March 2026: Update Part 2: Second Hospitalization & More

 

Ok, so we left off with 1 double hospitalization (last week of February-March 1st) and a car wreck that totaled our truck on March 7th.

Something Not Right

As I mentioned in my previous update, I had a UTI at discharge. Despite being on antibiotics both in the hospital and after discharge, it was still not getting better. I did my hospital follow up with my PCP on March 11th and he changed my antibiotics and sent off for a culture of my urine to get a better idea what was going on and what antibiotic would best work to fix it. Cultures usually take a few days to run. 

Over the next few days, I started to have only what I can call "disordered thinking". I was so frustrated because I felt like I was talking and explaining myself properly but everyone around me (Paul and the kids) were telling me they didn't understand what I was saying, that I was only talking in half sentences, and that I was often not making much sense at all. Meanwhile, Paul was also struggling to stay awake for longer than a few minutes at a time. We both kinda chocked it up to just being exhausted and still healing and reintegrating back into "regular life." 

Overnight on Sunday the 15th I got an alert on my phone that the culture was back. It identified the bacteria as the mostly antibiotic resistant klebsiella pneumoniae. My nursing kicked in and I will admit that I panicked just a bit. I knew I had had Chemo, my ability to fight off normal infections was down, I had had this UTI for several weeks by this point, was having disordered thinking, and knew this was nasty if it got into my kidneys or bloodstream.  I woke Paul up and we went to the ER. 

I wish I could say I then got started on antibiotics and all was good but I think the combination of my panic, it being the middle of the night, my disordered thinking which was in high gear by that time, AND the fact that my dr office and the emergency room I was at are two different hospitals that don't automatically share test results very streamlined contributed to a bit of confusion.  However, for whatever reason it didn't quite make it to the attention of the attending doctor the actual bacteria that I was struggling to get a handle on. 

They discharged me to follow up with my PCP and continue with my antibiotics. They also discussed the need to reduce my anxiety (well duh!) lol 

While we were at this visit, Paul, started to also show signs of a UTI (this will be important later...see where it is going??) Remember also, this is overnight Sunday March 15-Monday March 16th. For those local the 16th was also the day of the big storm predicted to hit with the potential for long range tornados that sort of puttered out and didn't materialize...but at the time of my discharge, I didn't know that and the wind and clouds did look pretty unusual.  I also left with assortment of Coban accessories and a particularly hideous bruise from a blood draw attempt. 

 

Second Hospitalization for Paul

Paul made it at home until overnight Tuesday March 17th and Weds March 18th. We had actually made him a dr appt for that Wednesday with our PCP but it became clear when his symptoms increased dramatically, he was pouring sweat, had chills, also had disordered thinking, and could barely stay awake that he needed treatment immediately. So, at around 2am, we called an ambulance (remember we had no vehicle as ours had been totaled and truthfully, I was in no position to try to maneuver him around anyway and he was wobbly and he doesn't fit into every vehicle for a friend, family, or neighbor transport.)  

My son followed behind to be with him in the ER as I was in only a slightly better condition myself on oxygen, with limited mobility, and having symptoms myself. It is a helpless feeling to be watching your person get taken by ambulance while you are unable to be there by their side. We definitely knew though it is what needed to happen for him. 

                                                     

Yes, that is our Christmas tree still up, don't judge y'all, its been a year. Plus, our 15-yr old has decided she wants it as part of her room decor once we finish painting and remodeling it (she is doing a Tim Burton inspired room). 

Verdict, on Paul at the ER... He was admitted, he had a definite UTI which they start a culture on (cultures remember take days) and he is septic. They start him on IV antibiotics; he isn't really able to give updates on his own. He is the sickest I have ever seen him at this point for sure! 

Second Hospitalization for Angel

I think I left out that our 15-yr old was also feeling under the weather. Allergy season over here in SC is going gangbuster this year and what started out as just allergies I was almost positive at the time had turned into a sinus infection for sure and most likely a double ear infection as well.  

