I feel like time is both passing so quickly, yet also at a stand still. Over the last 6 weeks I have had both round 2 and 3 of chemo, next week I will have my last one! A lot has happened over the last six weeks.
Next week marks week 12 of working from home and “socially distancing”. I have tried very hard to be extra careful throughout chemo and let me tell you I am OVER IT. I am quick to entertain myself and am still working fulltime so overall it’s been okay because I have stayed busy, but this social butterfly is VERY ready to run errands, go out to eat, and meet up with all the friends and family! I have spent more time doing some things I enjoy - I’ve read so many novels, completed numerous CEs for my pharmacist licenses, practiced yoga very often, cleaned and re-organized our closets and started to learn the guitar. Adding more hobbies is the only way I was going to stay sane at home this much! Also a plug if any baseball players read this can you guys just sign your dang shortened contracts and play ball?!
ROUND TWO CHEMO
A couple of noteworthy things occurred. The first of which was having an allergic reaction to Taxotere at the start of the infusion. I have attended PIT crews as a clinical pharmacist - it’s a lot more fun as the clinical pharmacist in case you are wondering. My nurse did a great job of reminding me of the likelihood of an allergic reaction happening during round 2 if it was going to happen. She stood vigilantly by me when she started the infusion and told me to let her know if I felt short of breath, hot, itchy at all. I told her “okay will do!” - thinking Im a pharmacist I’m aware of what an allergic reaction is like ...
Before I could say I couldn’t breathe she was already pausing the infusion on the alaris pump and hitting the code button. The team was amazing and I was quickly moved into a position to have oxygen put on me, vitals taken, steroid IV push given, and Benadryl. I immediately was better after the steroids, oxygen, and Benadryl. The decision was made after an hour of watching me to continue infusion at one-half the rate. Which along with the cold capping that day put us in the infusion chair for 8.5 hours 😳 !! Luckily for me thanks to the IV benadryl I slept on and off most of the rest of the afternoon.
Another noteworthy thing that occurred after round 2 was the worse headache I’ve ever had about 36 hours after chemo. I wasn’t sure if it was the chemo, the extra steroids I received, or the nuelasta. But, I do not think I have ever been in bed with lights off and not moving for 26 hours. It was excruciating pain that I wouldn’t wish on anyone. Late Saturday night on of my best friends came and spent the night (Justin had to work) and made sure I ate at least some applesauce and crackers and I was able to watch some of a movie before going back to sleep. ❤️ When I told my APRN about this I was prescribed sumatriptan for any further migraines during treatments.
The last noteworthy event of 2nd round was me being completely fed up with watching my hair fall out like crazy! It’s been almost a month now since Justin shaved it all off and of course it’s definitely weird but I am getting use to it. I feel pretty badass with a shaved head, and Justin continually tells me how pretty I am even without hair which really has helped my self confidence about the whole thing. So many people have reached out and sent me head covers and hats, which I appreciate greatly but I actually spend a lot of my time just bald as is. This probably will change when I go back to the hospital because I don’t want to make other people uncomfortable so I am sure I will use a lot of the covers then. I plan on having a couple of years of some really awesome pixie cuts!
ROUND THREE CHEMO
Since I shaved my head prior to round three, the time at the infusion center was much shorter. Due to my allergic reaction I have to run my first chemo (Taxotere) at half rate so it takes 2 hours instead of 1. The second chemo only taking 30 minutes. So, after arriving at 0730 we were walking to the car at noon! This was pretty cool and I enjoyed having the afternoon at home watching tv and resting instead of stuck at the infusion center.
Neulasta has done a great job round 2 +3 of helping with my neutrophil and white blood cell counts. They put it on me at the infusion center and it injects the little catheter into my arm and gives the dose 24 hours later. If you are going to have this and are nervous - don’t be! It feels like a quick pinch and then you can’t feel it the rest of the time. make sure they cover the device with the Neulasta bandaging cover to make sure it stays on you for the 24 hours. After it gives you the medicine you just pull it off like a bandaid and throw it away. I am pretty amazed by the whole thing as a pharmacist and think it’s SO cool.
Round 3 was the first time I had overall muscle pain from chemo and I could definitely tell the accruing doses are adding up. I felt way more tired than the first two rounds for an extended time period, BUT it’s okay that also means the drug is accumulating in the body and doing what we want it to do. Kick cancers ass! Usually day 3 after chemo is my worst day and then I get a little better and am back to work. This time day 3 had a headache and nausea but was tolerable and Justin and I made a quick trip to go see a sunflower field - my absolute favorite and our wedding flowers. I was so grateful to feel good enough to be walking around day 3.
Physical Therapy
As many of you that follow me are aware I have been going to physical therapy since I had cording in my left arm. I am happy to report this has almost completely resolved as I am diligent in doing the physcial therapy prescribed relentlessly at home. A new thing I have been working on is issues with my heart. Prior to chemo I was in pretty good shape, worked out most days and I even ran my first half marathon in February! Unfortunately the chemo has caused my resting HR to be about 20-30 BPM higher, usually in the 90s. This doesn’t cause much issue if just laying around etc. But, since I love to do HIIT workouts and weightlifting which would increase my old HR to 190 most days I had to be told to chill out during chemo. Now, I actively watch my HR and take breaks whenever it hits 160 as recommended by my physical therapist. THIS DRIVES ME NUTS. We hope that soon after my last chemo we will see resolution of my HR back to pre-chemo numbers.
INSURANCE
Throughout all of this I have still be working on the proton therapy insurance coverage. We are getting there and the plan is to still go under 7 weeks radiation post chemo. The DONNA foundation taught me about the ability to reach out to PAF. I highly recommend looking into the Patient Advocate Foundation if you have any issues with insurance coverage for cancer, or any chronic or debilitating disease. These include:
ALS
Colorectal
DONNA FOUNDATION (breast cancer)
Heart Valve
Hepatitis C
HIV, AIDS
Migraine
Sickle Cell
Lunng Cancer
Various others
The advocate that has been working with me is absolutely amazing. I have become so in awe with the foundation that I am working on becoming an ambassador for the organization moving forward. I will go through training and be heavily involved in advocacy and policy. Also, the DONNA half marathon weekend is Valentine’s Day weekend 2021 and I think you should be there!
Excited that next time I blog it will be about the end of my chemo experience, it was tough, but I was tougher.
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