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.
my problem was that I don't HAVE a smart phone. So, no digital coupon for my jitterbug. So I go to the customer service line and wait with my complaint and they tell me "Just tell your cashier that I said to give you the price" . And the cashier told me "NO!" That is for digital. You have to use digital. I whip out my little red jitterbug and I say "But she said....." and she argued with me some more. I told her then I was staying in that line until my ice cream melted and my corned beef went bad, so she then sauntered over to customer service, and now the customer service woman came back with her and said "It is the wrong KIND of corned beef anyway" .....and I said "REALLY.......??? You have WORSE corned beef tucked away hidden somewhere than signature.? I says it is signature on sale and that is what I have." She threw her eyes heavenward and gave me the price. I said "Sorry, but you would try to charge some OLD WOMAN more because she cannot afford nor know how to use a smart phone???? " (I know. I lied. ) At least about being able to afford one, anyway; those jitterbugs cost about as much as a big girl phone).
By now the line is pretty happy, having fun. Despite having had to wait in line a long time I kind of felt like it was another academy award worthy performance. Wanted to take a bow. Wanted a good gown like Jamie Lee.
I kind of think I took my frustration about all Lea's going through out on the Safeway Cashier.
No worries Alva I'm home! Feeling like the last rose of summer, hacking up a lung, dizzy as hell, but HOME! The wheelchair ride in the hospital felt like Mr Toads Wild Ride. The car ride not much better but I forced myself to not lean my head back but to feel the bumps of the road.
Honey was licking my face furiously for a solid 10 min, whimpering and wagging her tail.
Awaiting the oxygen concentrator now due to arrive in 2 hours. Meaning tomorrow afternoon, most likely. Now post Covid, an employee break is required.....30 min off for every hour on the job.
Hearing about your reunion with your sweet pooch brought a smile to my face 😊. She knows who loves her! Dogs are so smart and intuitive!
I am guessing that Honey is just a tad bit spoiled by you and Chuck, huh? It’s hard not to spoil them a little bit. My husband and I are enjoying our daughter’s pooch. He is a sweetheart.
So happy that you are home again.
I would buy Lea’s book! She just needs a publisher, right? List it on Amazon and place it in all of the major retailers and it could be a bestseller!
Okay, Lea? What do you think? We all know that you have a book inside of you!
I'm glad you are home and I hope you are able to rest better in your own bed and your chair.
That your oncologist couldn't contact you while you were in the hospital (I did read that right, didn't I?) is nuts. My bil has been in the hospital since Jan. 19 after getting covid and his oncologist has been in to see him at least once a week. And he has been advocating for him for post-hospital LTACH. (Unfortunately he was not successful, no beds could be found, and bil was transferred yesterday to an LTACH ninety minutes away from home.)
I continue to pray for you. And yes, you could write a book. There aren't enough people telling the story from your side. And you are very readable!
As for AlvaDeer and the digital coupons -- Do you know that there is a class action lawsuit about this? The point is that digital coupons discriminate against the elderly who can't use a smart phone and those with low incomes who don't have access to smart phones and force them to have to pay higher prices. Your frustration is real! A solution being offered is for the store to offer a printout at the desk for anyone who asks of all the digital savings available that week. The other option is to just link all the coupons to our loyalty cards so we don't have to look through hundreds of digital coupons every week. I know I'd like that option.
Bandy, I hope your outpatient surgery went well and you'll be back posting again soon.
Once again one of my devotions this morning I couldn't help but think of you.
The Bible verse is Isaiah 43:2 ESV....."When you pass through the waters, I will be with you; and through the rivers, they shall not overcome you; when you walk through fire you shall not be burned, and the flame shall not consume you."
This verse reminds us that when it comes to trials in life, it's not if they come but rather when they come.
During these trials God may not be all we want, but He is all we need.
I'm praying that today will be a better day and that you will come to the full knowledge that God is all you need.
Sending blessings galore to you and Chuck.
"what is mankind that You are mindful of them,
human beings that You care for them?
You have made them a little lower than the angels
and crowned them with glory and honor."
- Psalm 8:4-5
LL, go about your day knowing that you're just one tick below angel. Being home must feel heavenly! I know Honey thinks you're a goddess ;-)
How was the first night in your own bed? I hope a good night. I somehow missed that you got next treatment kicked back a week. I can't imagine that would hurt and can only think it would help you be able to tolerate it.
So much changed when our own doctors stopped following us while in hospital. I hated it. I was so used to seeing all the docs at noon or after office hours. I know their own personal lives were a nightmare; they were always "on", but this day of Hospitalists in hospital and your own docs outside is nuts. And your own docs can't write orders. It is crazy. You don't know who to turn to.
