Bittersweet End of an Era

 Today was bittersweet as we saw our favorite bald Dr for what is likely the very last time.  

Dr Kaine has been with us since the beginning. 

Literally. 

He first saw Ethan when he was days old with a  ToF/WPW diagnosis, and here we are 17 years later. 

An amazing Cardiologist with the absolute best bedside manner and personality. 

We got a recommendation from him for a new Cardio at St Louis Children’s, but there truly isn’t anyone like Dr Kaine. I did promise him I would have an open mind and he assured me this new Dr would be fabulous for Ethan and appreciate my knowledge and advocacy. 

I’m pretty sure he was saying he has thick skin and will be able to handle me as well as the bald kid, but that’s just my guess

(Ha-ha!)

As for the bald kid’s heart:

Ethan’s Melody Valve is still working as perfectly as it was the day they put it in almost 8 YEARS AGO!!  Wow-I can’t believe it’s been that long.  His Right Ventricular function is working well, and his pulmonary pressures are high end of normal-which is all normal for Ethan. 

E’s aortic, mitral and tricuspid valves all show mild leakage-which is unchanged from his prior years echos, so all good. 

Dr Kaine chuckled when he told me all this because he said there’s no way you could look at his echo today and have any idea how bad his heart was in 2013. 

Or have a clue how sick he was. 

Let alone begin to fathom that had we not gotten him to Boston when we did that he would not be with us today. 

He hugged Ethan and said goodbye with these words “we’ve been through a lot Buddy and I’m honored to have been a part of your journey. “

And by then I was a blubbering fool. 

No, Dr Kaine, we are the lucky ones to have you in the bald kid’s corner for the last 17 years. 

Ethan doesn’t look thrilled in this pic-but it’s just because his allergies have gotten the best of him lately and we forgot to put his eye drops in this morning. 

I switched my treatment to the Siteman Cancer Center at Barnes Jewish here in STL. Actually, my new Oncologist is Ashley Frith and the Siteman location she works out of is only 7.5 miles from our home. I’ve had 2 appointments with her and am really pleased. At this point she has no plans to change my treatment course, because it’s working! Other than adding in a B12 injection so that now I get one every 2 weeks. 

Tuesday I got my port flushed, labs drawn, saw Dr Frith, got all 4 of my shots and had X-rays done of my lower back, pelvis and hip. It took longer than that to just get my labs drawn at KU sometimes! 

I am getting my 3 month CTs and Bone Scan this Friday so fingers crossed we see no progression. I’ve had a lot of pain across my lower back and sacrum/pelvis area, hence the X-rays this week. They showed nothing new so hopefully the scans show the same. 

Fortunately KU and BJC/WashU share the same electronic medical record system so I was able to sign a release and give my new docs access to all my old records.

I’ll miss KU, but am happy not to be making the 6 hour round trip twice a month anymore! 

I also have an appointment tomorrow with a lymphedema Occupational Therapist and week after next with a plastic surgeon to see about having my lymphovenous bypass here instead of in KC. 

Speaking of surgery......

Ethan is scheduled to have some foot surgery next week. 

Here’s what Dr Schwend is going to do:

Left Brevis tendon lengthening

FHL (Flexor Hallucis Longus)to Achilles Tendon Transfer

Calcaneal Osteotomy 

And snip the tendon under his curly toes  on both feet and put a wire in to straighten those out!  

It’s supposed to be an outpatient surgery, we’ll wait and see if Ethan has other plans, and he’ll have casts on both feet for 6 weeks post-op. 

Since his spine surgery last summer, his Brevis Tendon has tightened and pulled his left foot into a permanent flexed position and pulled his heel out laterally. It has made it near impossible to get his AFOs on him (foot braces) and even harder to get him to walk with a foot that stays flexed. 

All of this will relax that foot and the calcaneal osteotomy will put his heel bone back under his shin bones. 

So we will be in KC next week from Sunday the 6th until we feel comfortable enough to bring him back home with us. Hopefully just a few days. 

But again, this IS Ethan. 

And now that we’ve had our new PPO insurance for just over a month, our deductible has already been met and our out of pocket max will be met after next week.  So we’re set until January 2022! 

Here’s to hoping we don’t have to use it for anything else the rest of the year! 

