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.
We don't always understand why God allows some things, but we can rest in the knowledge that He is still good and has our best in mind, and He will work ALL things out for our good.
I've found ativan helpful. I'm on a very low dose and it is very subtle. It doesn't zonk me out, just helps untighten my neck muscles and ease my anxiety a bit.
I'm sorry you are still feeling so dizzy. I pray this all gets better for you very soon.
cx - Thx I have done years of reading on this condition and new research is coming out all the time. If you have any questions just fire them at me. I'll see what I can do to answer them.
Lea, migraines are part of the picture as are many chemical sensitivities/allergies. I have food allergies to gluten and dairy mainly - also watermelon of all things.
From what I am experiencing and I have read, CFS seems to be more muscle metabolism/energy related and also for some, dizziness when they stand up from sitting. and some cardiovascular and other issues. FM seems to be more pain related which now they think comes from the brain inflammation. This is highly simplified but works for me in the way I approach choosing supplements to help. My IBS issues are not too bad right now. But I have to be careful about what I eat.
I'm sorry you are having such a hard time, and you have had such a hard time. People of any age get these conditions. I am glad your migraines are under control. My dd gets them.
There are many things the drs don't know. Whenever I get my annual exam everything comes up roses. I look like the healthiest person in the world. Not!!! Few drs understand CFS/FM. When I first got it about 30 years ago they thought it was all in your head. Not!!! More and more they find biochemical and other differences in people with CFS/FM.
Prayers for all of us to get healthier.
Peggy Sue, that is interesting. Never had chemo or radiation but I get fungal infections more than anything else and they are a pest to get rid of.
My mil’s health dramatically decreased in the months immediately following her second round of chemo and radiation. She had a platform built for a bedside commode as that was the extent she could transfer. She was in a wheelchair for months. Dizziness and falling were a constant.
The cause of much of this was a very rare lung infection requiring an anti fungal I had never heard of. The condition was resolved, the drugs tapered. This was probably six months after the last cancer treatment.
Fatigue and gut issues 100%. Anxiety, joint issues, spine issues, hyper sensitivity to noise/smell/light, unrestful sleep.....yes to all and issues I've always chalked off to me just being ME. And the body temperature always being OFF 24/7 is another thing. I'm never comfy, ever. Horribly painful periods my whole premenopausal life......it sounds like I've been the poster child for fm w/o knowing it.
So the dizziness is off the charts again today, my freaking head is SWIMMING. I have no idea if it's withdrawal from steroids or the lack of steroids now in my body that's doing this, ? Who knows. And if one more family member asks me, "what does the doctor have to say?" I shall scream! 😑 The teams of them all have to say I DON'T KNOW. All I know is I have 5+ more weeks to keep tapering off this chit and wonder what'll happen between now and then. Ugh.
Golden, you’re a fount of knowledge! Thank you!
Praying for you, LL!
May I use your movie quote over on the "My favorite things" thread?
Such a good example of CBT (Cognitive Behavioral Thinking) errors being corrected.
"One of my favourite movie quotes is from the Princess Bride - when Buttercup and Wesley are in the Fire Swamp.
Buttercup: We'll never survive. Catastrophizing and All or Nothing Thinking.
Westley: Nonsense. You're only saying that because no one ever has. (Magical Thinking, Lol)
With ME/CFS comes fatigue, and sometimes weakness too, especially after over exertion which may be not a large amount of activity, unrestful sleep, the hypersensitivities, brain fog, muscle and joint pain, also some gut issues. There is lots of overlap with FM. Oh, and anxiety comes a part of this mix too.
R is different - too independent some times for my comfort, but lots of good qualities. He is a fighter and so are you!!!
I have been working on the anxiety with my counsellor and learning to recognize it for what it is and finding ways to ramp myself down - deep breathing for example. Most pills only go so far though some antidepressants do help a lot.
Gershun, it's all about taking care of yourself and learning ways to do that. It doesn't all come naturally. Doctors here are very tight with Ativan too. They want you to find other ways to deal with your anxiety. I used to walk it off a lot but can't do that anymore.
Lea, you have an inner strength that rises up and meets challenges. That truly is a treasure!
One of my favourite movie quotes is from the Princess Bride - when Buttercup and Wesley are in the Fire Swamp.
Buttercup: We'll never survive.
