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.
Now it looks like you are going to a triathalon, and loaded down with the queen's jewels on top of it.
It is so very good to hear of this very good day for you.
I honestly think that there is so much strength and healing in just days without bombardment of testing and treatment.
Your grandson sounds adorable! I’m sure that he was thrilled to see you.
When my oldest daughter was very young and wasn’t able understand the concept of time, I couldn’t tell her that grandma was coming over in a little while.
If grandma didn’t show up immediately she would start crying and begging to see her.
I had to say things like, at the end of Sesame Street grandma will be here. Or not tell her until I saw the car pulling into my driveway.
I am so glad that you were able to see your precious grandchild. I bet that he loved all of the sparkle and glam!
A FEW TIMES!!!
Such good news!!
My grandson was all laughter and light today, truly a gift to revive me He ate 5 meals in a 3 hr period not including a huge breakfast out! I suggested mom get him a growth chart bc oop, here it comes....a GROWTH SPURT 😂🤣
Cxm........ty. I did a few sets of 30 steps today holding the walker up! Yahoooooo!!
NHWM....I put ON another piece of jewelry today for my grandson who expects to see me wearing a long blingy necklace and rings whenever he sees me. Loves it all. I even put on a long silver sweater cardigan w sequins here and there to complete the look. He was blinded by the bling 🤣😂
I thank you for your help, your cheering me on, your adamant refusal to shrink back from the reality here, while focusing on the miracles that ARE happening in spite of the setbacks. And reminding me that God has my back.
As I've said and will continue to say, AIN'T NO EFFIN BEAUTY MARK GONNA BRING ME DOWN! 😁😘😙😚
This event is part of my journey for some reason, and I accept the challenge. It won't be w/o crying jags, meltdowns, getting super ticked off at docs who show little compassion, w/o sleepless nights second guessing myself and each decision I've made thus far, though. That too is part of my journey and I'd like to think something positive will rise up out of this chaos one day and that dime I originally found on the floor of the ER back in Jan will have been the miraculous good luck charm I saw it as.
Have a wonderful time with your grandson. He is blessed to have you as his grandma!
I know that you will look lovely with your estate sale accessories completing your outfit.
My daughters always commented on how stylish my mother dressed. She loved her accessories too.
Often times, my mom was way more stylish than I was. I was too exhausted to care about being stylish.
So glad that you were able to take a short stroll with your walker.
Have a beautiful day, Lea.
The 3 of us, me Chuck and all the floaters are getting dressed and Faking it Till We Feel it by going to see our 2 yo grandson shortly. I will even wear a few pieces of my ridiculously enormous jewelry collection ( mostly costume from years of estate sales) and NOT remove 1 piece before taking off! Who suggested such nonsense anyway, Coco Chanel?
If my grandson is in a screeching mood, my hearing loss will come in handy. God doesn't give us more than we can handle, right? 😁
I hope you all have a beautiful spring day today and that I have more good things to share later on.
"The Lord bless you and keep you;
the Lord make his face to shine upon you and be gracious to you;
the Lord lift up his countenance upon you and give you peace.'
- Numbers 6:24-26
Good morning LL, I surely hope it is a good morning for you!
Honestly, I think with all the commotion last week.............
You had your hair appt the day you first posted this, next day was the big appointment with Dr C. Then the very disturbing new vision issue...w/ spiders, black spots & flashing lights, which followed the 3 hr Skyrizi infusion Thurs which Dr C recommended. Friday had him cruelly laughing at you and you ready to give up... Then the positive neurologist appt later that day, along with info from DD's call to Anschutz CC & an appt there).
............. THAT WAS A LOT between Wed afternoon & Fri afternoon!!
In the midst of all that, I think your phenomenal news of no pain last wk may have gotten buried in the thread by everything that followed. It's possible that only a few picked up on that and the GIGANTIC IMPLICATIONS of you having NO MORE PAIN!
I have been holding my breath,..and continuing to pray...and hope beyond hope that God has shown His mighty power here and a MIRACLE has happened!!
I so wish you could get a new PET Scan to check on this right away. But one step at a time I guess. So I will continue holding my breath, as I'm sure you are too, for what this means.
CLEARLY IT MEANS SOMETHING GOOD THOUGH! You were suffering something awful from very-intense cancer pain in multiple locations. Now, except that one "hole in your back" spot, where your Wed post said you slightly still feel something... But NOT ENOUGH to even need pain meds! Because the pain is gone! Disappeared.
Thank-you Lord, thank-you, thank-you, thank-you!
My dear father had 20 or more eye surgeries for glaucoma and endured each one even WITH my mother going berserk next to him. Stupid how SHE needed the Xanax while HE was being stuck w needles in his eye. He never lost vision or had bad side effects from those surgeries so wishing N the best of luck with his procedures.
LP hasn't been scheduled yet,,,,,referral wasn't in the system by 5 pm on Fri so I'll call Monday.
