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Good morning, Lea

I hope you’re feeling a bit better today.

Sending love and hugs to you!
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Lea,
Don't lose heart, we are not losing hope for you!
Song for you:

I love You, Lord
For Your mercy never fails me
All my days, I've been held in Your hands
From the moment that I wake up
Until I lay my head
Oh, I will sing of the goodness of God

And all my life You have been faithful
And all my life You have been so, so good
With every breath that I am able
Oh, I will sing of the goodness of God
I love Your voice
You have led me through the fire
In the darkest night
You are close like no other
I've known You as a Father
I've known You as a Friend
And I have lived in the goodness of God (yeah)
And all my life You have been faithful (oh)
And all my life You have been so, so good
With every breath that I am able
Oh, I will sing of the goodness of God (yeah)
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Ty Send, and everyone for your good wishes. Nothing has changed here, nor do I expect it to. I believe this toxic reaction I've had has caused permanent damage to my vestibular system,. God doesn't fix all problems that happen to us otherwise nobody would have any disabilities, let's face it.

Gershun, i try to keep my mind occupied so I don't dwell on my ugly situation. What else can I do? I don't know how well I'm handling it....I have my moments, believe me. I'm not living, I'm just surviving from one day to the next. I'm disappointed when I wake up in the morning sometimes. There seems to be no point in it, which is not depression speaking, just the truth.
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Lea,
It can take over a year for that kind of damage to heal.
There are rehabilitation treatments to retrain you on your balance, and functioning, similar to retraining a person who has had a TBI (traumatic brain injury).
Is there a treatment for balance disorder?
Physical therapy and rehabilitation performed by therapists with specialized training in vestibular rehabilitation may create a customized treatment plan to retrain your balance system and facilitate the compensation process to eliminate dizziness.

Get a referral to a specialist at a teaching hospital for Rehabilitation medicine.
I do not know how soon this should happen for you, but look into it when you are ready.

I can imagine your doctors sitting on their hands about now, not really thinking straight, still in shock that you were able to survive at all. But you did!
Kick them in the butt, and look into some referrals and helps with balance issues.
Because, God is not done with you yet.

Understand?
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Lea,

I truly appreciate your realistic view of life.

I detest Pollyanna types. Being in denial doesn’t help. You have a healthy attitude. I admire your acceptance of reality.

We can certainly have hope along the way in our journey, but in a realistic way.

If things don’t happen to go as well as we hoped for, we aren’t quite as disappointed, if we don’t expect it. If things should happen to go well. it is a pleasant surprise and we are grateful.
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NHWM,
What is the Pollyanna Principle?
The term “Pollyanna Principle” refers to the human tendency to focus on the positive and use more positive words and terms during a conversation. Generally, people who are mentally healthy and not suffering from depression tend to focus more on the positive than the negative, and they are prone to recalling more positive than negative phenomena from their memories as well.
According to researchers Dember and Penwell (1980), there are many ways this positivity bias manifests:
“…people’s overestimating the size of valued objects, avoiding looking at unpleasant pictures, communicating good news more frequently than bad, and so on.”
(p. 321)
Although some of us think of ourselves as pessimists or realists, either thinking more about what goes wrong than what goes right or trying to strike a healthy balance, we are still generally a pretty positive-focused species.
Doctor Clay Jones puts it this way: “Anyone who isn’t clinically depressed is on some level more like Pollyanna than Eeyore” (2014). We may not think we’re very positive, but it is written in our very DNA to look on the bright side—we all have a built-in capacity for positivity, but whether we actually embrace the Pollyanna Principle and set our sights on the positive or succumb to negativity is almost entirely up to us.

My suggestions for Lea are based on a reality medical and rehab treatment that can make her situation improved.

OR, were you not referring to my post at all? Sorry.
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There are many people that like you on this forum, they value your knowledge on this forum. I understand your thoughts, but only you understand what you are going through and I can't imagine the feeling, the hardship.