Oh, and if you haven’t watched the Friends reunion special yet-do it! I thought it was excellent. I’m actually binging all the old Friends episodes now. I really just play them while I paint signs and walk at the gym for a good laugh. 

And some good rainy day movies we watched recently were:

“Those Who Wish Me Dead” with Angelina Jolie 

“Nobody” with Bob Odenkirk

“Wrath of Man” with Jason Statham and 

“Without Remorse” a Tom Clancy story as an Amazon Original. 

In case you’re bored. 

And like movies as much as we do when the weather sucks. 

I’ll keep you all posted on my scan results and E’s surgery! 

Much love and big hugs,

K

Bring on Spring

I hope everyone is doing well and staying safe.  

Call me when it’s sunny, cause I’m over this dreary weather! I’m so ready for spring and sunshine, because it’s so hard to have any motivation right now. 

 We are all moved to O’Fallon and settled in. Well, minus any living room furniture because it’s not supposed to arrive until end of March. But we’ve got some fancy rocking lawn chairs that are pulling double duty as living room recliners that work for now.  

With the crazy inflated real estate market right now, we opted to rent rather than purchase. We found a lovely 2 bedroom/2 bath apartment that’s almost as big as our first home, complete with granite countertops, LVT flooring and a master bedroom bigger than our last!  

And what’s even nicer is that if we want to pick up and leave town for a weekend (or a week) all we have to do is lock the doors and go. 

Plus, we are 5 minutes from Brian’s Mom and 15 from his brother. We’ve spent a lot of time together with lots of laughs.  I can’t wait for the weather to warm up to be able to take some day trips with the niece and nephew and do some fun stuff! We have City Museum, Grant’s Farm and The Butterfly House on our to-do list. 

Ethan went to in-person school for the first time in almost a year!  His new school only has 12 kids in attendance so they’ve really been able to social distance. Aaaannnnddd he was still exposed to Covid! Argh!!  Oh well, it happens. And it was a risk we were willing to take with such a small classroom-4 kids!  

Based on the pic they sent me from his first week, he’s having a good time!

And right when we were one day from being out of quarantine, guess who spiked a fever?  

Fortunately our little Covid faker was fine the next day, and has been fine since, so who knows?!?  

He can go back to school next week and they’ve had 2 inclement weather days plus a no-school day this week so he’s not really missed much. We are making daily phone calls to nursing companies with ZERO luck. We were actually put on a ‘waiting list’ for our area with one company. Brian will eventually be going to work and I am gone at least 2 full days a month for appointments in KC, so we need to secure someone before that happens. 

Before we left KC I was having awful pain in my left butt cheek-where my biggest metastatic lesion is.  But my latest CT Scan showed no new disease there and my tumor marker is back well within normal limits!  I have to believe the pain is weather related, because once I started really keeping track of the pain in my journal, I realized it was always worse when we had precipitation. More so with rain than snow-but still some dull aches when it snows. 

I am still really struggling with notable fatigue on a daily basis, which is really frustrating.  Even though my counts are all really high and good, my Onc had me take an extra week off my meds before starting another cycle. Since that didn’t really seem to make a big difference in my level of fatigue, they are thinking it’s a Covid side effect. Yay!  I’m well on my way to being called a Covid ‘Long-hauler’. Not the title I ever wanted. We are trying to coordinate me getting the vaccine on my off week between med cycles, but it’s not available for me just yet at the Cancer Center. 

I have passed one full year of treatment for metastatic breast cancer-actually 13 months since diagnosis!  Woo-hoo!

Hitting that 1 year mark is a victorious but bittersweet feeling. Knowing most MBC patients have about a 5 year life expectancy, I’m thrilled to have hit 1 of those years, and scared I only have 4 left. 

But my Oncologist is so optimistic with my treatment, and being that I have a low burden of disease, that I refuse to let it consume me.  Now that I’ve passed a year on treatment, I’ll keep getting my labs done every month, my CTs every 3 months, Bone Scan every 6 months but I’ll only see my Onc every third trip/alternating with my Onc NP. But we communicate a lot through my patient portal-and I get answers to my questions quickly, so I’m kind of relieved to have one less standing appointment on my calendar every month. 