This guy was to blame. It is an invasive evil beautiful tree, and it lines the roadways in the main roads along our entire neighborhood. 

Sure enough, she has a double ear infection and sinus infection. She is started on meds. and then the doc turns his attention to me. He tells me my culture results and says that there are only 3 IV antibiotics that it responds to and I need to go to the hospital right then to get admitted. He writes out the three drugs on a piece of paper for me to give the hospital since they have trouble seeing records. 

Let me add here that at this point we were officially beyond overwhelmed. 1 hospitalization of one member of a family disrupts. 1 double hospitalization for both parents simultaneously disrupts beyond measure. but TWO??  I want to pause and thank all who stepped up. Mady and Laffy came and stayed at our house to take care of Maeryn and the dogs and our house, even while they had their whole household to tend to too. My friend Jesseca set up a meal train, and so many came alongside us. It was such a HUGE help knowing the kids were fed, life was just a bit easier for them, and we could concentrate as best we could to heal make it to the other side of all of this that was happening. 

Anyway...back to the update.  He gave me a handwritten piece of paper with drug names. Anyone heard of any of these gems? 

The peroxide is how to sanitize and clean up behind it. We now have enough we should own stock in it lol 

I get admitted; they do blood cultures to check to see if I am septic as well and within just a few hours, I have the first drug on the list flowing into my veins. It is a once-a-day drug, and the normal course is 5-7 days. I get moved up to a room again on the same floor as Paul a few hours after that. By the next morning, I can think more clearly, and I am starting to feel dramatically better. 

By the next morning though, I realize that my husband still isn't really responding to me by text. When he does message it is short and he just isn't himself.  I am highly concerned. I start advocating for him to get the drug I was started on, but they are hesitant because it is so strong and they at this point do not have a culture showing that he has what I had. 

He texts me one message that sends me into action, "I've never felt like this before."  Long story short over the course of that day I told anyone who would listen how concerned I was about him.  I even emailed his one of his specialists he had been seeing for his cellulitis who knew how difficult his response to antibiotics was explaining the situation and asking for advice on how to best advocate for him. The last thing I did that day was talk to his charge nurse and I said "there are two things you need to know about my husband. 1) he doesn't complain he endures so if he is complaining something is wrong, he is NOT ok. 2) My husband revolves around me like the rings around Saturn, especially since my cancer diagnosis, the fact that he hasn't asked how I am doing, checked in on me by text, or asked about my treatment plan in the hospital is another HUGE red flag. Please, please advocate for him with the doctor to try this antibiotic I am on while we await the culture results." 

The next morning, right after my morning meds, they agreed to allow me to go see him. I gathered up my phone, my pillow, a book, and a few other items and they wheeled me over. He didn't even recognize me at first :( My plan was to sit with him until they forced me to go back to my own room. I mean what is the difference between sitting in the recliner to be up and out of bed in one room, or in another down the hall anyway. 

His view was nicer than the one in my room...but mine was the best view of all in there...

 

The nurse comes in and explains that they had given him his first dose of the new antibiotic, MY antibiotic, and not only that but the doctor on call from his outpatient specialist, the one I had messaged the night before, was making rounds and coming to see him (Praise God!!!) 

Seeing that bag of antibiotics hanging on that IV pole was the most beautiful site ever! by the time they brought us our lunch he was sitting up, weakly but hey at that point it was all blessing!!, and he knew who I was and for the first time in almost half a week, he even asked how I was doing :) (Full disclosure this IV bag pic is actually on day two but you get the idea :) )

Shout out to the staff btw for bringing my lunch over for not one but TWO days while I did the have more morning meds, then transfer to his room until after dinner. They literally hung a sign on my door that said "She is room ____ with her hubby" and anyone looking to do vitals, or meds etc. just found me over there. 

Discharge for Oncology Visit 

Fast forward, I get discharged before him, though he is doing better hour by hour, day by day. Looming over us however is a date. It is Friday by this point (I went home on a Thursday) and I am having my very first Oncology visit since my first Enhertu chemo treatment, all the blood clots, etc. It is to decide what next and is very important. Paul really wants to not miss it but he also needs 7 days of this antibiotic which is IV. 

