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.
Golden, I've always had mustache hairs which I HATE. Once I used that Aussie wax crap from 25 yrs ago and quite literally nearly ripped off my top lip! That's when I started using hair remover cream that wipes OFF w a tissue. Now those black hairs are white and easily removable, now that I don't even care about them anymore. Strange how priorities ebb and flow, isn't it?
Alva, my hair is red bc Loreal said You Are Worth It decades ago. I went w the flow. Under all that red hair is no doubt 100% white hair. One time I bought that spray in gray color and went gray, posted a photo on FB, and everyone was flabbergasted. Chuck blanched when I walked into the living room, too, he hated it THAT Much. Ridiculous.
NHWM I'll say FTRS today, RS meaning right side bc the discomfort is ramping up over there. I pray it's not my liver swelling up again, but it likely is I guess. 2/23 was my last immunotherapy IV tx, so.......
I will pray that it’s not your liver. My gosh, you are going to know more than you ever wanted to know about the human body after going through all of this!
No wait, I forgot…
This isn’t your first experience in learning about our human anatomy. You learned a lot by going through Chuck’s challenging health issues.
You and he are certainly learning the hard way. It would be a lot simpler if you could watch a documentary on the topic.
On the subject of fools, all I can say is when people send me long messages that don't take the cancer victim's feelings into account, they make it all about THEM and it's hard to swallow for me sometimes.
For example, I have a childhood friend who thought it'd be a good idea to send me explicit photos of a huge melanoma wound that was mishandled, and looked like 3 lbs of raw chopped meat. As if this would somehow help me? 😑 This guy is dying to boot, so like Lyn Eib says, "if you have a cancer story to share with me, make sure it has a good ending or stop speaking immediately please."
Instead of trying to figure out who's "foolish" here, let's focus on the wisdom scriptures of today instead.
For today, during my own times of foolishness (which have been many), please replace that behavior with hard earned wisdom, Lord.
Your story is compelling. May the road ahead be less difficult.
And then Dr. Medina at UC on the 18th.
Somewhere there was once talk of a PET scan. I don't know how you do a "Frank and Honest" without information about what reaction you have from your treatments.
And isn't our dear Dr. C a bit on a pessimistic end of the MD-continuum? Usually? I guess I just wonder how he can do too much "honest assessment" without the followup scan.
Got my calendar marked, anyway.
And hoping the new popup pain is gas!
That thing about people who write long diatribes that turns out to be all about them? We nurses used to have names for that group. We called them "Those-who-come-to-steal-the-thunder". There would always be the ones who wanted drama and a focus of attention on themselves. Entertaining for staff; for patients, not so much.
The pain in my liver area/ right side is quite sharp today from time to time. The past few days my right foot is painful and swollen, too. Right away dd said blood clot but no, none of those signs exist tg. Naturally my mind swings to uh oh, more bone cancer but idk. I realize there is so much more I DON'T know which leaves me feeling uneasy, to put it mildly. I want to scream.....WHATS NEXT? But who's answering????? Nobody.
This is a day that leaves me feeling hopeless and like there's no good option for me out there. I was recalling something today...When I was 30, an allergy doc tried to immunize me against mosquito bites bc I am horribly allergic and carry an Epi Pen. He used a formula of 1,000,000 (1 million) parts venom: solution to immunize me and I PASSED OUT. This is how my body reacts to things it doesn't like. Like a little witch with a B and stamping her feet like a baby, throwing me into chaos for long periods of time to recover. This is what worries me about my "treatment options".....what in God's name will the next one do to me? 😶 Dr C said all along, your body will either accept or reject these infusions....they will either work or they won't, and your attitude has nothing to do with the outcome. It's all up to your body. And judging by past history and current conditions, my body isn't cooperating.
I'm not giving up or anything, just feeling beat down and tired and weepy today. Trying to avoid pity parties and Why Me's today, but the weather in snowing in spring (literally) and dark like my mood.
Tomorrow is another day though.
That is pretty wild about the mosquito venom! Your body is very sensitive in some respects and we just never know how we're going to react to anything. Life and our health is just full of surprises.
That stinks that Dr C is a first class jerk. Guess he missed the class where they talked about bedside manner! Well don't let his crappy attitude bother you too much.
Wishing you all the best. May your pain subside and all other issues improve as well.
Hope you sleep well tonight!
My dd always says "God knows what He is doing."
I say "God has a plan."
It's a trust issue and that is huge and difficult in your circumstances. But I know that I know that I know that He does not want you to feel hopeless.
Praying for hope and peace for you today, angel kisses and a good night's sleep. (((((hugs)))),
The first when you were born and now April 4th marks your second official birthday since according doctor douche you should have been dead by today.
