I wanted to give you all a peek into a day of my treatment. My family has been incredibly busy since the time I wrote this, so it is being posted nearly a month later. During the in-between of then and now I was able to hunt a ton, see so much family, and spend a lot of time smiling but very busy. In all the hustle, I thought I was handling the use of all that energy well because I wasn't much more tired than I usually am. Blood tests last week and this week have proven that wrong. My platelets and white blood cells got pretty darn low. I am now two weeks behind on my chemo schedule and will continue to skip infusions until they are raised to an acceptable level for my infusion. They are low because of the amount of magic poison I have been getting the past few months coupled with the chemo and radiation I got this Spring has made my bone marrow slow to produce new cells and platelets. All I can do is rest and wait for them to come up. Rest? Uh huh, sure. In an all too real Jodi fashion, I find that pretty impossible. I have altered my diet (again) to support healthy blood. I have plans of doing some energy cleansing and meditation because this hurdle has hit my mental dam very hard. I have not made it a priority yet as I am not yet done pitying myself, I will be shortly. Not being sure of when I will be seen in Nebraska has also put me on edge as we all know I do not thrive without a plan. Trying my absolute hardest to go with the flow, and there are many moments in a day where I lie to myself well enough to be convinced I am actually fine with not knowing when my next treatment will be. Those moments don't last very long, but they are there and that's a start! Please enjoy the silly ramblings of my most recent day at Nebraska Medicine and I am excited to share that I am working on some fun projects with Cervivor. (More information about the organization and my small contributions to come!
Until next time and with love,
Jodi
November 1, 2021
10:00 pm
I take my 5 tablets of 20 mg dexamethasone and try to settle in enough for my brain to allow me sleep before the medication springs into action and I am brimming with energy. I am loading steroids before the six-hour chemo infusion I have tomorrow. Steroids in the form of pills seem to take a little longer to take effect, so I think I will be okay reading for a few minutes. I arrange my next dose on the night stand and move the book I am currently a fourth of the way through, a book that I haven’t started yet, and a book that I have about 20 pages left in. I fly through the final chapters of the last book and grab my phone to decompress from it and an exciting meeting I had attended earlier. My husband is snoring beside me in our queen bed at the hotel about ten minutes from my treatment center. We made the seven-hour drive to SD from our home in north-western ND a few days prior to drop my toddlers off with my mom, then the seven-hour drive from there to Nebraska Medicine in Omaha the day before. In an effort to forget that I had to hand the torch of taking my boys trick-or-treating to my mom, we were able to attend Hamilton at The Orpheum Sunday. I was honestly still buzzing from the theater and probably wouldn’t have known if the steroids kicked in. Before I know it- the clock reads midnight, crap. I set my alarm for the next dose of dex and revel in the wonderful news I was given via MyChart update from the progress CT scan taken earlier that day. Shrinkage and no new growth, all in barely comprehensible medical terms that would be translated to Mostly-English at my appointments in the morning. I stay up for at least another hour thanking stars, all of the gods & deities, as well as trying to wrap my head around what a cancer free life could possibly look like for the first time in seven months.
November 2, 2021
4:00 am
I am gently awakened by the saint that I married to take my next dose. The headache that is a constant in my life while I run the full course of steroids already present and I welcome it begrudgingly. Five more tabs down the hatch, two swigs of water because the first didn’t take my whole cache. It is far too early in morning for my brain to complete even the most simple task. Back to sleep, much easier than the night before.
6:15 am
Another alarm, and small nudge. “Are we going out to breakfast before your 8:15? If so, we have to get moving.” Knowing roughly what time it is and the small amount of sleep I was able to get I quickly responded that we can eat at the continental breakfast downstairs. I had a book, “Crazy Sexy Cancer Tips” that one of my mothers-in-law sent me that I wanted to pass along to the resource center and bring the gal running the place, Terri, a caramel macchiato. When someone helps you find a wig or two that spark a fun flame inside yourself and is a part of that very special moment, an instant bond is formed. I wish I could send everyone on a cancer journey to her, her light shines brightly far beyond her services and I am grateful to have stumbled upon her office. Not only for the bangin’ hair she gave me free of charge, but because she is sincerely so wonderful. I tell everyone to seek out their treatment center’s recourse office or center, it adds a portion of pure happiness to my trips in for chemo. Also, obviously incredible resources.
