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.
Lea, Cher has titanium boobs. Likely a whole bunch of them. Switches em out like earrings.
Welp, whatEVER was in that danged infusion, you are even more spot on, honest and steady than you EVER were before; wouldn't have thought that possible. I so love how you put things, about what we wouldn't consider before and what we will consider WHEN. Because that's the god's truth for certain.
OMG I feel almost tragically sorry for the hairdresser. Imagine being sooooo distraught that you cannot talk with someone honestly to ask about all this. Just to ask, to say something. It is sad, sad so sad, and so her loss, but as well your own. People like your Sis can sink into a deep denial as well, just don't look at rit and it isn't there. Don't look under the bed.
It's all so true. All you say. And I think anyone reading this thread knows why being a nurse was so my privilege for my entire life. Patients would share an intimacy with you they could not share with their families. That the families sometimes could simply not hear.
Rest up Lea. Just some days of rest now. I so hope this makes you feel better fast.
Some people handle bad news awkwardly at best. I could bet my family would be similar. We were taught early on in my family that pretending something is not happening is the way to handle things. When my Dad died my mom chose not to talk about it and told four year old me that he'd gone to Heaven. I don't think I even knew he had cancer. When my older brother died same thing. That night after leaving the hospital where we paid our last respects I burst into tears. Natural reaction you would think but my sibs looked like they wanted to crawl under a rug.
Anyhow, I'm glad you feel supported on here. I think of you every day and pray for you. Glad the black spots are gone. I hope the rest of your day is as peace filled and painless and dizzyless as it can be.
Such a testament to how much you have helped us all-not just with our aging loved ones, but how you have shared your wisdom that have helped us better HUMANS.
Praying for your appointment tomorrow. For stamina for you, and wisdom for your neurologist.
🤗🤗🤗🤗🤗
It's not often one will pair a quote from Hunter S. Thompsom with scripture, but my son reminded me of this one yesterday and I'm fond of it and it somehow makes me think of you, LL (maybe because you seem to be a ballsy, take-no-hostages kind of chick). When I read it to myself I read it from a believer's viewpoint.
“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming 'Wow! What a Ride!' "
- Hunter S. Thompson, "The Proud Highway: Saga of a Desperate Southern Gentleman"
and...
"You’ve all been to the stadium and seen the athletes race. Everyone runs; one wins. Run to win. All good athletes train hard. They do it for a gold medal that tarnishes and fades. You’re after one that’s gold eternally. I don’t know about you, but I’m running hard for the finish line. I’m giving it everything I’ve got. No lazy living for me! I’m staying alert and in top condition. I’m not going to get caught napping, telling everyone else all about it and then missing out myself."
-1 Corinthians 9:24-27 (The Message)
LL, keep running the good race! Don't give up...we are all rooting for you every moment!
This verse doesn't mean that we don't ever feel fear, but that we shouldn't give in to the fear.
We can be thankful we have Scriptures to meditate on when we feel afraid. God's promises strengthen us to keep pressing forward no matter how we feel.
The Word of God will give you the faith you need to overcome any feelings of fear.
Praying for only Gods peace and strength to be with you as you continue on this journey.
I totally agree with Funky’s last statement. God is the only one who can bring us peace in the midst of turmoil.
I know that God is beside you during all of this and will continue to be with you and your family.
As always, sending love, hugs and prayers your way 💗💗💗.
At 320 I speak w the neurologist and I'd like HIS opinion on all this before believing it's "just immunotherapy related but we've never seen it before and have no idea if/when it's going away." Wtf? 😑
Then I'm done w the rollercoaster. I can't risk "another bag" or further screwing up my body in an effort to prolong my life. I've seen my body shut down before, years ago, due to too many allergens attacking me at once. It required a move, steroids long term, and truly an act of God to get me back to good. And I was in my 30s then. Ive had my chance w immunotherapy and took the risk. It'll be what it'll be, in God's hands as always.
I'd rather live what's left of my life in peace and quiet than like this. Idk about Hunter Thompson's quote Geaton. But I do know I don't want to arrive at my final destination so brain dead I wasn't able to function at all on the ride to get there.
If the Big Guy has other plans for me, I'm all ears.
I'll update after The Phone Call just in case this neurologist gives a flying fig
Yeah no shi-t that was abundantly clear fron your bodies reaction to the second immune therapy treatment.
Then basically making you feel like he was basically done with you. He needs a crack on his backside with a whip for that one.
I agree with you that quality of life at this point is better than quantity.
Hopefully the skyrizzi side effects will subside soon for you once it works out if your system. Bentonite clay may help as it binds to toxins and gets rid of them from the body similar to taking charcoal supplements.
