Treatment 1 of 12: Into the Unknown

It was a rush in the morning to get Maddie to school and then to the coffee shop to get a latte and a scone before leaving for the hospital. I also forgot I had to wet my hair (which ended up maybe not being worth it) and pack my cooler of ice packs for my feet and hands.

We arrived at the hospital on time for my 8:30 am appointment and completed the check-in process of taking my blood pressure, temperature and weight. I was escorted back to my infusion room that ended up being #19! My high school lacrosse number (or one of them)! It was also a really nice corner window unit. We were looking out on the park where we took our wedding day pictures. My actual day did not exactly go to plan, but this ended up being the itinerary:

• 8:30 AM – Check-in, escorted to infusion room
• 8:45 AM – Get port set-up and draw blood for labs
• 9:30 AM – All my blood test results came back
• DELAY
• 12:00 PM – Start Herceptin infusion
• 1:30 PM – Start pre-med infusions including Zofran, Dexamethasone, Benadryl and Pepcid and get my cold cap on
• 2:00 PM – Start Taxol infusion
• 3:00 PM – Post-Infusion Cooling Session
• 5:30 PM – Go home…finally!

Preparation for infusion

Before I could get any of the drugs, I needed to have access to my port set-up and then blood drawn for labs. They completed my:

• Magnesium
• CBC with Differential
• Comprehensive Metabolic Panel

Once my lab results were back, we needed to wait from the doctor for the all-clear. I actually think we only needed to wait for the all-clear if my labs came back abnormal in certain categories. Unfortunately, my bilirubin came back high, which is normal for me. Whenever I get my metabolic blood panel done, my bilirubin levels are always slightly higher. People (like my dad) had told me that I probably had Gilbert’s Syndrome, which I found out is a genetic condition where people routinely have benign, but slightly elevated bilirubin levels. Out of curiosity, I looked up the genetic markers for Gilbert’s and then looked at my 23andMe raw data. Sure enough, I have the genetic variant for Gilbert’s! What this meant was that the nursers weren’t comfortable moving forward until they could talk to the doctor who was in late that day. We didn’t end up getting clearance for awhile. I was going to have to meet with the doctor anyways, so sometime between 9:30 am and noon, I went and met with the doctor.

When I spoke with him, I told him about my Gilbert’s syndrome, which was what he suspected. He told the nurses it was good to proceed so they finally ordered the rest of my meds and we could go ahead with the transfusions! The delay also ensured that Sean and I were able to catch the exciting finish to Stage 11 where Jonas Vingegaard from Team Jumbo Vista took the Yellow Jersey from Tadej Pogacar in the Tour de France! Not to mention the totally brutal final climb!

Infusion time!

My pre-meds and chemo drugs showed up a little bit before noon, which meant it was time to get the party started! The Herceptin came first and the nurse told me it would take about 90 minutes for the entire infusion. I’m not sure if it will be a bit shorter the next time, but once I get to my maintenance Herceptin, those infusions will only be 30 minutes. I was a bit nervous when they started the infusion because there was a chance of having an unfavorable reaction. After all the delays I had already had, the last thing I wanted was something else that would require troubleshooting and potentially an uncomfortable reaction. Luckily, it went just fine!

After the Herceptin, we started the pre-meds. They gave me the Zofran preventatively for nausea along with the Dexamethasone (steroid). The steroid would help to protect from any allergic reactions to the Taxol. After that drip, I got the Benadryl which made everything sloooooow down. That really hit me and made me super chill and tired. When I started the pre-meds I also started getting my scalp cooling cap on, hook up to the cooling machine hooked up and turned on for my pre-infusion cooling session.

The scalp cooling went much better than I was afraid it would go. I did take an extra-strength Tylenol about 15 minutes. Because of the delay, it was totally useless to waste time wetting my hair at home! I actually thought I was going to get the Taxol first, but given the Herceptin is first, I’m not sure it makes sense at all. My hair was almost totally dry. I had to go to the tiny bathroom sink and wet my hair down and then smother conditioner on it to prevent too much sticking to the cap. Then I had to pull the cap really hard down on my head to make sure there were no gaps or bubbles! After about 10 minutes, my head just felt numb and it wasn’t bad at all.

Then it was time to start the Taxol. This was another intense moment for me, because this is where there was a risk of anaphylactic shock that would wind me up in the Emergency Room. That’s actually very uncommon, but, fortunately, it did not happen to me. I was so doped up on the Benadryl though, it was hard to care about anything. I also needed to put my cooling hand mitts and foot socks on. The feet were fine, but the hand mitts were unbearably painful! I wasn’t sure I was going to make it. I did the best that I could and I felt like such a baby! The best I could do was keep my hands in for 10 minutes and then take a few minute break. The tips of my fingers hurt so much. With all of this cooling stuff on, I was incredibly cold. They piled tons of blankets on me to try and keep me warm but I still shook with cold.

Luckily, this transfusion was only an hour and it, too, was uneventful. It really did feel like it was over before I knew it. By now it was 3:00 PM and both Sean and I were tired of being at the hospital. I was also tired from all of the drugs, too. But I needed to finish up with a 90-minute post-infusion cooling for my head cap. It wasn’t bad, because my head was still numb, but I was tired of wearing the thing for 3 hours! Once the cap came off, I had a really nice frost going on the top of my head so there was no question my head was cold!

My overall assessment

All in all, I can’t say it was a horrible day. They felt really terrible that there was such a delay, but now that we know my bilirubin might sometimes be high, there probably won’t be the same delays in the future. All of my sessions will be in the morning, so I can expect that it’s going to take at least 6 hours, so I will probably be there until 2-3 PM. But I’m really thankful that everything went well and I didn’t have any bad reactions to any of the drugs! To be honest, it was maybe good that there were all those delays because it made things more boring and annoying and less scary. I was very scared in the morning on the way to treatment. There was so much uncertainty about how it was going to go and I was afraid of the toxic drugs that would be coursing through my veins. I’ve got one treatment under my belt and now it’s time to go home, relax and get a good night’s rest!