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.
I was just thinking about you and I googled ‘dime’ on a whim.
Did you know that there is a perfume called Dime? It has a lot of positive reviews.
I have never heard of this brand before, maybe you have. Every time I see a dime now, I say an extra prayer for you.
Sending many hugs your way today and hoping that you won’t be in too much discomfort from the side effects of your recent treatment.
The vet is sure right in that we humanize our dogs, but I guess in a lot of instances they are more loving than our humans, hee hee. I don't know about those diets that are fresh meats. When you think of it it is a dog's natural diet in the wild, and there ARE wild dogs. They basically are carnivores, not omnivores. Just look at those teeth. I do think we have genertically changed them now to the point they don't tolerate it, the meat that is. I think they often can't tolerate our wheat as it is grown now to be more seed than plant, and lots of allergies come from it. When I had dogs with wheat allergies they thrived on Natural Balance Limited ingredients. Yike, expensive today as our Jeffrey, our co-foster, is on it.
Hang in there and I will check in evening to hope the nausea is a bit abated. Don't wait to get what you need from your MD. He/she is aware that with what you are dealing with, you aren't a hypochondriacal whiner. You should have what you need for nausea and pain and should call when it isn't working for a few days.
Thinking about you so much. By the way, I consider eggs nature's perfect food. No matter what this or that or the most current studies say.
For nausea, you may want to get some "tummy drops" from Amazon. Made with peppermint, I always keep some on hand. They do work! My DH and I have had to use them from time to time.
My daughter just bought some of those bones because the rawhide ones are supposed to be bad. They are very expensive!
Yes, dogs are being humanized! It is hard not to spoil them but some people do go a bit overboard.
Have you noticed how several restaurants are calling themselves ‘dog’ friendly because they are allowed to be guests on the patios. They place bowls of water out for them and hand out treats to them.
NHWM my vet said people are treating their dogs like humans lately (shocking...not) and making them sick! I was feeding Honey some of that Pet Fresh when she was sick and the vet nixed it. Told me to go back to the lamb Science Diet which now has been villainized due to being "hard brown pellets" which has been notoriously good for dogs until the niche market snuck in to make US feel like bad pet parents. The one thing I like to buy Honey is NoHide chews. No rawhide in them so easy to digest. She loves them, but they're expensive.
Back in the early days of my health issues, my nausea was so bad, I ended up in the ER whole bunch of times.
FINALLY, a doc had mercy on me and gave me some Ativan. It was the ONLY thing that worked. (He said that it is sometimes given to cancer patients, who get so nauseous from chemo.) Sometimes, a half, or even a quarter of one helped. Zofran NEVER did.
Soo, hypothetically, if you have some kicking around…
Praying for some relief for you, tonight.
Yes, one week something is reportedly bad, the next week it’s good again! I still can’t figure out what “they” consider proper nutrition. It’s confusing.
I’m going to eat eggs! LOL 😆 Some people say yes, others say no. I like eggs and I am going to eat them.
I never know what to believe. It’s sort of like our weather. We tell people that if they don’t like it, they can stick around because in twenty minutes it will change again!
The thing that gets to me about eating meat lately is some people try to push their preferences on their pets!
I went to buy my grand pooch dog treats last week in the pet store by me for when he stays at our house. We watch him when my daughter goes out of town.
The woman who owns the store proudly told me that she sells ‘vegan and vegetarian’ dog food! I almost laughed out loud but refrained from being rude.
Really??? Are there vegetarian dogs in this world?
NHWM, in my book, anything w 32 gms of protein And 1 gm of sugar constitutes a "complete meal". Who's in charge of making such statements these days anyway, what nincompoop has been appointed to tell us what we s/b eating? The liars who load foods down w sugar and call it healthy? Bill Gates maybe, who's buying up all the farmland in the country to put cattle farmers out of biz bc he's decided meat is now "unhealthy" but insects and Impossible Burgers are? Fake meat is ground up junk food. Humans have been eating meat since caveman days, but read up on how healthy cookies and sugared cereal is these days, given higher points in nutritional value than a chicken breast! Everyone has an agenda and a narrative about what constitutes "healthy eating" which is all lies. I determine what I eat based on how it makes me feel. J/S
I do miss my coffee even though I can't stomach it. Never was a tea drinker but ginger lemon is good for nausea. Got to see if I can find it in the pantry!
I am glad that you are feeling a bit better.
Yes, order the shakes if that is the only thing that you can tolerate right now. It doesn’t sound like you will be able to eat anything just yet. I am sorry that your stomach and taste buds are out of whack for the time being.
I know that you need the nutrients but I certainly understand how you wouldn’t want to eat anything that will make you feel worse. Yuck!
Do those shakes serve as a complete meal?
I know what you mean about coffee. I love my coffee too. The only time I didn’t drink it was during my pregnancy. What about hot tea or are you not a tea drinker?
Funky and NHWM, I'm feeling better this afternoon thank God. I've lost my taste for COFFEE which is insane, after being a pot a day drinker my whole life. Also all foods taste extremely salty to me now, but not sweet tasting foods. So its become tough for me to eat. I found a Premiere Protein choc shake in the fridge that Chuck was drinking after his t/p, 32 gms of protein in each 8 oz container and 1 gm of sugar, just 160 calories though. I'll go order more of them bc they're easy on my stomach and don't taste salty. Tonight I'll have a fruit smoothie made w Muscle Milk protein powder which is high calorie, unlike Premiere. The thought of drinking meals appeals to me especially since I'm totally parched all the time. And no nausea from the shake, thankfully. I still have that woozy feeling of just having come off a ride, though. Which actually started right after the 2nd infusion last Thurs.
