Week 1 Update

Hey!!  How’s it goin’ eh?  JR here….bet you didn’t expect to see me here (at home) less than a week after a horrific cancer surgery that I was not expected to survive.  Well, after a surgery that had it’s ups-N-downs, I did survive it and not only that, I was taken off life-support after only ONE hour!  Unheard of and, super awesome!

Additionally, the surgeon could NOT find the suspicious spot identified on the previous scans and during the biopsy.  So, to play it safe, he simply cut my lung in half and removed the entire lower left lobe.  I’ll leave the feeling of that to your imagination as I probably wouldn’t do it justice but, safe to say, the pain was more than I could take….at times.

Day two brought severe pain and, revealed the extent of what I just went through given all the tubes, wires and wound care stuff……and getting out of bed and walking around, hallucinating, talking gibberish and wishing for death to wash over me was a clear sign of what I was really thinking…..please, put me out of my misery.  But, it was not to be…..life had a stranglehold due to ALL your amazing thoughts, comments, prayers and magical juju to boot. 

I also noticed (almost right away) that I wasn’t getting the level of care and support I received the first time I battled cancer here and had that infamous LAR surgery. I then learned tht I was NOT in the cancer section but rather, the general surgery wing which wasn’t a huge deal because I had an awesome room with a ton of space, a couch, recliner, massive master bathroom with a huge walk-in shower etc……none of which I could use but, it was still pretty cool lookn.  But the level of care was inconsistent to say the least.

I did not receive any cancer related resources, a visit from my oncologist or any support that I got the first time I had a major cancer surgery there.  I didn’t understand why and found myself fighting for just about everything that I did actually receive. 

But, like with most bad/negative experiences I don’t want to paint a picture that they’re ALL bad caregivers.  There were definitely some medical staff members there (nurses, PAs, lab techs, housekeeping etc) that were really great, and some that were just terrible. 

Heh, a definite clue that I wasn’t in Kansas (the cancer center) anymore was… being told to be quiet, get back in my room and that I wasn’t anybody special so, I needed to stop asking for exceptions to be made to the rule.  Apparently, this gal felt that asking for bathroom supplies (toilet paper) and to respond to nurse call button actions in a timely manner was too much to ask and that wanting Teresa to spend the night was an unacceptable request.   

In fact, the shift / floor supervisor / manager refused to allow Teresa to stay with me like before for no reason other than, cuz he said so, that’s why.  I plead my case, reminded him of the hospital policy that includes exceptions that are made for critical care patients and that Teresa was my patient advocate.  Welp, too bad SO sad.  The excuses flew by with everything from covid (she’s been in the room all day….how will a few more hours risk spreading covid?  In fact, she can provide coverage if they’re running shorthanded etc

So basically, although he had the authority to make the exception, he chose to kick her out and although we live in southern MN, he said that she could simply drive back in a few hours when visiting hours were once again available to her.  Yeah, she coul if she actually drove!  I mentioned again that she was disabled and, AND, that she was my spouse but to no avail, he told her to get out and come back some other time.

I was NOT a happy camper especially after being reminded that this was NOT a cancer ward with “special” considerations and that I wasn’t in a critical care wing but rather, a general surgery ward.  What????  Again, where was my cancer doc?  Where was my oncologist? etc etc…..and, what about all the things you say are a value   …absolutely incredible.

At any rate, aside from losing the battle to have my patient advocate (and spouse) spend ONE night with me, I had to keep myself busy (couldn’t sleep due to the pain) so I started reading all your wonderful emails, DMs and text messages.

I literally had hundreds of comments on every platform from Facebook and Twitter to Instagram and LinkedIn.  I also had tons of comments from hundreds of people I don’t even know saying they’re praying for me in their communities, at their churches and in their homes.  Wow….super exciting and, it definitely took away the pain while reading all these comments. 

Obviously, I couldn’t respond to 989+ comments, so I simply Liked, Loved, Wowzer’d and Cared for each and every comment that I saw.  I should be caught up by tomorrow sometime. 

By day two and three I was walking up-n-down the hospital hallways howling in pain but punching my way through it and getting 4 walks in every day from that point forward.  I also got a visit from my sister Michelle so, that was pretty cool and, just what I needed.  What wasn’t welcome was the catheter removal ….always a great time, right?  LoL

The pain was still not at a comfortable / tolerable 3 or 4 but instead, at a consistent 7 or 8 but rather than work out a plan that would get me to an acceptable level of pain control, I was told that I had the maximum amount allowed and that there would be no other additional meds provided….huh??  what about non-traditional (aromatherapy, etc) pain management techniques etc that were offered to me for my other cancer surgery?  Ummm, yeah, no answers there other than being reminded that this isn’t the cancer center.    Nice!  

