First, the good news: Chuck is doing very well with his liver transplant. April 29 will mark the one year anniversary of his transplant at the Mayo Clinic. He's showing no signs of rejection, is off 80% of his medications, and his follow up tests and visits show him to be a super star. He's back to photographing birds every morning with my son, even in minus 5 degree weather, so that pretty much says it all. My avatar pics are of his birds.
Now for the bad news: I've mentioned before having a surface melanoma on my arm removed in October of 2021. An "in situ" mole of no consequence where all the melanoma 'was removed successfully'. This was a result of having a dozen beauty marks on both arms blow up like balloons after the 2nd Covid shot, grow scabs on them, and when the scab fell off, the beauty mark disappeared entirely. Except for the one. And all of it was not successfully removed after all, as a few cells must've escaped into my body and caused metastatic stage 4 cancer in my lymph nodes, liver, and bones. I went to the ER 3 weeks ago for excruciating pain in my left side where a CT scan with contrast was ordered. The cancer was discovered at that time, and I've spent the last 2 weeks in testing. The cancer is not in my brain, thank God.
The Oncologist told me there is immunotherapy available now for malignant melanoma. 2 types at once, administered via IV (no port) every 3 weeks x4. That's the goal. To turn on my immune system to kill off this cancer. 50% of immunotherapy patients are alive 2 years later. Idk what the percentage is at the 5 year mark. I've avoided doing research bc I'm overwhelmed enough already.
I'm having tremendous pain in my spine, ribs and liver, where the cancer is the worst. The Oncologist gave me some heavy duty pain meds and told me to wait it out until the IV starts kicking in to relieve my pain. He said I would live less than 2 months without treatment so my first treatment is tomorrow morning. The side effects can be gnarly and these infusions WILL kick my butt, he said. I'm ready, I think. Ain't no beauty mark gonna take ME down at 65! 😑
I'm useless at home, so Chuck is doing everything. Laundry, cooking, grocery shopping, driving to appointments. I have a housekeeper coming in to do the heavy cleaning and my stepson and his wife are cooking 7 dinners for us and bringing them by on Saturday. I have to make sure HE'S not overworked during this treatment process to where he gets sick. He's already overcome with worry and shock over all this as it is. I'll ask my stepson to repeat that meal making plan, too...they want to help & we need help.
We've had a lot to deal with the past year, and now my issues, which were there all along, just not apparent until recently. We wouldn't have been able to handle TWO of us sick at once anyway, so this is how it had to play out, I suppose.
The one bright spot I hold onto here is the dime I found on the floor of the ER room I'd been in ALL DAY where there was no dime on the floor. And when the gal was wheeling me back into the room from the CT scan, there it was. I kicked it across the floor to Chuck and he said, "what's that?" I said, "it's a dime from dad, telling me everything will be alright." He was speechless. Dad used to send me dimes all the time after he died in 2015, but stopped the past few years. I have a whole piggy bank full of them.
We can use all the prayers we can get right now, friends. I believe in prayers, in miracles and in signs from our deceased loved ones that they are with us in tough times. If you do too, please send up some prayers for Chuck and I right now.
Many thanks.
You have helped us all. Our turn to bring you to The Father with earnest petitions.
Big hugs to you! 🤗
37 years ago was his first AFib problem and another 23 years later. They have him in a small unit for heart patients. He was put on a heart monitor where they place those sticky leads all over his chest. They told him if he needed to go to the bathroom care a nurse for a bedpan or urinal thing. Not my dear sweet hubby. When he had to go, he took the leads off, walked down the hall to the bathroom, went, walked back to his bed and put the leads back on. The nurses never knew he had done it.
He is deaf in one ear and getting that way in the other. I make sure the staff is aware of this. Do they tell the next shift, no. He has to wear his hearing aid while he is sleeping because they come in thru the night and ask him questions. Next time he is in the hospital, I am bringing in a sign that says "THIS MAN IS DEAF!' and tape it on his wall behind his head.
((HUG)) and...have a Blessed Day.💞
37 years ago was his first AFib problem and another 23 years later. They have him in a small unit for heart patients. He was put on a heart monitor where they place those sticky leads all over his chest. They told him if he needed to go to the bathroom care a nurse for a bedpan or urinal thing. Not my dear sweet hubby. When he had to go, he took the leads off, walked down the hall to the bathroom, went, walked back to his bed and put the leads back on. The nurses never knew he had done it.
