I have a different chocolate today AND there was a jailbreak from the hospital! I can’t believe I went from almost having a blood transfusion last night to being home today! My hemoglobin took a jump overnight into the bottom end of the normal range and many of the other blood levels had a slight rise as well. With my lowered body temperature and these results, I am back home!
Thank you all so much for the healing thoughts, prayers, love, and good juju🥰 All the positivity was felt and I know YOU contributed to bringing me home. It was so great to lie down in the back seat with both my Honey’s in the car. I’m so happy to be back on our couch and to be able to sleep in our bed.
I’m still here…at the hospital! I’m feeling slightly better, but still pretty blah. Yesterday I reached my post chemo nadir level. The nadir level is when all my blood counts are at the lowest point. This is a great thing as long as I get past it without catching anything. Most of my levels should start improving now. My fever has subsided so I’m one step closer to going home!
Although, my hemoglobin fell just below the normal level this morning so there is discussion of a possible blood transfusion tomorrow. Hemoglobin is the protein in your red blood cells that carry oxygen to all your organs and tissues. That could explain why I’m sooo sleepy. I’m still sleeping 16+ hours per day. Fun fact, I still haven’t turned on the TV in my room in the last five days.
I would prefer not to have the transfusion. I’ve already got a lot of antibodies and a transfusion could add more to complicate future health issues. Since the hemoglobin is just below normal and I have reached my nadir, we hope my levels will be higher in the morning and this can be avoided.
Thank you all for showering me with prayers and positive vibes during this miserable ride🥰😍❤️
The white blood cells in your body are the infection fighters of your immune system. Receiving chemo lowers white blood counts making it even more difficult to fend off even the smallest bug.
I was told to check my temperature twice daily since it’s a great indicator that something could be brewing. Yesterday morning, everything was fine but by late evening, I was experiencing hot/cold chills. At 4am this morning, we ended up coming to the E.R. with a temperature of 102.4°
I will have the lovely view of the Mississippi River out of my University of Minnesota hospital window for a few days while they pump me full of multiple antibiotics.
The saying goes “You don’t come to the hospital to get rest”. I’ve been sleeping about 20 hours a day since LAST Tuesday. I’ve only left the bedroom (and bathroom) to go to Doctor’s appointments for ELEVEN days! 🤢 If I’m lucky, I’ll still be able to get a little R&R😜
I was pretty ill today. I needed to be wheeled to my radiation appointment in a wheelchair. I’m nauseated, can’t eat or drink much, have had low-grade temp, and haven’t been out of bed for the last three days. Thank you Travis for taking a booty off the wall! One more day until finished with treatment though!!!
They warned me it would get rough. The word “rough” is an understatement. I think the appropriate explanation could have been – It will feel like ROUGH sandpaper with tiny little daggers dragging across the burned skin that isn’t even red anymore because it’s actually turned into the color purple on the delicate area of your tooshie. That would have made more sense and been more accurate. Yowee, ouchie, and other choice words now come from the room where I visit Cindy Loo. Oh, and I forgot to mention the muscle spasms too, yikes!
But wait…there’s more….It’s common to get an infection in the lady parts area because the radiation is making the tiny little lymph nodes angry. Yup, there is swelling too, oh the joy! They started me on an antibiotic Thursday. The doc said it was already looking slightly better yesterday, thank goodness.
It’s the last weekend before finishing my chemo and radiation courses of my treatment, I am more confined to bed. For now, Travis will be serving appetizers and dinner bedside in between my regular medications, the pain pills, and muscle relaxers.
Relatively speaking, I had been doing pretty well up until this point. These kinds of complications usually start around the third week of treatments. I had been able to dodge some of these bullets until now; my FIFTH week of this part of the journey. All of a sudden, everything snuck up on me. My brief, slow walking sessions on the treadmill have devolved into waddling exercises. I’m sure quite a few Mama’s out there understand. My medical team advised me yesterday to stop all walking, waddling or any other unnecessary movement to help reduce irritation in that sensitive area.
Here’s the real fun, once my final two radiation treatments are over and done with this coming Tuesday, everything gets worse before it starts getting better. Both the chemo & radiation side effects are cumulative, meaning they will still be building for a while before they subside. That’s when the real healing can begin, I’m sure looking forward to that day!