Additionally, when I asked what that maximum amount of pain meds was and, pointed out that they took away the pain management solution without giving me an alternative….I was simply asking too many questions.  Then, the response times began to get bad (uh huh) again but when I raised concerns I was told that I wasn’t the only one needing care here.  Wow…..gotta love that bedside manor huh?

Day four (Thursday) I got a surprise visit from a surgical team member who disconnected two of three pain killers (my failed epidural and the fentanyl IV line) and was just left on Dilaudid IV with a 10-minute pain pump booster.  Although it’s a continuous feed and kicks in immediately, it also wears off quickly and I often forgot to press the button for a 10-minute boost.  UGH.

I did however continue to improve at (according to some) record speed.

Day five (Friday) I was told that I would most likely be going home in the afternoon. I made it clear that I didn’t feel comfortable leaving SO soon after my surgery and especially since I had no control over the pain and taking me off the IV pump and sending me home with a few pills and expected to man-up and tough it out. 

The surgeon did say however, that if I insisted on staying, he could probably have an on-call doc to “check in” on me.  Ummm, wha…?  Well yeah, it was (unbeknownst to me) a holiday weekend (Easter) and there probably wouldn’t be anyone (my docs, nurses, surgical team, etc) around so, I rolled the dice and went home where I knew I would get round the clock care from Teresa, my Dad and the boy.  Hanging out by myself, alone at the hospital with a skeleton crew that had no idea how to care for a cancer patient was not appealing to me at all.

The surgeon assured me (perhaps I misunderstood him ??) he would take care of my pain meds for the next 15 days and then we could meet and if I needed a refill, he’d take care of it at that time. I then picked up my meds without looking at what they were or how many were issued…definitely a dumb ass mistake on my part.  I just assumed it was the pill version of the IV and a 15-day supply of it. 

Heck, I just wanted to get home and upon getting home, I realized he only gave me 15 pills total (less than 2 days’ worth) with instructions to only take them if needed (ie: pain levels at 8 to 10)….so, anything else, do nothing??….seriously?? 

So, I am to go from an IV (constant stream) version to a pill (slow acting) version but only take it if it’s an 8, 9 or 10?? Anything else and, you’re on your own??  Ummm, so how do I deal with the withdrawal symptoms and the spike in pain associated with having half of my lung being removed? 

Thank God Teresa took charge and tracked down my awesome family doctor and he and her worked out a pain management plan in record time and, we’ll revisit that every week so that my pain is managed responsibly and then, weaned off in a manner that won’t land me in the hospital.

Day Six (Saturday) was amazing and I felt really (kinda bizarre) good and ended up over-doing it and spent most of the day outside, on the deck and hangn’ with Brandon outside in the garage while he was doing some BBQn’.  What a day!!  I was so happy to be home with family and being taken care of by Teresa, my dad and Brandon.

Day Seven (Sunday) was only day two at home and I definitely felt the pain as a result of the previous days activities.  So, I decided to hang out and pretty much do nothing.  Teresa got me Perkins chicken and rice and once again, received top notch care, on-time medications and constant follow-ups (every three hours) with vitals and everything.

Day Eight (Monday) and [day three of being at home] meant I spent an unbelievable 11 hours outside hangn’ out, doing breathing exercises, watching YouTube videos, listening to podcasts and then getting some work done …damn near killed me.  LoL.  Did I not learn anything about my first day at home??  Idiot…..LoL

Anywho, I am feeling better, then terrible, then great and back into hell again.  Can you guess why this is?  Yup, the pain meds allow me to remain comfortable and heal up quickly and when they wear off, the reality of what I went through sets in quickly and unmercifully.  I never thought a lung removal could hurt this bad but yeah, it’s not something you wanna go through but hey, again, I’m alive so……..it’s ALL worth it in the end.

So, I am gonna take a couple days (yeah right – we’ll see) off and just relax and heal-up a bit and then see how I feel this weekend.  Thanks again for ALL your love and support, it’s appreciated more than you know. 

And don’t get me wrong, there were good healthcare providers too, not just that jackasses who I had to deal with and I also TOTALLY get it, people are stressed out, overworked, underpaid and have to deal with the whole covid thing as well but still, it’s not an excuse to treat cancer patients who may just die on your watch, with horrible service….there are protocols and alternatives when you’re feeling like you need…….a break.