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.
Also good for you for walking, even if all over the place. Movement is good for us. It is one of the things you can do to build yourself up.
Good sleep is another and if you get the key to that me let me know. 🙄
It's important for your healing to get the right nutrition - lean protein, eggs, dairy, veggies, fruit whole grains nuts and seeds sort of thing.
It's good for us to eat 5 colours a day - e.g. red - a tomato, strawberries, bell pepper, yellow - peppers again, corn, pineapple, green - salad, cabbage, broccoli, orange - carrots, peppers, yams, blue/black - blueberries, blackberries, plums and what ever else works. What you eat is what your body has for maintaining and healing itself. And as we get older more healing is needed.
Socializing is another aspect of good self care. Lady, you have that nailed!!!! 😁
Reducing stress most of us need to work on. I really find the deep breathing exercises help to calm me down when I am feeling stressed. It's something any of us can do anywhere, any time. I think attitude is part of this and again, you have that nailed!
I'm 85 but I still have goals health and other wise. Just because you are getting older doesn't mean some things can't get better. Just because you...fill in the blank...doesn't mean you can't work on and improve some things.
You are a going concern, Lea, and some one to admire.
hope - sorry you are part of the CFS/FM club. I've had it 30 years now, triggered by some severe personal stress. I manage, not as well as if I didn't have it, but I manage. A little exercise is better than none 2 squats are better than none. As of recently, through the use of supplements, I can live my normally not very active life without pain and brain fog. If I overdo it WHOMP! I get runover by a bus. Still working on pacing myself during times of overactivity (like moving house) so I don't crash. It's a big learning experience. I love picking up speed and doing more stuff, but I don't like paying for it later. All the best to you.
I eat pretty well from a nutritional standpoint, it's the sleeping I'm struggling hugely with. The steroids keep me ramped up but for a few hours a night. I'm so exhausted I'm just lying around in bed the past 2 hours, no sleep is forthcoming though. The breathing and praying helps me some, too. I may eat a half a gummy here shortly to see if it helps. Seems like nothing helps or hurts me much in regard to all this toxicity, either. Dizzy is dizzy and this crap will let up or it won't whenever it feels like it.
It has me laughing (snickering is more like it) that people are calling to see what we've planned for tomorrow. Oh I don't know, I was thinking of an Easter parade down my street complete with floats and a marching band. Then I'll cook a 6 course meal and invite all the neighbors over for an egg hunt after we eat 🙄
For tomorrow, I'll be grateful to get to the toilet w/o too many issues, basically. To not fall flat on my azz from leaning over too far. But I'll work on my gratitude list too bc it's important not to get stuck in the weeds w all this, recognizing God's blessings along the way.
I swear by podcasts to put me asleep those rare times I can't sleep. Normally I am gone before the head hits the pillow. Sleep of the innocent, don't you know?.
But if Chuck's beside you and you don't use earpods that won't work. Give me a bit of Terrible, Thanks for Asking, and I am out like a light in no time.
@ Golden, you give me hope. They say that if we will just get 30 minutes a day of movement we will do ourselves a world of good (all according to AARP bulletins. So Lea and Golden you are in.
Happy Easter tomorrow. As to what are you going to do with your day? For me it is hoping some stale marshmallow peeps show up somewhere. That'll be enough excitement other than my walk. It is said to be good weather here, and the succulent garden needs addressing; I find it easy to get down; getting back up can be either a problem or quite funny, depending on how you look at it.
May you have a glorious Resurrection Day, LL!
You are treasured, here!
Happy Easter everyone. For us, it is not what it used to be. No family dinner. I will go to church alone and hubby, former pastor, is going golfing.
I hope that you were able to sleep.
Glad that you managed w/o him - God bless you.
Happy Easter.
Lea, I weirdly understand DD’s take on her diagnosis. I was the same way at the front end and even now, after two decades of living with it, I don’t talk to people about it unless there is a very good reason.
If she is in the medical field, it has to be 10 times worse.
CFS/FM have had a lot of stigma attached to them over the years. Many people don’t get it and a lot of drs are in denial. It is so much more than “being tired or in pain”. Beyond debilitating and identity-sucking is how I would describe them. They are a really complicated cluster. Only because of what I (in my humble opinion) consider to be CFS resulting from covid are they even on anyone’s radar now. Hopefully, this will be the impetus that brings the cure.
Also, there are a lot of people who live really unhealthy lifestyles that jump on the bandwagon, which does a huge disservice to real patients. A big test is who you were before you got sick. The first dr that actually helped me (after 7 years and $50k of trying to figure out why I went from a triathlon racing, active, involved, successful professional to someone who could barely brush her teeth) was a friend of my in-laws, who knew the “real” me. He fought to figure me out and was so kind… I will always cherish him for that.