He is deaf in one ear and getting that way in the other. I make sure the staff is aware of this. Do they tell the next shift, no. He has to wear his hearing aid while he is sleeping because they come in thru the night and ask him questions. Next time he is in the hospital, I am bringing in a sign that says "THIS MAN IS DEAF!' and tape it on his wall behind his head.
((HUG)) and...have a Blessed Day.💞
If we take up a go-fund-me to get a chainsaw out to you for the burritos you might consider using it on some of the staff. I used to tell patients that when they needed help and we were so short staffed we couldn't get there, then a thrown metal urinal (full) blasted out the door onto the tile walls and floors would work. Don't suppose you HAVE a urinal, tho, metal or otherwise.
I don't suppose in all of this it is worth asking if they have any idea the why of what you are experiencing? That is, have any tests or scans given any answers other than the small strokes?
I sure am hoping this is a better day.
That Chuck. He is amazing. But when you were there for HIM, so were you. N. and I have teased one another that we're at our best when we are in the hospital situation for one another. We laugh and chat and there is just nothing in the world but one another, whereas in normal every day we are sometimes ships passing in the night as we go about our daily lives.
With all that's going on you gave us a ton of updates. To my mind that means you are strong enough to do that, or that you are so MAD you are strong!
I am hoping for a good day. Thank you so much for keeping us so up to date, Lea. Wish I could loan you my massive veins. I used to walk hand in hand with my dad as a kid and study his beautiful arms and hands, all ropey with veins. I always wanted them. And I got them. Didn't know then that girls perhaps should not have a roadmap of veins bulging on their arms. The phlebotomists LOVE me. In school everyone wanted to be my practice partner in IV insertion and blood draws. Just as everyone wants to sit on the side I pass with cards. They are sure to win.
It reminds me of the cynical joke: "What do you call the person who graduated last in his medical school class? Doctor."
"God threw me a huge bone..." When I'm feeling beggy and desperate that is the exact phrase I use. Scripture says we don't have to ever beg God but in our human-ness many times it sure is hard to wait on His answers. So glad you were sent an angel.
Praying you have a good day today (((hug))) !
It's unbelievable that this nonsense goes on in all hospitals not just yours and that they're able to charge a fortune for their nonsense and incompetence.
I am so sorry that you and Chuck are having to deal with all this when you deserve SO much better.
I'm praying that today will be a much better day all the way around.
Hope, miscommunication is the issue here along with a computer system that uses only black and white and nonsensical charting w symbols and was scrapped decades ago. There will be no more breakfast burrito for me. The innards were good but the tortilla was shoeleather. Chuck brought Cheesecake Factory slices for lunch but dinner here was good. A build your own pita. I'm not offended that you laughed....its a comedy show here. Remind me never to tell the old man i crave something bc then he goes berserk and i had SUCH heartburn from that half a slab of pure fat i ate. Then he was trying to push more on me and i had to bring out Lea Light again and tell him to eat it himself or throw the damn thing out 😁😂🤣
Thanks Pam,,, I fully respect nurses, but this was a chit show till tonight. For Ariana to come up w a plan to help me that was successful means I'm nominating her for a Daisy. I am fair and complain/advocate when necessary, but praise when it's warranted. I did the same for a decade on behalf of my parents w no regrets.
Here it is 110am and I am wide awake watching American Pickers and typing on my tablet 😎
Good thing you brought your East Coast moxie to the party.
I have great sympathy for hospital staff, but I am always amazed at the bumbling. Almost every time I or one of my people have been in the hospital, I have had to ride herd and double check *everything*. It is almost always communication gaps or interdepartmental arrogance that is the culprit.
Tomorrow morning, when they deliver your brick of a breakfast burrito, throw it at them while you yell “Olé” really loud. Maybe have Chuck bring a nice sombrero. That should teach ‘em:D
J/S
Im done. Please God don't kill me w incompetence here.
No idea when I'm going home, not till I cam walk,...and the right antibiotic is given to me IF they can find someone who can put an IV in me.
😁
Nope, can't make this chit up! I'm sue I'm The Bad Patient now for trying to advocate for myself. Tough titties. I'm here to get well and not be killed in the care or lack of being provided. I did rein myself in though bc I wanted to tell the nurse to set a timer next time she has to use the bathroom for 40 min and just hold it in for that time. What if I'd had to poop? Shudder
Geeeez, sounds incredibly frustrating! I hope that you will start to feel better soon.
Ay yi yi 🙄
Then I told them 2x I have a fever. Finally the CNA begrudging took my temp and said "it's 37.5" and was walking out. I said what's that in Fahrenheit which is not a ridiculous question. Oh she didnt know! I asked her to PLEASE find out and she barked back 99.5. Meanwhile my face is beet red and my back skin was on fire. My norm is 97.5. Holy cow, now they're trying to force Tylenol on me insisting ibuprofen is not in the MARS!
