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.
The no sugar intake with cancer is indeed a myth, but I don't eat much as it is, never mind sugar. Funny how I always have restricted my sugar intake before this dx.....fat lot of good ANY of it does.
Geaton, ty for posting the scripture. Per oncology, I have no food restrictions. Just an order to eat MORE
As always, thanks for your amazing support Cxmoody.
So sorry to read what you are going thru. I sent up a prayer. I don't consider myself religious but I do believe in prayer.
Sorry. I just got a tiny ticked off. I beg forgiveness.
Today I'm trying to motivate myself to get dressed to go give blood for some labs that have been ordered. I'm running this daily fever now
Great point!
Alva,
I second your Amen! 😊
Have to tell you about someone in my family who had breast cancer. It’s devastating, educational and sometimes humorous.
Sue was 40 and had two children with my brother. They didn’t have a good marriage before, during or after the cancer diagnosis. Her behavior was always erratic and she was later diagnosed with bipolar disorder. She wasn’t consistent in taking her meds. They eventually divorced.
Sue went for her first mammogram at age 40. There was no history of breast cancer in her family.
The hospital didn’t inform her of the mammogram results. She made the mistake of assuming that everything was fine. Lesson #1, ALWAYS call back to check your results of your mammogram for yourself! Sadly, her results slipped the the cracks.
She was bathing one morning and found a lump. She went to her doctor. Yes, she had cancer and it was bad. So bad, that she had to have a double mastectomy and bone marrow transplant.
Sue was a beautiful woman and quite vain. She didn’t want to wake up from her surgery without breasts.
Against her surgeon’s advice, she insisted that he do her reconstruction surgery at the same time she was in the hospital for the removal of her breasts. The surgery took many, many hours to complete.
She sued the hospital for not informing her of the malignancy and won over a million dollars. The odds were stacked against her from the beginning. Her cancer had progressed rapidly. She went through hell but was determined to survive for her children.
Of course, everyone prayed for her. When I informed her that we were praying for her she said very brazenly, “Do you think I am going to die? I don’t care what my doctors say! I will live. I’m too mean to die!”
I told her, “I didn’t say that you were going to die and I believe that if anyone can beat these odds, Sue, it’s definitely you!”
Well, she was right! She beat the odds. I so wish that this story had a happy ending. It doesn’t. She was a chain smoker. She started smoking when she was young. She smoked during her pregnancies, during her cancer, never once tried to stop. She ended up dying of lung cancer leaving two children and at this point an ex husband behind.
So, yeah. I definitely think that attitude plays a part in everything! She claimed to be too ‘mean’ to die! She proved that she would live. I only wish that she could have managed her bipolar disorder by staying on her meds and could have quit smoking.
Honestly, it’s a miracle that she lived.
I do believe in having faith that we will survive, which isn’t always easy to do. If there are setbacks, it’s easy to become discouraged at times.
I am amazed at how children face these challenges. My cousin with Down’s syndrome had leukemia as a child and went to St. Jude’s hospital. She is doing well now but it was hit or miss for awhile.
My husband showed little emotion when he was going through his cancer treatments. He is an engineer and has a scientific mindset. So, he looks at facts.
I asked him later on, if he was ever afraid and he said that he was concerned. Going through these things will test anyone. He does believe in prayer. He prays, but looks to science for proof, which I believe is what everyone should realistically do. We still need to rely on modern medicine which doesn’t compete with faith.
I feel for you, having a fever and getting up and out sounds rotten!
Sending hugs and prayers this Wednesday evening! 🫂 🫂
It's 5:11 pm here and no fever today. Maybe it'll turn out to be a fever-free day today!
Send, what's the secret I don't get about eating Fritos Chili chips?? Those lil suckers are good!
I will get another PET scan at the end of my therapy infusions, in about 11 weeks or so. That will show whether the immunotherapy worked in reducing all the yellow areas to lots of black areas on the image, meaning the tumors have shrunken in size and the cancer has backed down, or stopped advancing, better said. Where I came in at, that was the goal....to stop this melanoma from traveling further in my body. And these 2 products treat ALL the cancer at once with one infusion every 3 weeks.
In the meantime blood tests are what they have to go by to test other areas for chaos. Like liver function, thyroid function, etc. Anything can get wonky at any time.
Its not the unknowns of this situation that upset me. It's the pain levels. Today has been awful and every movement I made was excruciating. That wears me out emotionally and physically too. My state of mind is calm, for the most part, just living in the moment everyday. I can't project past that. My dd would prefer to see me doing stand up comedy these days. Its not for wont of material, its for not being able to stand up for longer than 10 minutes 😑
That thing about "It's not for lack of material" for standup comedy, "it's that I can't stand for more than 10 minutes.
You are indeed worthy of the best stage out there. We'll get it for you when you get better. Keep collecting the material meanwhile! I am so sorry the pain is such a bear today, and am hoping for better of it tomorrow.
The Fritos (actually chili cheese chips) are so good, I think they may be curative.
I was praying lying down.
"You have searched me, Lord,
and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.
You discern my going out and my lying down;
you are familiar with all my ways.
Before a word is on my tongue
you, Lord, know it completely.
You hem me in behind and before,
and you lay your hand upon me.
Such knowledge is too wonderful for me,
too lofty for me to attain.
Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
How precious to me are your thoughts, God!
