First off, can we all take a step back and acknowledge I have already been diagnosed with all this Leukemia crazy for a total of 43 days… The days have felt VERY slow but looking back at the past 43 days of my life it has been an absolute whirlwind. I’m very curious if you feel the same? Maybe just 2020 in general for the rest of you normal folk. Have your days been dragging but then when you take a step back to breathe you realize we are almost to September… in one of the craziest years I’ve ever experienced…? WHAT THE HECK. Mind is blown.
Monday, August 17, 2020 – Spinal Tap Results
Today we received HUGE AND EXCITING NEWS! The results of my spinal tap came back and I don’t have any cancer in my spinal fluid! SUCH A BLESSING! This means I don’t need to have any additional spinal tap chemo sessions (outside of the normal regimen). Thank you all so much for the prayers, good-vibes and well wishes! I feel so incredibly blessed to not only receive such exciting news today but to have the support system I have backing me through this entire process. Happy tears have definitely been shed today! God is so great and I am so thankful!
Wednesday, August 19, 2020 – PICC Line Infection
I just learned today that I’ve been referring to my PICC line incorrectly by calling it a “PIC” line rather than “PICC” (with two c’s). Ya know? Like thick but with two cs’s (Thicc)? Urban Dictionary it, all the cool kids are saying it. But anyway, NO ONE CORRECTED ME. Turns out the thing in my arm stands for a Peripherally Inserted Central Catheter (hence the two c’s haha). This is basically just a long, thin and plastic tube that goes into my body through a vein in my upper arm. I had my first PICC line placed pretty quickly after being diagnosed (so it’s been a little over a month now). They change the dressing on these guys weekly to prevent infection. Today, while we were doing a dressing change we noticed my hole was looking a little rough around the edges. Theoretically, after a month of having your PICC line, it should be a small hole with little to no irritation. Due to there being increased irritation around the site and the appearance that my hole was actually growing rather than healing around the plastic, they pulled my PICC line and sent in the tip of my line in to see if there was any sign of infection. I will get a new line placed tomorrow morning in my other arm but for one night I am PICC free. SHOUT OUT. Nice little break from having two dangly things hanging from the inside of my arm. I feel like a free woman!
Thursday, August 20, 2020 – PICC Line Update
The results of the old PICC line sample came back and there was no sign of an infection. Due to this, I didn’t need to start up on heavy duty IV antibiotics, which is great news! They are actually keeping me detached from my IV pole as much as possible to prepare me for going home Friday, August 28th! This week, the only time I was hooked up to the IV pole was for my chemo or for them to transfuse me with any blood products I may have needed. Additionally, I had my new PICC line placed in my now right arm. During the procedure a tech comes in, sterilizes your entire room and conducts the procedure from your bed. When I first had my PICC placed in my left arm back in July I don’t remember there being any issues to write home about. No pain, no bruising and no bleeding. This time however, has been a little different. My new PICC line did not ease into my vein as easily as it should have. It kept getting stuck as they were trying to round the vein in my shoulder to get up into my chest. The tech said it is in the right place as they use Ultrasound to confirm, but I looked at her like she was crazy for sure (whoops). The incision site is already bruised, bloody and very sore (nothing like I remember from my first one). We have had nurses and Dr.’s come in and look at it and they blame my low platelets so we will see what it looks like tomorrow when I wake up hahah. Hopefully my sheets aren’t covered in gallons of blood from a faulty PICC. But who am I to judge? I’m just the patient right hahaha?
**Update, my new PICC line is working great in my other arm. Swelling has gone down. Bleeding stopped. I never woke up in a pile of blood. Shout out. On the up and up ya’ll! Small victories.
Friday, August 21, 2020 – Round Four of Chemo and Potential Transplant Information
Today was “hopefully” the last chemo-therapy treatment I will have to undergo to put me into “remission.” My Dr. believes this regimen has been working based on the labs and monitoring of my levels throughout the past month here at the hospital. BUT a bone marrow biopsy and one final spinal tap will be conducted on Friday, August 28, 2020 (discharge date hopefully) to verify results!
