Monday, October 1, 2018. I started my first round of chemo and I have to be completely honest -- It has been a heck of a lot harder than I expected. I have dealt with chronic nausea my whole life but this really brought things to a whole new level. I will delve into the nitty gritty a bit more in a second, but that is the simple answer as to where I have been the past two weeks.
Monday morning I met with my oncologist and began my first infusion. Round 1 consists of two drugs: A and C, to be administered once every two weeks over the course of eight weeks (for a total of four infusions). Round 2 consists of one drug, T, to be administered once a week over the course of twelve weeks. From what I have heard, AC is the more difficult portion to get through. I am certainly hoping this is true for me!
My session started with the administration of three anti-nausea medicines by IV. This was then followed by 'A', which is also known as "the red devil". Delightful, yes? It was administered over fifteen minutes by a nurse and it looks like vials of Kool aid.
I can assure you, the resemblance to a fun, summery drink stop there. After this, 'C' was put into an IV drip that I received over about the course of an hour. Almost immediately upon starting this, I felt lightheaded and extremely nauseous. I thought I was having a reaction to the 'C' but looking back, it seems it was more likely I was reacting to the 'A', which is well known for it's lovely side effects.
Once my infusions were finished, my port was flushed out with fluids and I was given a delayed release shot called Neulasta OnPro. This shot self administers 27 hours after being applied and is given to help boost my white blood cell count (and therefore reduce the risk of infection).
This appointment took about a total of four hours. In addition to being physically draining, I was definitely emotionally spent by the time I got to leave. I don't think anything can adequately prepare you for the experience of chemo ...
Tuesday morning I had to go back in for about an hour and half of IV fluids. While I was there, I had an interaction with a fellow patient who is a bit of a character. We have talked on a few different occasions, but due to his thick Italian accent I can't always understand him. But he did say one thing as he was leaving that stuck with me: "I come, I kill, I leave." Not a bad attitude to have when facing down chemo!
Then two nuns came up to me and told me they'd be praying for me. It was such an interesting contrast of people ... an Italian mafioso and two sisters. It was nice comic relief!
From Monday-until today (Sunday), I have been battling consistent nausea, extreme fatigue and headaches ... It has been pretty relentless. I am taking several medications to keep my nausea at bay and I was also taking a bit of a tranquilizer to help me sleep. But yesterday we determined this was doing me more harm than good, so for now I am just taking anti-nausea meds and Tylenol for my headaches.
I have been staying at my parents since Monday, in order to have around the clock monitoring. I am so very grateful to my family for the way they have selflessly been taking care of me. Right now, the hope is that the week following chemo I will be able to spend with my parents and the following week I will be able to go home.
The above was written last Sunday and then things continued to get worse so I was unable to finish writing that post.
I was told that the Neulasta shot I was given may result in some joint aches but I was in no way prepared for the insane amount of pain I actually felt.
About a week after I received the shot, I started feeling pressure in my chest. I struggle with anxiety and heartburn (which can both cause chest pain) but after a few hours, the pain wasn't letting up so I started to panic. Eventually I fell asleep for about an hour. I woke up to intense lower back pain. As I had not been very mobile since chemo started, I thought perhaps I needed to stretch my back out.
I got down on the floor and did a few stretches, but it didn't touch the pain. So I decided to take some melatonin to help me sleep. Again, I got about one hour of sleep. This time when I woke up, the pain was building swiftly. I spent a few hours just trying to push through, hoping it would pass.
Suddenly, I started to wonder if this was a delayed reaction to the Neulasta. I did a quick google search on my phone and started reading some disheartening comments from fellow cancer patients ... unbearable pain, no warning from doctors, etc
Around 3:30 am I knew I couldn't do it anymore. I took two extra strength Tylenol and texted my mom that I was in excruciating pain. She came in at just the right time. My mom has coached several women through childbirth and I had heard her talk about back labor. Even though I have never been through childbirth, I thought this pain sounded like what she had described.
I was literally on all fours, screaming in pain. My back kept spasming and the pain just kept increasing to the point where I thought I was going to be sick (thankfully I was on meds to help me not throw up or else I am sure I would have!). My mom coached me through the pain, rubbed my back, applied a heating pad ... She was amazing. After hours of this, I think I finally drifted off for about two hours. In all, the horrid pain from the Neulasta lasted about 30 hours.
My mom called my oncologist's office to discuss what I had gone through and they explained that yes, in fact, this was a side effect from the Neulasta. They asked how I described the pain in my chest and I said it felt like bruising. They said that was a very accurate description of what was going on. The Neulasta stimulates the bone marrow to produce white blood cells rapidly and they are all just bouncing around and hitting each other inside my bones.
I am thankful for the advances they have made in medicine, that this medicine helps keep me healthy during treatment, but it is definitely accompanied by a level of pain that I have never experienced before.
So there you have it. My first round of chemo done! Tomorrow is my second round, which I am not looking forward to at all. But the GREAT news is that after this, I will be HALFWAY through my AC treatment!!!!!! Thank you, God!
Updates & prayer requests:
Pray that this round of chemo goes better. I am meeting with my oncologist at 12 pm tomorrow, right before chemo, to discuss how things went and to ask questions about how to possibly make this treatment more bearable.
Pray for Ricky, as he continues to work, go to my appointments and spend time with me at my parent's. Pray for peace, strength and wisdom in all he does.
Pray for my family, as they all take care of me. Pray for strength, health, peace and blessings.
Pray that God continues to provide for us financially. A single round of chemo costs approximately $19,000 before insurance. I have no idea how people do it without insurance.
Continue to pray that Ricky, my family and I all stay healthy. This is critical and will continue to be throughout chemo.
I have my second round of AC chemo tomorrow, October 15th at 12 pm.
I have shaved my head preemptively (my next post will be about that) but today is day 14 and I was told to expect all of my hair to start falling out around day 17. Here comes baldy!
As long as I stay healthy, I believe my third round of AC chemo will be October 29th and my last round of AC chemo will be November 12th. '
My first round of T chemo should start around November 26th. These rounds will be once a week, for twelve weeks meaning if all goes according to plan, I will be finished with chemo by the beginning of March (factoring in holidays -- not sure if I will receive treatments the week of Christmas and New Years).
Another reminder- If my first round of chemo was indicative of what is to come, Instagram was and will continue to be a much easier platform for me to use to update people regularly. I post photos, videos and sometimes fun questions (help me pick a new show to watch, book to read, etc). My Instagram name is @love.is.loudest21 so be sure to check there if you haven't heard from me in a while.
I cannot say it enough -- THANK YOU for all of your amazing support. While I may not be able to respond in a timely manner (I'm so sorry), please know that your texts, phone calls, cards, etc mean the world to me. It is such a lifeline to know that someone is thinking of you during this time.
All my love,
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