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.
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.
"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 ;-)
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.
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.
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!
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.
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.
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.
I think I am feeling combative because of all you are going through. I can't fight for the cause so I am ready to fight about digital coupons.
I know what you mean about the "great" hospitals that are treating cancers as specialties. There is another side of that in that they are cutting edge, and often are using things as yet unproven. Sometimes they work and it is how we learn and how we get new meds. But sometimes the outcome is disasterous and you are the guinea pig. And you never know which category you will end in. They are both wonderful and not. I am one who kind of hates dealing with "teaching hospitals" due to the number "learning". You know, learning to put in picc lines, learning to do central lines and etc. There's no answer to being in the hands of the medical community. Certainly full of both highs and lows. And whichever you are currently in you are kind of trapped there.
Have you talked to anyone about Thursday's treatment or is that something you can do by video from home with the doc who actually orders it?
Wasn't aware Bandy was heading in under the knives; wishing her well and healed.
You’re absolutely correct about MDAnderson. They are fabulous! My mother in law received great care from them.
I hope with all of my heart that you will start to feel better soon.
Having fever on top of everything else that you are experiencing must be so tiring.
It’s interesting, because when I would take my daughters to the pediatrician when they were young, the pediatrician said that she wished that the thermometer either read ‘yes’ or ‘no’ instead of the exact number of degrees.
She said that a person with a ‘low’ grade fever could actually be much sicker than a person with a ‘higher’ temperature.
Will continue to pray for you. So many hugs 🫂 going out to you today and always.
Thrilled that you are going home! No one ever gets any rest in the hospital. They are constantly doing this or that for one reason or another.
Your sweet pooch will be delighted to see you!
97yomom the doc hasn't even written the DC order 3 hours later so yeah, lucky to be out of her by 5pm.
Colleen, docs think they're gods, many of them. I had to hear today that I haven't had any fevers here in Hospital even though 4 out of 6 days I have. A "real" fever is 100.5 and mine have been under that by a hair, so.....meanwhile my normal temp is 97.5!!! You bet your sweet bippy my fevers are real.
It's times like this I'd love to be under the care of real cancer specialists like MD Anderson, Sloan or Mayo. They'd know what all these issues are right away and not dismiss me like I was whacko Betty. Sad. This experience is going to make me verrrry leery about calling the oncology office about side effects again. I will if there's something really bad going on, o/w I'll figure it out on my own.
Good sleep is the ticket.
You know of course that after 1 won’t be anywhere near 1.
Enjoy today and give our best to Chuck.
Annnnd,
just shaking my head at how docs dismiss us when we tell them about medications’ effects on OUR bodies! 😠
(That's how my son used to say it when he was a lil boy) :-)
Echocardiogram was perfect TG
Heres what I've determined on my own: meclizine 25mgs MAKES me dizzy. I felt good when I woke up, then after meds, my head is swimming. Dosage cut to 12.5 mg and the doc saying it's not true meclizine causes dizziness can kiss my arse. ALL meds are disagreeing w me lately, period.
When I feel weepy, check 02 it's likely low, not depression (which is a valid and separate matter)
A resistance inhaler called The Breather is MUCH BETTER than an incentive spirometer bc it's super easy to use so it's USED. Vs the infernal IS that's thrown by the wayside asap.
I'm glad I'm in tune w my body vs having to rely on being TOLD how I feel.
I asked to speak w my oncologist about the prudence of delaying my infusion by 1 week. Which translated to "she wants to delay her infusion by a week" which caused the nurse to reschedule it. When she called me this morning, I told her that's not what I requested. Oh she'll refer to her notes. I DO NOT care what your notes say, I'm telling you personally what my request is. Oh my doc is on vacation FFS. No other doc available to talk to. Really? A week I'm here I've seen an oncologist for a total of 10 min and she ran in very late to sit w the other 2 docs! So the nurse arranged for me to speak with a mid-level person ( whatever that means) today at 330. Meanwhile, when the regular doc came in she said a mid level person will NOT answer my question! CYA principle and all. She'd already spoken to an oncologist at my practice who said it definitely fine to delay infusion a week bc they last 9-12 weeks!
