Follow
Share
Read More
Pecan, hi! Chuck made peanut butter cookies earlier and pecans came to mind bc they are my favorite nuts on earth. I thought of you. 😁

Golden, I've always had mustache hairs which I HATE. Once I used that Aussie wax crap from 25 yrs ago and quite literally nearly ripped off my top lip! That's when I started using hair remover cream that wipes OFF w a tissue. Now those black hairs are white and easily removable, now that I don't even care about them anymore. Strange how priorities ebb and flow, isn't it?

Alva, my hair is red bc Loreal said You Are Worth It decades ago. I went w the flow. Under all that red hair is no doubt 100% white hair. One time I bought that spray in gray color and went gray, posted a photo on FB, and everyone was flabbergasted. Chuck blanched when I walked into the living room, too, he hated it THAT Much. Ridiculous.

NHWM I'll say FTRS today, RS meaning right side bc the discomfort is ramping up over there. I pray it's not my liver swelling up again, but it likely is I guess. 2/23 was my last immunotherapy IV tx, so.......
(6)
Report

Lea,

I will pray that it’s not your liver. My gosh, you are going to know more than you ever wanted to know about the human body after going through all of this!

No wait, I forgot…

This isn’t your first experience in learning about our human anatomy. You learned a lot by going through Chuck’s challenging health issues.

You and he are certainly learning the hard way. It would be a lot simpler if you could watch a documentary on the topic.
(4)
Report

Pecan you are not a fool and nothing you said has been an issue for me to date. You guys have been a pillar of support for me, and I've said so all along.

On the subject of fools, all I can say is when people send me long messages that don't take the cancer victim's feelings into account, they make it all about THEM and it's hard to swallow for me sometimes.

For example, I have a childhood friend who thought it'd be a good idea to send me explicit photos of a huge melanoma wound that was mishandled, and looked like 3 lbs of raw chopped meat. As if this would somehow help me? 😑 This guy is dying to boot, so like Lyn Eib says, "if you have a cancer story to share with me, make sure it has a good ending or stop speaking immediately please."

Instead of trying to figure out who's "foolish" here, let's focus on the wisdom scriptures of today instead.

For today, during my own times of foolishness (which have been many), please replace that behavior with hard earned wisdom, Lord.
(12)
Report

Extending all best wishes for blessings upon you this day and always.
Your story is compelling. May the road ahead be less difficult.
(5)
Report

Praying that that right side pain would subside, and quickly!
(6)
Report

Lea, I was just going back reading everyone's posts, which is my end of day activity (or end of computer time day). Saw that you answered my query on what's next and it is 13th for Dr. C. and his "Frank and honest talk about your future".
And then Dr. Medina at UC on the 18th.

Somewhere there was once talk of a PET scan. I don't know how you do a "Frank and Honest" without information about what reaction you have from your treatments.

And isn't our dear Dr. C a bit on a pessimistic end of the MD-continuum? Usually? I guess I just wonder how he can do too much "honest assessment" without the followup scan.
Got my calendar marked, anyway.

And hoping the new popup pain is gas!

That thing about people who write long diatribes that turns out to be all about them? We nurses used to have names for that group. We called them "Those-who-come-to-steal-the-thunder". There would always be the ones who wanted drama and a focus of attention on themselves. Entertaining for staff; for patients, not so much.
(9)
Report

Alva, imo Dr C is an a-hole but I knew that on day one. Today I should be dead by his estimation, since I first saw him on 2/4 And he said, " oh yeah, you've got 2 months to live, if that." What's Today? April 4th a -hole and I'm still standing, albeit very unsteadily. While speaking, he was pointing out the dreadful yellow splotches all over my PET scan on his screen which I SAID I did not want to see. So.....last we spoke on the Skyrizi day, he said when he saw me next he'd order another PET scan meaning it could be weeks before it actually takes place. 😑 I see the royal gel-head 4/13.

The pain in my liver area/ right side is quite sharp today from time to time. The past few days my right foot is painful and swollen, too. Right away dd said blood clot but no, none of those signs exist tg. Naturally my mind swings to uh oh, more bone cancer but idk. I realize there is so much more I DON'T know which leaves me feeling uneasy, to put it mildly. I want to scream.....WHATS NEXT? But who's answering????? Nobody.

This is a day that leaves me feeling hopeless and like there's no good option for me out there. I was recalling something today...When I was 30, an allergy doc tried to immunize me against mosquito bites bc I am horribly allergic and carry an Epi Pen. He used a formula of 1,000,000 (1 million) parts venom: solution to immunize me and I PASSED OUT. This is how my body reacts to things it doesn't like. Like a little witch with a B and stamping her feet like a baby, throwing me into chaos for long periods of time to recover. This is what worries me about my "treatment options".....what in God's name will the next one do to me? 😶 Dr C said all along, your body will either accept or reject these infusions....they will either work or they won't, and your attitude has nothing to do with the outcome. It's all up to your body. And judging by past history and current conditions, my body isn't cooperating.

