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.
For me, in fact, the benadryl, which puts hubby to sleep at 1/2 tab, makes me restless, with restless leg syndrome and etc. Drugs are just such a mixed bag.
Be real careful about taking ativan in future. From what I can quickly find on internet the half life of ativan is 12 hours, so you might feel a bit of a mess from it for a day or so until its out of system.
Hoping you feel better today.
I guess the awful irony would be to ask "But how was the nausea?" And I DO mean that as one of those awful jokes such as the one which goes "Other than that, Mrs Lincoln, how did you like the play?" I know. Some are out here being prayer warriors and some are telling entirely inappropriate bad jokes. But you know me. AND you know I love you.
What can I say.
I am SOO sorry about the Ativan!
I’m praying for you to find a GOOD solution to the nausea! May God give wisdom to your docs.
I wish we could all show up at your house at once and sing through your window and remind you how much your are appreciated here!
I feel horrible today with dizziness almost like vertigo which I'm praying this isn't. The hi dose steroids used to treat vertigo are not something I'd look forward to! I'm using my cane and stumbling around.
The infrequent pain in my right side is not gall bladder related,,that would have shown up on the CT scans w contrast. The liver, covered w cancer, is on the right side.
The nausea is mostly gone and I have Zofran and other ideas if it comes back badly. I wish you could all come sing to me at my window too, but this forum is the next best thing.
Stop biting my lines Alva, "Other than that Mrs Lincoln, how was the play?"🤣😃 is a line i use frequently.
Hope, I like your thinking and will try coconut water.
I've honestly had enough sleep these past 5 weeks that I should be fully healed by now. I'm ready to feel human again and stay out of bed!
Bandy, like Dr C said, life's not fair so we deal with what's on our plates. Let's hope he never has to though, huh? 😑 I'll be the first one to say our entire medical system is BROKEN. AND NO, THE ONCOLOGY NURSE never did call me on Fri as promised. Shocking I know. Not. My vaginal itching is all gone w no treatment too, so so much for a trip to the gyn. Oftentimes I question whether to even call these nurses, tbh. One rigmarole bs story after another. Tomorrow they'll probably conclude I have a brain tumor due to the dizziness and off on another wild goose chase they'll want to send me.
This immunotherapy has a TON of miserable side effects the doc said WOULD KICK MY ASS yet the nurses either dismiss them or want to make a federal case about them. So far I'm not bleeding from my ears so that's a good thing.
Send, I'm sorry you had a bad reaction to Ativan too, but happy to know I'm not alone. I was having bizarre dreams too that night like I was in a funhouse of no fun.
We did go to my son's house today for his and my grandsons joint
birthday. G/s is 2 and son 38. I had to lie on his recliner the whole time, but I made it. My ex was there and chewed my ear off the whole time about how horribly anxious he is about getting a new hot water boiler system installed tomorrow. Really? A man who's gotten clean PET scans for 7 years after a stage 4 colo-rectal cancer dx in 2016??? I told him it's never the stuff we're anxious about that happens. It's crap from out of left field we never imagined happening in a million years. Celebrate your victories and quit sweating the easy stuff. I'm sure it all goes in one ear and out the other bc he's a professional complainer and whiner.
My son had to chat w him 3x about NOT bringing up my cancer w me. I am not in the mood. So right in the middle of a video call with my grandsons other grandma, he yells out OH I HEAR YOU'RE NIBBLING ON POT GUMMIES?? Ugh, my son had a fit and said dad, you're on a sound sensitive recording so please stop. He wound up leaving 15 min later bc he was insulted. Best idea EVER was to divorce this man in 2002.
Sending love and prayers your way.
I guess YOU are where I got the Mrs. Lincoln joke??? I thought only I was perverse enough to love that one. I am a total Lincoln fan. Comes of my Dad taking me yearly to his tomb.
I hope the dizziness abates. So agree with you about medical. Either they make a federal case out of it or negate you completely. Hillary Mantel (author of Cromwell) was dealing with the British system but her whole story about the decades long missing of her endometiosis until it had destroyed her insides was a nightmare read. She basically said that for a woman, if they don't know/can't find what you have they just label you "crazy" and that eventually she actually believed them.
I hope the day is good, the ativan totally out of your system and you feel better. Thanks for the family celebration story as it was another of your gems.
Took me reading a couple of responses before figuring it out.
No trip to the GYN!! 🤣
I’m moving slowly today, and so, apparently, is my brain!
Prayers continue!
Thanks GG. Today has been none of what you'd hoped it would be for me 😑
I'm still battling what feels like vertigo with tinnunitis or some kind of hearing/balance issues.
I slept poorly again last night and woke up with raging brain buzzes and a fever of 101.5. Chuck was ready to call 911 for an ambulance to the ER, I was that bad. I can't walk without a cane, I can't hear sounds clearly, but I'm not nauseous at least.
The doc said I need a brain MRI and blood tests at the ER tomorrow to see if this is neurotoxicity from immunotherapy! Ugh. Now I'm really worried as this can be permanent AND stop or reduce my treatments.
Jjust the thing I was praying wouldn't happen.
We're all praying for you and I hope tomorrow turns out to be a very productive and positive day - and outcome. Sending hugs and positive energy your way
XO
I am so sorry. I’m not going to say anything dumb like, ‘stay positive.’ You are entitled to feel anything you want at this point in time.
Of course, we all want the very best outcome for you. It’s natural to be concerned.
I remember when my dear mother in law was suffering tremendously with her cancer. She complied with everything that her doctors asked from her, including traveling to MD Anderson in Texas for treatment. She endured so much.
She prayed continuously for healing. I was the person that she felt that she could express her real feelings to. She knew that I would understand how she felt. One time she said to me, “I asked God if He was listening to me.” She was frightened. Who wouldn’t be?
