Covid Update Day 6

Just got my second dose of Remdesivir and steroids today. The steroids are making me a hungry, moon-faced, crackhead,  jittery for my next fix.  My oxygen was bumped up to 2 liters last night to keep me at 96-97 and it helped. I drifted off to sleep with some episodes of my newest Podcast Sword and Scale. 

Today I’m up in my chair, planning to read some when the Gunther’s drop off my Kindle. I cannot have any visitors, but items can be dropped off at the information desk and they will get it to me or I can send someone down to get for me. They told me they love getting my stuff because I have received the most beautiful flowers ever!  Today’s gorgeous arrangement of sunflowers is from my awesome cousin Laurel Trumble!  Thank you sweet girl!! 🌻🌻

I love fresh flowers and have missed not buying a weekly arrangement from the City Market. 

These sure help being alone in this place! 

In talking to the ID Doc today he’s not surprised I went up on my oxygen and we can keep going up as needed to keep me comfortable. I’m here at least until Wednesday because the regimen of Remdesivir and Dex are 5 days. Saturday 8/29 being Day 1. 

I had a 20 min coughing fit this morning upon waking, but I have not had a fever so far today!  And the coughing is really loose and rattle-y in my chest so he thinks I’m doing good to break that junk up. The hot tea and honey is helping too. I should have snuck in my honey from Kim Angle’s 🐝🐝

I put my Apple Watch on today and I’m going to be getting up every two hours to make some laps around my room. Gonna get as many steps in as I can and stay up and moving to help clear this junk out.

I’m also now signed up for a clinical trial for a Pulm drug that will start tomorrow. 

Is is a subcutaneous injection of a drug used for patients at High Risk for rapid clinical  deterioration and ARDS. 

It’s called the PB1046 Vanguard Study by Dr Leslie Spikes here at KU. 

There is no placebo drug on this trial-I will either receive a low/medium/high dose and I’m being compensated monetarily after I’m discharged!  Not too shabby-making a little green for the Covid. 

In addition to this study and the Biorepository study, I also was part of a new testing process by Abbott Laboratories making a bedside 15 min rapid version of the test that doesn’t require the use of a swab reaching your brain. 

It’s 2 nasal swabs just inside the upper/inner area of your nares. Since I’m a known positive in the KU system they run my test sample and use it to see if the rapid test is as accurate with a different swabbing method. This could change taking days for people to get results. 

I love being part of the science in helping figure out this horrible virus!  And getting gift cards for it! 

Oh, and I’ll share the latest info I’m getting here about Covid please remember it is fluid and changes almost daily-this is the current:

•Once infected (date of positive test) you can shed virus for 10 days and have been considered contagious for 48 hours prior to positive test  

•once the 10 days passes you can be out of quarantine AS LONG AS YOU HAVE HAD NO SYMPTOMS FOR 72 HOURS.  If you have symptoms up to day 10 you are still contagious-STAY QUARANTINED  

•I am automatically quarantined for 14 days minimum due to my symptoms and immunocompromised status.  If I am symptom free days 11, 12 and 13, I am safe for public on day 14.  Mine starts the day of my positive test on 8/25 and goes to September 7th.  I’m cutting it close being that all my scans are ordered for 9/8.  Let’s hope I’m clear by then.  

Tomorrow I’m going to ask my ID Doc about re-infection rates and what they are seeing there if anything so far.

I’m in the Covid Unit with all positive patients and 1 pending/presumed positive.  There are 25 of us in my area right now and more in the ICU. 

Oh, and the Gunther’s are gonna try and find the driveway they can drive up and wave to me-I’ll let y’all know if it works!  I miss all your faces!  

Love and hugs,

K 

Covid SUCKS

 Let’s see if I can chronicle how I ended up at KU tonight....

My oxygen level dropped to 90 today and I was having sharp right flank pain. I was dizzy and nauseated and freezing-then a clammy sweaty mess. 

I called Dr Nye’s nurse Camie (my KU Oncologist) and she said do not pass Go, do not collect $200, go straight to the ER. 

And if you’ve never experienced KU’s ER-it’s a fucking shit show that runs like a chaotic well-oiled machine. And though I knew I’d be treated like a VIP at NKCH, I need to be here. 

It’s a sobering feeling to be sitting in an ER with Stage 4 Metastatic Breast Cancer and Covid. I’m not a crier, and I started crying when Camie told me to go in. I’ve read all the stories, I wear my mask. I really don’t go anywhere and I could be one of those horrible statistics that died from Covid alone in a hospital room without my family or friends. Not how I plan to go. 