I stand with you in any decision you make now. Will await whatever your neuro says. I hope that SOMEwhere-- when and if the moment comes-- that someone will have the simple courage and decency to say that they are sorry, but things are beyond their knowledge. Because that's the truth. And they owe you the truth to tell you when they have no answers any more. I Am in agreement with you that at some point you need peace and love and a stop to the things that make you worse. I have seen people live LONGER than expected because of that decision.
I know that you know we are with you in any way we can be, and look in here over and over again to see how you are doing. I thank you for your bravery in getting here to update us when you feel like chit.
Loving arms around you, my woman.
As others who have posted after your update, I agree that quality over quantity is what matters the most.
Most people feel like you are feeling at this point in time.
They would rather get off of the emotional roller coaster of the ups and downs or the merry go rounds of going around in endless circles.
Wishing you peace as you continue on this difficult journey.
I have an appointment Mon to see the Opthamologist about the flashing lights and floaters in one eye. Looking for torn retina possibility. Already better after DD talked me into going back up to 60 mg prednisone. I will go to the ER if this gets worse. A different ER 😁
Annnnd.....Dd was livid at Dr Cs b.s behavior today and called University Hospital Cancer Center at Anschutz to schedule me w a highly regarded female melanoma specialist who Kaiser will pay for. They have 10 clinical trials going on right now that may include the new CAR-T therapy where your own T cells are removed, weaponized, and put back into your body to kill cancer. It's worth a look see AND a second opinion not tarnished by the wise-assed cracks NOBODY needs from an ego driven "little b-tch" yessiree sp. Even if Kaiser quibbles over the fee I MAY STILL go see this doc and screw it all and the horse Dr C rode in on. I'd like to see HIM handle giant wasps, spiders and flashing laser lights in HIS eye and hear his doc laugh at him. Yep I'm pissed but called to action now. I have TWO appointments scheduled in April now......guess who's getting fired? 😂🤣 If you guessed his name starts with a D and ends with a C ....ding ding you WIN!
I'll stop treatments if and when it's indicated to do so based on some SCIENCE and after a thorough neurological workup but not BEFORE.
I feel like a 10 lb anchor has been lifted from my ankle simply bc SOMEONE'S FINALLY HEARD ME!
Its disgusting it took THIS LONG TO be heard! Thank you all for urging me on to do this today, the neurologist JUMPED on it like a true pro.
What an ordeal! Glad that you have a plan in the works.
My brother has all sorts of eye issues. He ended up having to see a specialist. You may have to be seen by a specialist too.
His issues were with holes in his retina. I suppose that you could look up the symptoms of retinal issues online.
I'm So Happy to read your message just now...and I pray your updates continue to get better and better!!
Wishing you a very peaceful and relaxing weekend and sending tons of love!
XO
Bandy, the hospital and my oncologist may have failed me, and maybe they're all RIGHT, that it's the immunotherapy that's doing this damage to me. Idk. But what I DO KNOW is y'all haven't failed me and i haven't failed myself and God hasn't left me alone in all this chit. And now I'm even MORE determined to advocate for myself and be HEARD even by those who don't want to hear me. TOUGH. God gave me a voice and a mind that still works! So hear hear!
GG, methinks a tough cookie is better than a tough tortilla. Wink wink.
CxColleen, I too am amazed at the outpouring of love, caring and good info shared w me here. I would NOT have rescheduled that Neuro appt had you not all been hounding me. I was like ALRIGHT ALREADY. No matter how this turns out w the Neuro, to see the look on chucks face when he said OH THIS IS TERRIBLE THEY DIDN'T DO AN IMMEDIATE NEURO WORKUP ON YOU FIRST THING in the hospital was worth it. To watch him see me NOT give up entirely from total exhaustion and misery is worth a million bucks. Social media is wonderful when used in a positive way.
Pecan, you said "The only thing he said I could share with you is his recommendation to DEFER TO THE PROFESSIONAL". Thank you for that. And for having him look over the document sp kindly provided.
Love to all this evening.
I was getting worried about steroid rage. I was thinking you were channeling James Mason in that awful movie--1956 and actually called "Bigger Than Life". How DID they pick that name for that particular film?
See you in the morning, woman. As my dad used to say, "Sleep tight. Don't let the bedbugs bite". (He told me that in 1910 Chicago tenements he and his buddies used to race them on saucers. Do you think that could have been the truth?)
(I am here to try to make you LAUGH, not cry)
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!
🤗🤗🤗🤗🤗
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.
I'm so happy and relieved for you Lea. I hope today is
the first day of many days full of good news.
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.
Weird.
(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.