
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.
A portion of my Sunday post has disappeared. In it I said the ONLY Higher Power who can heal miraculously is God who created the universe along with all mankind, and it is to Him alone who who I offer sincere prayers on your behalf. I will continue to do so without posting further.
May the Lord's blessings be upon you to bring peace, health, wholeness, healing and eradication of all ailments, afflictions, pain and distress of body and soul, In the mighty name of Jesus I pray, Amen.
A portion of my Sunday a.m. post has disappeared. In it I said the ONLY Higher Power who provides complete healing is God, Creator of the universe and all mankind, and it is to Him alone who I offer sincere prayers on your behalf. I will continue to do so without posting further.
May the Lord grant you peace, health, wholeness, healing and eradication of all pain, suffering, illness and distress of body and soul, In the mighty name of Jesus, I pray. Amen
Always wishing you great strength and very positive results today!!
The scripture below is to give thanks IN all things, not FOR all things. I have found it a very powerful way to pray. And while giving thanks IN whatever storm I am in I also look for small or big things to give thanks FOR - even a blue sky, or a small flower, or my next breath...
Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus. 1 Thessalonians 5:16-18
With you in spirit and (((((((hugs))))))
"This too shall pass"......lets hope that's true. I'm hopeful to have this miserable run w vestibular/cns chaos pass wi the next 4 weeks or so. That is my prayer anyway, coming up on the 8 week mark.
Ty hope and bundle. Llama, nothing you say to me sounds trite, but loving and much appreciated. 😍
Golden, I hear you. Some days we have to rejoice in very small things or get lost in the weeds of the disaster du jour.
Prepping to shower now. Never did I think a shower would be THIS much of a chit show! I'm ready to sleep for hours afterward, literally. I'm also feeling extreme fatigue the past 2 days which is actually a GOOD thing after being so Super-charged and unable to sleep at ALL the past 5 weeks. It feels heavenly TO sleep and fall back to sleep at 4am when normally I'd have been up for the day.
The withdrawal symptoms have eased up a bit yesterday, thank God. Thurs I go down from 70 to 60mg for a week.
I'll be back later to update after the UC Health appointment. We're going
to see my 6 yo grandson afterward who lives 1 mile away from the Anchutz campus. That's the plan, anyway. Unless I'm falling apart even more than usual or having some horrible crying jag or or or...😂🤣😁
IIn the car now. Feeling hopeful but leery at the same time. Dr M is great, I like her a lot.
I'll check in later
It is good you found a doctor who will do the right thing for you.
Be encouraged!
He also said he felt a difference almost immediately after the first infusion, and he always felt better after each subsequent infusion.
He has had no bad side effects from the infusions whatsoever. And in the course of the many years of seeing this neurologist he's had about 40 treatments in total, but his autoimmune is very aggressive. The neurologist originally told him most of his patients undergoing IVIG see vast improvement after only 3-4 infusions. But he hasn't had to have a treatment in about 3 years, and he's still considered "stable".
I hope it gives you great results like it has my husband, Lea! They will probably infuse it very, very slowly, otherwise it can give you a massive headache, which is why I imagine they are doing it while you are in the hospital.
Good luck!
The oncologist says what you did.... good results fairly soon but I may have to keep up with the ivs monthly for awhile.
As always, I am hoping for the very best outcome for you.
Sending all my love to you.
I pray that you turn the corner quickly and can report here feeling much better!
Big hugs to you, LL!
Lord, be gracious to us;
we long for you.
Be our strength every morning,
our salvation in time of distress.
Isaiah 33:2
May God bless you and keep you. May He make His face shine upon you and give you His peace.
Apparently there's a sucker born every minute.
Probably acupuncture may also have its benefits - there's been clinical studies done on this too.
You've come such a long way since first diagnosed ...I hope you continue to make great improvements and advances forward!
https://www.google.com/url?esrc=s&q=&rct=j&sa=U&url=https://alignwc.com/acupressure-for-vertigo-relief-3-pressure-points-try/&ved=2ahUKEwj7mZmHprb-AhW4MlkFHdHKAyYQFnoECAAQAw&usg=AOvVaw03yY8l7-mcRoMSHb9ASukc
Hope, Sea Bands address nausea specifically which is not a real issue for me. Plus, it's imperative those metal buttons stay pressed right up in between the tendons on the wrist at a certain spot at all times, which in unrealistic imo. It's also unrealistic for me to think any device I order online is going to give me relief after 8 weeks of being THIS sick, who am I kidding?
I want to read your review of the bracelet that you tried. I know that you wouldn’t leave out the part about returning it because it did nothing at all.
I hope you feel better soon.
Throw a little glitter in today’s face
She’s bright like glitter and bubbly like champagne.
I quite like sequins. I think it’s the drag queen in me. – Sienna Miller
Don’t let the insecurities of others dull your sparkle.
Too glam to give a damn.