So much to report since I last wrote! This is going to be all over the place, so please bear with me. I don’t know how else to write all this out without bullets because it’s a LOT.
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Remember the dumb rent stuff where the new owners of my apartment building forced us all to write checks and bring them to the office to pay our April rents? Yeah well, I ended up getting a cashier’s check, which was fine, but what a pain in the ass. I had to leave work to run this errand since banks have such limited hours. Annoying, but whatev. I suppose I should maybe order checks, but then WTF would I do with them? I’d never use them and throw them away only to need one measly check somewhere along the line. Dumb.
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Had dinner with the Rodeo Clown last Saturday night. Remember him? He’s the guy from the next city over who got carried away one night and sent me an unsolicited dick pic (although, I could see how he may have mistaken my flirting as an invitation to send a dick pic, so…not 100% his fault). ANYWAY, way back when I first met him, he had a severe drinking problem. I met him out twice and both times I think I counted 15 shots of whiskey he’d downed. Luckily, both times were close to his apartment where he could walk home. Long story short, he wanted to take me to dinner so we could catch up about my cancer and how he’s building a log cabin in the woods. I didn’t really want to talk a lot about my cancer, but he kept asking me question after question and I kept trying to change the subject. It was awkward but kind of sweet. I can see exactly why he used to drink so much. He has severe anxiety. It was palpable as soon as he came over to the table. I guess I’ve never seen him sober. It was wild, but all-in-all a lovely evening and nice to get out of my own head for a little bit as I forced him to talk about himself!
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Sunday was Easter and I went to my parents’ place and my bro, SIL and niece were there. It was a gorgeous day and I loved every minute of it. We had a great time and I felt physically nearly 100% back to normal. It felt SO GOOD to feel so good.
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Unfortunately, I got the Sunday Scaries thinking about how there was so much work to do early in the week before taking all day yesterday (Wednesday) off for Chemo Infusion #2…
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Worked myself into a total FRENZY for Infusion #2. Not sure why - at this point I know what to expect. Except, I had something that I really wanted to bring up and try at this particular time. It involves a bit of an unconventional protocol to try to alleviate some of the weird side effects of one of the chemo meds that is used for this particular chemotherapy. What happens during treatment is that there’s this suuuuper weird sensitivity to cold that happens in hands, feet and mouth. It’s like you get a sharp ZING in your fingers and toes (which is the start of neuropathy…which can, unfortunately, be permanent, so we have to watch it closely). During my first appointment with the oncologist, a nurse came in and started telling me things like, keep a pair of gloves close to the refrigerator so that you can wear them when you are pulling things out of the fridge. I was like, whaaaaa? But it’s true - after the first infusion, my hands would get shocked by anything even cool to the touch. And when I drank anything cold it was like glass shards going down my throat. What the actual fuck is this shit? It’s scary and weird, even though they told me that it would happen as a side effect of this treatment.
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In my research to figure out this chemo, I found a group online that practices something called “Icing” during one portion of the infusion. It sounds suuuuper counterintuitive because it involves wearing ice packs on hands and feet and chewing on ice chips in the mouth during the two-hour part of the infusion that’s called oxaliplatin. This group has developed a protocol with instructions on how to do this at the infusion center and also put together a list of cancer centers and oncologists who are allowing their patients to ice during treatment. It’s controversial because it’s so new and doctors fear it might cause pain to the patient - especially if they have a spasm in the esophagus! But I asked a lot of questions to the people in this group - if it was safe to start this protocol after I’d already had one infusion, and they said YES! As long as I start the icing protocol 15 minutes before the oxaliplatin and keep icing as long as 15 minutes after the 2-hour infusion, that it should work! I know, it’s too much info, but I’m writing it down anyway. But yeah, doesn’t that seem completely weird to ice yourself on the parts that are sensitive to cold? By the time of Infusion #2, my hands, feet and throat were entirely back to normal and not sensitive to cold, so I got all of my equipment together (rolling cooler filled with ice, therapy socks to hold ice packs to feet, therapy mittens, frozen water bottles, and more ice) and marched myself into the cancer center like I was moving in! Was I scared to approach the oncologist with my plan? YES. Because I knew he’d discourage me just as the NP had done in my “chemo class”. She told me NO WAY would I be allowed to wear ice packs during treatment - it would hurt!
