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.
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! 🥳
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.
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;)
“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
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.
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.
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.
Doing the happy dance for you!
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.
“[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 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.
Also great to you see you supporting others too while going through this.
Blessings & peace.
Hope Chuck is pampering you for Valentines Day! 💐
OAINF....thank You!
Again100, yes a roller coaster indeed. Had I waited any longer to go to the ER, idk what would've happened. It was a fluke they ordered this CT scan! All they were doing was bloodwork! By God's grace, that test showed elevated DDimer (blood clot possibility is high) so THATS what prompted the scan. Otherwise they were sending me home, bent over in excruciating pain, telling me I had a "muscle pull" on my left side after poking the area ONCE thru my clothing! No pain meds, nothing. I saw my PCP 3 days later, had tests the whole following week, then saw oncology the following week. Anymore, everyone gets the bums rush in the ER, its not just the very elderly like I had thought.
Its hard to figure out what "you really want to do" especially being your moms caregiver for so long. We lose who WE are while ministering to others. How's mom doing tgese days in AL? Adjusting well I hope.
JoAnn, immunotherapy was my only choice......it or die within 2 months. I'm relieved the option is available for certain cancers like melanoma, where there was NO treatment a short 10 years ago. Imagine that? 😣 The oncologist said he has a patient who had a melanoma excised from her ankle and TEN YEARS LATER it went systemic and caused stage 4 metastatic cancer!! Apologies if I've already mentioned that. Cbd gummies make me a little scatterbrained. Or a little MORE scatterbrained, I should say. I'm the gal who's doing 12 things at once all in some state of unfinishedness 🙄.
I'm waiting to feel a bit better to start on my DDs wedding bouquet made from vintage gold and silver brooches and jewelry. I have to be able to sit at the kitchen table for long periods of time to pick out the jewels, lay them out, then get them adhered to the treated and painted 1/2 Styrofoam ball they will pin/glue into. The whole thing is time consuming as all my jewelry art pieces are, but THIS one has to be perfect and special and dazzling 😂😁
GEaton, ty for the scripture du jour.
Llilmelba, thank you for your kind words.
Im off to eat dinner now. I slept a lot today, but it's been a good day.
So glad you have been up and around. My prayer tonight will be especially focused on the strength to work on that bouquet!!!
- Psalm 130:5
Isn't it quite amazing, that whole ER visit with the prod at your ribs and then "You have likely pulled a muscle so take two aspirin and call your doctor in the morning". But for good luck and the DDimer you would never have known. I think this is SOOOO common and a warning to all others.
When I went to the ER at night some 8 years ago with not SEVERE but very DIFFERENT pain in my right gut, I finally went in because I thought "I don't know what this is but I do know in 70 years I never had anything like it, and what if I sit home, burst my appendix, get relief, don't go in and die of peritonitis for no good reason at all." Once in no one had a clue. A negative scan they thought at 4 in the morning. But hey, maybe that one ureter was a bit bigger and maybe I passed a stone because I had an ache in my right back as well, and who knows. So they were getting ready to pack me up home. Then a radiologist who was an expert at scans had to come in on emergency call for another patient who was going to need emergency surgery, so my doc passed my scan in front of him and he knew at ONCE. Oh, yeah, he said, there's a diverticulitis. It's in the transverse bowel--always more unusual for find up there. Bet it hurts around her belly button. Sure enough. And I got the right meds and 10 ugly days later I was fine. But otherwise I was just ready to be packed off home. I wouldn't have returned in all likelihood because I avoid docs and hospitals like a plague. Ha, many old nurses do. But it just seems to hit or miss in medicine and diagnostics. I am so thankful you had that blood work.
Loved your valentine's day story. We two oldsters, N. and I awakened to "What!!!! It's VALENTINE'S day again!!!!" We once always got one another tulips because it was the first thing we always bought when we got a room in France when we were younger. Alas, we 80 year olds are down to memory and a kiss (and love alone).
Have a good day Lea. I love reading your daily thread here.
Lea, so glad you had a nice Valentines. Hubby and I, like Alva, just kiss and wish each other "Happy Valentines Day".
Sleep is good, so get all you can. Helps the body heal. ((Hugs))
Emma, thank you on all fronts. Your mom was fortunate not to have had that stage 4 melanoma metastasize. My issue is that my tiny unstaged melanoma did, and now the aggressive cancer is all over my body. How long I live is contingent on how successful the immunotherapy is at shrinking all the tumors.
Its snowing buckets today after many springtime days of 60degree weather, plus it's 18 degrees. Good sleeping weather. I am sleeping a LOT lately which is good for rejuvenating I guess. And I just made a rather sizeable eBay sale while doing so. I wonder how Chuck feels about driving to the PO in my car Which has spotty heat? God knows when his will be out of the auto body shop?