Arghhhh. THIS is medical care in 2023, sadly.
But I get to go home w oxygen sometime after 1pm, praise the lord.
I slept like a log last night too.
Sp you said it!
Alva, I'm going home by hook or by crook lest they want to find something else out of whack. And GOOD RIDDANCE to Lovonox injections in the belly 2x a day😑
Thank you everyone for your supportive words. I'll post later when I'm back home w Honey on my lap
Basically, if they looked at all the systems and they are doing OK with this, then it is ONLY YOU that feel like trash. Again, teasing you, but sounds like maybe you could go home if they say so, maybe being with YOUR little dog would be the best medicine. I get what you are saying--that everything they can test is holding pretty well with the exception of things they see as side effects of a treatment this tough to take.
And as to why God would keep my dogs? I don't know. I never understood the guy. But really, anyone would want my dogs. They WERE all such good dogs. Again I am kidding you, but if I were a believer I think I would be the maddest one out there. I always have studied faiths--ALL faiths. Always been so interested in them. I love that the Jews think it perfectly right and normal to argue with god. The Rabbis get out there and ARGUE things. No bible study where someone teaches what you are to believe, but rather a good red hot argument. I kind of love that thinking. But you know me!
Today has GOT to be better. I will hold out for you being able to go home. And for feeling better once home. And then on to the decision ahead from a stance of strength.
I am in your corner and punching. Feeling frustrated. I feel today like I just cannot HAVE another bad day for you. I still remember patients I didn't want to have my day off, I didn't want anyone else there for them. You see how untrusting I am! And how quick to anger. "Do not TOUCH my patient!" sort of thing. I never used to get faint or dizzy from anything I saw or dealt with, but I did get dizzy when my patients were in pain. I was the worst nurse to have at your side while you had a lumbar puncture; likely to faint right over you, hee hee.
All to say, I want this to be a good day for you. I want that so much.
All I can say is your one brave person. Hope today is better.
"The fundamental fact of existence is that this trust in God, this faith, is the firm foundation under everything that makes life worth living. It’s our handle on what we can’t see. "
- Hebrews:1-2 (The Message)
Hebrews 1 is considered the "Faith Hall of Fame" and is inspiring but too long to post here. I highly recommend reading it.
https://www.biblegateway.com/passage/?search=Hebrews+11&version=MSG
And
"Then Jesus told him, “Because you have seen me, you have believed; blessed are those who have not seen and yet have believed.”
- John 20:29
And,
"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."
- 2 Corinthians 4:16-18
LL, keep your eyes on the prize! xoxo
My prayers for you continue, in earnest. I know this is an anonymous forum, but how I wish we could all be by your side in that hospital room, spilling out into the hallway, telling stories, reveling in your quick wit and unending faith - and the laughter, oh the laughter! The nurses would not be happy with the lot of us😂 I truly hope you know how you have touched us, as cxmoody so eloquently wrote. ❤️❤️
I bet there are so many here that could say the same.
Someday, when you end up looking down from heaven, you will see the generations stemming from all of those you helped back from the brink.
These will be generations of people coming from those who, through your words, figured out that THEY weren’t the crazy ones.
The next generation will have been told and prepared by their parents that Dementia looks like “this symptom” or “that wack-o behavior”. They wouldn’t have been knocked off kilter by the stress of some previously unexplained zombie illness which has taken over their parent.
Each generation will be better educated and better equipped, and hopefully, experienced less suffering and more proactive caregiving.
You’ll see them all, then turn around, and be greeted by Our Savior, who will most assuredly say, “Well done, good and faithful servant.”
What a glorious day that will be!
I'm happy for you that you have no fear of dying. As a believer I know I'm saved and yet still fear death. I can't imagine I would ever be sitting in your position posting about it. I guess nobody really knows how they'd react.
I hope you beat this thing and then you can come on here and talk about how you conquered cancer. Still praying............