How vast is the sum of them!
Were I to count them,
they would outnumber the grains of sand..."
- Psalm 139
I LITERATELY would watch the clock and try to get myself to the next minute. It’s all I could do.
I had heard this podcast about a guide dog who helped her person get down flight after flight. I would think of her as I paced around my room, dragging my IV pole with me. I pictured this dog not thinking about all of the steps in front nor all the steps behind. She just did her job. That scene got me through that minute. And, the next.
Here’s the link, if anyone could use this imagery:
https://thisiscriminal.com/episode-172-roselle-and-michael-9-10-21/
“I can do all things through Him who strengthens me.”
- Philippians 4:13
Thinking of you so much. Hoping the pain level is better and the fevers are stablized.
I don't love the fact that my mother is on round the clock pain medication but honestly I feel that is the only was she can manage at this point. The bedsore is so deep the bone is visible. I think the medication is what gets her through each day though I find this a very sad way for her to continue on. You are young and vital and might feel better if pain is managed well. I am not saying it is not. I just wonder if the best is being done for that issue. Not a professional, just someone who cares.
Wishing you well. I hope your pain subsides soon.
Ladies, I'm trying to make it thru EACH DAY here, so forgive me if I don't give a flying fig about the effects of sugar on cancer or pain med addiction or much of anything at the moment except the next few hours of fever, sweating bullets, shivering cold, the new pain in my right side I just took a pill for, etc, or the new tests I have to go take now to make sure my thyroid is still working.
Again, sugar has never helped anyone w anything, but sometimes, it just doesn't seem to matter. Especially when you did EVERYTHING right and cancer still sneaks into ruin your life.
Pecansielli, thank you for your prayers.
Chuck had a car accident this morning, his fault, no injuries, insisting on using a roundabout in the glaring sun and then didnt see the guy he hit. 🙄 I'd drive 5 miles out of my way to AVOID using a roundabout.
Didn't I tell you that all the advice you would get would drive you nuts? It will. EVERYONE knows WHY you got it, or WHAT will cure it, or want to tell you about their aunt Jane.
Do let me assure you, having worked as nurse all those years. One-year-olds, the most innocent being on earth, with no time yet to sugar up, get brain cancer and die before they are two. (I recommend to all Rob Delaney's Book, A Good Heart about his son, a profile in love and courage. Mean people get cancer. Believers and non believers and young and old and all shapes and sizes and vegans and vegetarians and meat eaters.
The best thing to read about all the juju we want to plaster all over what is cells going nuts is Susan Sontag's Illness as Metaphor. Until then people will insist they know the way to avoid this until it lands in their laps. And if we live long enough, it almost certainly WILL land in our laps or into the lap of someone we hold not expendible, someone dear to us.
Sometimes the burden of people and their advice and admonitions--so well meant-- were worse than the spectre before me. It's hard to tough through that stuff when you are trying to beat down fear and pain.
Just plug your ears, cover your eyes, and do the nah nah nah nah thing real loud when it gets annoying, Lea. It's part of this journey, usually comes of love. Glad to get your update today.
I’m so sorry about the pain that you’re in. I’m glad that the oncologist is being helpful with the meds.
You are treasured here.
I am a slow learner:)
(The rest of this post is not directed to any other poster… it is more about the people in my own world or things I have seen elsewhere.)
It’s funny, too, how what is old becomes new again. When I first got sick, I read all that I could on eating right, etc. I just recently again had someone bring up something that would “work”. I remember “discovering” the same thing in 2005, it was just packaged differently. And it was new to the person telling me. They were trying to help, of course. They love me. I didn’t have the heart to say been there, done that.
I also now shy away when any guru/medical person turned writer, etc. relies on the “doctors are trying to keep you sick/they don’t know everything, etc.”
Any “expert” that needs to sell you on the science by instilling fear or charging up your emotions is using manipulation, and that includes many natural health folks in addition to the drs they are talking about.
It’s also interesting how people LOVE dr so and so, who is natural and not one of THOSE doctors. Yet, they never really get better, especially if they have something chronic or poorly understood. I think the difference is that they feel heard or the new doctor makes them feel empowered. Either way, it helps. But, the person isn’t a miracle worker. Some things, like what I have, are just not things we have answers for yet. I doubt we will in my lifetime.
Clearly, doctors don’t know everything. Some can be arrogant and vapid. Most are trying to heal.
And anyone who, by now, doesn’t get that they will feel better if they aren’t overweight is living under a rock. Often, doctors avoid it not because they don’t know what to say, but because most people won’t make changes or don’t want to hear it.
Eating right never hurts, sometimes helps a lot, and the idea of controlling an illness with food is very appealing.
Sometimes, it works.
But, sometimes it doesn’t. We don’t have a lot of hard evidence as to why. Sometimes, illness just comes no matter what. And sometimes, as I have learned (and am still learning from what I have) is that some things are a burden to be born rather than a problem to be fixed.
The illusion of control can be nice. But, when you have done the rounds and are still sick, it can be hard to hear the advice because you are tired and in pain and it sometimes translates into “you aren’t doing enough to fix yourself.” I think that is the hardest part even when you KNOW the person and know their intentions are so good and motivated to help.
And sometimes, we just want a brownie;)
Hugs to you today, Lea.
I admire you for keeping on posting replies to help other posters with their dilemmas.