As awful as all this is, I can’t tell you how grateful I am to have such wonderful medical care; how fortunate I am that there is a treatment, even if it sucks for a while. I’m also so lucky to have a such a great friend, Cherish, working at the university as a pharmacist. She prepared my first and last rounds of chemotherapy while keeping Travis and me upbeat during a stressful time. Yesterday, my home care nurse was at our house with me. We had a medication question and Cherish quickly got back with an answer. Thanks to her, I’m now less nauseated this weekend. Thanks girl!
I’m starting to have more difficulty walking and sitting is becoming more challenging but I’m in the single digits left for treatments and I’m still shaking my booty!!
We miscalculated my treatment calendar. Instead of 34 days; including my free weekends, the 27 radiation treatments take a total of 37 On Friday, I crossed the half-way point of my chemo/radiation treatment!
The docs tell me everything so far is going as planned. Last weekend and throughout this last week, the fatigue hit me. My white and red blood cell counts are really low which explains my extreme lack of energy. The low levels are expected as a lingering side effect from the chemo. I know my skin is normally a lighter shade of pale, but this is a whole new level, definitely no rosie cheeks…on my face.😉
Last week the radiation also started kicking in a bit, affecting my other cheeks.🍑 They have a little more of a blush tone and my skin is getting more sensitive down there as well. I’m at the stage where things are supposed to start getting interesting so I’m slathering on moisturizer all day long. The doc said this week she’s going to check my skin status. Hopefully, the burning and peeling will hold off for a while with my constant care.
Here’s a video of the room I’m in five days a week for radiation. You enter a hallway with recessed lighting that changes colors. It’s almost like walking into Da Club when the DJ presses play on their first song. Nobody is dancing. I lay on the table and stick my legs in this hard yellow mold of my legs and feet. I’m all tatted up now with THREE tattoos, one on each hip and one on my pelvic area. No pretty flowers or animals, just three dots the size of a pinhead. They’re easily mistaken for freckles. There are lasers on the walls and ceiling in the room that make sure the tattoos and mold are aligned properly so they only hit the target zone with radiation. The table then slides me into the tube for a quick CT scan to make sure I am definitely aligned properly then the table slides back out. The CT takes about a minute but I have to remain still while the doctor gets paged to check the scan. If something looks off the techs and doctor come back in the room to adjust me. Most of the time it’s fine. When they need to make an adjustment, it’s usually just a few millimeters. Once I’m clear for the radiation to begin, the table starts rumbling. The tube makes this loud rattling sound then the table slides me back into the tube. Some of our friends call me by the nickname “Rocket” and I feel like I’m entering my rocket ship!
The radiation itself lasts 7 minutes but I don’t feel anything during the session. It’s like a long X-ray. I do have to lay super still from the moment they line me up on the table, have the CT, check the scan, then administer the treatment. I’ve had pain issues afterward in my hips and thighs from lying in the mold for over 15 minutes or longer in total. It feels like I have done 100 squats once I’m finished! This gets very painful at the end of my weekly visits.
They do play music on speakers during the session which helps the time go by although sometimes it’s a bit challenging when a good song comes on. I have to force myself so I don’t tap my foot to the beat of a song by Michael Jackson, resist the urge of a hair whip to AC/DC, or sing loudly with my arms during Queen’s Bohemian Rhapsody. At least they play the good stuff!! Once the scan is finished, I’m all done until the next day.
I do have to mention my fashion wardrobe or lack there of.🤣 During the 1st week of radiation treatments, I was so cold I was severely shivering. That room is cold down in the basement! We had to wait until I warmed up because I couldn’t be shaking during the treatment. I found my warmest sweatshirt, wool mittens, added booties that Travis had bought me made from Llama fur, and then one of the techs said, “It’s too bad you don’t have any leg warmers”. I turned and replied, “Oh, I sure do!” They were obviously just getting to know me and unaware of the clothes stashed all over our house and my Mom’s basement. I wear my rocket outfit every day and they also add 3 warm blankets on top of me. Thank goodness I don’t shiver anymore.
