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.
Also great to you see you supporting others too while going through this.
Blessings & peace.
I do hope the feeling both you and Chuck had that you weren't going to live a terribly long life is WRONG but OTOH, it is what it is and you are making the best of every day and that's what we really should all strive for. I could definitely improve my life if I did more of what really matters to me. I've tried to cut out things that don't matter but still have trouble focusing on what I really want to do. Get bogged down in the shoulds instead of the wants.
Have a great day and may your increased energy and feeling more normal continue!!!!
I really enjoy your posts and often think of you and wonder how you are doing.
“[Jesus] didn’t make it easy for himself by avoiding people’s troubles, but waded right in and helped out. 'I took on the troubles of the troubled,' is the way Scripture puts it. Even if it was written in Scripture long ago, you can be sure it’s written for *us*. God wants the combination of his steady, constant calling and warm, personal counsel in Scripture to come to characterize us, keeping us alert for whatever he will do next.”
-Romans 15:3-5 (The Message version)
I so love what LavenderBears said about you. I know you must know, for every private message of love you get, telling you how you have touched someone with your advice on Forum, there are 100s more who don't even know of this fight.
I sure don't know anything about immune therapy, so ahead of my own times when I practiced in horse and buggy days. But I would kind of think you are right. It is kind of like you get it, all the warriors come out and raise a whole lot of heck, and then they calm a bit and you are ready for the next infusion. So gather strength. It sounds to me like it is trying to work real hard for you.
I so seldom used to come here twice a day, but I am now just a regular when I am around throughout the day to check in on you and on all our BEAUTIFUL COMMUNITY who stand with you now.
Doing the happy dance for you!
Fawnby, thank you for thinking of me.
LavenderBears, thank you for posting such a lovely comment. I'm truly happy My posts have helped you and your dear mom.
RapidSwimmer, I can doggie paddle. Does that count? 😂🤣 Thank you for leaving me such a heartwarming comment and for stopping by here for updates. It buoys my spirits to know how much you all care about me.
Today is day 12 since my infusion. The next one is a week from Thurs. As of Saturday, I was sweating and dying of thirst and chilled, fevered, just having so many symptoms layered on top of others that I felt like I was in a fugue. The nurse sent me for a blood test to see if my thyroid is still working due to the ridiculous temperature changes my body was experiencing. Well as of yesterday, most of those symptoms cleared up. No fever, much fewer temperature plummets and rises, thirst has calmed down, and my system seems to have as well. Idk if this is how immunotherapy works? That my body is super high pumped and going berserk for 10 days, then it calms down. Or if more odd symptoms are lining up as I type. I'll be sure to ask the oncologist when I see him next week. I'm thinking maybe it's the cycle: 10 days for my body to attack the cancer, kill off what it can and expel it, then 11 days to calm down and regroup for the next infusion.
For the first time in over a month, I'm dressed and sitting in my chair in the living room for the past 5+ hours with no plans to back to bed 😁 Leaning against an ice sheet thing to keep my back feeling good, but otherwise not feeling or looking like a "patient". I even blew out my bangs this morning! The rest I let stay curly/messy. Honestly, up until today, I didn't care if I had hair on my head and that it was plastered down on my scalp like a helmet. And today I'm fiddling with a curling iron.
It's pretty sweet how things can look up from one day to the next.
Am hoping to see you on here for a long, long time. Praying that every treatment makes you stronger and healthier. You have made a difference in so many people's lives. You made a difference in mine and my Mom's and I thank you for that.
I had left the site, after my Mom passed - but checked in from time to time. Always inspired by you, Lea.
Blessings to you to get healthier each and every day.
Sending love and prayers from Lavender Bear.
Just want you to know, I come here and read almost every day to see how you are doing. I'm still praying for you. Hoping the pain isn't bad and Chuck is still doing well. I didn't realize how bad you were. I'm so glad it's so much better. I pray you get through all this and live a long happy life. I know you don't know me but I feel like I do know some of you who have helped me and I want you all to be well. I don't post much but want you to know I'm thinking about you.
“I [Jesus] have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”
- John 16:33
LL, per your last post... no experience, IQ, book knowledge, status, opinions, popularity, etc. is as clarifying as staring physical death straight in the eyes.
Continued prayers for your daily strength and peace xoxo
And that sentence you pulled from my quote earlier was exactly why I posted it… that one line reached me so deeply.
Great minds and all;)
Please don't compare yourself unfavorably to how I'm handling all this. I've had a long time, like 10 years, to process my early demise bc somehow, I've known it would be my situation. So did Chuck bc ever since we met in 2005, he's had an unnatural fear of me dying. True story. I think both of us "knew" inherently that my life wouldn't be a long one. I've spent the past decade reading every book I could get my hands on about "near death experiences " to the point I removed my FEAR of death. Not meant to say I "want to" die or any such thing. Just that I managed to take the fear and horrible dread out of the equation. Which makes life much sweeter when such a huge fear is dealt with head on.
