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.
It's amazing to me to see how even in your darkest struggles that God is still using you in a mighty way. That is a sign of a true warrior.
Please know that you are loved by so many of us.
God knew we would have anxiety and cares. That's why He said to cast them om Him. And I do - again and again and again.
“Be still and know that I am God.” Psalm 46:10 is my nightly prayer - many times repeated.
"...He will not leave you or forsake you. Do not fear or be dismayed." - Deuteronomy 31:6-8 \. Again He knew we would fear and be dismayed. Sometimes it is very hard/impossible not to be.
"I am the LORD that healeth thee." Exodus 15:26 -
Praying blessings upon you, lea, and miracles.
I have very unchristian thoughts when people act like faith is a magic pill that wards off all fear or sadness… but only if you have enough of it.
I know the idea is to build people up, but it is incredibly one-dimensional and flattens God out. Why do people want to make him so small? He is not just a glorified human, knows our hearts inside and out, and doesn’t trivialize who he has made us to be.
I have 2 favorite verses… one is “be still and know that I am God.” The other is from James… “Lord, I believe. Help me in my unbelief.”
Belief, by nature, isn’t fact. If God is the creator of all things, he is already well aware that we struggle with doubt and fear and is ok with that.
Take heart, my friend, we are with you.
I’m glad that your DD was able to visit with you. She’s a nurse, right?
Fawby..... omg I'm laughing here. But I'm not wearing socks LOL
Bandy, there are tons of reasons a person can develop bppv not just one! Neuropathy is having no feeling in your feet combined w bad hearing and bad eyesight. A loss of 3 senses is a recipe for bppv of ever there was one bc you don't know where you exist in space
Dd came to visit... she lives 5 minutes away.
Thanks everyone for the love. I'll stay in touch
One day at a time, sis. You're doing it. Walk the path. I'm checking in nearly every day to see how you are. You have a lot of support here so lean on it whenever you need to. 🌼💛
Hospital stays are hard, no matter what the circumstance. I’m sorry that you have to be there!
I’m praying that they treat you well, and that they can figure out all that’s going on.
My staff doc is a cancer survivor who went thru chemo, so she was empathetic to my situation. They can't release me till I'm on my feet.
Staffhere has been great in every way, going above and beyond. TG I came here instead of the Er that tried to give me the bums rush in Jan.
Will most certainly be praying for you. Many, many hugs sent your way! 💗
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.
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.
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.
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.
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!