Turn to nature, surround yourself with nature, and meditate. Keep going the best you can.
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Send,

I am not contradicting you in any way. Just stating that I respect how Lea feels. I’m the same way. I look at facts and I try to face reality. It took quite a bit of therapy for me to learn to see things objectively. Lea has always been a rational thinker.

I still feel like it’s fine to have hope, just in a realistic way.

We all handle these situations differently. It’s not about one way being better than another way. Just a different perspective.

My reference to a Pollyanna is someone who sees the best in all situations no matter how lousy they are. Let’s face it, some situations like Lea’s, just plain stink! There is no bright side.

We all know that Lea is grateful for her successes during this ordeal. Nevertheless; the after effects are really awful for her. I recognize this and feel that she’s correct to acknowledge her feelings on this situation.

Lea is doing the right thing by distracting herself as best as she possibly can. I do the same thing. That isn’t pessimism or denial. It’s living within the confines of our reality.

I certainly wasn’t aiming any of my comments at you. Your post wasn’t even visible to me when I started typing. We were typing at the same time and your post landed first. No criticism at all about your post.

I respect your point of view. I don’t think Lea’s views downplay her faith in any way either. I have faith but I never assume that everything will go the way that I would like things to go.
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Thanks NHWM.
I am a negative person overall.
And especially sensitive during the full moon.

It's not about me, I know.
It was a coincidence that you posted after me.

Maybe we made Lea sit up in bed and take notice?
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Send,

Yep. Just a coincidence in timing. Same topic, perhaps slightly different perspectives.

I don’t think you are negative. I love a full moon!
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Just saying hello, Lea, and letting you know that I am thinking of you.🪻

May God give you something that makes you smile today. 🌻
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I hope I'm not a Pollyanna type. I do try to never give up hope but I also see the sense in having a realistic view on things. When you look up and it's cloudy you can say it's sunny till you're blue in the face and it will still be cloudy. But that's not to say the sun won't peek out eventually.

Don't give up Lea! I'm still hoping for you............and praying.
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Hi LL, just checking in. Your continued unchanged condition contintues to suck. But please try not to view what's going on right now as permanent, yet. At the 1 year mark, it can be called that. ((hug du jour))
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Even with the world spinning round you, Lea, I hope that your day is better today. Some days it's hard just to wake up and carry on, but we do. There's really no reason other than being there for the people who would care if we were not.

Hugs to you.
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Send, as already discussed, rehab is not an option for me. This condition has no cure or way to fix it. It will either pass on its own or it won't. I'm exhausted tbh. I'm not giving up......I just wouldn't mind if I didn't wake up one morning. That's my reality, period.

Ccxmoody, I have lots of times to smile in a day. It just doesn't fix all that's broken or relieve the pain I've been dealing with for a long time now. W/o the prednisone, the hip pain alone is terrible. I guess the meds were camouflaging it. My whole body hurts these days.

Oldage, ty for your kind words. The closest I can get to surrounding myself w nature is sitting on my front stoop or looking out my back window. But I can meditate!

Going for a blood draw later for my outing of the month in prep for my IVIG tomorrow. None of the others have helped, let's hope this one does.
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Lea,

I am certainly hoping that future IVIG will help you.

I bet you feel like a pin cushion by now with all of the lab work that you’ve endured!

Hugs, love and prayers sent your way today and always!
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Bm
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You don't read many if any stories about people who beat cancer like you did Lea only to have horrible and debilitating side effects from the treatment. It's all sunshine, rainbows and skittle pooping unicorns online it seems for many people.

But there is a dark side to cancer treatments as you have posted on here. I wish that you could just enjoy having survived your cancer without all this other crap.