Chuck was purple when he left here.
But the good news prevails.
I was left to wait 38 minutes to go pee. Nobody came to get me off so Chuck did. I'm having a horrendous day with fevers, brain zaps and vertigo today. The super rude CNA blew my IV with a TON of saline and hmm, since I have SMALL VEINS they just don't know who can put in a new one. Sounds like maybe Mr Kimball or the pet pig Arnold from Green Acres? My leg pumps pissed out at 730 am and I've been asking for new ones, with no luck at 6pm. Just a few honorable mentions. But the piece de resistance was the doctor saying no problem for 2 days to my needed Omaprezole and come to find THE GREEN ACRES PHARMACY DOESN'T CARRY IT! The nurse told Chuck to GO BUY HIS OWN AT CVS! THAT WAS the last straw. Chuck went to find the charge nurse who I unleashed Lea Light on. SHE said he never shouldve never been told to go to CVS! Within 15 min the leg pumps were back on and shed have a talk w the staff.
Good news is when the 3 docs came in and one said cancer causes strokes, not treatment, I nicely ask them to PLEASE PULL UP AND COMPARE ALL MY BRAIN MRIs to see WHEN these strokes first appeared in history. They obliged.
THE ANSWER IS.......2018! I almost cried I was so relieved! Although why tell me NOW for the first time EVER about 5yr old plus strokes????
I think the only thing that got me through the confusion and worry of my breast cancer all those 35+ years ago was laughter. I had the most IRREVERANT friends. When I went in for my biopsy under the arm my best girlfriend, who worked with me, said "OK I will drive to work so I can bring you home in the car after you wake up" and my friend Roger said "Oh, no, I am going to drive so I can bring her back" and N. was there, my partner, and said "Don't be silly; I will be there all day with my car, and she's coming home with me". At that point Roger shrugged and said "OK, we will ALL drive, we will ALL bring her back. With the lights on. And driving slow". He meant, of course, the funeral cortege. We laughed until we cried.
What I found when I was sick is that the reality of it was so different than the fears I had had as I read my patient's charts for so many decades. You are just so busy. And you can't be afraid 24/7. Between being afraid and not being afraid, real life keeps happening. You can't BLOCK the fear or it hunts you. But you can't stay afraid, either. Life just won't let you. There's still all the beauty and all the angst. All the love and some not-love, too.
And constipation, as well!
I just saw my friend out at the end of last year. She KNEW she was going, had opted for no treatment; but she was on Etsy shopping for Christmas stuff as the Hospice folk came and went! And we laughed. We had so much laughter.
I am such a somber, thoughtful, and mirthless creature. I NEED fun in my life and I sure love those who have brought it to me.
Sorry about those shots!
And, I’m praying right now, for the miracle of a restful night in that hospital! 😘
That is one of my all time favorite movies! You have excellent taste in films. Every movie that you have posted about I love!
Lea,
Breakfast burritos are great! So much better than Jello! LOL 😆
I love your red hair! So pretty. Cute style too!
I am too wordy to get any votes on the site. I always envy your cut-through-it-quick-Dr. Laura-style. Whenever I have to write some semi-legal thing I take it to N. and he says "cut it back" and I do so, and return with it and he says "cut it down" and I do so, and so on for about 3 tries. When I saw the film A River Runs Through It I was so taken that the Dad, who had an author-to-be son, and kept saying to him "make it shorter and bring it back" over and over again when he was in school. I THINK that was the film, anyway, but--you know--the AGE thing?
I am a breakfast burrito kid, myself of leftover Hunan Chinese or Thai. I am glad the food is good. I so looked forward to it when hospitalized, as it was about all that cut up the day.
Alva, no jello for me, I'm more of a breakfast burrito type myself. This hospital has good and modern food which is unusual, we all know YOU are the #1 advice woman/guru here, not me. Age (lol) and a lifetime career of nursing gives you the leading edge on me 😂😁🤣 with an emphasis on the age factor. Tee hee.
Had to get oxygen cannula last night bc my saturation stats fell to the mid 80s 😑. Feeling like I'll be coming home w permanent orders for night oxygen. Set up w heart monitor looking for afib which would warrant blood thinners. O/w Plavix and something else is the protocol for stroke aftercare/prevention. 10 shots of Lovonox injections in the belly is ongoing as a blood thinner for being bedbound. They dont hurt much at all.