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've been feeling BETTER the past 2 days and actually took a shower last night where I wasn't half dead afterward! Bonus! Lol 😂🤣 Idk if the IVIG is kicking in or the 3 month mark is approaching, and I don't care, just PLEASE HAVE THIS DIZZINESS LEAVE.
My kids are on their way over so I'll be back later to post.
Have a great day ladies😁
And happiness to all who are 'Mothers', and all who have a Mother!
Thinking today about big pharma and all the negatives we often say and hear about it. But - and that's a big but - big pharma has kicked a&& with your cancer. It really has, and it has supported Chuck's liver transplant. You both are waking wonders!!!
I wonder if there are any shower products with glitter in them. Then you could truly shower and shine!🚿🎇
No matter what happens next, I was granted a longer life by God and modern medicine and for that I'm extremely grateful.
Thank you Geaton for posting scripture daily. And to everyone for diligently posting to this beautiful thread.
Yes golden, big pharma has kicked A$$ with my cancer, amen to that! I do have some eye shadow w glitter....ha....haven't trotted makeup out in forever. Maybe it's time to do so! I wore a necklace and earrings yesterday w a new dress I bought online. I felt pretty. I actually bought about 5 summery lightweight inexpensive dresses just below the knee, that I can wear w/o a bra (to let the spinal surgical site heal) and they're quite nice.
Also, truly wonderful news update about your progress - what a miracle - Many Blessings!
We join your family in rejoicing that you were able to celebrate Mother’s Day this year!
Such a gift to them, and to us!
Glitter eye shadow - go for it!!!
As far as I am concerned braless is the new black lol.
I am so happy for your whole family. You all had a memorable time yesterday. There are many more to come I am sure.
Bless God for His mercies, they are everlasting!
Tomorrow is my appointment w Dr C at 130pm. Curious to see if he'll want to give me an IVIG in approx 2 weeks time. I just don't see this DIZZINESS magically disappearing on its own, sadly. 5/23 will be 3 months I'm dealing with this. I was praying to be done with the reaction by the 3 month mark. But it could be permanent....there is no way to know.
The steroid taper continues with withdrawal an ongoing issue, but not hideous mood swings and waterworks. Terrible acne from the top of my chest to navel, though, rash-like in appearance. Horrible sweats that center at my neck and are very intense for hours on end. Ridiculous. I'm wondering how much dizziness is from the roids? I'll be weaned off by 6/23 So then I'll know for sure. Boy these puppies have done a number on me 😑
Chuck's entire demeanor changed once my PET scan came back alright. He calmed down immediately and admitted to me he was petrified I was going to die and wasn't able to think straight. I've called in my housekeeper more often to relieve Chuck of cleaning so much and signed up for Wal-Mart grocery delivery to my front door.....same day delivery for $98 a year. DEAL! How nice it is to shop from a phone and have the groceries in the kitchen a few hours later? 😁 So idk what other changes we can put in effect if this dizziness chit is going to last a lot longer, but I'll figure something out. He's been baking cookies a lot lately after he gets home from bird photography w my son in the mornings, so he's feeling better in general thank God.
We finally have a rain free day here today, door open, sun shining, life is good. Wishing all my lovely peeps a great Tuesday.😍
Our son is also on the prednisone taper, he’s worked his way down to 5mg now, so a lot of taper has happened. He has that awful rash from it on his chest and back. It seems to go away inch by inch a little at a time with each taper down. He hasn’t had dizziness, but definite hunger and moodiness, more than the usual bad mood. He’s very anxious to be done with it! Prednisone is both a huge help of a med and huge menace in our opinion!
Will also share, when we were in the worst of the most recent medical crisis, I talked to a friend one day, didn’t say a peep about anything other than update on son. She said “you and your husband are at each other’s throats aren’t you?” It was like lightning, to have someone see so clearly, that the stress of it all would have us become just like that, when we normally get along so well. It seems to happen to us all in the storms, we just reach a point of attacking those we love most. Then we clam down and realize what matters and what doesn’t. I’m so glad your back there. And that the healing of mind, body, and spirit are underway. Prayers for continued progress and bright days ahead.
I’m glad we’re seeing you here again!
May God continue to bless you and make His face shine upon you and give you His peace.
Grocery delivery is the norm in this household since the beginning of covid. What a boon it is!!! Sounds like you are making some good changes with more housekeeping too.
I can't imagine the relief both you and Chuck had, the relief your whole family had. but I know it was and is huge. ((((((hugs)))) to you all.
Thinking of you and keeping you in my prayers.
REMISSION WITH N.E.D: NO EVIDENCE OF DISEASE! 😁
I feel like a miracle has transpired here, between two immunotherapy treatments and all the prayers sent up on my behalf!