I met with my new Plastic Surgeon, Dr. Butterworth with KU, before we left KC also.  I really like him and he’s already got me on the schedule for surgery for my lymphedema-it’s not until September 1st, but that’s ok! He’s going to do a lymphovenous bypass AND a lymph node transfer to help with my lymphedema. Nothing he can do is considered curative. What’s done is done. The goal is to keep it from advancing any further to the point of limited use of my arm, and to give me a little relief.  I am still using my ‘Michelin Man’ pump 2x daily, wearing compression sleeves 24/7 and seeing my PT for manual massage every trip back to KC. All of these things do help, but I’m looking forward to not spending the majority of every day working on my arm. 

Hailey is back in Texas and doing well. She’s planning to come visit us over her next break from PT school in May. 

Parker had 2 roommates move in after we moved out, and is doing well-thrilled to be on his own finally. Though he has called and text me quite a few times since we left-sometimes just to chat and other times with recipe questions.  At least he’s cooking and not eating out for every meal!  His company has shut down for the next few weeks due to Covid production problems so he’s going to come spend some time with us soon!  I think he misses the bald kid more than anything. 

I don’t even want to comment on the Super Bowl, but I believe our KC boys will be SB contenders for many years to come, and in the meantime the city will be distracted by Baby Girl Mahomes before we know it.  That, and Royals Home Opener is only 50 days away!  Bring on baseball!!

Just a quick update about the latest in our lives. 

We are currently loving the Discovery + network and I’ve got to catch up on my Good Bones, Restoring Galveston and NEW Fixer Upper episodes, so back to my besties Chip and Jo I go....and to help Brian put together our new small writing desk with eleventy hundred screws.....

Love, hugs and prayers,

K

How can it be almost Christmas?

 

Has it really been that long since I wrote a post?  

Yep. Cause life happens and you sell your house in a day and then sell off a lot of your furniture and stuff and then have to find and move into a temporary apartment which means renting a storage unit and then getting a second one at 8pm on a Saturday night before the new owners take possession the next week and your husband retires a month earlier than originally planned and before you know  it it’s Thanksgiving. 

So yes, life has been crazy. 

We are currently living in a lovely 3 bedroom apartment that Parker will be staying in when we leave KC. He has 2 roommates ready to move in once we are gone!  It’s not been bad at all. Apartments today are not at all like what I lived in years ago; attached garage, nice washer and dryer in unit, granite countertops and walk-in closets.  A far stretch from my former home at Tanglewood. 

It looks like we are leaving KC mid January and headed to St Louis. We are taking a trip down the week before our move to take some stuff and drop off Brian’s car.  That way we only have to make one trip back with my van and a U-Haul when we move for good. Brian and Ethan and I found a great apartment in O’Fallon where we will be living-close to his Mom and not far from his brother. Again-so not like my former apartment living.....when they say luxury apartments, they mean it. Well, some do-we looked at some not-so-luxury luxury apartments too.  

We are both excited for a change.   Not that we don’t LOVE Kansas City, but the adventurous side of us is ready. And Brian’s job in STL has been put on hold temporarily due to Covid, so we may even do a little traveling once we get settled in. 

I vote for warm and sunny!!

Since my Covid infection, I’ve been doing well for the most part. I still have a cough I fight with and some fatigue if I do too much. But the one thing that was completely unexpected and sucks is the post-Covid phenomenon of hair loss. 

Yes, I said hair loss. 

It’s true-look it up. 

In the last 8 weeks I began to notice a change in my hair texture and started finding hair on my pillow. 

Now, if you know me well, you know I have thick hair, and a lot of it. And I don’t shed hair like some people do. I actually lose a handful every time I shower and more when blow drying or brushing my hair. 

Compact for comparison-this is hair I lose in one shower- and this is same day after blow drying...

So I asked my Oncologist if it could be my meds because 2 of them do have that listed as a side effect. 

Nope-if that were the case it would have happened before now. I’ve been on these meds for 11 months. 

It’s due to my Covid bout. And it may all fall out, it may not. There’s just so much we don’t know about Covid and won’t know for years to come. But this hair loss is definitely one effect. I’m so tempted to just shave it all off and see what happens....not like I haven’t done it before.  I guess I might wait until it’s warmer. But I’ve been bald in the winter months and do have some cute hats.....

