Originally posted May 7, 2016
I am currently nearly 24 hours into my first round of treatment… here we go, and so far so good (fingers crossed…)! It was a long week of recovery from the retrieval procedure, but I started to feel a bit more like my normal ‘healthy’ self before admission yesterday late afternoon… just in the nick of time! Here’s the story from retrieval procedure onward…
Post-procedure on Sunday, I honestly felt a bit like Melisandre at the end of GoT season 6 ep 1… (second reference here…. seriously if you don’t already watch Game of Thrones I highly recommend 🙂 I still felt a bit sore the next morning, and bloated to the point where I looked about 4 months pregnant, but on the mend. Monday was a day of logistical follow ups, including with my oncologist to confirm start-date for my actual treatment. Friday. Yesterday. My oncologist wasn’t thrilled about me even waiting until then, but I was scheduled to lead a work training Friday morning and so I had the perfect excuse to delay… and in full honestly I WANTED to do the training – I love that part of my job – and to maintain some semblance of normalcy in the midst of the maelstrom was so helpful. A ‘last hurrah’ before treatment of sorts. I’m so glad I did.
Especially because recovery was rougher than anticipated. The fatigue and bloating were much more intense than any warnings suggested, my insomnia was still pretty bad (4-5 hours is a pretty good night for me), and then on Tuesday in my fatigue I forgot to take my Prednisone – the steroid that’s part of my treatment which they started me on right away – and I seriously think I went through withdrawal that day. The referred pain I experienced in my left shoulder at night (from nerve compression) was the worst it’s ever been. My oncologist started me on the steroid while I went through the egg freezing process and it was immediately beneficial. But without the Prednisone, that night the pain was so excruciating it reduced me to tears. I writhed in bed all night and could not sleep aside from some awkward moments when I dozed off sitting cross legged folded forward… talk about weird neck kinks. I took my prednisone at 6:15am, drank a bit of a thick smoothie, and managed to sleep 2 hours or so that morning. Between that and my meltdown in the recovery room that Sunday morning, and the general fatigue and bloating I experienced post-procedure, I was in absolutely no shape to begin treatment any earlier than yesterday. Apparently the more eggs they retrieve, the worse the bloating is, and my number was pretty high. But I had to monitor it closely because of a potentially dangerous condition call Ovarian HyperStimulation Syndrome, which can occur post-retrieval. I didn’t experience any of the more severe symptoms (super rapid weight gain, nausea, vomiting) so I was in the clear and I’m totally good now, but the bloating took longer than I anticipated to go down. Nobody warned me about that :/
With the treatment logistics in place, I spent the rest of the week figuring out what I’d need for a hospital stay (woah didn’t realize there would be so much to think about) and placing many online orders (thank you Amazon prime…) and making sure my treatment schedule won’t interfere with my sister’s wedding festivities. Beyond that, I attempted to rest and relax as much as possible. I had another appointment with my applied kinesiologist and an appointment at a local acupuncture school on Thursday literally 5 minutes from home to help with the stress and insomnia, and to give it a test run before treatment… I’ve heard it can really help mitigate the side effects of chemo so I plan to go back in my recovery weeks.
Thankfully the bloating subsided substantially by Thursday, I felt relatively normal and mostly functional, did a bit of work, organized my stay for the hospital, and was chipper and normal for the training yesterday morning. It went really well and my bosses surprised me with a perfect care package for the hospital in a cute tote bag – complete with plush lavender throw blanket, hulu gift card, and an adult coloring book amongst other hospital stay necessities 🙂 Then I hopped in a taxi with my new loot and headed uptown.
Home sweet home through Wednesday!