Alas. I hear WAY more than I want to, so no hearing aids for me!
Glad you are up to such a long update this a.m. Lea, and am so struck by the fact that you now hear all about brain zaps and taps, but NOT hearing you mention pains.
To me that has to mean something? Maybe I am just choosing hope.
Mr. N. goes on Wed. for eye "procedure"--read bubble inserted with a NEEDLE into the eye. Another small retinal tear. His last was decades ago, and quite large. Not much I can do about any of this but sit with it and think of horror shows involving eyes, a true phobia for me. They can mess with anything on me, needle me to death, but NOT MY EYES.
As to lumbar puncture, yours is being done so they aren't going to be fishing around for the right spot. Do try to take in fluid after as it will help with the headache. Stay flat long as they tell you and then some if you can tolerate it. You CAN ask for a pre med or pre procedure sedative; I would, myself. Snow yourself and sleep it off. Remind me again what day the LP happens?
Good good good to hear from you, and to imagine you tomorrow seeing the grandchild.
Cxm: an interventional radiologist does the lumbar puncture guided by ultrasound so it's better than it once was. Not looking forward to it I will say.
Pecan, I've lost a lot of lengthy posts too and ugh, terribly frustrating. I felt your other post and your BILs words in my heart.....felt You were right about following the Neuro and his guidance. Tests do not always show everything like encephalitis PLUS I have this bad neck stenosis issue that the neurologist was suspicious about. It feels like my head is disconnected from my neck creating a bobble head feeling which COULD be NECK related ergo a neck MRI ordered. Gotta know what's going on for SURE before any further decisions can be made re treatments. This level of adverse and serious reaction is no joke. Plus it appears to me the issues ARE more prevalent in my left brain/eye/head area, including the zaps that still pop up. He asked me specifically and it's just now dawned on me, YES, left side centered. What does that mean? As Dr C would say, " who knows" and who cares..the Neuro cares methinks.
Bandy, I had no time constraints while speaking to the Neuro, he was thorough and I was able to give him a good factual timeline plus he had accessed all my files on Epic that he reviewed prior. I feel he's on it and ordered the Right tests now plus I'm seeing his partner on Thurs.
FG, YES, praise God I am still full of enough piss and vinegar (And crap) to speak up and especially when I feel wronged, even whole addled.
The laser light show is gone from my left eye as of this morning. The spider is still hanging out in front of my eye and irritating the snot out of me. Black floaters persist all over too, so I'm upping my prednisone to 80 WHERE IT SHOULD HAVE BEEN ALL ALONG. We'll see if that makes any difference to the insect parade I'm dealing with.
I always feel pretty good at 2 or 3 am oddly enough. So last night I was actually able to take a few small steps w/o holding onto my walker! I'll take it as progress in the Right direction, ty Jesus. Today it's attempted shower day so I don't stink out my son's house when we go visit my grandson tomorrow, by hook or by crook. That child lights me up when he's not screeching. But hey, I have severe hearing loss for hi pitched sounds so......the Neuro DID say hearing loss (Even w/o eardrum damage) can be VERY hard to recover once it's lost 😑. One day at a time tough, right?
(Ok, this is not scripture but a saying I came upon 40 years ago that I thought so poetically expressed hope and joy...)
"If I keep a green bough in my heart, the singing bird will return."
- attributed to a Chinese proverb
and here's the scripture...
"Rejoice with those who rejoice..."
- Romans 12:15
LL, we are rejoicing with you over the good news and progress! My Mom, the retired RN, has always taught me that you have to be your own advocate when it comes to healthcare. It's a bitter pill to swallow, especially when we pay so much money for health insurance and care.
They were just about to send me into radiology to check for a leak, but
they had given me fluids, and that did the trick.
We got home late from a banquet where my husband received an award for his work. It was a 2.5 hour commute each way! I've been writing you a note about everything that happened...how I had a bad feeling yesterday, how the Lord laid you on my heart, how I didn't understand it but everything I feared for you was confirmed when you wrote about your vision problems Friday. Also how I wanted to hug you and throw a party after reading your good news. But I'll wait for the party when your dizziness is gone. Everything I wrote got lost somehow and I was left with a blank box on my screen. It's far too late now for me to try to start again, plus it's dubious that I could re-create what I wrote. So this summary for now will have to do.
Let us give thanks to our Father in heaven! I know you are very special to Him! The note I lost explained how I knew this and how it connected to what happened on my end Thursday. Maybe I can try again to explain this weekend. I knew it would take the Lord to intervene and change the course. When we got home tonight, I read that began and I believe it will continue! Hallelujah, Praise God!
I'm sorry about the spiders and flashes of light. How can you live with such a thing! Reading that Friday confirmed my bad feeling from Thursday and talking with BIL did that too. But I know God will heal that for you!! Please stay close to the Lord and He will stay close to you. He loves you and he loves Chuck. That I know! On this earth we don't always understand why things happen because His ways are higher than our ways, but we know we can trust Him to walk the road with us.