This last round I would say has been the hardest, I was more nauseous after this fourth push of chemo. Dr.’s and nurses have said this is common due to the accumulation of the chemo over the past month. I’ve been able to keep food down but my tummy has been more upset than normal. Food doesn’t really have a taste but then you’re also hungry in a way? Think hungover, where you should eat and that might fix it OR you might end up puking it up. It’s a toss up (hahahah literallly). The nurses have kept up on my nauseous medicine which I believe has helped. We have a routine, before every meal I take a pill to keep things down hahaha. But I am very much hoping that was the last round of chemo I will have to partake in to kick Leukemia into remission! PRAYERS PLEASE.
When we get the results back from that last bone marrow biopsy and spinal tap (most likely the first week in September) the Dr.’s will be able to determine if the treatment plan worked or not. If for whatever reason this 28-day stent in the hospital wasn’t enough to kick me into remission we will have to do some additional chemo-therapy to get me there. BUT If it looks as though this month of chemo put me into remission we will move forward with a transplant as the type of genetic markings in my cells are likely to come back without crushing it with a new immune system (i.e. transplant). SO what does that mean you ask? I’ll go home on an “immunotherapy” pill until we get all of the ducks in a row for transplant. This will help to keep the Leukemia at bay if it were to try and come back during that time at home before transplant.
The Dr. said patients will usually be home for a month or two before they come back for their transplant stay. The purpose of this is to let your body rebuild strength post-chemo, to get the donor cells and plan set for your transplant date. To my knowledge the transplant stay includes about a week of hard chemo and radiation to entirely wipe your marrow (more so than this month chemo regimen I’m on now), and then you receive your cells. From there you’re monitored until your new cells start to take over and your counts come back up. This overall transplant process takes about a month in the hospital BUT after that you are on your up and up. I’ll be very weak for a few months and won’t be able to “return to normal Kayla activity” for 6 months to a year after. All this means is I won’t be able to sprint myself to death on the treadmill at Orange Theory for awhile – dang it. But I’ll get there and I WILL regain my strength. Everyone’s different. I could bounce back faster than the six month/one year mark. We just have to see how it goes. A lot of people who I’ve talked to about the time between hospital stays (i.e. chemo stay and then transplant stay) say you spend a lot of time working out, eating right and getting your body in the best shape possible to help with the transplant process. Transplant isn’t a cake walk and so really caring for your mind, body and soul prior to transplant is recommended by EVERYONE I’ve talked to. So that’s my game plan. In home work-outs (because germs and COVID still exist dang-it) , healthy home-cooked meals and bubble baths galore.
Hair & Moon Face Fun Facts/Updates
For those of you curious but don’t want to ask (because they think it’s rude – FYI it’s not rude to ask) hahah I still do have my hair. It is starting to thin I’d say but I was very lucky with a lot of thick hair before all of this. So, I’m hoping it will last until the 28th so I can shave it at home rather than in the hospital room. It seems less traumatic or Britney Spears vibey if I am able to shave it peacefully in my bathroom at home rather than in the hospital room I’ve been in for the past month… But I mean also it’s still 2020 (and a disaster) so who knows. Next week’s blog you may see a live video of me shaving my head in my hospital bathroom screaming angry Rock music on the top of my lungs. Guess you’ll have to just stay tuned.
My Prednisone (steroid) is scheduled to stop on my discharge date, Friday, August 28, 2020 (only 5 more sleeps)! This will allow the swelling (i.e. my moon face) to start to dissipate which will help release all the tension and stress on my jaw and neck. It currently feels like I am playing the childhood game Chubby Bunny. For you older folk this is a game where you put as many marshmallow’s in your mouth at one time and say “Chubby Bunny” before someone can’t fit anymore or the marshmallows fall out. I think I officially win. There’s no more room in my cheeks for even just ONE more mini marshmallow much less a regular sized marshmallow. SO I AM VERY MUCH so looking forward to getting off this drug in particular. BYE MOON FACE BYE. Hopefully see ya never.
That’s all I have for this weeks update! This upcoming week will involve me hangin’ out, counting down the days to Friday for the Bone Marrow Biopsy, Spinal Tap and GOING HOME.
WE ARE SO CLOSE. Thanks for following along, thank you for all the prayers, well-wishes and good vibes. I wouldn’t be able to do this without any of you being my own personal hype team. Love you all beyond words.