Covid causes blood clots and one of my clotting labs was elevated so I got a CT PE Chest to rule out a pulmonary embolism in my lungs. Yes-the dreaded elevated d-dimer. But hey-they have a really nice GE 256 slice scanner so I chatted with the CT Tech about it-in between horrible, hacking coughs from lying flat. 

My blood pressure is elevated at 157/96-probably because of the raging headache and neck pain I have. 

My lab work shows my white count is 2.9 and my ANC is 1.53-I’m definitely immunocompromised.  And the CT didn’t show any blood clots-but rather ground glass opacities in both lungs-worse in my right. Otherwise known as pneumonia. And tonight I have a fever of 101. 

I went from feeling *pretty good* yesterday to having bilateral pneumonia in less than 24 hours. I can’t stress enough how scary this virus is. 

I’m being admitted to Internal Medicine Service and I really liked the Dr who just came in to talk to me. 

Here is the regimen I am going to be on for now:

Tylenol q4

Breathing treatments q4

Rocephin and Doxycycline antibiotic 

Tessalon Perles for the cough 

Deep breathing exercises to try and clear all the junk from my lungs 

Advance nutrition as tolerated -speaking of which, I could really go for a hospital jello right now!

He is also going to have the Onc on service weigh in because Dr Nye has me currently holding my chemo. 

I’m still in the ER-hoping to go to a room soon and beg for some food. I will keep y’all updated. 

Wash your hands, wear your masks and don’t take this shit for granted. I feel 

absolutely 

A W F U L.  

Nobody deserves to feel this bad. 

Summertime Update

It’s been far too long for me to post an update. Typically that means no news. In this case-there’s been lots of stuff going on. Ethan’s spine surgery was Friday 6/19 at Children’s Mercy. And I’m not gonna lie-this surgery had Brian and I more anxious than any of his other surgeries. Even his heart surgeries. The potential for a variety of complications was huge. And in true bald kid fashion, this was no exception. 

Ethan was placed prone (on his stomach) for the entirety of the surgery and his back literally filleted open. As a heart kid they can’t dump fluids in him, and he lost enough blood during surgery that he got some of his own blood back on the cell saver and a unit of donated blood. He continued to need blood later in the evening after surgery also. He also decided to spice things up with some funky heart rhythms during surgery. That bought him some cardiac drugs-dopamine and replacement calcium, magnesium, potassium and albumin. And more time in the PICU.

 I almost laughed at Dr Schwend when he told us Ethan would likely be home 5 days post-op.....yep, it took Ethan 10. He just has to prove everyone wrong! But 5 days in the PICU with some amazing nurses and 5 days on 4 Sutherland with more amazing nurses and they got him squared away. I think I have been anxious from the day we knew he needed surgery until about last week. And he has done remarkably well at home. He went home with 56 staples we had removed July 8th and his 7.5 week follow up with Ortho is next week. He was off all narcotic pain meds within 10 days of being home-they wreak so much havoc on his gut we needed those to go fast. This week he’s been in his regular wheelchair and as soon as I feel up to it-I’ll be taking him for a spin around the neighborhood! And once we can get his adaptive tricycle adjusted to his new 3” growth, we’ll be cruising him on that too! 

 So, thanks to Dr Schwend and Anderson-the Ortho Dream Team-and all the fabulous staff at CMH, my worries were assuaged and overall our sweet boy breezed through yet another surgery. And check out how straight our boy’s back is and all his new hardware! 

Brian took the written portion of the Captain’s testing process in March, and completed the Oral Assessment portion last Monday. We are thinking we will know if he’s being promoted to Captain by sometime next week. I’m so proud of all the studying and preparation he put into it and I’m sure it will pay off. 

Hailey got the great news that she was accepted into the University of St Augustine Doctorate of Physical Therapy program in Irving, Texas!  Her hard work and perseverance in pursuing her dreams has finally come to fruition. We’ll be getting her moved to Texas and settled there in the next few weeks for an intensive 2 years and 8 months of grad school. At least I’m not working anymore and can go see her anytime she wants or needs me!

