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.
After reading backward now fear it grew off a comment from me wondering whether Dr. C is the one to have an honest sit down talk with (before a PET reading)--given he's not your favorite, and usually pessimistic. Everyone seems now to have piled on from there.
Dr. C. is imho one of a "type" who can no longer hope. He compartmentalizes. He's tired. He needs rest. Retirement. He looks at your case from his exhaustion. SO....
I think sitting down for a "hard honest talk" without NEW evidence of where you are (PET) may be just another visit to Dr. C's House of Doom. Only the PET will show any truth here in terms of improvement.
I guess I am alone in wanting the PET. I would not WANT, but would NEED now to know where I stood if there is new pain.
We are all different in what we NEED. I myself couldn't keep the fear at bay without the scan. That's just ME, and you must do YOU.
I happen to believe in the truth delivered straight, but I am also a believer that we in medicine know a lot about statistics, and patients aren't statistics. There's "your truth, my truth, and THE truth" and I am no longer sure of the latter.
Last night, on my favorite podcast (Terrible, Thanks for Asking), a young 22 y/o man with stage IV lung cancer prognosis of two months to live proved them wrong-- now in 6th year of experimental therapies. Are they easy? No. Is his life all about medicine? Yes. All about scans, often monthly, traveling, assessing? Yes. BUT he is alive, on a mission with goals. His choice. And it is a long time out from two months. And he is young now at 27 and not giving up. HIS CHOICE. He married. He raises money for all kinds of cancers. He is LIVING. Now. Today.
It is up to patients how hard they want to fight. It is about what they will pay for more time. I don't think attitude matters a fig, myself, if it is a false pretense that it's all good, and I will win and stay positive. I think the honesty THAT YOU HAVE ALWAYS SHOWN Lea, is more useful. It's a yo yo. It's a teeter totter. It's a plate of spaghetti sauce thrown at the wall. High moment here, low around the corner.
And a good cry (what someone here (Bandy?) called washing out the cortisol, is a good thing. Washing out all the words, Dr C's, mine, all the opinions and confusion. Even the bible verses. Clean like a baby drawing a first breath.
There's only one question here. How hard do YOU choose to fight, can you fight today, and what are the weapon choices.
It is the same in any war, including the Ukraine.
Are they not there saying "We want to fight for our country; send us the weapons?" Are they not up and down and all over the place? I had thought that country would have been gobbled up in week one. No one can predict how long a battle will go. No one knows which side will surrender.
I wish we had foxes. When we had our little country place they played in the meadow all the time. They SCREAM. I mean it is terrifying sound. So human. And they really are just warning off another. I love foxes. They used to take the dogs toys into the meadow.
Lea, have a good day. Remember, only you make the decisions for you. I know you know that. I know you have done that. You are allowing ALL the feelings, and you are honestly sharing them. You could teach "How To Do Serious Illness 101", and every MD should attend.
Sorry for the length. Won't do it again.
For today, however, I can go see my grandson and make believe all is well in my world and the day that shook my world never even occurred. Good days and bad days abound, today I'm choosing a good day. Washing out all the mind chatter sounds like a blessed relief.
Dr C is tops 45 years old. Way too young to be this jaded and tired, 😑. 20 years from retirement at least, odd huh?
I myself would skip another exercise in pessimism if you are already on the way to a second opinion at UC.
Anyway, day at a time.
Have fun with the grandson.
I think the good cry in the shower likely both helped release a lot built up, and saved on the water bill.
But this about the body wash? THAT'S bad news!!!
My grandson was all giggles today which brought me joy 😁, I'm happy to say!
I do now recall you saying that might be a suggestion for further treatment from Dr. C.
As you are discovering on this journey you're on, it's the little things that really do make a difference. And a grandsons giggle is just one of those little things.
Praying for more joy filled days ahead.
Just reading through the last 24 hours on this thread. Laughing and tearing up and so grateful that you are still here, celebrating your 2nd birthday! 🎉
It‘a a privilege to pray for you and celebrate and cry with you.
Wish we all could appear at Dr.D’s office along with you for that next appt. We could all give him the side eye and DARE him to be anything but NICE and HOPEFUL and just BETTER, already.
And
EffTF,
C.
I don't care who it is, just that the quality of care and manner is really good and what you, Lea, deserve!!!
Cx, the side eye....love it 😂🤣
Funky, do you have grandkids? I have 1 biological 2 yo grandson, and 7 more on Chucks side of the clan. But the only one I'm close to is the 6 yo who's dad cooks great meals for us bc they live locally. He reads at a 5th grade level and tells me if I miss a word or a page number. Plus he can recite double numbers up to 1 million from memory. I feel quite certain grandma will NOT be helping this young man with his homework in the future 😁😂🤣😃
And my soon to be 23 year old grandson and his girlfriend who live in FL are pregnant and so I will be a great-grandmother in July. I'm driving down at the end of this month for their baby shower.