I wish all of us could line up to give your doctor a swift kick in the ass in honor of your second birthday.
I'm saying extra prayers for you tonight.
Happy Birthday to me,
Happy Birthday to me,
Happy Birthday Dear Lea,
And screw you to Doctor C! 😂🤣😃
Sending a bird to poop upon Dr C's head 🐦⬛💩
Gershun, ty for the prayers and Bandy/Beatty the hug which IS all I need right now. Chuck has been so good to me today, and I know how awful this is for HIM too. He feels all along that Dr C wrote me off. Gave up on me, the "dead woman walking". He never has that kind of feeling about people, which is how he rolls. Hes a big teddy bear that finds the good in 99.9% of humanity. I trust Chucks instincts a lot, btw.
Ty for links about how crying is good.....which is nice bc I'm a cryer and that's not likely to change anytime soon. 😂
Again100 and Golden......odd thing about Dr C I didn't mention. He gives me and DD (when she's present) these little hugs that feel forced and insincere. An Uncle Creepy vibe is what he gives off. Last time at the Skyrizi debacle, he leaned into DD for a hug and she visibly shrunk back from him. Ha! Ugh.
PB, you always make me smile with your words. They are like a warm hug on a cold night or a bowl of Wedding Soup for the soul. You rock g/f. 😘
Amazingly, we've passed the 1000 comment mark on this thread in 2 months time which blows my mind! I can't thank you all enough for being with me on this journey, it means a lot. "Internet strangers" who come together for support mean so much bc I don't feel alone with this burden. With you guys helping me cope, talking me off ledges, listening, all of it......its super helpful and I love you all!
I was preparing boas and cake and glitter balls to join you in the party, but then I saw these comments and laughed right along with you. Dr. Douche, indeed!! I have had a few of those. They are the worst!
Hugs to you.
I think you are the only one who is surprised by the amount of comments on your thread. None of us are surprised by the outpouring of support. You are well loved by everyone.
We will continue to support you on this journey of FTF and everything else.
I have often wondered, if I suddenly discovered that I was facing serious health issues, would I reach out to AgingCare forum for support?
I was able to reach out to this forum about my mom with Parkinson’s disease and my husband when he was diagnosed with prostate cancer, but I don’t think that I could for myself.
At least, not initially and maybe not ever. I would need time to process it privately. I do know that I would have my husband’s and daughters support which would mean the whole world to me.
I really don’t think anyone can anticipate exactly how they would feel until they are experiencing it firsthand.
I’m glad that are able to share this with us. I am very happy that you are able to find comfort from Geaton’s scriptures and other messages of encouragement and love.
If I am truly hurting or horribly frightened, I do the opposite, I find it overwhelming and difficult to speak with others. It isn’t always easy to be so vulnerable. I will retreat.
I value being with others but I also cherish time alone and take time off for myself when needed.
We are all different with our own individual needs. I admire your courage and honesty in sharing your pain and suffering.
doctor
my Dr father used to make this comment.
I’m sorry you got That One! Hugs 🫂
For He shall give His angels charge over you,
To keep you in all your ways. Psalm 91:11
Personally I would be crying a river for everything I love that has been discontinued. Wishing you a good day.
https://www.amazon.com/Island-Soap-Candle-Works-Hawaiian/dp/B018YL8VBG?th=1
What brand? I will hunt it down for you. Although I've become mostly allergic to wearing anything scented, I still love fragrances... they center my mind on comforting feelings and great memories.
"For the Lamb on the throne will be their Shepherd. He will lead them to springs of life-giving water. And God will wipe every tear from their eyes.”
- Revelation 7:17
I love the thought of God Most High personally wiping away my tears with His own hands, the hands that "knit me together in my Mother's womb." (Psalm 139: 13). No one knows me like God does.
Thanks for trying. I have a flag on eBay to notify me if someone is selling the body wash, but no luck there either. I've tried to find this for 18 months now but cannot. The body wash is a similar fragrance but much foamier.
So determination and attitude can go a long way.
I love Italian wedding soup so that dinner sounds good to me. I love Italian food. I couldn't be Italian so God gave me two Italian Aunts. One on each side of the family.
Everyone needs a good cry. It cleanses the soul.
(((HUGS)))💞
Telling a person their attitude determines their cancer outcome suggests they are at fault for their disease, and able to direct the outcome IF ONLY they'd done A B C or D. This statement is not intended to cut you down, just to underline how healthy people have no clue about how words affect cancer patients. If stage 4 cancers were curable with diets, attitudes or frames of mind, there would be no cancers left on earth, never mind affecting 50%+ of the population.
"He gives me and DD (when she's present) these little hugs that feel forced and insincere"
I think that they all have to attend the same class or two on faking empathy🙄