healing well internally as well as where I can see the incisions externally. I'll see him again in six months.
So chemo session one is done. The only lasting reaction I have at this moment is a little rash on my chest. I am going in this morning to get fitted for a wig so hopefully one of the nurses can take a quick look at that. As for the wig, thankfully my insurance actually covers one a year, so this is one of the few good things about where my treatment is falling in terms of cost and insurance. I may be able to get two wigs if I want
So I will maybe have another update later today or tomorrow with some fun wig pictures but until then thank you all so much for your love and your prayers and your support. We are going to need all of that in the coming days. This is the first day of a marathon and I'm glad that I'm feeling good in this 1st mile and I am incredibly grateful for Gayle and her support as well as all of you - my family and friends.