Overall, she wasn’t one to overly worry.
She was a realist. I loved that about her. I dislike Pollyanna types. They work on my nerves.
Even after my mother in law went into remission for her lymphoma and hit the five year mark, she claimed that it would always be in the back of her mind that her cancer could return.
Sadly, it did return and with a vengeance. She lost hope because she knew that she would die and never be able to see her grandchildren grow up.
She adored my daughter and my brother in law’s two sons. She told me that she had hoped to travel more. It was awfully sad.
Then as time went on, she seemed to accept the inevitable and was at peace. She was grateful for the joyful times in her life.
I was glad that she was ready to meet God.
She adored her father. She was an only child. The family joke was that her mother must have come from a party tipsy on the night she was conceived because she wasn’t the least bit affectionate with her husband.
Her vicious mother treated her like crap all of her life. She came to the conclusion that her mother was mentally ill.
I will never forget her saying to me, “You know, most people learn ‘what to do’ from their mother. I learned what ‘not’ to do from mine.”
She broke the cycle of abuse. She was a wonderful mom to her three sons and a fabulous grandmother. I still miss her.
She died at age 68. Just a year older than I am now. She didn’t get to meet our youngest daughter.
Don’t think that I am crazy but I think she had something to do with my youngest being born. I think she got to heaven and pulled some strings! I have two miracle children.
My mother in law went with us to the adoption agency in Texas to meet her granddaughter. I wish that she could have been there at the hospital when my second daughter was born. I do think that she saw her from heaven.
No one expects you to put on a brave face, Lea. We love you!
Bandy, yes it could be BPPV which is the most common form of vertigo, and what mom had. I did not know it could come on from lying down for long periods of time which IS INDEED the case for me. IDK about "PT" of any kind in my condition however. Those sessions are not easy, first off (Mom had quite a few before the PT said she could no longer work with her due to the severity and intensity of her reactions to EVERYTHING.....) I'm just too wrecked for such a thing, so we'll see what they say. Not to mention those 'treatments' were all VERY short lived in her case.
Thanks for the lovely comments on my photo avatar. It seems to me, anyway, that a person should not be asking for prayers & pouring their lives out on a forum without divulging who they are, for real. It's enough I have a phony username.
Overwhelmed, forgive me for neglecting to thank you for your wonderful post to me the other day. Just letting me know that I was personally able to lift someone's spirits and help them during the dog-days of their caregiving journey brings me much comfort and lifts my spirits. Thank you for taking the time to thank ME. :)
NHWM: Thanks for acknowledging my right to feel however way I DO feel. People DO NOT understand or acknowledge that much at all, in general. They feel that if 'you have faith', you're not entitled to feel SCARED. My good friend sent me a scripture this morning saying just that, basically. I give a big fat RASPBERRY to that. I can have faith and STILL be entitled to be fearful, FGS. Such statements invalidate what I'm going through and cause me to pause in speaking my truth, as if I'm committing some sin if I'm ALSO a human being. I don't buy it, sorry, and that doesn't make me 'less faithful or Christian' than the person spouting the scriptures who's never had more than a headache in her life, you know?
If anyone disagrees with that statement above, that's okay, I don't need to hear about it. Or lengthy stories about loved ones who lost their battle with cancer. I KNOW I will eventually lose my battle too, more than likely, but I do not need to hear the details b/c I'm suffering enough already right now.
I'm sitting at my desk in my study which required the use of a walker AND some near falls to get into. But I'm here. And we'll be leaving in a few minutes for the ER which the idiot nurse now says 'won't take direction about what to do for me from THEM, they do as they please." Then advised me to 'advocate for myself at the ER." I plan to go in there and lay it on even thicker than it already IS, so that's my plan to get HEARD and ATTENDED to at the ER. If it doesn't work out, Dr C will have to order a brain mri at his office.
I'm off to the races. (I feel relieved that my mental ACUITY is not compromised here at least!)
I'll post when I get back.
Your words of wisdom...............
Your Lea-brand-cut-to-the-chase-honesty.................
ALL I TREASURE about you
Has made me weep this a.m.
I am pulling for this to be only more side effects of the therapy. I am pulling for this to be like the fevers, the rashes--just another manifestation of how tough it is to turn up the heat on our immune systems.
Will await words.
To me--for me--you are the wise-woman on this Forum Lea. You always have been; you continue to be. You know that you have the absolute love of us all.
I do know that people who wish to comfort you with their own particular belief system mean only to comfort you, but I do believe they need teaching bad, and you are the one to do it. Someone who is dealing doesn't need our own particular bible study classes heaped upon their head; that can only add to their cross. Because yeah, if I believed there was a heaven where I could play canasta and WIN I might be more comforted in dying, but you know, NOT TODAY. TODAY I will fight for another day right here with those I love.
Of course, you can still have faith, yet be concerned about your future.
I bet that the majority of people who have cancer are afraid at some point in time, whether they have faith or not.
Even those who do go into remission are usually concerned about their cancer returning. No one knows for certain what their outcome will be.
You wouldn’t be human if you didn’t face the reality of your specific situation.
You’re a realist. You’re incredibly intelligent. I admire those qualities in you.
I’m praying for the docs to LISTEN and ACT for your benefit, friend. For the wisdom they need to diagnose you correctly. For the floodwaters to recede from your shores already!
Please, when you have a chance, hand the phone to Chuck, and have him read some of this thread and know how much you are treasured here. Tell him to tell your kids. You’ve helped save so many people here from the brink of insanity. We are so grateful for you.
I will be back here, checking, and re-checking for your update.
Will most certainly be praying for you. Many, many hugs sent your way! 💗