When I was a young adult I prayed that I would live to be a grandmother and now at 63 I'm about to be a great-grandmother. How blessed am I?
Funky...wow, a great grandmother at 63! How awesome and blessed is that!? How nice that you get to go to the baby shower, too. I hope to see my other child get married soon and bring me another grandchild to hold. That's their plan anyway, so let's hope. She wanted to know what the grands should call me.....Nonni, Nanna, Nonni, Mimi. I said GRANDMA for petesake! 😂 I've earned that name and have no ego as far as my age or status goes, lol.
Today is Maundy Thursday.
"Maundy Thursday is the Thursday before Easter, believed to be the day when Jesus celebrated his final Passover with His disciples. Most notably, that Passover meal was when Jesus washed the feet of His disciples in an extraordinary display of humility. He then commanded them to do the same for each other.
What Does Maundy Thursday Mean?
Christ's "mandate" is commemorated on Maundy Thursday---"maundy" being a shortened form of mandatum (Latin), which means "command." It was on the Thursday of Christ's final week before being crucified and resurrected that He said this commandment to His disciples. Jesus and his disciples had just shared what was known as the Last Supper and he was washing their feet when he stated:
"A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another" (John 13:34).
What Was the New Commandment Given on Maundy Thursday?
...it raised the definition of love to a new and higher standard. Jesus sacrificially met His followers' deepest need — that of new spiritual life and the forgiveness of sins. He even loved His enemies, and He calls us to show love to those who don't appear to deserve it. Just as Jesus loved sinners "to the end" (or "to the max" John 13:1) when He had nothing to gain from them, so must we. The Bible says that there was nothing attractive about sinful mankind that drew Him to love us. God loved us while we were yet sinners (Romans 5:8). Salvation is not only a wonderful gift that protects us from the penalty that we deserve (Romans 6:23), the work of Christ also embues new life, grants spiritual strength, and motivates godly action in those who believe..."
Source: https://www.christianity.com/wiki/holidays/what-is-maundy-thursday-11628350.html
In the time of Christ, footwashing was done by the lowliest slave in the household, so it was shocking that Jesus, the revered rabbi, was doing this for his disciple followers. Maybe today we should consider performing a shocking act of humility. What would that be?
I have 2 grandons. One is 29 the other 10 both have the same mother. I tell her she was a young mother and then an old mother. She was 16 when she had S and I was 44. I babysat while she finished HS and on to LPN training. She had M at 35 after she married for the first time. I babysat M till he was 20 months and then I had to take Mom in. Could not care for both of them at the age of 65. I have been lucky they live/d 4 houses up the street. Saw a lot of S but not so much M because since the divorce, M spends a week with Mom and a week with Dad. M comes down looking for snacks.
((HUG)) 💞
Sunday is Easter, happy Day to all who celebrate. In years past, we'd order Qdoba taco bar for the house along w authentic Tres Leche cake, and margaritas for the drinking crowd. It was fun. We'll not do so this year, obviously, but there is still cause to celebrate. Chuck bought a small prime rib roast which he'll cook on Sunday, while we give thanks for TWO new "birthdays" in April......mine as of April 5th (ty sp) and Chucks as of April 29th when he received his donor liver in Phoenix.
Last night I took no meds of any kind, not even a Tylenol. I wanted to do a test to see if I woke up less horribly dizzy/drunk feeling than usual, especially since yesterday was horrendous on that front. I slept no worse than usual, either, and woke up this morning quite a bit less dizzy! I was able to walk w Chuck holding my hands (No walker) this time w/o issue! 😁 I feel encouraged today, like maybe this situation WILL resolve in time. Today is 6 weeks since the start of the toxic reaction and 2 weeks since the Skyrizi IV. Today there is one small spider floater remaining in my left field of vision. Not a big deal, really. The noise in my ears is lessening as well. I'll take it and thank God for the smallest improvements. And these meds are now put away, bc they aren't "helping" me in the long run.
I hope you all have a blessed day (😁 JoAnn) and are able to acknowledge small improvements in your own life when they pop up. Things I took for granted my whole life I can now better appreciate these days. Including the fact that Chuck now gets to cook AND clean the kitchen! Ha! Not for much longer though, hopefully. I can honestly say I'm looking FORWARD to cleaning my kitchen again in the near future.
And, I pray with you, that you’ll be back, deliriously happy to scrub your kitchen again!