7:30 am
The rush begins. We ate a quick, and quite good breakfast at our hotel (Staybridge Suites brings it, all around. Big recommends.) Swing into Starbucks to grab a treat for Terri and myself. Bribe and/or reward my husband for adding the stop by sneaking a slice of Lemon Loaf for him into my order. Record coffee time in the drive thru and we are off to join the traffic through downtown Omaha. We get into our parking spot with minimal problems and it is now nearly:
8:00 am
We enter the Buffet Cancer Center to find about 25-30 people waiting their turn to go through Covid prescreen. Of course there is, but I believe we were met with a wait to calm and slow down the rush we were in. It is amazing what you see when you know The Universe is, in fact, conspiring for your internal and external success. In order for us to get over to see Terri, we had to take an escalator downstairs, cross the enormous entry to that section of the block of buildings to go up to the correct elevators. When we got through the screening it was 8:03 am. We scurry along, drop into the resource center, back down the elevator and up the escalator- we were at Radiation Oncology in 6 minutes. Score, we are back on top baby! Our nurse was at the reception desk and took us to get my vitals and ready to go immediately. I hadn’t seen her since May and it was so great to catch up, even if she was very surprised to see the hair she thought I had cut off to a bob was a wig due to chemo. She is one of those nurses that was no question destined for the job. My husband and I both grew an awesome relationship with her back in April when we saw her a few times a week for brachytherapy. We spent possibly a little too much time in conversation, and put ourselves back to the dimension between rushing and being perfectly on time, but it was worth it! After she took off, the new resident on my Radiation Oncology team came in to do a once-over and go through scan images before my RadOnc made his appearance. I couldn't imagine walking into a career such as this, but he is with grace and a wonderful demeanor.
8:37 am
My Radiology Oncologist, Dr. Wahl, came in and answered even more of my questions and touched on concerns. He went a little further in depth to what my scans showed and what possible next steps could be taken once I finish this round of chemo in December. There were two lymph nodes that popped hot in my PET scan in July, one left lower cervical (in my neck) and the other along the right pelvic wall. Both showed considerable shrinkage. The one in my neck is down by about 50% and pelvic by 30% (I’m not totally sure about that, the pre chemo Benadryl is kicking in, it went from 1.2 cm to .8 cm. Also, math was never my strong suit.) We knew this information already from reading MyChart, but hearing the words directly from an oncologist hit differently and we are overcome with happiness. He tells us that this is a very fast reaction to chemo and they are very pleased with progress. I was granted the luxury of skipping the pelvic exam they had planned because my last one was about six weeks ago. Privacy is a luxury that I don’t really remember. Through having a cancer related to a reproductive system, telling the world about said cancer, and having kids-privacy is a mere memory. A pelvic exam is easy-peasy, and if you’re behind on yours, you know I’m about to tell you to get that bugger scheduled. I just didn’t have the mental capacity to be late for the next appointment.
9:20 am
I have more vitals taken and recorded, and walk in my Gynecology Oncologist’s (Dr. Remmenga) exam room to a prepped pelvic exam bed. I think well, I only have chemo next, I can be late to that. To my delight, no exam from him either and all of my symptoms are noted and checked out. We chat a little, and he hints that he is also going through chemotherapy after telling them I have not been taking Claritin for bone pains (super cool hack, the over-the-counter drug does wonders for chemo induced bone pains. Consult your doc first, but look into it.) He gets hounded by my nurse and his resident for taking his. He is, and I notice his what was a horseshoe buzz cut is now to the skin and fading. I do not say anything about it, as I like to be invited into those subjects from the person they are most directly related to. I know the invasive tendencies of close and not so close people barging into my mental space abruptly and uninvited. This appointment goes very quickly, so we are able to pop into Terri’s office and chat for a while. In the past the senior class at nearby high school makes and donates anywhere from 200-300 tie fleece blankets to the infusion center, but Covid put an end to that. Her supply is running low so we brainstorm some organizations with her. My husband being in the Air Force suggested she ask Airmen Family Readiness at the base outside Omaha, and I don’t know why I had never thought of them for things like this! Airmen are always looking for volunteer bullets to put on their progress reports, so keep that in mind if you are planning an event and need hands on deck or anything that requires time volunteered!