I'm not giving up or anything, just feeling beat down and tired and weepy today. Trying to avoid pity parties and Why Me's today, but the weather in snowing in spring (literally) and dark like my mood.

Tomorrow is another day though.
(13)
Report

Many (((((hugs))))) to you Lea. Cry if you want or need to, it's therapeutic and will do your body and mind good. Have a restful sleep tonight. Tomorrow is a new day, a new beginning which will hold new possibilities. Just know that you are LOVED.
(7)
Report

Lea I'm sorry that the roller coaster ride continues. So many ups and downs. Not to mention the unknowns.

That is pretty wild about the mosquito venom! Your body is very sensitive in some respects and we just never know how we're going to react to anything. Life and our health is just full of surprises.

That stinks that Dr C is a first class jerk. Guess he missed the class where they talked about bedside manner! Well don't let his crappy attitude bother you too much.

Wishing you all the best. May your pain subside and all other issues improve as well.

Hope you sleep well tonight!
(5)
Report

(((((((Lea)))))) If I had a $ for every a**h*le dr.... Shame on him!!! How dare he?

My dd always says "God knows what He is doing."

I say "God has a plan."

It's a trust issue and that is huge and difficult in your circumstances. But I know that I know that I know that He does not want you to feel hopeless.

Praying for hope and peace for you today, angel kisses and a good night's sleep. (((((hugs)))),
(9)
Report

Then today is your second birthday Lea. 🎉🎂

The first when you were born and now April 4th marks your second official birthday since according doctor douche you should have been dead by today.

I wish all of us could line up to give your doctor a swift kick in the ass in honor of your second birthday.
(7)
Report

Strangely enough, sp, that line-up was exactly my image.
(6)
Report

Lea, I'm so sorry for your shi**y day and extremely shi**y doctor. I have a doc I don't care for too. Lord forbid I ever go down the road you are. I'd probably move to Germany before I'd trust him for help.

I'm saying extra prayers for you tonight.
(6)
Report

Sp......holy chit you cracked me up SO HARD w your wise ass Dr Douche comment, tears are running down my cheek right now and I NEEDED that laugh. Big time. Funny tears not pity party tears. Thank you for that. Sincerely. You win the internet today, hands down.

Happy Birthday to me,
Happy Birthday to me,
Happy Birthday Dear Lea,
And screw you to Doctor C! 😂🤣😃
(11)
Report

You're welcome Lea. 😄
(4)
Report

Sending a warm hug for Lea 🤗

Sending a bird to poop upon Dr C's head 🐦‍⬛💩
(8)
Report

I dragged my crying self complete with the walker into the shower where I sat on the tile built in seat and let the hot water run over me while I cried and used up the last of the Hawaaian Plumeria Blossom body wash on my sponge. Damn, I even cried for the fact my favorite body wash is discontinued! Tears are very therapeutic for me, it helps me reevaluate things after the storm passes. I still feel like I've been run over by a truck and drank 4 gallons of moonshine, but we had my stepsons Italian Wedding Soup for dinner w a salad and it was so perfect for a gloomy snowy night. There is a red fox sitting on my retaining wall in the back yard, barking and howling at the moon or something. It's eerie, I don't like the noises he's making which sound human and cause Honey to growl. Seems fitting though, tonight, like a cheap scary B movie on tv.

Gershun, ty for the prayers and Bandy/Beatty the hug which IS all I need right now. Chuck has been so good to me today, and I know how awful this is for HIM too. He feels all along that Dr C wrote me off. Gave up on me, the "dead woman walking". He never has that kind of feeling about people, which is how he rolls. Hes a big teddy bear that finds the good in 99.9% of humanity. I trust Chucks instincts a lot, btw.

Ty for links about how crying is good.....which is nice bc I'm a cryer and that's not likely to change anytime soon. 😂

Again100 and Golden......odd thing about Dr C I didn't mention. He gives me and DD (when she's present) these little hugs that feel forced and insincere. An Uncle Creepy vibe is what he gives off. Last time at the Skyrizi debacle, he leaned into DD for a hug and she visibly shrunk back from him. Ha! Ugh.

PB, you always make me smile with your words. They are like a warm hug on a cold night or a bowl of Wedding Soup for the soul. You rock g/f. 😘

Amazingly, we've passed the 1000 comment mark on this thread in 2 months time which blows my mind! I can't thank you all enough for being with me on this journey, it means a lot. "Internet strangers" who come together for support mean so much bc I don't feel alone with this burden. With you guys helping me cope, talking me off ledges, listening, all of it......its super helpful and I love you all!
(17)
Report

Beatty and Sp, 🤣🤣🤣

I was preparing boas and cake and glitter balls to join you in the party, but then I saw these comments and laughed right along with you. Dr. Douche, indeed!! I have had a few of those. They are the worst!

Hugs to you.
(6)
Report

Lea,

I think you are the only one who is surprised by the amount of comments on your thread. None of us are surprised by the outpouring of support. You are well loved by everyone.