Oh, Lea, what wonderful news about how well you feel today. It is so good to hear. Balm to my weary heart.
@Bandy-- HAVE MERCY!! Your long missive is WAY TOO LONG for me. Honestly I can neither read nor retain something that detailed and long on my BEST day, and certainly not on this one. I plead the 80th amendment, and my already half-blown mind.
Please don't tax yourself again with a blow by blow I cannot absorb nor retain, and know I shall just trust Lea to decide when, if, and how many scans to have when, and if in future. Ha ha. Mind like a SIEVE, here, kids.
Again, Lea, how wonderful for this good day! I am wanting them to continue!!!!
When the Skyrizi floaters were horrendous, I too wanted an eye patch but I'd still have seen the damn things with my eye closed. Here's hoping N has a full and swift recovery from his surgery, Alva. Stressful stuff for both of you, no doubt.
With all you are going through I won't be whining overmuch about N. here!
Maybe we ALL just need some of those special orchids that kept Basil St. John going!!! What think you? We can research it.
Hugs woman.
How to put this nicely, understanding you mean so well? What I was trying to say (but beating round bushes NOT saying it) is I would appreciate your letting Lea tell me things I ask, without help or interpretation?
I really think of this as her thread to share with us each what she wishes when she wishes how she wishes.
I guess it is the old nurse in me that has my HIPPA knee jerking, but I am put in mind of those years spent at a patient's bedside while doctors and interns discussed them as though they didn't exist right in that bed they surrounded.
I can't really explain, other than to say please just let Lea answer me, or know I don't NEED all the answers.
I don't mean to be offensive and off subject; won't do it again. Just asking if you will refrain from communicating with me over Lea's head on her thread. Before I descend into Haiku I will let this one go.
night.
Getting back to who this thread is about. Lea, still praying for you. Hope you are sleeping soundly tonight.
Oh, and Happy Birthday.
You continue to be in my prayers. I love your can-do attitude on this journey you didn't choose. I believe your positivity (even the negative things you manage to wrap in sarcastic humor) is a great help to your well-being.
Have a blessed day.
Also, you’re a LI girl originally, right, or am I confused? I like to think of us having shopped at the same mall, as teenagers!
LL, I am praying for you this morning here in FL. May God delight you in some way today!
GG, thanks for checking in and your support 😘
Gershun, w/o An advocate, I truly believe there would be a lot more deaths occurring in the hospitals! I slept about 2 hrs total last night. 😑 Frustrating how there seems to be NO rhyme or reason to ANY of this reaction I'm having. By noon yesterday, I was back to feeling like I'd had a gallon of Boones Farm Apple wine (anyone 🤣😂?) to drink. All the sick and none of the fun. Like when I SOMEHOW managed to drink 27 shots of peppermint Schnapps (OF ALL THINGS) in my early 20s and swore off all minty food and drinks ever since. 🙄
Thanks for the birthday wishes everyone.
NHWM.....I've been thinking about what you wrote the other day, how you probably wouldn't be able to discuss a cancer journey if you were dxed. God forbid. I don't think me sharing my journey is a "brave" or "courageous" thing, but an attempt to draw support to help me every day. When I can't sleep or wake up at 3am, I can read comments and that tamps down some feelings of panic that sometimes well up in me. Knowing I'm not alone, that so many are praying for me, that helps a lot.
Plus, I never know who may draw strength from my situation. I belong to a closed FB group for stage 4 cancer folks. There's a lot of interaction in that group, we put questions out there, others respond with suggestions and thoughts based on their own personal experiences. It's good support and scary as hell stuff too, both at the same time. Lots of the members reach out for help bc they're out of treatment options. Then a memorial photo is posted. I have to take that group in small doses for obvious reasons. But it's where I hooked up w the wife of a man who had "very bad vertigo" for 3 full months after a Keytruda infusion. I'm certain he was misdiagnosed as I was and actually had the audiovestibular toxicity from immunotherapy that I'm having. The good news is he DID fully recover from mind numbing dizziness and went on to keep having the Keytruda infusions. That won't happen with me, having the infusion thought to have caused this, but his story brings me hope.
A gal in the group said she's told nobody about her dx bc she's "not in the market for a pity party". That statement makes no sense to me bc she's part of the support group, first of all, which does not operate as a pity party. And to hide the truth from family and friends so she GETS no support seems foolish to me. But we're all different. True that nobody knows how they'll react to such devastating news. My pattern in life has always been shock, anger, then a strong SCREW YOU attitude to say WATCH ME BEAT THIS AND SUPPORT ME or get out of my way. That's my road to acceptance of things I have no control over.