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.
I hope you’re feeling a bit better today.
Sending love and hugs to you!
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)
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.
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?
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.
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.
Turn to nature, surround yourself with nature, and meditate. Keep going the best you can.
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.
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?
Yep. Just a coincidence in timing. Same topic, perhaps slightly different perspectives.
I don’t think you are negative. I love a full moon!
May God give you something that makes you smile today. 🌻
Don't give up Lea! I'm still hoping for you............and praying.
Hugs to you.
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.
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!
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.
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.
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.
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!
Thoughts and prayers, many hugs coming your way tonight and tomorrow.
🧸️
Sending you happy thoughts for your IVG treatment today.
I along with others on here are believing that they will, and we're thanking the Good Lord in advance for that.
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.