This latest diagnosis and treatment program has called for some new bathroom hardware. Meet Cindy “Loo”, our new bidet toilet seat! I never knew how exciting it could be to sit on a toilet. Cindy Loo has some cheeky bells and whistles too. Not only does she recognize when I walk in and lift the lid, she also pre-sprays the bowl. The heated seat keeps my buns warm and the water is at a nice, comfortable temp. There are several different settings to clean the undercarriage, both the front and the back. And Cindy Loo’s dryer doesn’t have that countdown timer that rushes you out like when you’re at the car wash.
Huge thanks to my friend, Denise, who also has CF and 5 years ago went through the exact same cancer process. She has been a huge “ass”et by sharing her experience, advice, and bidet recommendation!
I never had a chance to post about Wednesday, March 15th. I was getting some fresh blonde highlights to be ready for my upcoming treatment plan when my brother called to tell me, “Mom fell down the stairs and she can’t get up.” I rushed out of the salon, drove as fast as I could without being pulled over, and pulled up to her house to find an ambulance out front.
Her face was all black and blue. She looked awful lying there motionless while the EMT’s were asking her questions. I was standing in the entry and she yelled, “Don’t come near me!”. The previous night she had gone to urgent care where she was diagnosed with some lower left pneumonia. Even in agony, she was still a mom worried about possibly getting her daughter sick!
They hauled her away to the hospital where my brother met her there. It was very nerve-wracking waiting to hear what was wrong! My brother called and said, “Mom broke her neck in the C1 & C2.” Meanwhile, she was in the background yelling, “But I’m not paralyzed!!!”
She will be in a neck brace for three months with the hopes she will heal without the necessity of surgery. Time will tell but I know she’ll listen to what the doctors tell her with the hopes she doesn’t have to go down that road. Oh, I forgot to mention, she had a twelve-week-old puppy running around too! Fortunately, my brother lives at home with her and is doing a great job taking care of both of them.
I was so stressed about my mom but I needed to have a procedure two days after her fall. I’ve had a few blood clots in the past and I take blood thinners daily. I no longer have a subclavian vein on the right side of my body. Think of that vein as the main highway to the heart, since it’s destroyed I rely on all the side roads, collateral veins, to pump blood to my right arm. This all happened during my lung transplant when my vein was compromised with too much use but fortunately I gained my functionality back with my arm over a couple of years.
This made planning my chemo regimen a little more challenging to preserve my one and only left side. Instead of a portacath that most people would get placed, I will require a central line Hickman. A portacath is a device that sits underneath the skin and can be accessed with a needle. Then when not in use, it’s de-accessed by simply removing the needle and going about your day. I will require a Hickman which is an I.V. tube that will stick out of my chest the entire treatment. Due to the risk of infection, I can’t let water run down my head or neck in the shower. I have to be more cautious so it doesn’t get pulled when dressing, sleeping, or moving, and I have to make sure the site stays really clean considering it’s a direct line to my heart sticking out of my chest. This might be a big deal for a lot of people but prior to my new lungs, I would have to endure the Hickman line eight months out of the year. We already own a handheld shower head and I got so used to the lines I used to require before my transplant that I still wash my hair upside-down to this day so hey, no biggie!
I’m taking two types of chemo, the pretty color purple one is called Mytomycin and they push it through my Hickman over 5-10 minutes. The second in the clear bag is called Fluorouracil or its nickname is 5FU. It’s a week full of F.U. 😉 It stayed attached to me 24/7 until it was unhooked this last Friday. The radiation continues for another 4+ weeks. I have a chemotherapy break and will repeat the same process starting on day 29 of my treatment.
Week one is in the books and it was a rough one! I started my chemo/radiation treatment last Monday and by Tuesday I was already not agreeing with the chemo. I was EXTREMELY nauseated! I spent most of the week in bed. The rest of the week was spent on the couch. It was challenging getting to my radiation appointments but Travis was a good driver and wheelchair pusher when necessary!
The good news is the chemo is finished for the time being. I’m feeling better today and finally feel like posting. I definitely feel like eating again but now I’m dealing with a chemo canker sore and it’s a big one! I guess that’s an indication the chemo is working so I’ll go with the flow. Hopefully I’ll be able to shake my booty more this week.
Today was the 1st day of chemo & radiation. The other night I was telling Dana, Sidra, and Travis’s mom that I needed a visual aid to count down the 34 days of radiation. They came up with this doozy of an idea!! Thanks Dana for using all your printer ink to print our new bedroom art🥰 Day 1 finished!!
Nikki's New Lungs 