Westley: Nonsense. You're only saying that because no one ever has.
Hope you are having a decent day!
R is an amazing human, God bless him for fighting back. 😘
Gershun....24 pills for 3 months is insulting imo. I HATE that feeling of needing to hold off on a needed med for fear of running out, too. I also greatly dislike Ativan, it acts in my body like a strong depressant making me weepy. I use Xanax .25 mgs instead, as needed, which does a better job. Although I don't imagine your yutz of a doc would write a larger prescription for IT, huh? Ugh. Why not consider going on Paxil or a similar med long term if anxiety is going to be an ongoing issue? That's what I did in 2000, I went off Xanax and on Paxil, and it made a huge difference. It was as if a light switch flipped off inside me and I calmed down, thank God. I'd go back on it now, too, if I started to use or need too much Xanax.
Chuck and Honey ate the leftovers lol!!!! I believe it!!!
R is very calm in crises and has a very high pain tolerance. You have a while after an accident before the shock sets in. His mother told me that when he was taken away in the ambulance she thought she would never see him alive again as he was purple and bloated from shock.
They told him in hospital that he might never walk again. He told me that all he could think of what getting back up on a horse. Within a year he was back on a horse.
He said when the nurses came to move him in bed in the hospital - doing their thing - he could feel the bones grating against one another. so he told them not to touch him. They also gave him strong pain pills which he hid under the mattress, and they told him he would probably have to take them the rest of his life. He doesn't.
On the farm where R grew up he said at one time or another, he, as a young person, drove one or the other of his 4 brothers to hospital at different times. I remember being told that an aunt (by marriage) of mine drove her father to hospital when she was less than 12. He had a heart attack or an accident (can't remember which) on their farm. It's how it is on a farm. Kids learn to drive equipment young and to deal with emergencies. Those farm kids are tough!!! And he was younger.
Mind you - he took all the meds they gave him after his recent surgery. Different kind of pain I think.
Tylenol is ridiculous for the pain you had. Sorry you had to hear that guy who was suffering - sorry for him too. That seems wrong in this day and age .
I think Chuck ate most of the brunch leftovers today....lol. He and Honey.
My God how did R drive himself anywhere w a broken in 4 places pelvis? That's got to hurt!
Nhwm, When I first sent to see my PCP after that fateful ER day when I found out I had metastatic melanoma, the bone cancer pain was horrible. My PCP was beside herself saying they HAD to get my pain managed. Stat. Okaay......then do it. No arguments from me. Doctors don't know WHAT to do with patients in pain. Pain happens and isn't always fixed or managed w a little white pill or 2, either. In the ER, they told me to take TYLENOL for the mind numbing pain I went in there for, which was cancerous rib lesions! They hate writing scripts for opiates these days thanks to drug seekers and abusers making it hell for all of us 😑
When I was at UC Health getting spinal surgery last month, there was a man in another bay crying out loudly in pain for at least 40 minutes, non stop. Not something anyone wants to hear, most of all him! I was glad to be getting knocked out for that one, let me tell you.
R sounds like my brothers. They don’t realize how dangerous it is to drive yourself when you’re in pain or otherwise upset.
Lea, brain inflammation can bring all kinds of things, Depends where the inflammation is and how much. There is absolutely nothing wrong with your mental functioning! That part of your brain is A1 imo!!! I have fm brain inflammation and can have muscle pain and brain fog or one or the other or other things together or separately depending on ??? the weather, overactivity, stress... They come and they go.
Praying that this is not your new normal. I always expect to get better even if it doesn't look or feel like I am!!!
Bet you have/had tasty left overs from that brunch. I can live on left overs. Once you are off the prednisone you can celebrate with a good meal of what you haven't been able to eat!!!
"Finally, my brethren, be strong in the Lord and in the power of His might. Put on the whole armor of God, that you may be able to stand against the wiles of the devil. For we do not wrestle against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this age, against spiritual hosts of wickedness in the heavenly places…. " Ephesians 6:10–12
Need - it's hard waiting for results. You are so right about not driving when you are stressed. R on one job fell down one story inside a house and broke his pelvis in 4 places. He drove himself to his parent place for help.
Lord, why do the men in my family think that they can manage everything themselves?