10:15 am
We finish up our conversation and say goodbye for about eight minutes like any good Midwesterners do. Check in at the infusion center and are taken back after about 15 minutes. My platelets have been very sad in the past and were dancing on the line of being too low to receive my treatment the last two times. Since our home is 10 hours away from Omaha, I had blood tests done on the base at home Friday and sent down here to find out that my new practice of being mindful, intention, and concentrating energy on rising them worked wonders. Since I started chemo, they haven’t been over 110 to the 3rd power (I believe) the day before treatment. These tests showed them at 117!! While they were remarkable, I did not have a urine test done at the base. This is needed to make sure there is not protein present and my kidneys are still doing okay. I had just gone to the bathroom before my nurse, Kelsi, came in and told me this. I muster up the tiniest amount to get sent down after she said she didn’t need much at all.
11:30 am
Kelsi comes in to ask me for more urine to send down to the lab as it was the tiniest amount short, like half a milliliter short, and gets my pretreatment drips ready. I could have filled this cup twice and laugh at the irony. She sets me up with my pre-chemo drips and drugs. One anti-nausea tab, two Benadryl, steroid drip, and an IV long term anti-nausea drip. As the half hour of pre-drugs is finishing up, she gets the word that the Urine Analysis shows negative for protein and we are set to start the magic poison that has been working it’s wonders in the most spectacular way. First up, Avastin. She’s like the kicker chemo. Not necessarily the star of the show, but has been proven to aid the other two in doing their jobs. Nate has gone to grab us lunch from downstairs. The new responsibilities of the role he was flung into are executed wonderfully and more efficiently every trip we make. He arrives just before the lines start at the food court and has lunch to me before the next chemo switch.
12:30 pm
Lunch did not last long, my knight roaming the hospital halls brought me a burger and salad that the steroids helped me fly through. In comes the star, Paclitaxel. Forgive me for this Benadryl induced comparison, but she is the Cady from Mean Girls in the pack. Shows promise of having good intention, and just being a cool chick. She’s here to help and is down to go the extra distance to get her job done, no matter how malicious the nature may be. Next thing you know there is a school wide come to Jesus about the “problem” and she’s coincidently right there when you get hit by a bus…without hair. Did she push you? No one may ever know, but in the end shows heart and progress no matter the crap side-effects that comes in tow. All of the exhaustion from the rush of the day hits at once and I am about to stash my computer and get some rest after about an hour of writing and catching my day up. I fought off temptation to nap the last time I was in this position and wrote through my entire infusion. I’m not going to say it was a bad idea, but I definitely did not feel completely human for the duration.
4:15 pm
I am in awe of how much quality sleep I get here! I take my time in returning to the world of awake as Nate does the same. Kelsi is about to switch out my drug drips and give me the last of three, Carboplatin. It is a half an hour drip; we just have to wait out the remaining Paclitaxel first. I spend the rest of my time at the infusion center scrolling and chatting my husband up while he does the same, not at all finalizing any plans for the evening.
4:50 pm
My port is de-accessed and we are free to go! We head to a metaphysical shop to get overwhelmed browsing books and crystals. I spend far too long staring at their wall of books before I realize I have a meeting in half an hour. We rush back to the hotel and make it just in time for me to get Nate situated with GrubHub to find supper, log on, and get my notes situated.
7:00 pm
The wings Nate picked out are delivered right before my meeting closes, and I make short work of the meal, again. We pack up the hotel and take most of our belongings down to the rental car so we have less to tote down for the 7-hour trip to South Dakota that we plan to start around 4am.
9:00 pm
I am settled into bed next to my snoring soulmate with a book that I have been working on finishing for entirely too long. It’s a book that requires every morsel of your attention to not only comprehend, but actively practice the advice at the same time. In an environment less than perfect, such as this- quiet and uninterrupted by a mother’s reality, it is difficult at best to take in. Our suitcases and cooler are already packed up and tucked away and ready for the drive back to our boys. The only thing left are the clothes we were wearing before bed, a bag to carry them with, and the pillow my high maintenance self can’t sleep without. This is actually the second pillow of that nature, the first was left in Mitchell, SD a few months ago. You better believe there is a pillow check on the list of things to do every time we leave a hotel now, it was devastating. I am able to hold barely enough concentration to finish the chapter I started yesterday before my CT scan before I call it quits. What a good set of days. So much laughter, some tears, an uncountable amount of relief sighs and internal celebration, great conversations, and a treatment plan that IS WORKING! The way my husband and I both approach even the smallest aspects of life has changed in about every way imaginable. We look at things through lenses we didn’t know existed a year ago, and this hardship has brought out the biggest beauties in the smallest moments. Tomorrow I will hug my kids and tell them that yes, Mommy is getting better.
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