I don't know all the details on this because I wasn't there and didn't hear it firsthand, but at some point, during the morning rounds with the infectious specialist, we got onto his team, Paul pleads with him and the doctor says look there is a way you can go home. *If* the stars align and they can get insurance approval and there is someone available to place it and teach it, there is a possibility that they could discharge Paul that day with a PICC line (think IV that has a line that runs from your upper arm into your heart) and I could give him his antibiotic from home Saturday and Sunday and he could go to the infusion lab on Monday and Tuesday for his last doses. 

Paul jumps at the plan!

 (You do remember me telling you my guy is like the rings around Saturn with me, right?)

Well, the stars aligned, the PICC line was placed, my daughter came up with me and we both did the required teaching, and right at 5pm (the deadline for getting released on Friday vs sitting in the hospital until Monday), Paul came home. A sweet friend and her hubby were gracious enough to drive us home. 

The weekend was not without its challenges. We were all exhausted and it was a wild dump back into "regular life" after weeks of double admissions. but we got through it (special thanks to Mady, Laf, Maeryn, Mcleod, and Mr. Josiah for being right in the thick of things each and every day of it) 

We ended up doing the Monday and Tuesday dose from home as well (Mady was instrumental in this too--we are a great team!)  and he had his PICC line removed later that week.  He is nearly back to 100% now and able to do all that he did prior to this whole experience. 

Oncology

Bright and early on Monday March 23rd I went to my oncology appt (cancer doc) and we discussed all that happened and weighed the pros and cons of next steps. Paul, with his PICC line, was right beside me. We decided to try a second round of the Enhertu now that we had the blood thinners on board as it was still far and away the best and most aggressive way to treat this 2nd recurrence and 3rd bout with this cancer.  

I want to be clear. I have not been given any sort of expiration date at this point. My stage did change from stage 3 to stage 4 because of the recurrence and its distance from the original site. It is a small lymph node and my January scans showed no other areas of concern besides this one little lymph node (smaller than a pea). However, it is in my trachea, and we don't want it to spread or jump to any other location and my hospitalizations delayed my treatment schedule. I am supposed to get it every 21 days. 

We agree to move forward. I am at that point thinking that it will be later that week or next, but he kind of shocks me and says y'all can go on ahead and go up to the 5th floor and we will get that started.... right then. I was emotional, not in the scared way tho I was scared this round afraid of the blood clots n such. But my hubby, who was still not at that point 100% was right there alongside me. He has never missed an appt or chemo or procedure this entire time and while I could have done this without him, I have never felt more seen and protected and loved as I felt with him sitting in the chair beside me. 

So up to the 5th floor we went. 

"Sometimes faith is just pushing a button you are a bit scared to push."~ Angel 

So, we got the second dose, and we played a round of the game we always play...just one this time b'cos we were both exhausted. but we did it, like we do everything---even hospitalizations lol, together.

 

 

Post Treatment

Next Monday (April 13th) is my 3rd dose of Enhertu. It's been scary as I said this go round because I have been hyper aware of every little twinge. The side effects are also harder than my previous chemos, but I am feeling optimistic and we are looking forward to the next days, weeks, and months and what unfolds before us. 

God's got us.

We've got each other.

And we are blessed by each and every one of our friends and family who are alongside us in this journey. Even if the part you are playing is reading this long blog post and helping us feel seen!!!

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I have more flowery musings that will be coming (probably this weekend) and I apologize for the delay in letting everyone know about all of the updates for February and March. It has been a lot and I have not had the bandwidth at times to reach out and keep everyone up to date. 

Please note going forward, I might not be as interactive on social media for stretches of time as I balance everyday life, recovery, and just all the things. I am going to try to be more diligent about posting relevant timely posts here to keep everyone updated all at once. Thank you for understanding and for your graces if my plan goes astray lol