I figured I'd give a post Round 1 of chemotherapy update.
I had my first round of chemo on the 23rd of September. I suffer from anxiety - no shocker to anyone who knows me. It's much worse now that I'm a mother and needless to say this diagnosis hasn't exactly relaxed me. What helps me when I'm anxious is cold. If I'm in the car I crank the Air Conditioning. If I'm inside, I'll go outside (hey, it's usually freezing out). Basically cold helps me relax. So I decided to give the cold cap a go with chemo. And for round 1 - I LOVED IT. When they took it off at the end, I could literally feel my anxiety rise again (hospitals are hot). So we will see how it goes for subsequent rounds. My skin is absolutely more sensitive now than it was and I know it will continue to get worse. But for now, I think I might be the one person who gets on with the cold cap.
I was warned that even if the cold cap works, to expect about 30-40% hairloss. So last week I went wig shopping and found one that is SUPER light and SUPER comfortable. I'm ready! It's a nice shoulder length bob and just suits me. And it's comfortable. I'll wear it if it's comfortable.
So far, my skin feels crazy smooth and my nose is not happy. So I suspect I'm losing hair on my arms, face, and nose, just not on my head yet. I keep expecting to lift my head off my pillow one morning and all my hair to remain behind.
For me, on the day of chemo, I felt great. They pump you full of all sorts of super powers with the chemo. I ate great and definitely had good energy. Kept waiting for it to all crash but it didn't. Didn't sleep particularly well. Me and my usual insomnia.
Day 1, the Saturday. Was weird as normally we all go to watch my son at gymnastics and then my daughter at diving (a pool that's about 90 minutes away). I sent my son to gymnastics with my husband and arranged for my daughter to ride with someone to diving. Kept waiting for the crash.... and it really just didn't come. My husband had to give me a jab at 2pm (to stimulate white blood cells). Restless legs definitely began after that. But not just the legs, like the whole body. If you've never had restless legs, CELEBRATE. They are awful.
Day 2, the Sunday. Still a good appetite. Restless legs/body again in the afternoon/evening. Definitely felt I hit the wall in the evening. I don't know if it was just that I was two full days post treatment or the come down after my parents arrival. But it wasn't a great evening. Appetite went and tummy troubles began.
Day 3, the Monday. Had to go back to the hospital to have my port put in. Wasn't allowed to eat from the night before but that wasn't an issue as I had last eaten at about 3pm the previous day. My whole body had the jitters though. Only spoke to one person at the hospital who had suffered from RLS in the past and she understood how much discomfort I was in. They finally took me down for the port and gave me something to relax me. I 100% remember the conversation I had with the dude who put the port in while he was doing it but my legs (and body) weren't jittering around anymore which was definitely nice. Asked if they could send me home with the stuff. So my file of "she's just here for the good drugs" begins.
Monday wasn't a fun evening, I remember that. Think the jitters all came back again.
Day 4, Tuesday, absolutely zero appetite and definitely start down the slippery slope of feeling crap. Husband took my daughter to her super long Tuesday night session of diving and I kept wishing he'd return home. Brain fog was MASSIVE this day. I think because I thought I'd get some work done I realized how bad it was!
Day 5, Wednesday, no appetite continued but felt the brain fog clear part way. Managed to go wig shopping, which definitely wiped me out. Hindsight, I now know to not do anything in the days following chemo. But I think I felt a bit of pressure from my mom to "get out of the house as it'll do you good". I will now tell her no.
RLS was bad but I remembered that I have a weighted blanket in the cupboard. Got that out and it was instant relief! I'll be keeping that guy around in the future. This day also started the sensation of feeling a cold drink go down.... not cool people.
Day 6, Thursday, back to the hospital for a check of my lungs (only small pocket of fluid) and the port (healing nicely). Also did blood work to see about my tummy troubles. My white blood cells were through the roof (excellent) but explained why I was feeling so sh*t as my body was in defensive mode. I was cleared to start popping Imodium in the hope that I'd be able to eat something. Drinking had really slowed at this point as my normal ice cold drinks were AWFULLY painful. Quickly discovered room temperature water is all my body wanted.
Day 7, Friday, I woke hungry! While my mouth/throat/esophagus were all still sore, I knew I could do soft foods that were room temperature. I was able to get a bit of food in me and keep it in, giving me a bit of energy!
Into the weekend, I kept going with soft, bland foods. Started chugging water like it's my job. And as a result, feel SOOOOO much better.
Today, I've managed a full day's work and feel quite good. I'm still weak and breathless, but it's a massive step in the right direction. I definitely know I'm out the other side from Round 1. Daunting to think I have to keep going back for this and that it'll get cumulatively worse. But I just can't allow myself to think that or acknowledge that, as otherwise I probably won't go! And by probably, I mean definitely.
I'm hopeful that a few extra knocks I had with this round won't exist with the next. I won't have a port put in (umm, that's not nice, just so you know). Thankfully a week out and it's not too sore anymore. Also I know about the mouthwash to help my sore mouth and throat. I know to get the right foods into the house. I know I want water now (it's possible I've not been a big water drinker in the past). I know to ask at the first sign of tummy issues if I can have Imodium. I know to have my weighted blanket on standby.
I won't lie, it's proper sh*t. I can't believe ANYONE goes through this. I don't know that I believe I'll be strong enough to get through this. But I'm just trying to think of January 6th. That'll be my last round. I can get there. Advent calendars are in stores, Christmas will be here soon, and then I'll be done. I can do it, right?
Best of all, I've spoken with the head of legal at work's wife. Her story is IDENTICAL. EXACT SAME CANCER (the scientific name). Stage 4, in her bones. Only difference is she was diagnosed in 2018 at the age of 35. She's 4 years post chemo. Gives herself injections every 3 weeks and is living with cancer. Her kids are also 8 and 5. I feel incredibly lucky to have met someone who has walked my walk and can show me that it CAN be done.