I have had incredible support in fighting for my corned beef, but I admit it shows what low levels we can sink to when we have nothing REAL to fight. I thank greygrammie for letting me know about that class action suit, because I am going the threaten that next, and soon Safeway will see me coming.
It feels so good to know you are home, Lea, even if it means Chuck is making a mess (as well as good food) in the kitchen. Like everyone else I feel our community here on your posts more than I have EVER felt it on AC. That we ALL love you so speaks OK for us, but it speaks volumes for YOU and who you are, and that we always knew who you are. I come here first thing every a.m. and leave last thing in p.m. and I read everyone's post.
I have found in hospitals, that the doctors will not consult with other doctors who don't have privileges in that hospital. I was told by a woman Doctor when I suggested she call Moms specialist that she was Moms doctor while Mom was in her hospital. IMO, this is how mistakes get made when you don't consult with the doctor who knows the patient. I will no longer wait a week or two to see a Primary like the discharge paper suggest. The last time my DH was in the hospital with AFib I asked why they were sending him home with B/P meds when he does not take them. Because he had been in AFib. But...he wasn't any longer. Found out when he visited his primary as suggested 2 wks later DH was lucky he could walk. PCP took him off. Moms the doubled and same thing, she could not get off the couch. I gave a hospital a list of Moms doctors 3 of which had privileges in that hospital. She was in for a UTI and they called in a neurologist. I asked who, I said I gave u a list, that is not Moms doctor. Why would u call in a doctor that does not know my Mom. Moms doctor had privleges.
The medical field is wacky and Moms PCP said that. You realky have to advocate for yourself and your LOs. TG I have an RN in the family.
Alva, what I do sometimes at Safeway is what your DD does! Yank the digital tag clear off the display case! HA! And/or I will take a photo of it with my phone. But I know you do not use a smart phone, so I'm glad people are fighting against the stupidity of the 'digital' nonsense which is threatening to take over our lives now. I like corned beef too, btw...........just like super expensive tenderloin MORE and when Safeway has it or prime rib for $5.97 a lb, I'll fight you tooth and nail for a limit-one-per-person package. I'll also send Chuck in for a package b/c he has a separate account :)
The first night back home in my own bed was great. Apria came here to drop off the brand new oxygen tank in 2 parts, but naturally didn't think to check if both parts WORKED! The upper part does not and as of this morning, the travel tank was not filled up when it's supposed to take 3 hours. Plus there is no attachment to put the cannula on. Incompetence continues, la la la. Chuck now has a call into them. At $21.78 per month rental fees for likely the rest of my life, I may as well outright buy one for $400-500. The oxygen is needed from 3 pm /4 pm on, and when sleeping/napping.
Sometimes I think it takes a big piece of bad news/disease/death or the like to bring people together, sad as it sounds. There is/was (I don't know b/c I don't post much but HERE) so much nonsense and in-fighting going on here that the purpose of the forum was disintegrating quickly. If my thread has, in any way, contributed to a kinder or more compassionate outlook here, THANK GOD. It's hard to go through all this, naturally, but it's easier when I know I have so many people behind me and writing posts to support me. HUGE difference that makes. Thank you to EVERYONE who's taken time from their lives to encourage me.
BTW, Honey is on my lap licking my arm right now ! LOL
Geaton, if Honey thinks I'm a goddess, then it must be so!
GG: yes, the mid level NP could not contact me while admitted. I just now got a call from the team who want to meet with me for support; I agreed to do so at my next infusion.
Funky, what I truly 'need' right now is RELIEF from this vertigo, from God or from the Universe or from SOMETHING. In addition, I need infusions, and lots of other things to come together for me in order to stay on track. God is not ALL I need. I need medicine to work together WITH God to extend my life, Amen. That's not a statement for argument, just how I feel.
NHWM, yes Honey is spoiled by us! LOL. What she gives to us is far greater than what we give to her.
IDK about writing a book......but I like that I've chronicled my journey so far right here to go back to at some point.
So I stopped taking Meclizine.......as a test.......for the past 30 hours and feel NO worse as a result! We'll see how it goes. Other than that, I'm hobbling around with my frame walker, doing ok with it, able to go to the bathroom alone, etc. I need a shower today so I'm not sure how that will go b/c the thought of having Chuck 'helping' me gives me the willies. I don't, after all, have my bad friends' "TITS". Mine are of a 65 y/o woman's, 100% natural. :)
You have united us. Gotten our nitpicking selves focused on a common goal, instead of infighting with each other. Our favorite atheist confesses sending up a prayer or two. We’re crying together and rejoicing together, and riding this roller coaster (as much we can) with you. Signing on, early in the day, and late at night, breathing sighs of relief that you’re come back and given us yet another update.