I recently visited my Lymphedema nurse for my yearly follow up and to talk about how my lymph PT is going. My arm is ok. Just that-not great, not awful-just chronic lymphedema at this point. And I began noticing an area in my palm that could be a sign of fibrosis along with experiencing some hand numbness and tingling. Like I said, it’s not too bad right now, but we don’t want it to get worse, because it can reach a point where there’s nothing we can do about it. So she got me scheduled to see a plastic surgeon to see if I’m a candidate to have a lymphovenous bypass done on my right arm. I see Dr Butterworth with KU in January, and if I am a candidate I plan to have it done. 

It won’t make anything any worse if it doesn’t work, so what do I have to lose?  Basically he will find the small lymph vessels in my arm that are blocked and re-route them to dump directly into my venous system instead of having to fight to go all the way up to the remaining lymph nodes I have in my clavicle area to be filtered out.  It sounds like a major surgery-and for the surgeon it’s a lot of microscopic, fine detail work-but for the patient, apparently it’s not too bad and not a hard recovery. 

I mean, if it’s not one thing, it’s another right?  

Kind of like my recent hospital stay due to cellulitis in my lymphedema arm from a tiny cut on my finger. 

From cutting open my wine delivery....

Argh!!! 

That is the kind of thing that starts to happen that would classify a lymphovenous bypass as medically necessary for sure. 

My arm was fine-and then it wasn’t. 

Can you even see the tiny cut on my finger?  It’s all to blame for this: 

Hot, red and swollen and I knew exactly what it was. After 24 hours of IV antibiotic I already started to feel better. By day 3 I was ready to go home and finish out my antibiotic course with oral meds at home. 

It pays to still have friends in Healthcare that help you get in and seen quickly and by one of your favorite ER Docs. 

Heather Murphy-you’ll be jealous to know I got to see DG and he took great care of me!  All the staff at NKCH was fabulous-it’s just such a weird time for medicine and my heart hurts for all my friends dealing with this pandemic right now. 

Many of you may know that I lost an Aunt recently to Covid.  She had finished her treatment for Breast Cancer and was doing everything so carefully to avoid being infected.  But it wasn’t enough. After 3+ weeks of being unresponsive and on an ventilator in the ICU, she passed away. It was so hard to see the pain my Mom and other Aunts and Uncles went through not being able to see her, not talk to her, not hold her hand when she passed and to not be able to celebrate her life with a funeral. She was laid to rest with the same people present the day she married her husband. And I know she was welcomed to heaven by her Mom and Dad and Grandma. My Aunt Linda was an amazing person and so supportive of all of her nieces and nephews. Called me her ‘Hero Warrior Niece’ and checking in on us often. And she had the greatest laugh. I’ll miss hearing it forever.  If you look back on my Facebook posts-you’ll see a fun story I shared about her and I when I was younger. 

It’s just so unfair. 

And I don’t have the energy anymore to argue with people about Covid and masks and rights and all that other bullshit. Figure it out yourself. I just hope you never have to let a loved one die alone because of it. Because it sucks. 

I long for our pre-Covid existence just like everyone else-I’m just not sure post-Covid is ever going to look like that again. 

Sorry it has been so long between blog posts-I’ll update sooner I promise!  

Ethan has an overnight sleep study this weekend, Hailey is coming home for the Holidays and I still have shopping to do-so I gotta get back at it!

Have a very Merry and Safe Christmas!  

Love, hugs and prayers,

K

Busted Out!

 Finally got to leave the house today!  

But, only to go to the Cancer Center. 

Had to do a drive-thru Covid test and have 2 negatives before I can come and go freely at the Cancer Center and for my PT. 

So today is the first and Friday my second. 

Until those come back negative, I get to park in the garage and be snuck in the back way to my treatment room in isolation. 

Not too bad since they don’t really want me here they are moving quicker than usual to get me done and gone. 

Today I’m getting labs-CBC, Chem, Estradiol and CA 27-29 (tumor marker).  

And also will be getting my Faslodex and Xgeva shots. 

They’ve held my Kisqali (chemo pill) since 8/24 because it depresses my immune system and we didn’t want to make it any worse. So today’s labs will help tell them if my counts are high enough to start it back up. The shots really don’t bother my counts, just give me a sore booty for a day, so we are on track with those as long as my Calcium level is good today. 

