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I put the computer to bed early, missed comments, went back to you crying in the shower. feared that Dr. C said something in some late call yesterday.
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.
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Alva, like all else, I "want" a PET scan and I don't want a PET scan. Once the truth is revealed, it can't be taken back and then there's another New Reality to deal with, good or bad. The truth is often a Pandoras Box, I've discovered, and ignorance can be bliss. If this pain continues, there will be no choice and that's that anyway.

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?
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I understand, Lea. Believe me, I DO understand. But like I said, without a PET proving you are better I don't see what Dr. C. can say to you that will be either "honest" given he hasn't any new info, or "tough"er than all he said, and all you are already doing, going through, and making decisions about one day at a time.

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!!!
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Alva, I agree with you.....I am not sure what Dr C is going to have to say next week without a PET scan to see where the cancer is at, but he suggested an Obdivo infusion w/o the other Yervoy included (last time we spoke).

My grandson was all giggles today which brought me joy 😁, I'm happy to say!
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Grandson gets a gold star for making you happy! There is nothing like the innocence of that age.

I do now recall you saying that might be a suggestion for further treatment from Dr. C.
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There is nothing like spending time with grandbabies is there? They do bring such joy. It makes my heart happy to know that you were able to experience some joy today, despite all you have going on.
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.
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LL,
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.
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I'll amend my last prayer to Lea getting excellent medical care by whoever looks after her. Dr. A, B or C or X, Y or Z

I don't care who it is, just that the quality of care and manner is really good and what you, Lea, deserve!!!
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Thanks Golden. 😁 As you can imagine, my head is already swimming w all these doctors. Bottom line is.......what and when can I have another treatment to stop any new growth of cancer? Whoever can help me with THAT gets my vote.

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 😁😂🤣😃
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Yes, Lealonnie, I have 5 grandchildren, 3 grandsons and 2 granddaughters. However they are now pretty much grown. My oldest is soon to be 23 and my youngest is soon to be 17, but I have had many times of joy over the years with them and still do as I am blessed that they still like to hang with their grandma.
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?
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LeaLonnie1, i just wanted to let you know you are in my prayers. I don't post much but I do read all of your comments and advice. Thanks so much for all you do for caregivers.
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Grandmaofeight, such a nice comment, many thanks for your prayers (and everyone else's too).

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.
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Lea - bottom line for sure is that you get the treatment you need to treat/beat this thing.
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Scripture du jour:

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?
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Good Morning! DH out playing golf. Its 71 here today and partly Sunny.

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)) 💞
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JoAnn, it's amazing to think you have a 29 yo grandson, at such a young age yourself, isn't it?

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.
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Oh, I’m so glad to hear that your meds experiment worked out positively! 🎉🎉

And, I pray with you, that you’ll be back, deliriously happy to scrub your kitchen again!
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Lea -Thanking God with you for the improvements! Praying for many blessings for you this Easter weekend. 🙏✝ 🌷✝🙏
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Bandy..... only 50% of people make it thru 4 duo treatments. Many of those who make it thru 2 treatments wind up in remission for years, PET scan or no PET scan. Just an FYI.
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Hi Lea, I am late in to check on your update. N. and I were off at crack of dawn to hospital--there for surgery on his latest retinal tear. Just got home. He's all looking dapper in an eye patch. Shades of Brenda Starr's beau (and don't y'all tell me no one remembers her.

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!!!!
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I distinctly recall Brenda Starr, Reporter 😂🤣😃 along w all those comic strips in the paper we'd use Silly Putty to "copy"!!

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.
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Lea,
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.
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@Bandy:

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.
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Lea: Happy Birthday one day late!🎂🎂🎂 Glad that you're feeling a little better with no medication last
night.
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Wishing you and your family a blessed Easter, Lea. You are in my prayers. And happy birthday!
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Happy Easter and Happy Birthday 🎂.
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Alva, when my brother was in hospital years ago the doctor was discussing putting him on a feeding tube right there at his bedside. I said right to the doctor's face "Can we not discuss this here like he doesn't exist" The doctor looked quite taken aback. I didn't care. I'll advocate for anyone I love.

Getting back to who this thread is about. Lea, still praying for you. Hope you are sleeping soundly tonight.

Oh, and Happy Birthday.
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Good morning, Lea. Just a lurker here checking in on you again. *I do check in daily, just don't post often.

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.
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Brenda Starr! Basil St. John!! Orchids! I remember my father filling me in on their whole newspaper soap opera when I wanted to start reading it in Newsday! What a nice memory you guys stirred up!

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!
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Cx, I am a LI girl, yup. Shopped at Roosevelt Field, worked at Alexander's at 16, and did the puzzles and read comics in Newsday daily. If I recall, that's where I learned how to decode Cryptograms....my all time favorite type of puzzle to this day.

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.
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