We will continue to support you on this journey of FTF and everything else.

I have often wondered, if I suddenly discovered that I was facing serious health issues, would I reach out to AgingCare forum for support?

I was able to reach out to this forum about my mom with Parkinson’s disease and my husband when he was diagnosed with prostate cancer, but I don’t think that I could for myself.

At least, not initially and maybe not ever. I would need time to process it privately. I do know that I would have my husband’s and daughters support which would mean the whole world to me.

I really don’t think anyone can anticipate exactly how they would feel until they are experiencing it firsthand.

I’m glad that are able to share this with us. I am very happy that you are able to find comfort from Geaton’s scriptures and other messages of encouragement and love.

If I am truly hurting or horribly frightened, I do the opposite, I find it overwhelming and difficult to speak with others. It isn’t always easy to be so vulnerable. I will retreat.

I value being with others but I also cherish time alone and take time off for myself when needed.

We are all different with our own individual needs. I admire your courage and honesty in sharing your pain and suffering.
(12)
Report

Lea: Yay for the six hour stretch of sleep! Yum on that bread. Hugs.💚
(5)
Report

what do you call the guy with the lowest passing score on the medical boards?

doctor

my Dr father used to make this comment.
I’m sorry you got That One! Hugs 🫂
(6)
Report

Lea - uncle Creepy - Yuck, just plain yuck!!! I wish and pray you could have a different dr in charge of your treatments. He is not good for you. Praying for protection to surround you.

For He shall give His angels charge over you,
To keep you in all your ways. Psalm 91:11
(9)
Report

LL, I am frequently amazed when I see a recent post of yours responding to a posters present lamenting of their difficult situation. Despite all you are going through you still find the time and energy to help others. You also sound just like your previous self with no indication of your present difficulties. That shows your true character and the ability to be so level headed. Of course you have so many reaching out to you. You have helped so many myself included.

Personally I would be crying a river for everything I love that has been discontinued. Wishing you a good day.
(13)
Report

Lea, I can so relate to the tears in the shower and glad you found them therapeutic. Prayers for a good day ahead, filled with hope and something unexpectedly positive
(8)
Report

LL, is this the body wash you mentioned?

https://www.amazon.com/Island-Soap-Candle-Works-Hawaiian/dp/B018YL8VBG?th=1

What brand? I will hunt it down for you. Although I've become mostly allergic to wearing anything scented, I still love fragrances... they center my mind on comforting feelings and great memories.
(2)
Report

Scripture du jour:

"For the Lamb on the throne will be their Shepherd. He will lead them to springs of life-giving water. And God will wipe every tear from their eyes.”

- Revelation 7:17

I love the thought of God Most High personally wiping away my tears with His own hands, the hands that "knit me together in my Mother's womb." (Psalm 139: 13). No one knows me like God does.
(9)
Report

Geaton, your link is to the body/hand soap pumps I use from Island Soap & Candle Works. It's not the dxed body wash 😣. They had a sale at Christmas and I bought 12 of them along with their Surfers Lip Balm which is an incredible product. The hand soaps are sheer heaven, but the Plumeria Blossom fragrance is my favorite.

Thanks for trying. I have a flag on eBay to notify me if someone is selling the body wash, but no luck there either. I've tried to find this for 18 months now but cannot. The body wash is a similar fragrance but much foamier.
(3)
Report

I don't agree with Dr. C, I think attitude is important when fighting any disease. A boss I worked for years ago became friends. She told me when her DH was young, his Dad died leaving his mother to raise 5 kids alone. While they were young she found she had cancer in her back. I think it was wrapped around her spinal column. My boss is now 68 so you can see how long ago this was. MIL needed treatments and the Cancer society paid for them until they told MIL they couldn't. She said she had 5 kids to care for and couldn't afford the treatments so stopped them. She went on to raise those 5 kids and had grand children. Can't remember if the tumor went away or she went in remission but she lived to be 88.

So determination and attitude can go a long way.

I love Italian wedding soup so that dinner sounds good to me. I love Italian food. I couldn't be Italian so God gave me two Italian Aunts. One on each side of the family.

Everyone needs a good cry. It cleanses the soul.

(((HUGS)))💞
(2)
Report

JoAnn, I feel like God intervened with your boss's mother and her cancer, personally. I had a good attitude all along w my tx and still got knocked down with this serious toxic reaction I've been enduring for 6 weeks now w no end in sight.

Telling a person their attitude determines their cancer outcome suggests they are at fault for their disease, and able to direct the outcome IF ONLY they'd done A B C or D. This statement is not intended to cut you down, just to underline how healthy people have no clue about how words affect cancer patients. If stage 4 cancers were curable with diets, attitudes or frames of mind, there would be no cancers left on earth, never mind affecting 50%+ of the population.
(8)
Report

This comment made me laugh
"He gives me and DD (when she's present) these little hugs that feel forced and insincere"
I think that they all have to attend the same class or two on faking empathy🙄
(8)
Report

Start a Discussion
Subscribe to
Our Newsletter