My 3 month CT and 6 month bone scans should have been yesterday, but we pushed those to October. I was having horrible back pain right before I got sick-like morphine/muscle relaxer/tramadol/not sleeping/take your breath away back pain that has oddly subsided.  I had mentioned it to my lymphedema PT because my last appointment with her she could tell I was in pain.  And it just so happens she is certified in spine work too......she did a few stretches and interesting positions on me and showed me some stuff to do at home and it clearly did the trick. I have had almost NO back pain since. When you’re Stage 4 and have a new pain, your mind goes to all the dark places. Worrying about losing my ability to stand and walk and be independent is terrifying. Though I would really love to be able to go to my amazing Chiropractor, that resource is no longer. With mets to bone, your bones look like Swiss cheese full of holes, thus rendering that bone less strong and stable. When chemo works-and we know mine has been-the bone becomes sclerotic, or more rigid, but not necessarily more stable. It can actually become so rigid that it doesn’t ‘give’ and be at risk for pathological breaks. Having the mets in my spine and pelvis is concerning for that reason. So a new pain typically equates to some new panic. 

I did have some xrays on 8/19 and they didn’t show anything new-but the CT and bone scan give more info than plain films do. But not having the pain anymore that needs all of those meds to take care of helps me feel better that the new scans won’t show anything either!  

Things have been slow going at home. Anyone who knows me knows that I’m moving with my hair on fire all the time and this ‘resting’ thing is really cramping my style. But I am following doctor’s orders and doing just that. It doesn’t take much to remind me when I’ve overdone it. 

People have asked how I feel-and for the most part I feel great. I have definitely been ‘sicker’ before, but the fatigue is like nothing I have ever had.  Brian still has some times during the day he needs to sit and rest also. 

Which is hard to do when you’re trying to get a house ready to sell.....

Yep, cat’s out of the bag. 

The house is going on the market mid-September. 

After a garage sale this weekend (I’m crazy)

And the big dumpster in our driveway is gone. 

No, I don’t know what we are listing it for yet. 

Yes we have an agent. 

After 26 years on the PD Brian is retiring in December!  

I’m a firm believer things happen for a reason-hence our motto “It is what it is” 

•Me having Stage 4 MBC 

•Crazy world pandemic

•Brian not making the Captain’s List

•Hailey getting into PT School out of state

•Parker getting a ‘real’ job 

•4/5 of us getting Covid and clearly me the worst. 

I had accepted the fact that I have about 3-5 years left on this spinning rock and was ok with that living the status quo. 

But when you are faced with the illness I was two weeks ago and the unknowing and uncertainty and fear, it really hit me that I don’t want to die. I don’t want 3-5 years left and I definitely don’t want to die from some damn virus. And I’m really not going to let that happen sitting at home!  (Not that we can really go anywhere right now anyway-thanks Covid). 

And I realized the other day that this summer was probably the last time all 5 of my family will ever live under the same roof again. 

It is a surreal feeling. 

I have an almost 24 year old out of state in Grad School and a 21 year old starting a new job that could likely be his career and wanting to move out on his own. 

I kind of felt this way when Hailey went away to college-but this is such a different feeling than that-and even then we still had Parker home and got an extra year with HayJay. 

So, in just a few months it will be me, Brian and the bald kid. 

(Yay, woo-hoo, snap/clap) 

Just kidding 

So when the opportunities presented themselves to us that have, we decided to go for it!  I know we’ve said our retirement is going to be in Texas, but it looks like we’ll actually just be moving to the other side of the state. 

Yes, the St Louis area.  

I would have never imagined that we would be fortunate enough to find Brian’s bio family, 

AND them be just a few hours away,

AND such wonderful people

So we’ve got lots of years to catch up on and it seems the universe worked out this way so we could.  I’m lucky with lots of family I’ve always lived relatively close to, now is Brian’s turn and we are thrilled we are getting this chance. 

Not all the details are figured out right now, and plans will be fluid and likely change and be tweaked more so as we get closer to December-but for now-it is what it is and soon enough I guess I’ll be sporting some Cardinals red!  

Time is short, don’t take the days for granted, because I’m here to tell you the rug can be ripped out from under you at any moment and completely change your life. 

I know that sounds trite, but it’s basically how 2020 has played out for me, and I’m calling this year a wash. 

Not in a bad way. 

Not even in a good way. 

2020 just kind of ‘happened’ to me, so it’s time to make the most of this year!  

Thanks to everyone for the prayers and support-y’all got me through some rough times and still do. 

Be safe and be kind 

-K

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