Maybe doctors should do PET scans after each immunotherapy treatment to see where they are at with the cancer instead of just randomly having a four dose treatment since the side effects can be permanent and debilitating. But in the cancer world as long as they can say you have a clean scan you are a success story. What a crock.
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Sp, there aren't many people who "beat" stage 4 cancer that's spread all over the body. Especially not melanoma which is a VERY aggressive cancer that keeps coming back, over and over again, in New locations. I will have a PET scan every 3 months until more cancer appears. Then I'll be faced with trying a clinical trial or doing nothing, since I'm no longer a candidate for immunotherapy.

THe truth is, even those who have clean PET scans are recommended to continue with immunotherapy for between 1 to 3 years! That's how aggressive melanoma is. Even the people who have had serious side effects ( not as serious as mine) are urged to go on with treatments! It's mind boggling. What I read on my stage 4 melanoma FB group page is unbelievable, to say the least. People who are half dead from side effects are BEGGING for more immunotherapy. I don't bet it. The infusions are ruining their lives and killing them, which they prefer over the thought of dying from cancer.

Thank you. I wish I could enjoy this calm time where I'm cancer free BEFORE the PET scan says otherwise. Remission can last a year or more.....thats a possibility, so I'm praying this sh*t leaves me so I CAN enjoy my life.
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Lea,

I am praying with you.

I understand how you feel. You know the facts about this particular type of cancer. I am sure that it is more than you ever wanted to know on the topic!

Unfortunately, you got your education on melanoma the hard way. No one wants to learn about cancer by experiencing it themselves.

You’re a realist, which is a healthy way of viewing your situation regarding the possibility of your cancer returning.

I very much admire your outlook on life in general, especially with how you are dealing with extremely complex and challenging health issues.

I know that everyone on this thread supports you on this journey. We are hoping for the best outcome and praying for you. We certainly wish you the very best in life.

I am so happy that you have a wonderful family who love and support you as well.

It’s terribly sad that some people have no one to support them during during their time of need.

I am glad that there are support groups for people to find comfort from those who are in the same boat or have family members that have been through this before.
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Just checking in on you while I’m out of town for a loved one’s memorial service.

I’m so sorry about your hip pain! Is that new, or did it come with the toxic reaction/side effects?

Gentle hugs to you!
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Lea: Hugs. 💚💚
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Lea,
Thoughts and prayers, many hugs coming your way tonight and tomorrow.
🧸️
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Da*n cancer!
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Praying you will get some relief by having the IVIF. Good luck today!
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Good morning Lea, I’m still keeping up with you. I hope we all can keep in mind the original post you made sharing your diagnosis and asking for prayers. You shouldn’t need to defend or explain repeatedly as you’ve quickly become so well versed in your medical situation. Can’t imagine after 30 years of us dealing with our adult son and his many complexities, not being knowledgeable about it all, and you’ve had a half year crash course in quickly learning so much. Prayers for IVIG going well today and for peace in the days to come❤️
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"The infusions are ruining their lives and killing them, which they prefer over the thought of dying from cancer." Lea that is horrible and sad all at the same time.

Sending you happy thoughts for your IVG treatment today.
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LL, thinking of you this morning, praying all goes as well as it can. ((hug du jour))
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Lealonnie, praying that your infusion today helps you feel at least some better and that the horrible side effects you're experiencing leave sooner than later.
I along with others on here are believing that they will, and we're thanking the Good Lord in advance for that.
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Cx, the hip pain is from arthritis and the need for replacement as I had with the right hip in 2017. Which is not going to happen now.

Today's IVIG is unlikely to bring me relief bc none of the others have done a darn thing to help me. The NP I met with today wants me to go back on 10mg of prednisone to counteract the negative reaction I'm having from getting off of them. I want to wait awhile which she thinks is a bad idea. Ugh. I just can't win here no how. The thought of taking that crap again gives me the Willie's, but the thought of hobbling around on a walker due to insane dizziness also gives me the Willie's 😑

Anyway, sitting here on the recliner in the cancer center getting my infusion right now which takes about 3.5 hours.

I hope you all have a good day. Thanks for the hugs and well wishes.
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