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.
Firstly, my wish for you is for a full healing and recovery and continued strength...and in the interim, you really deserve to be able to express yourself freely without having to hold back or justify yourself to family or anyone - I hope you receive that!
- sending love and wishing you a peaceful weekend ~
That first bite of warm toast, having an afternoon off to watch an old b&w movie, climbing into my comfy bed with an extra wooly winter blanket at the end of the day.
Lea, I so hope you are doing OK today. Maybe you have 3 tiny sparks of joy too. I hope so. Many hugs.
Sorry that you have a splitting headache. Hope it's gone soon.
May God send peace and comfort to that mom.
Thinking of you, today. May God send relief from all of these crazy side effects.
You are treasured, here.
I would have been crying reading a letter from the donor’s mom.
It’s so beautiful for Chuck to be able to read moving words from this mother about her precious first born son.
I wish more people would understand the need for organ donations.
Thank you for sharing this heart warming news. I know it will inspire others to consider donations.
Sadly, we take so much of life for granted.
Often times, we learn the most from people who have been through the darkest days of their lives and somehow they manage to be compassionate towards others in need.
The donor was a fourteen year old boy who was his moms first born child. One of 3 siblings. Full of love and light and spunk. His young life was taken way too soon but his mother was so happy to hear that his liver was used to save Chucks life. I've not seen him cry the way he did when he read that shocking news. Who ever expects to hear such a thing?
J's mom gave us her contact info so we can stay in touch. It was a blessing to get this letter, and to hear from her in such a positive way.
Donate Life.
Gosh, headaches and dizziness together…
I’m so sorry.
Sending lots of hugs and saying prayers for relief soon.
Love you, b
When I told him I wanted a Cold Stone cake bc this might be my last birthday, he said it wasn't WHAT I said but HOW I said it that led him to think I was planning my demise. Really? 🙄
Nhwm, there is nothing to forgive. It's important to me that people understand where I'm coming from with all this. That I don't feel antidepressants will fix this situation for me. But I'm willing to try them to see bc it's important to my loved ones. Yes, they are strongarming me......but IF Paxil will help, I'm willing to try. Ty for being so supportive of me since day one xoxoxoxo.
I put on the Scopolamine patch this morning and immediately got a splitting headache. No improvement in dizziness, naturally. Ugh. But then again, I wasn't expecting an improvement. It lasts 3 days but I'll likely remove it tonight if I notice no difference.
I am so hoping today will be a better day for you. The past few days have sounded pretty rough. Prayers everyday day for you pretty lady ❤️
Then the Meclazine suggestion from Dorktor C... I have no words.
Thinking of both of you this morning... xoxo
But seriously, I'm sorry that your Chuck doesn't get it. Or maybe he does and he's just being a man. Remember men need to fix things. I guess he thought he was fixing something by suggesting psychiatry. My DH is the same way.
Don't take the Paxil if you don't want to. I wouldn't take anything to placate someone. If you've decided it may help, then yes. But I wouldn't let someone strongarm you into taking another pill with more possible side effects. Mind you, I'm guessing nobody could strongarm you.
I get so frustrated on your behalf Lea. Still praying.........
One was the iInability of an husband to hear his very ill wife talk openly about her symptoms and illness.
I think it is not rare which is unfortunate.
I know that knowing that doesn't make it any easier for you at the time you are going through it. Maybe later.
That SW definitely deserves a smack. It's absolutely horrible denying you the right to be angry about your disease and all the cr*p that followed, blaming the steroids...
And denying you the right to be angry at your dh and dd going behind your back. For me it is the going behind the back which would bother me the most. It feels to me like taking away your personhood - objectifying you.
As for Dr C - incompetence!!!
How dare they!!! You deserve much better than that.
Hugs to you.
I can understand why you feel as you do. You’re a realist. It’s one of the things that I most admire about you.
I suppose that it’s difficult for your family at times. In their own way they are looking for a way to navigate through the aftermath of your cancer treatments.
You have been through so much. I can’t imagine what you’re going through, both physically and emotionally. So, if I occasionally fumble, misunderstand something or say something incorrectly, please forgive me.
You have been so brave right from the start of learning of your cancer.
Anyone going through something this extreme is going to have their moments of grief and frustration.
You’re entitled to all of your emotions. I hope Chuck will realize this.
RD, I hope the fiasco w the airlines doesn't put too big a damper on your kids/grandkids trip. Happy early Birthday to you.
Guestshop, ty. 😁 I know dh loves me and blah blah, but he's right at the top of my chit list at the moment, Grrrrr. He sux at being both a patient AND a CG these days 🙄
Golden, this sw was busy saying "I hear how angry you are, and you have that right..."...(gee thanks sweetie) but then questioning where the anger was coming from? The steroids, could THAT be It? Surely it cant be the disease and the complications from the treatment and the fact your dh and dd just blindsided you in front of all of us? Nah.
My older daughter was due to arrive here tomorrow afternoon but she is in the unfortunate group of having her flight canceled so she is flying to Savannah and renting a car. Her 9 and 7 year old girls are helpful with their 9 month old baby brother but it's alot. Her husband is coming a few days later due to work.
I continue to be impressed with how able you are to advise others while feeling ill. That is a unique quality. Just hope something better finds its way to you all.