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 can’t imagine how hard this must be for you. Lady, you have been through hell and back with your cancer and so many other complications. My heart truly goes out to you!
I certainly hope that 2024 will be a turning point in your life. As always, I wish you peace as you continue on in this challenging journey.
Sending a bazillion hugs your way!
And don't get me started on the runaround you're getting with your eye issue. I know you're beyond frustrated as are we all on here for you, as we care about you and want only Gods best for you.
While I do pray for you and your healing every day, I feel like I need to kick it up a notch and I will, and I'm believing others on here will join me in praying with fervor for your total and complete healing once and for all as this has gone on way too long already.
Sorry for the step backwards. I truly hope you are able to feel up to spending holiday time with your family . (((Hugs)))
I don't even know what to say anymore except I'll pray and pray and pray for you even harder.
(((Lea)))
You are an inspiration to me because you keep fighting against all these issues that come up. And you dont sugar coat any of what you are going through.
I wish I could give you some of my life force so you could beat these side effects from the immunotherapy.
Sp, you and I are of the same mindset: you can sugar coat a turd but it's still a turd. As a New Yorker born and bred, I sugar coat NOTHING. 😁 I wish you could give me some of your life force too, I could use some more piss & vinegar these days.
Way, oh I WILL spend time with my family this Christmas if I have to crawl into the family room on all fours. We're making Fra Diavolo with fish on Christmas Eve bc DDs fiance the cop is working and she'll be alone. Chuck will cook of course, but hes happy to do it.
NHWM, every year I say I hope the new year will be better, and every year (since 2019) has been markedly worse. This year I'm saying NOTHING so I don't jinx things even more 😁 I'll be grateful to make it to 2024 and then to my DDs wedding on Nov 4. She's getting my hair and makeup done so I hope my eyes are cleared up so my pure WHITE eyelashes can be mascara-ed up for once. My hairdresser was saying "oh you poor thing" about my lashes and brows and I laughed to myself.....honey, those are the LEAST of my problems, if you only knew.
DD the RN called last night and thinks Dr C was mistaken to cut the IVIG dose in half and that's what my body is responding to. If I never hear those initials IVIG AGAIN it'll be a day too soon. Potions and guesswork and "stabbing in the dark" is ENOUGH already. She also said she and her fiance are coming over to help Chuck put up the giant Christmas tree and ton of ornaments this year! Thank God for family.
I don’t blame you one bit for not sugar coating anything. I despise a ‘Pollyanna’ attitude.
I agree with you about not caring what color your eyelashes are at this point.
May God grant this request.
And give you relief.
And those dang docs some WISDOM, already.
Big, but gentle hugs to you.
We're having my DD and her fiance over on Sunday for Fra Diavolo (shellfish with spaghetti in spicy spaghetti sauce). Then the family on Christmas Day afternoon for chicken cacciatore in the crockpot I can throw together easy peasy. All the decorations are up and now the gifts need wrapping.
What's everyone's plans for the holidays?
We are going to sis's this year for Christmas. It will be first time getting together with fam since before covid. My family brings up a lot of bad feelings for me so I am approaching this with great trepidation. I'm only going cause I think it's the right thing to do. Facing my fears and all that psycho babble. I hope I'm not making a mistake. We shall see.
I've always wondered when I feel a certain kind of way around certain people is it their fault or weakness on my part? A bit of both I'd wager. Anyway............
Happy for you Lea!
If you go to Christmas and feel upset at all, put Plan B into action and vamoose OUT of there with a headache or the symptom nobody ever wants details on: diarrhea 🤣😂😁
Thank you NHWM and cwillie 😍
This has been a long standing thing. Since childhood actually. I never put two and two together until I became an adult. I always thought it was my own insecurities at play and there is that. But since I don't feel this way around everybody then there is that too.
Not to go on too much but I've always thought my family were mean spirited. I always feel scrutinized around them. Never a pleasant feeling. I plan on dressing casual, minimal makeup and they can accept me as I am. In the past I always panicked cause my sis is really high on appearances. But I'd rather err on the side of looking neat and clean. Not looking like I don't give a sh*t but also not looking like I care too much. Ya know what I mean.
enjoy your Christmas Lea!!
Our son and his wife and DD and her fiance are coming with cat and dog in tow .
Turkey and trimmings since we weren’t altogether Thanksgiving this year .
Gershun, this is your family that makes fun of your being "sensitive"?
Can you go and pretend you're "an anthropologist on Mars"? (That's a quote from an Oliver Sacks piece on Temple Grandin)
Don't engage; watch, take in their behavior towards each other and you. You might get some insight.
Honestly though, I've always felt like my family don't talk to each other. More like at each other. Like I said, it's been a few years now. We're all getting older. My glam sister is getting long in the tooth, as am I. Maybe she's mellowed. I'll try to go into the evening not expecting the worst but I won't hope for the best either cause that's where I always get myself into trouble, and end up depressed for days afterward.
Watch and learn. I'll think of you Barb while I'm doing so. :)
Just saying............
Your family sounds like mine . I don’t do holidays with 3 out of 4 siblings . We for the most part went our seperate ways since my parents both died .
Anyway , I resorted to playing the wall flower most of the time , or busied myself in the kitchen if the holidays were at my house, which was most of the time ( to please my mother ).
Mine was due to my mother pitting one child against the other . And some of my siblings are very competitive as well , comparing our children etc. I would never play those games. I never cared what they did . It bothered them that I did not envy them .
I guess it is pretty common for some competitiveness in families. I don’t get it really . I don’t see the point in trying to put another person down. I don’t understand why that makes them feel better .
This is ONE reason out of 1000 I always felt under extreme pressure during family functions, and hated them. And knowing no matter how good I looked, it wasn't quite good enough or thin enough for my mother.
🙄 I'm truly glad I no longer feel compelled to clean like a maniac or dress up and do my hair and face like a glamour queen or "hold my stomach in" as I was taught since 5 years old. Those days are over and now what you see is what you get. I'm just grateful to have made it to SEE Christmas this year!
After this nightmare with our parents is over don’t think any of us will be keeping in touch. We’ve moved on.