My mom met me at Cornell with all my belongings: two pillows (with purple pillowcases of course), travel pillow, slippers, lots of pjs and comfy clothes, ‘IV friendly’ robe, lots of organic snacks, organic toiletries, books, laptop, more books, notebooks, meds and supplements sleep mask and ear plugs, organic alcohol free hand sanitizer so my hands don’t chap, and some personal items like a stuffed panda from my mom (Amanda panda) and an elephant picture I’ve had for ages. And then my sister showed up with another care package complete with new kindle paperwhite (lost my kindle a while back), Burts bees lotion and balm set, another lighter lavender plush throw blanket – two is perfect actually! – (and apparently people are quite clear on my favorite color :), another gorgeous, intense coloring book, more coloring pencils, and even a sharpener, which I had not thought about – so prepared! And my favorite: a little flag that says ‘You Got This’ which now hangs on my IV stand. And now I have coloring projects to keep me occupied for days. Actually more like weeks. My LA- based college roomie, Liz, is in town and she and my sister hung out with me all evening, helping me get settled, and then another surprise visit from another college roommate’s mother to drop off a gift since she’s overseas: a stuffed elephant (my favorite animal) that talks and moves… it’s hilarious and amazing. Sent with love from London – thanks Nish 🙂
Everything was a bit delayed last night so by the time the blood work was cleared and the drugs were ready to go, I didn’t start the first infusion until 10:15pm. My sister stayed with me through the first stage so I had my moral support in place. They started me on the Rutiximab first on its own, which is the immunotherapy, to ensure I didn’t have any adverse reactions. The nurse monitored me for the first 15 minutes, upped my dosage, then every 15 minutes for the first hour the machine beeped to up the dosage. Vitals, up the dosage, repeat 15 minutes later. Then for the remainder of the pack they upped me every 30 minutes. Until about 2am. Then finally they unhooked me and I was free to properly rest… until 5:30am when they came to check my vitals, and then 6:30 blood work, then 7:15 breakfast delivery… first night of sleep was a roaring success I’d say. Most importantly, though, I had no reaction to the Rutix… apparently about 50% of patients experience reactions of some kind, ranging from chills and fever to… they didn’t get into that. Nada! Phew. Aside from the fatigue, felt great today.
This morning once blood labs were cleared, and I was showered and had a breakfast they set me up to get my PICC inserted (semi-permanent IV which will stay in my upper arm through the remainder of the process and will eliminate the need for pricks every time they hook me up or need to take bloods! Woohoo! Minor procedure done on my bed to get my arm all set up (performed by the best in the unit so I heard from several nurses) then they hooked me up to my chemo cocktail at 12:30pm. 96 hours straight. I can take a quick shower every day at 12:30 when they change packs. So, I will wrap up the first round on Wednesday afternoon, then apparently will have to come back in on Thursday for an injection of white blood cells. Because the chemo will destroy mine. Crazy. Then two weeks off for recovery. Then the cycle starts again in exactly 21 days from yesterday. 6 rounds, then done. The first round is the most involved, but now that the PICC is in, it’s all easy breezy from here on (fingers crossed!). The beginning is a total mind-twisting whirlwind but after the chemo hookup it’s all rather anticlimactic. Just chillin here in the hospital… but not allowed to leave the floor. I don’t feel anything from the chemo going into my body, and didn’t feel a thing when they took blood from my PICC a couple hours ago… lovin it. Side effects… well I’m just gonna keep thinking positive thoughts on that front, and keep up the nutrition.
This week I’ve honestly experienced my some of darkest moments, yet in the midst of the pain and darkness there has been so much light coming to me from near and far. Even in those moments of darkness, I know this is temporary. I have been astounded by the love and generosity offered by so many people in my various networks and communities from my past and present, and as strong as I may be, I know the caring and support I receive from others is so necessary to my healing. I have been at the hospital just about 28 hours and I’ve had visitors with me for the majority of the waking time. Liz and her mom dropped off edible organic avocado toast from LPQ for lunch, dad and sister spent all afternoon and early evening with me (with more food deliveries of course), and future brother in law joined this evening. And the nurses, doctors, and PAs here have all been amazing. Everything – the book suggestions, the connections, the offers of food shopping and cooking and rides or just a person to talk to when I just need an ear, not to mention the overwhelming response thus far to my sister’s page – is so tremendously appreciated… words of gratitude don’t do justice to the good it has all done me while I’ve gone through this whirlwind. With all of you by my side, I will definitely get through this. I am so lucky.