We’re all marveling at the privilege of walking through this with you. Thank you, and sending the biggest, most gentle hug I can.
Keep on trucking, girl. We need you here! xoxo
Are you having ringing in your ears or a sensation of fullness in your ears? YES YES YES.
He says this isn't vertigo! No wonder the meclizine isn't working, he says.
I need to go downtown right away to the AUDIOLOGIST for a workup within 2 days, urgent.
He would offer no other info just that the scheduler would call me shortly.
I told him he was the first person who hasn't made me feel like I'm insane in the past week.
I wonder what this IS? I had a feeling it wasn't vertigo and took myself off meclizine.
I feel relieved that SOMEONE in my Healthcare company got a hold of my file, thank you God
Audiovestibular Toxicity Secondary to Immunotherapy - NCBIa
National Institutes of Health (.gov)
https://www.ncbi.nlm.nih.gov ;› articles › PMC9138419
by JC Page · 2022 — Audiovestibular irAEs are a rare complication of immunotherapy. Suspicion for symptoms including hearing loss, tinnitus, and/or vertigo should prompt an ...
Abstract · INTRODUCTION · CASES · DISCUSSION
Haven't read it yet. I think this is what they are going to try to rule out. NIH.gov often has the best info out there, tho often a bit sophisticated for my understanding.
Anyway, think they are looking for/at a possibiliity of "audiovestibular reaction to immunotherapy."
They say a rare side effect.
Thank God that someone is LISTENING!!
My mother was 95% deaf in one ear, 65% in the other and had tons of hearing tests, yessir. I'm tending to think my issue is either a rare side effect of immunotherapy or neuritis.
cWillie, they asked me my symptoms 100x and 100x I told them I'm very dizzy, my head is swimming like I'm drunk, BUT THE ROOM IS NOT SPINNING. I also told them about the stuffed up ears/ringing. Nobody heard me. Apparently all the staff in that hospital need hearing tests as well. I'm glad the room is not spinning too, watching mom go thru that for 4 years showed me how horrible it could be. But this has debilitated me to the point where I had to take the walker into the shower with me. What's gonna happen when ANOTHER 2 bags of juice slam into this body?
I'm glad I postponed this thurs infusion.....bc I needed that day for this new doc appt. as it turns out. With God's help, they'll get me back on my feet enough to where I can tolerate it.
Alva, right away I read about that rare side effect you posted on. Audiovestibular toxicity which is most prevalent with metastatic melanoma it seems! Thurs at 230 MST I see both audiologist and head/neck doctor downtown. An RN called me, my file sitting in front of her, to ask me a bunch of questions. Then she scheduled me. Thanks for looking that up! 😍
BTW I hate digital coupons too. 😁
It sounds like it is one thing after another!
I hope that you feel better soon.
I hate to think what my experience would be like if I were to get cancer. I live in British Columbia, Canada and our healthcare system has deteriorated something awful. For instance, I hurt my foot four mths ago and am still waiting to hear back about an MRI. My foot could have fallen off by now. I was almost tempted to try private pay until I heard it could be upwards of $900.00.
Anyway, still praying for you.
Bandy - Surgeries are hard on the body. So sorry to hear you are not doing well and that you will need another surgery. Hoping it will get better for you.
Wow, nothing like a war of "Diapers" versus "what ever other euphemism we can use" for them to pop you lower on the top ten list in discussions!
I am kidding (and I am basically here every day to try to bring a smile to your face; consider me the face licking Honey of the crew), but I love what we go to war about in the semantics department. Or anything else. Actually I don't love it, and without you I wouldn't be in "Discussions" overall. I try to keep myself remembering my dad's admonitions to me of "Keep your nose clean, Kid!" And OFTEN FAIL.
Lea, I went as soon as I could to start researching what that could be. About all I can DO here. Bless the Head and Neck Folks and the fact that they are ACTUALLY READING YOUR CHART and trying to FIGURE OUT what is happening to you. I know we could start a skirmish over Kaiser as easily as over the word "diapers", but I happen to love them. I didn't work for Kaiser, but have been a member since I retired, almost two decades. To me they are the best in a very imperfect system. As to whether or not they make mistakes? Yeah. We are human. We all do. And with more and more and more knowledge it is simply impossible for any human to keep up.
Keep healing up and getting strong; hope you soon have an answer.
Loving on you!