  

Parker turned 21 on July 2nd!  Yes-21!  I have no idea how, because I’m not aging. He and some friends took a trip to Colorado to celebrate and stayed in Denver and in a cabin with a gorgeous view in Estes Park. He has been very helpful to me at home with Ethan. I can’t pick Ethan up the way he needs to be right now-so P does the heavy lifting.  He’s still a little lost about what he wants to do with his life, and suffers from depression. We’ve had him in to see 2 different physicians recently and he’s seeing a third this week. I’m hoping the third time is the charm and we can get him squared away. As much as I wish it was something I could help him with-the best thing I can do is get him the professional help he needs and make sure he knows we will always be here for him.  This is not new, he’s struggled for years, as far back as middle school, and we’ve just seen him spiral the last year and we’ve got to get it under control. 

I’m doing well. Well is a relative term for me-some days are good. And some are not so good. This week is my off-week from chemo and it’s usually the toughest week of the month for me. At least the first few days of no chemo are.  Fatigue and nausea. And couple that with the heat and humidity of the good ole Midwest, and I’ve had some pretty significant aches and pains the last two weeks. My tumor marker is back within normal limits-35.1 on a scale of 1-38 being normal!  Woo-hoo-I haven’t had a normal Ca 27.29 for almost a year!  That and my CT that showed all my bone mets are stable with no new ones tells us my chemo regimen is working. 

But....there’s always a but in this family....

I have gained 25 pounds since January putting me at my heaviest. Ever. And it sucks. What sucks even more is to hear from my Oncologist that losing weight with stage 4 hormonally positive breast cancer is the hardest thing to do. My hormones are working against me and the drugs I’m on to keep my cancer at bay aren’t helping either. 

I’ve been walking-when I feel good and the weather isn’t like the Sahara or pouring-but the humidity makes my back ache. Oh, and I can’t go to my favorite chiropractor because ya know-spine mets and the potential for a broken back. So I’ve finally gotten Brian and Parker on board and we’ll be tracking all of our food and I’ll be doing the Fasting Mimicking Diet or FMD. There is positive research that FMD is beneficial to cancer patients not only to help with weight loss, but tumor regression and need for fewer drugs to combat chemo side effects!  Since Brian wants to get off his diabetic meds-the FMD will help him also-if I can get him to do it. 

It just pisses me off that 8 years ago my Onc didn’t stress the importance of losing weight and maintaining a healthy weight. Being that my cancer is so Estrogen positive (100%) just suppressing the estrogen produced in my shriveled up, raisin-like 49 year old single ovary I have left is not enough. Did you know that excess body weight produces estrogen? Ya, me either. Until now. And likely this weight contributed to my MBC diagnosis. So if you are a hormone positive breast cancer patient or love one-please encourage them to get the excess weight off. It may just save their life one day-in more ways than one. 

Oh, and Covid. I’d love to say that during the great pandemic of 2020 I accomplished something like learned a new language or perfected some culinary skill. But, alas, I did not. I binged some serious Netflix-Schitt’s Creek and Supernatural being the latest. And I’m really surprised my husband hasn’t kicked me out of the bedroom at night laughing so hard at David and Alexis and Moira and Johnny’s hilarious antics.  

And I did get elected to be the Secretary of our Police Friends and Family group recently. I look forward to helping out again with this group and our Blue Family. I even got to judge a Margarita Contest as part of my secretarial duties!  The Steak contest and Margarita contest proceeds were donated to our group and will help us help our officers and their families and continue to bridge the gap in our community. 

And I’ve turned our basement into my personal sign painting class studio. I love to sit and paint and listen to podcasts. I’m a true crime podcast junkie-so share with me your faves!  

And if you ever want to paint some cute holiday or home decor-hit up my business page Salvage 2 Chic I’ve got a class coming up end of the month. 

Brian and I are planning to head to NOLA with our dear friends The Williams in September-so I’m hoping the Covid cooperates and we can actually go down. Brian’s cousin Mike called last weekend to tell us that the Mayor just basically shut them down again by not allowing drinks-to-go from bars in the French Quarter. Apparently she felt there was too much gathering and the potential for it to be a hotspot too great. So I guess we’ll seen soon enough. 

But I am beyond excited about getting to do dinner and cocktails with my gals this week-it’s been a rough 2020 on all of us-and we need some laughs. It’s been way too long since we’ve been able to go out!  Now to decide where.....

I promise I won’t wait so long to post another update. In the meantime stay safe and if you’ve never watched Schitt’s Creek-put it on your list-you won’t be disappointed. Unless you don’t like to laugh. 

Gotta go watch the latest episode of Yellowstone and try to figure out how I can go work on the Dutton ranch and enjoy all that beautiful scenery. Not just the mountains and the horses, if you know

what I mean.....

Love, hugs and prayers,

K