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Nervous as hell, I took a valium before checking myself in. I was calm, cool and collected as I had my blood drawn and then waited for the oncologist. He took a long time, but finally showed up and we talked about Infusion #1 and how that went and then I broached the subject of icing…armed with my letter. At first he said nope, no…that would not be good for me, but I talked him through the protocol and had him look at the list of about 50 infusion centers across the country (and some international ones too!) who are allowing their patients to ice. The list included some renowned cancer treatment centers (Sloan Kettering and MD Anderson) and even listed some highly respected oncologists that my doc recognized, so he reluctantly agreed. He told me that the nurses in infusion will probably be very reluctant to let me do this, but I was armed with more letters and he told me to tell them that Doc K said it was ok…with the caveat that if anything HURT, I was to immediately stop. I agreed.
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Infusion room was next. A nurse checked me in and I told her I was moving in with my ice chest and blankts and goodies! Hahah. I asked her for a window seat and she found one for me. The infusion nurse (different nurse) came over and we exchanged pleasantries and then I got right to the subject at hand. Told her about icing and gave her the letter and she was like, oh no! NONO NO. And I said, please just let me try this. I PROMISE if it hurts I will stop!! I said that she could keep the letter and it explains the whole protocol. She took it and started the IV drip of steroids and anti-nausea meds. I asked her to please give me a 15-minute warning before oxaliplatin so I could get prepped. And she did. She even brought me a cup of ice so I could start icing my mouth. She started the infusion, but I could tell she was going to watch me like a hawk during this process (and it’s TWO HOURS LONG!).
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But y’all. I fucking did the damn thing. Two hours of freezing my hands and feet and mouth. I took three bathroom breaks (have to because they are pumping so much liquid through your body and drinking ice/water, etc), but I kept applying those fucking ice packs and you know what??? They WORKED! 100% on my hands and feet I have felt zero zings while reaching into the fridge and getting ice out of the freezer! The throat is a slightly different story because it’s hard to get ice to sit right in the back of your throat, so I still have a bit of the glass shard feeling, plus something called “first bite syndrome” which causes a kind of lockjaw when I first bite into food (this always goes away after about 20 seconds, but it is weird, weird, weird!).
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I am SO proud of myself for standing up for myself and doing this! It felt like a major victory in a situation that I just can’t control! And while it sucks and makes the process that much more uncomfortable while I’m sitting in that infusion room (can’t type on laptop or tap messages out on my phone and I’m also freezing my extremities at the same time), it’s worth it to try to keep the neuropathy at bay. The neuropathy can be permanent causing extreme pain to hands and feet, possibly for the rest of my life, so if this can help THAT, then I consider it a victory! Even my oncologist says that if this works, it could be a consideration for other patients! Could I possibly be helping pave the way for a new part of cancer treatment? I am really excited about it!
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After all of THAT, I was disconnected from the oxali and then connected to something called 5FU (yes, that’s exactly what what I said…FU!!), which is the “Foxy” part of the FOLFOX combination of chemo treatments. I am sent home with a “ball” of chemo that slowly infuses me over 48 hours. I have personally named my ball Foxy because, of course, if she’s going to be connected to me for 48 hours, we’re gonna have to be on a first name basis. She goes with me everywhere. Oh yes, I did find a new bag at Nordstrom Rack for a tiny fraction of the price of that broken down old vintage LV bag!
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And now we’ve made it to Friday, which is DISCO day! That’s when they disconnect Foxy from my body and send me on my merry way to recover. I will leave the office today around noon to get the plug pulled until April 21, when my next infusion will be. I have found that even after only ONE infusion, that disconnect is a very emotional thing. Mentally and physically, I feel completely unplugged when that happens. And slowly, ever so slowly, as in days, my head starts to clear and I start to feel better and better and better. I know that the infusions get more intense as these go on. It’s hard, but we can do hard things, right? We are doing this. And we are going to keep doing this. And you’re coming with me!!!
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Enough cancer talk? I have more…including real life ANGEL stories, but I don’t feel like writing all of that down just now. I have to say that this colon cancer is all-consuming, but it just helps to take a break from it now and then. I need to find some good binge-watching material for the weekend and for my next infusion so I can be transported somewhat. At infusion, I tried to get into Outlander, but couldn’t. I need something funny. Any suggestions?
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Not much planned for this weekend but walking the dog and recovery. I asked mom and dad to please come on Sunday to visit and to bring one of my favorite comfort foods - chicken and noodles. I hope I’m feeling okay by Sunday. My favorite thing in the world right now is to just be walking outside in the fresh air and just soaking it all in.
I’m still feeling the love and I’m thanking you for it every single day. Thank you for reading if you got this far!
Gotta go do some work now!
Love, love, love,
GS
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