Years ago, my older brother drove himself to the hospital when he was having his first heart attack! His wife was at work. Of course, he should have called an ambulance to take him.
My younger brother did the same thing. He drove himself to the doctor. His pain was so great that the doctor’s office called for an ambulance to take him immediately to the hospital. He could have been in an accident on the way to the doctor’s office.
He called me to say that he had been taken to the hospital.
I wonder how many people try to drive when they are in pain. I suppose they are afraid and want help, plus they don’t realize that they are in that much danger.
Actually, I could say the same thing about us, family of those who are ill. We all have to be careful when we drive if we are stressed and distracted by our circumstances.
I remember when I heard that my daughter had been in a serious accident. My friend immediately said, “Don’t drive! I am coming to bring you to the hospital.” She was wise to tell me not to drive. She said to me, “I don’t want you to have an accident on the way to the hospital.”
I have to catch up on your thread. I certainly hope that you have made some progress and that you are feeling better.
Thanks for asking about my younger brother. They did remove a large tumor yesterday. Still doing more tests and he is waiting to speak with the doctor. He said his pain was less sharp today than it has been. They do have him on pain meds.
All of my brothers have serious heart issues. So, that’s always in the back of my mind.
Sending my love and support to you today and always.
Golden, I thought brain inflammation automatically brought brain fog with it. My bad. You can see that losing my cognitive function is a worrisome thing to me, so I'm just thankful it's not yet been an issue in this chaos I've been enduring. I keep an eagle eye on myself too.
Basically, like I told DD yesterday, I have all bad days with a few good days thrown in every once in a blue moon. That's my "progress" 14 weeks (tomorrow) into this toxic reaction to the immunotherapy. Nothing's really changed, unfortunately. And there's no rhyme or reason to any of it, either. I wake up dizzy and go to sleep dizzy with some days better than others. I don't use the walker anymore unless necessary, but I'm still not able to walk normally or think about going out w/o it. Or shower w/o the damn thing either. So maybe this is my new normal, permanent state of being, Idk.
Nhwm, please check in and let us know how you are doing and if your brother had surgery yet.
You certainly have been lucid all along, Lea. There's no question of that.
What I was referring to was recent research I have read that found brain inflammation in fm patients and, as I understand it, that inflammation can cause brain fog, but also can cause headaches, muscle pain, sensitivity to noise and light, fatigue and things like paresthesia and/or any combo of. Finding ways to lower my brain inflammation. therefore the symptoms. by supplements, stress management, light exercise etc. has helped my quality of life. Just sharing my stuff.
OK, that's it. Off my soap box now.
I hear you about wanting to find something to knock you out for a while. Me too, but I haven't found anything yet. 🔨😁
Bacon wrapped onion rings!!! I never heard of them but they sound wonderful - and low carb!!!! Everything sounds wonderful but I could eat those and the eggs. Yum!!!
“Dream big, sparkle more, shine bright.” 🌟✨🌟
Please come to my house and cook breakfast.
Thank you.
Golden, if I ever had brain inflammation, it's never manifested itself as brain fog, just tiredness. I've always been lucid, thank God, even throughout this ordeal.
I feel better this morning which is typical of day 3 of tapering. Yesterday afternoon I said SCREW IT and ate 3/4 of a cbd gummy and ugh, was SOOOOOOO dizzy I had to drag out the walker and was tipsy on IT. But I didn't care as much. 😏 So much for trying to fix dizziness with cbd gummies (with thc). Sometimes I feel like I'd be willing to knock myself out with a hammer just to shut down for awhile......know what I mean?
My DD and her police officer bf are coming over here for breakfast in 45 minutes. In Chucks typical go overboard style of doing things, he's been to the store at least 2x, has every platter we own (which is a LOT) laid out, is assembling a fruit tray, bacon wrapped onion rings, French toast, eggs, sausage and God knows what else. This is one time I'm happy not to be able to help or help clean up the mess! 😂
How is the "doing without the walker" going?
"Keep calm and just sparkle." -Reiki.
"Life won't sparkle unless you do." -CraftyChica
"Not all stars belong in the sky." -Redbubble
You are a star, Lea!!! ⭐⭐⭐
Friends of ours do it from Florida to your neck of the woods where their daughter lives. They are more organized with getting off in the morning. Just had my Dairy Queen Fix. Anyway hope you feel some better days ahead.