I'm so happy and relieved for you Lea. I hope today is
the first day of many days full of good news.
I think I need to clarify unless I misunderstood something you wrote which is quite possible. Also this post won't make sense without first reading my last post.
I do think it's the immunotherapy that brought it on. (Not the spiders & lights in your vision which came on after yesterday's treatment). But the dizziness which you first described as wooziness & a just off an amusement park ride feeling. (Starting right after immuno infusion #2)
Of course I'm not a Dr, but when adding that to the revelations in sp's report, my best non-professional guess is IT IS is attributable to the cancer treatment & no one previously treated the brain inflammation (which may or may not qualify as encephalites) correctly! You previously mentioned inflammation, but I never considered AT ALL that you "could" have encephalitis. Until this wk when sp posted that word (encephalitis... a word I'd never miss due my experience w/ it).
It never hurts to rule everything else out, in fact the protocols all call for this to be done. So the vision tests & other things he mentioned are certainly in order and likely even a requirement for him to consider.
The first time I talk to a new doc it's usually a nightmare for me due to time constraints for explaining a complicated history. I assume some degree of that was in play today b/c there was A LOT, a real LOT, for the neuro to get up to speed on. So I don't know how in depth certain things were discussed, but what I do know is you feel good about it and today has ended with a new direction & much hope!
Oh, and one more good thing...No more wasted breath with calls to Dr C's UNHELPFUL NURSE! :-)
It's completely asinine what the medical system has put you through so far, and so unbelievable. It has made all us us reading your posts want to scream for you.
I'm glad that you still have enough piss and vinegar left in you to set these fools straight. They apparently don't know who they're messing with.
It truly is a shame though that you've had to go through all this in the shape you're in, but maybe just maybe, it will make things better for the next person in a similar situation.
You continue to inspire us all and we pray for continued strength for you to carry on in the fight of and for your life.
I hope you can sleep much better tonight with that heavy weight now off your shoulders and ankle.
God bless you and sweet dreams.
Praising God with you for that neurologist. Thank you, thank you, God.
I don’t know about the theology of this, but I sure do think it’s sinful how doctors can laugh at us and dismiss us and give up on us. AND somehow I don’t think that a man would get laughed at and dismissed the way that you (and other women) were.
Okay. I shall get off my soapbox, and will go back to thanking God for the blessing of this good doc that you saw today!
Thank you, thank you Lord.
From the minute I saw sp's report and read encephalites was a known adverse reaction to your immunotherapy drugs, I knew the hospital & Dr C's office had blown it. Because as someone who suffered permanent damage as a result of encephalitis (when at first it wasn't dx'd or treated w steroids), I'm well aware of how very serious & even life threatening encephalitis can be.
The hospital told you all was well and you didn't have that, yet at the same time no one there evvvver heard of brain-zaps or half the things you were experiencing! I didn't realize until after your discharge that a neurologist was never brought in at the hospital. Shocking! Since the dizziness came on after your last immunotherapy treatment!...AND as your neuro said today, "THIS IS TERRIBLE THEY DIDN'T DO AN IMMEDIATE NEURO WORKUP ON YOU FIRST THING"
I am just SO HAPPY ABOUT TODAY'S NEWS & that YOU WERE HEARD! I believe this is a response to prayer by so many here!!! (And even fasting by pecan & hubs.)
Pecan's post about that,..w/out expressing anything further her BIL said, led me think Dr C had blown it & her Dr. BIL poss knew that. In fact after reading Pecan's lengthy post last night,..(hey pecan, I thought I had the market cornered on long posts, Lol ),..I kept thinking if only the neuro appt had been before Dr C yesterday.
I'm so happy Lea that you feel revived! (in spirit if not in resolution of dizziness yet).
I don't imagine the sudden spiders & light flashes in your vision are as a result of sudden retina damage which just happened to occur yesterday. I could be wrong...This is just my opinion & I'm not a doc! It seems more likely TO ME that it's a result of that treatment yesterday ON TOP OF potential encephalitis! (It doesn't hurt to rule things out though & to know for sure what it's NOT!)
If your neurologist read & familiarized himself w the findings in sp's report, I wonder if it's a possibility for you to ask him about the case study where dizziness/encephalites was resolved within just 3 or 4 days with IV treatment (if I recall correctly). Would that be an option for you to try?
If so, I'd love it if your suffering could be PROMPTLY halted, and you could quicly move on to decisions about what's next to address the cancer now. ESPECIALLY with ALL THE GOOD NEWS that came out of your DD's call to Anschutz Cancer Ctr today!!
If you've posted anything further while I've been typing this (which often happens when it takes me awhile to make sure what I wrote makes any sense), then I'll read it now Lea.
Let's all thank God for today's good news!
Love back to you, my friend.