As a lot of you know, I started my chemo treatments yesterday (Wednesday) – and boy was it a day!! We got home from Florida Tuesday night and lemme tell ya, we had a blast! It was so fun to just hang out and relax with our family not to mention visiting the parks and eating more food than should be consumed in short periods of time! It was my dream ever since having Evan to take our kids to Disney World and it was so amazing to be able to do that thanks to the great people at For Pete’s Sake charity. I cannot say enough great things about this charity – they took care of everything for us: right down to the limo ride to and from the airport. That’s right, we were ballin’! Haha, here’s a few highlights from the trip:
We had a great time and great weather – and a pool. It was very hard to come home to an extra foot and a half of snow and the cold air, but we did. Sigh.
So first thing Wednesday morning, like as in 5:45am, my mom came over and picked me and the kids up. After dropping them off at daycare, we started the familiar yet still frustrating trek to Philly. Fast forward two hours (traffic) and I am checking into my oncologist’s office right on time at 8:30! Here’s where the seemingly straightforward on-timeness ends. I knew I would have to go back for bloodwork first so I wasn’t surprised when they called me back for it. Then came the pleasant surprise of it being just a finger prick!! Score! Or so I thought. Then the girl puts about 8 tubes in a bag and tells me to ask them to draw it when they put my IV in. Okey doke. So I take my baggie of tubes and go back out in the waiting room. A few minutes later a nurse comes up to me and asks why I have the tubes. “Ugh…they gave them to me…” She explains that it not only needs to be drawn before my treatment but ran before I can start my treatment. Ok, back in for the blood draw. The lady gets the blood, puts my bandaid on, and goes:
Lady: “Wait, are you in the research study?”
Lady: (rushes over to other end of room and comes back with bag full of tubes with my name on it) “Is this you?”
Lady: “Oh wow. That’s a lot of blood!” (counts tubes) “I never drew so much from anyone before.”
And here’s the damage, 23 tubes later:
I think she thought it was really weird that I was taking pics, but meh, I don’t really care anymore. After all this blood fun, I had to go meet with my oncologist and the head research nurse because they wanted to make sure I was aware of the new side effects being added to the list and I had to sign more papers. I am getting the 10mg/kg of ipilimumab, which is over three times more than what’s currently approved for stage 4 patients (3mg) so they wanted to make sure that I understand the symptoms, what to watch for, and who to call if I have any questions. Any. They stressed this a lot; call with any questions or any symptoms. At all. I also need to carry around a packet of info about the drug in case I need to go to a doctor or ER where they may not be familiar with the drug. The good thing about being in this arm of the trial is that I am being monitored super closely. My oncologist told me that while my treatments are supposed to be 4 treatments three weeks apart, most people do not get all 4 treatments because of the onset of serious side effects that need high doses of steroids over a long period of time to treat. The drug can sometimes attack other organs, not as much with the 3mg dose, and it is a serious complication if that would happen. Yolo! (;
So with all that business behind me, I was ready to start my infusion! We had to wait for the bloodwork to be done and then once I got in my infusion room had to wait about 45 minutes for it to be made. Made? Compounded? I’m not really sure exactly but it doesn’t matter.
The infusion itself took about 90 minutes then I needed to wait around for 30 minutes after for observation and for them to continue checking my vitals (which they do every 15 minutes during the infusion). I’m not sure what I expected to feel during the treatment, but the truth is it just felt like an IV. Pretty boring actually, good thing there was a TV in there (:
After the infusion, I had an appointment yet with the radiation oncology department for a recheck and a recheck with my surgeon. Nothing too special goin on there, I’ll need some kind of lymphopatho something therapy for my lymph pathways in my face and physical therapy for my right arm (which is still painful and annoying. If you look at my two shoulders you can see the loss of muscle on my right side, it’s pretty wild).
We ended up being at Penn from 8:30am to 6:30pm. Made for a long day and since I hadn’t slept the night before I was really out of it towards the end. And grumpy. And whiny. My poor mom! At least this came on on the way home!!! Lol
These first appointments really wreck my nerves and I’m so glad it’s over. I still can’t believe how amazing our friends and family have been through this (our friends are even holding a fundraiser to help with medical bills! These people are stupendous. Like for real!) and God has been so faithful through it all. I knew He would be, but it is still an awesome thing that deserves mention. My biopsy came back that it’s for sure not cancer – wooohooo!!! But I do have a friend (another one!) who is facing some scary things with melanoma and is anxiously awaiting test results from a biopsy. It makes me sick to my stomach. Please pray for her if you can! This junk is real and it’s everywhere. Get checked!!