I have got a lot to cover, here we go.
My last entry was the night before I found out cancer has metastasized to a cervical lymph node on the left side of my neck as well as another near my diaphragm. Chemo cocktail it is. I have been prescribed Paxitaxol, Carboplatin, and Avastin. A popular, hefty, and effective combo. In my nature, as soon as I had a plan of action, I messaged my stylist. If I am going to lose my hair, it is absolutely going to be on my terms, and I am gong to completely thrash it with fun colors on its way out. I don't have to rehab it or remove the color! Whammy! We were on a family camping trip in Pierre, SD when I got biopsy results and treatment plans. I stayed in SD with the boys for the week and Nate went home to go out to work. We were able to celebrate Tommy's 2nd birthday and my Dad's 56th with my parents, Grandma, siblings, and their families. The fun was infectious, despite the trauma inflicted on the poor birthday guy (the little one) by lowering a flaming cake in front of him being a tad overplayed and tired. I took advantage of the hands present and got them busy sectioning and braiding. Everyone got to chop off about 15 inch ponytails to send off to Wigs for Kids. (They don't charge their recipients, and also have a Girl Scout badge program for those with scouts interested in growing their locs to donate.) Tears were shed, and my dad was the first to lay claim to the abandoned braids sticking them in his cap to lighten the mood. I went to town, had my girl Christine shape, bleach, and tone me into one cool pastel pink mom. Since then I have been two different variations of pink, two tones of teal, and currently have a light teal with purple fringe and brows. Like a super shedding version of Sully of Monsters, Inc. I have found that coloring my hair brings a fun light to a shitty situation. It is starting to come out quickly and now I am exited to see how many spots of color have stained my skull over the past month. Thanks to the ultrasound tech that gave me an echo today I have many fun ideas to dress up the bare nog. Wait. What? You had an echo...why? Hang on, I'll get there shortly.
I was excited to be able to undergo treatment near home in North Dakota instead of commuting to Omaha or staying there for another 9 weeks. There was an abundance of waiting around for referrals and scheduling. Just about one month after getting the news I was going to be doing chemo, I was sitting at the infusion center with Nate getting jabbed up and pumped full of my magic cancer killin' potions. My side effects have been mild. The first night I had a scare with chest pains, and per the literature from my treatment center we headed into the ER to be evaluated. I called when we were on the road and they patched me through to my oncologist. She instructed me to take an antihistamine and turn back to go home. The next few days I went camping with my best pal and had no side effects as the steroids I received before chemo were fighting them off very well. As they wore off the third day after my infusion I was incredibly tired and the shot I was given via on-body device 27 hours after my infusion made a few of my bones very sore. It was a shot of Neulsta and it's job was to activate the bone marrow into brewing me up some more white blood cells. The following day I was still tired and a little weak, but feeling better. I started experiencing a different sort of chest pains, but powered through knowing little would come from trying to get ahold of anyone at my oncologists office.
A week after my infusion, I was supposed to be seen by my oncologist in office, but that had been changed to a phone consult with a nurse. She expressed concern about my chest, and need to confer with the doctor and would call me right back. And did after about 5 hours. If I were to experience pains again, go to the ER, and she scheduled me an echo and appointment with a cardiologist. Well, maybe she meant to. You see with insurance referrals, specifically Tricare, providers are able to put their own in and as long as it is complete with specific and correct information it will go right through to HealthNet and be approved. This was not my case. I spoke to this nurse the Thursday before Labor Day, and in military terms, the last afternoon before a four day weekend. The echo was scheduled for Tuesday. I made calls to Tricare to expedite the referrals (I am practically a referral professional at this point, hit me up if you need pointers.) The authorization that was submitted for my echo was not completed correctly and I was made aware of that fact at about 8pm on Monday night by double checking my appointment time and seeing it had been moved. Without my knowledge. From the next morning. With a cardio appointment a few days later where having an echo on file is kind of important. I will spare you the headache I put myself through to figure out and fix that situation, but in my struggle chest pains had returned. Earlier that morning, my Oncologist in Omaha had called and I was able to express my dissatisfaction and concern for the lack concern I was seeing. He educated me on what could have been happening and also assured me that they would do anything needed to get my treatment transferred back to my home sweet cancerverse in Omaha. I headed south to the ER after he was blown away they told me not to go in the first night to address my chest. All checked out, I was/am fine. It turned out to be unexplained chest pains. Thanks for that valuable insight! I get that it happens. After having a chest x-ray, EKG, and CT that noted no problem with my heart at that given time, I'm not salty about not knowing what it was from (most likely anxiety, shocker.) Just salty about the establishment. I called the Cardio department a few times throughout the day for their help on getting the referral hashed out and I was met with snark and not one call being returned. My calls to the Cancer Care Center were never returned. And I repeat, I. Am. Salty. So when I have told my people that I am going back to Omaha for care I have been stressing that I GET to go back there, not "I have to." I am missing some details on how great of care I was shown up Nort', but I feel like I got most of the big stuff. Except at my initial appointment my oncologist spent the first half hour of my appointment that she arrived two hours late to reading up on why I wasn't just there for scans and observations. That was fun too. The staff at the infusion center? Top notch! Triage at the ER, great! And that's where I will end this topic. I leave all sass and negative emotion right here, move on with my life, and smile because my team at Neb Med is AMAZING.
So that is where we are at today. I am scheduled for chemo in Omaha on the 21st. I already have the correct amount of steroids to fight off any possible reactions, which is apparently common practice for someone like me who has already had a cousin to one of the chemos I am getting. Okay, maybe I'm not done bitching about my care here. Ugh, sorry. I was given IV roids right before chemo, but I WILL be taking steroid tabs the night before, morning of, and a few days after my infusion because the reactions that I was told up here that are "rare" are actually common enough that steroid loading (taking them before and after infusion) is done for nearly all patients on this regimen. Okay.. NOW I'm done.
And with that, I think you're all caught up! We plan on making the trip every three weeks. I have a CT scheduled about 9 weeks from now to check progress and from what I understand three more rounds will be scheduled. Keep your eyes peeled for big, happy news in the future! I was serving at the local cafe up here in Lansford between my treatment in March and starting this chemo and met so many incredible people and started to feel like we absolutely belong here. Since word of treatment starting, my boss and friend, Jes, has organized a MealTrain for us as well as help with some light cleaning and babysitting. I can't even comprehend how grateful I am for her and this whole town stepping up and helping us out so much. Or how stinking amazing everyone here is! Some of which I haven't even met, are taking us under their wings and making our lives so much easier. I don't know how we were so lucky to pick the best town in North Dakota to move to, but ya'll we hit the lottery. My boys have accumulated many, many honorary grandmas around here, and that alone makes my heart so happy. I will also tell you, everyone here can cook!! Weight loss from treatment?? Never heard of her! Thank you to everyone near and far for keeping us in your prayers and sending words and memes of encouragement. It makes my day every single time. Big love to you all!
Until next time,
XOJO
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