Seems I now have my profile back but yours doesn't seem to allow messaging.
Alva is having problems with the site bigtime. She talks about it on the "On my mind" discussion. The Administrator finally contacted her and has no idea what is going on. For now Alva is going to take a hiatus from the group.
I tried to PM you but when I get in it does not give me the option to post. She wants to keep in touch with you and I have info but don't want to post it here. And my Profile is down. Do you have any suggestions? The only one I have is to give u an old email of mine.
I just hate that you're having all these horrible side effects, but hoping it will all be worth it in the end.
And if you filing a lawsuit could save even one person from having to go through what you are it would be worth it for sure.
I know I don't post often, though I follow your post daily, but please know that I lift you and Chuck up every day in prayer and am still believing for a miracle.
I’m so sorry that you had such a horrible night. This morning doesn’t sound much better. I hope that you are able to get some rest and feel better afterwards.
Will say an extra prayer for you.
JoAnn, leave it to a man to go play golf in ski jacket weather, come home likely miserable, but hey, WE'RE TOUGH GUYS. Enjoy your alone time.
I got an email from my dermatologist saying I needed to get in for him to do a visual body scan of my beauty marks and moles! 18 months AFTER the original one was removed, causing me all this chaos. I was LIVID when I read that and wrote back saying so. No protocols in place to follow up with patients who have had surgery to see if the melanoma went systemic bc "there's a 95% success rate with it", meaning if 500 patients come in yearly for a malignant melanoma to be removed, 25 patients WILL develop metastatic disease! So I get a phone call from this PAs nurse, of course.....throw her the dirty work and stay hiding out under your desk, coward. She informed me I SHOULD'VE had full body visual scans every 3 months for the first year, and every 6 months for year 2! I had ONE! IN TOTAL! She agreed how ludicrous it is to have no procedure in place like an ultrasound or similar, to check for metastasis at least for the first year or 2. All of us poor slob 5%ers just get to suck eggs, I guess. If these stupid insurance companies were to look at how much it's costing them to treat the 5%ers vs how much it would cost them to do PREVENTATIVE testing, they'd be gobsmacked at how much they're losing. As if human lives should be measured in dollars and cents anyway. But that's all they understand, profits. 😑 ALL of this could've been treated immediately with an ultrasound of my left armpit bc it's a fact that's where melanoma first travels to after surgery on the left arm. Instead of waiting till I became symptomatic bc by then, the cancer was in my bones, spine, lymph nodes and worst in my liver, the biggest organ in the human body. Sad. DD is so enraged she's calling a lawyer for their opinion about negligence in this case. If a lawsuit would stop ONE more person from going thru this, or force insurance companies to establish protocols for testing post surgery, it'd be a great thing. All I was told after the surgery was, " you're fine, we got ALL the cancer, you're done, bye bye & have a nice day." No talk about 5%, or what to watch for, nothing.
I'm going to try to sleep now after I drink another bottle of water.
Have a blessed day
JoAnn
EEEEk, thanks for the heads-up!
NHWM, I also have the tiny plugs. They help somewhat, but I'm a crazy case!
LL1, praying for you this morning. May God make his love for you clearly abundant today.
Praying for you daily, checking in every evening.
Lactobacillus acidophilus
Bacteria
Lactobacillus acidophilus is a rod-shaped, Gram-positive, homofermentative, anaerobic microbe first isolated from infant feces in the year 1900.
Isolated from infant feces? 😑
My chronic dry eye condition was cured using the 2 eyedops in each eye every hour on the hour program for about 2 months.
Colleen, good to know about the Magnatiles being good for your 2 year old g/s. I'll head over to Amazon where I can shop (for now) from my recliner.
Well, 40 and rainy here in SWJersey. I guess better than snow the North part of the State is suppose to get. My Daffodils are coming up and I tell them its too soon. They are hardy flowers, though. They just keep multiplying. DH planted them in rows, didn't work, they multiplied and now are clumps.
I have sent a prayer up to have your pain eased. I see things areca little better today. Again, have a Blessed Day.
I have dry eyes also. My optometrist put plugs in both of my eyes. I still use drops but I have noticed a difference since getting plugs placed in my eyes.
Colleen, I hope you get relief soon.
Lea,
Where is your pooch? Is she in your lap or by your side? She sounds so lovable! I have no doubt that she knows that you are not yourself these days. Dogs are so intuitive.
It’s so good to hear that you’re breathing easier!
DD wanted to get Magnatiles for my grandson but they're for 3 and up. He's 2.
JoAnn.... I thought it was acidophilus that helps with yeast? The Vagisil numbing cream is working fine bc it doesn't seem to be yeast. But I ordered Monistat if needed. It's like playing Whack-A-Mole with these stupid side effects.
Thank you NHWM and llamalover 😍
Today and yesterday afternoon and evening I've been very nauseous, but my pain levels have improved. I'm hoping for a good day today....my diaphragm feels a LOT better, like I can fill my lungs now w/o pain. Definitely a blessing.
My goal was to go to 1 estate sale as of March 1 which is tomorrow. Not sure I'm quite there yet (due to back pain only), but getting closer, thank God.
Lea, hoping this is a good day. Thinking about you this early and rainy day. We are so lucky in California to be getting rain and snow pack after such a long drought. But it's a bit dreary. I comfort myself with my rain gauge readings.
Looking forward to your daily update for us.