Colleen, everything is permanently affected in my thought process since this dx. I will never think of things in quite the same way again. It's also opened my eyes to how family members feel when a loved one is dying, and the "child" wants to care for them at home but hits resistance with a spouse. There's 3 sides to that story, not just the side WE hear about where the spouse is super angry at the other who wants to care for the sick parent who's terminal. The 3rd side is from the sick parent. I'm fortunate to have Chuck here w me and lots of support from kids and most stepkids. Not everyone has that and they're alone to face such a thing, which has to be very frightening. Also, I've been posting a lot less comments due to nodding off and just focusing on posts I find to be of interest, not volume of replies.
Before you even posted this news to us, I had a weird feeling that something was wrong. Maybe it was a little bit of a different tone in your replies, or that there were less of them, or a combination of the two. You were still helpful, of course, but as a reader becomes familiar with an author, especially after a few years, the reader can recognize a change that might have been imperceptible to others.
Saying a prayer of thanksgiving that you’re still here with us! 🥳
You probably don't need to hear this from me but you are an inspiration. I continue to pray for you every day.
There is power in prayer and strength in numbers, so hopefully we can be your strength when you are weak.
Today is 10 days after infusion 1. I was up in the family room for 4.5 hours today with my son and grandson. The back pain is manageable for the most part, but I'm lying down again now. I'll take it. The pain in my left side is 75% gone. I went from loudly wincing in pain with EVERY movement to grunting a few times a day. I take an oxy a day, most days, thats it, and cbd gummies. My son was shocked at how good i look (😣) and how mobile I was, 10 days post infusion. I had to go back to Jan 15 to recall JUST how horrible things were to see the improvement today. Thank God.
I'm sweating, fevered, chilled, no appetite, exhausted, dying of thirst and having other odd side effects suffice it to say which means the cancer is being attacked, killed, and carted OFF as waste thru my profuse sweating and infrequent urinating. The human body that God created is an amazing thing. I'm getting to bear witness to just HOW amazing right now. That a wretch like I was a month ago is even alive, never mind mobile and in a lot LESS pain is nothing short of a miracle right there.
Even teeny tiny miracles count, you know. I think I'd better keep my eye out for another dime from dad. He was right in the ER that evening.....things would be okay. And with God's help, I'm keeping that attitude moving forward, one day at a time. Tomorrow may be a horrible day, but today was a great one.
I have a waterfall (large rock one cascading down a hill) in my back open space area. A beaver came along about 11 months ago and damned up the water to where it fell below the motor and burned it out. Just 4 days ago the waterfall is back up and running again! I can lie here with the window open (65 degrees) and listen to the soothing sounds of all that water rushing down the rocks. That makes me happy.
My grandson broke one of my Willow Tree angels today. I told my DIL to just throw it in the trash. Who cares?
I think cancer (or facing death) brings a new perspective towards life with it. Don't sweat the small stuff. Be kind. Enjoy nature. Food is not as important or wonderful as I've spent my whole life insisting it was. A super clean house is not as important as I've insisted it was all these years. The dust will still be here tomorrow but our loved ones may not be. Even if you "don't know what to say" to a friend or LO whose been given such a diagnosis, find SOMETHING to say bc this isn't about you or your awkward feelings. It's about someone you care about who will benefit from your phone call, more than you'd even realize.
Thanks to all of you who have chosen to say "something" to me, and for listening to me ramble. I'm sure there will be plenty more epiphanies to come, and plenty more long winded rambles too 😁
You keep posting when you can, and we will keep praying.
This speaks to the power of prayer and the beauty of faith. W/o faith and prayer, and a terminal diagnosis in hand, there would only be anger, fear and misery to contend with, no hope at all. The desire to end my life NOW would be uppermost in my mind, but it's not. No matter what happens with treatment, when I DO die, I know a richer afterlife awaits me bc life is eternal. Amen.
Ty for posting that Hope
2 Corinthians 4:7-9
"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."
Same verse in The Message version:
" If you only look at us, you might well miss the brightness. We carry this precious Message around in the unadorned clay pots of our ordinary lives. That’s to prevent anyone from confusing God’s incomparable power with us. As it is, there’s not much chance of that. You know for yourselves that we’re not much to look at. We’ve been surrounded and battered by troubles, but we’re not demoralized; we’re not sure what to do, but we know that God knows what to do; we’ve been spiritually terrorized, but God hasn’t left our side; we’ve been thrown down, but we haven’t broken. "
Some of my favorite songs are by Don Moen, and are on Youtube.
God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way, He will make a way....
More prayers, for Chuck and Lealonnie.