Next week he ordered another IVIG infusion at Kaiser for me, outpatient. It'll be one infusion taking place over a 4 hour period, thankfully, instead of a 3 day period.
I asked him about why it took a second opinion at UC Health to diagnose and surgically treat my spine fractures? Know what he said? "Because I effed up." Except he used the F word. 😑 I honestly think the man is a bit psychotic, personally, w a hair trigger temper due to how oddly his face changed when he uttered that statement. DD saw it too. In any event, he saved my life by squeezing me in for an appointment right away and getting my immunotherapy started 2 days later. I thanked him for that and also mentioned how I don't think its fair how one doctor is left to manage all their patients care from A thru Z w/o a case manager to
oversee things. 🙄
DD came with us today and sideswiped a car in the parking lot while trying to park. She left a note on his windshield (minimal scratch damage) but was shook up about running into the car owner on her way out. Poor thing, ugh.
Annyyyyway.......such good news today!
Fawnby, I love the ongoing list feature WM offers, how ridiculously convenient! Although I'd cut my left arm off to drive to a store right now.....tbh. Being cooped up in this house for over 4 months is not cool 😣
Daughter, the prednisone taper is truly a horrendous thing. Nobody can comprehend the side effects until and unless they've been thru it themselves. The body odor and hair odor factor has become an issue for me now at 60 mgs. I smell myself, even after a shower and using Lume which is fantastic btw. The lavender and sage is a great fragrance you can use anywhere on the body. Just like nobody can understand my "dizziness" is like I've had a gallon of moonshine to drink vs feeling a bit off balance! The only relief is lying my head DOWN on a pillow. My DIL called to see if I can attend my grandsons recital at school 30 miles away tomorrow night and I'm like uh, no. That I have to explain the situation after 3 months underlines the fact she is clueless what that CAR RIDE even means to me!
Your friend is intuitive to realize the stress you and dh are under with caring for your son going thru a transplant. Sometimes the stress is silent and builds up, too.....always with the underlying dread of death as an outcome. Which we try to prep ourselves for but cannot really do, I guess. God bless you all as you navigate the stormy waters ahead and to your dear son for his strength and perseverance. Sometimes we just want to give UP and not hear about how "strong " we are but then we get a second wind or an inspirational word from a loved one, or some good news and WHAM....we're on the road to ok again. 😊
Geaton, happy 94th to your mom and 104th to Auntie. Good lord....
FG, thank you for your continued belief in miracles for Chuck and I despite you not being on A.C. as much.
Thanks again to EVERYONE for all the amazing prayers you've offered to God on my behalf for healing. I am amazed at how things have turned out. I will need a PET scan every 3 months from now on to see if the melanoma returns. It can stay in REMISSION for years. If it does return, then we contact UC Health to enroll me in clinical trials for treatment bc immunotherapy "mabs" are off the table due to the toxic reaction I'm having. No treatment is warranted now, but IVIG, so thank God for that!
I am sure you will sail through future tests and treatments. You have an amazing will to live and incredible energy to keep all informed despite what you are enduring,even relaying all with your unique wit. AC would never be the same without you and the week you were "off" left me with a feeling of something missing not that there aren't so many other wonderful posters here with their individual outlooks.
I think my family thinks I don't need the site anymore but I truly do and feel a great bond here. Hoping for continuing good results for you and your family and maybe some full grocery bags left behind.
RD: your family has no idea of what you need from A.C. personally bc they don't know what you glean FROM it. And why is it, I wonder, our mothers often manage to give extra anxiety producing "gifts" to us from beyond? 😑
Cwillie....I am not opposed to alternative therapies at all. I've often wondered about those packs you adhere to the soles of the feet to degunk impurities from the body. Like Chuck says, rub me down with horse manure if it'll help 🤣😃. But have Lots of Lume nearby please. Ha.
Sp.....thanks gf! Today it feels like I won the lottery! I honestly never expected such a clean PET scan. Hallelujah
Newbie......I am highly suspicious that the prednisone is CAUSING me lingering dizziness. Of course, I can't ditch this crap to find out, but have to continue the taper to be safe. However, WHY do I feel pretty ok at 3 am every morning and at my worst 1 hr after swallowing the pills???? There must be a correlation. I can't wait to have the damn things out of my system once and for all.
I think you just made everyone’s day by posting this wonderful news. I couldn’t be happier for you and your family!
I have tears in my eyes!
No evidence of disease! Soooo happy to hear this!!! 🥳🥳🥳
Thank you, God! 🙌
Praying for you to be right, and for the dizzies to leave as the taper proceeds! 💃💃💃