I can’t tell you how many drs told me I was just getting older… I was 27. SMH.
I say all of this not to bore you. There is alot of denial that comes with a diagnosis that no one understands, that they can’t fix and that no one can see. You are always fighting everything and rarely hear a word of understanding… it’s almost like you have to prove you are sick or something. Very weird dynamic, especially when you are young. She is SO lucky to have a mom that gets it and supports her.
My prayer for your Easter is that your azz never touches the ground🤣
Blessed Easter.
Lea, the struffole story made me chuckle. Was at the pastry shop today and thought of you.
Take care friends.
I hope and pray that whatever you're able to do today brings you much joy and puts a smile on your beautiful face.
And to everyone else following this thread....happy Easter to you as well!
He is risen! He is risen indeed!
I am wishing for a good day for you, for Chuck and DD and the Chef. For all the family. I hope it's a day of rest, feeling better, and lots of love. If there is a stale chewy Peep around anywhere, that, for me, would be the cherry on the sundae. (They are at their best stale and chewy).
All my love to you and your family.
Now there's some Easter FUN for all ages!
Praying for your healing as always and better days ahead. I am sorry you have FM and the chemical sensitivities that can go with it. The pain and stiffness of FM is no fun. But you know that!
Hope - thank you. Mother lived to 106 and longevity is in the family both sides so I figure I better look after this mind and body so these years are as good as they can be. I understand being in denial too. There is still much misunderstanding about CFS/FM. When I first got it it was thought to "all be in your head". Like walking up a long flight of stairs which I used to do so easily suddenly turned my legs to jelly, and being exhausted for days after doing a long walk I used to do regularly was in my head??? But the insurance co involved when I was off work wanted me to see a psychologist. I upped them by going to a psychiatrist who I told my story to and he believed me. We met and talked about our children and just had nice visits and I went back to work after 2 years. At the beginning I could hardly do my shopping. I remember one day after doing 2 aisles, the energy drained out of me and I left the cart, walked to my car, drove home and lay on the sofa in such pain that nothing would touch. I never found a dr who could help me, but have worked my way back to better health by myself. I couldn't read (brain fog) for several years which was a big loss. After my youngest son was killed I couldn't read for some years and was just getting it back when I got CFS/FM and lost it again for a number of years. Anyway I truly sympathize with anyone who has it. There still is stigma. My dd is just coming around to believing that it isn't depression. My oldest son still thinks I can think my way out of it. 🙄
So dear Lea, I understand well about setbacks, self-advocacy and also the importance of tiny steps towards improvement. They are worthwhile and are to be celebrated!!! 💃🎉🎈
Alva - re getting back up - start doing squats!!! They are probably the one most beneficial exercise that everyone should do, Lea excepted - for now! I started doing them about your age and I can squat right down now and get up with no problem. Start by holding onto something for balance and go as low as you can. Then practice a few times a day - just what feels OK to you. I was stiff to begin with, but improved slowly with time. OK, off my bandwagon now!
Here's to having a good day and eff the fm and all the other conditions!
I woke up to the sound of someone cutting down a tree on Easter morning? Its 2:30 EST and they are still working. DH and I went to breakfast so went around the block to see what was going on. I have not walked in ages and did not know the house is now abandoned. Seems because of that everything became over grown. Hope someone has bought it and will be fixing up. Its a cute little house.
My ((HUG))💞 for today.
Last night I took a painkiller for right side pain, and a .25 Xanax a few hrs later, and slept until 10am. I actually feel human today, emotionally especially. Dizzy too, but what else is new? 😑 From now on I'm going to medicate as needed to stay more functional instead of trying to cope w 2 or 3 hours of sleep per night.
Its 70 degrees out and a beautiful day all the way around. I'm walking on my own some, in spite of feeling so drunk......wo the walker, so that's SOMETHING to be happy about. I'm sure I wasn't able to do this even 2 weeks ago. I'm going with "this chit is lifting" even if I don't fully believe it yet. Hope springs eternal, right?
Golden I recall sweating bullets when reading your posts about mom living to 106. 😣 Now I'm sweating bullets (with flushed prednisone face to go w it) over the Thought of doing SQUATS. Girl, stop skeeeerin me 😂🤣😃
Hope, you are so right about the stigmas attached to certain illnesses and autoimmune issues. Half of everyone thinks the sufferers are whiners or faking things! Just like mental illness.....something difficult to prove empirically yet it's so hard for the person who's suffering. A bald chemo head is "valid" though, in our moronic society that requires proof of disease to acknowledge it's validity.
OK, when I end up on the floor I will call YOU!
My balance is a mess. My whole family had poor balance. I do exercises for IT, which do I admit, help.
I have two bad knees. They were actually arthritic already in my 20s--go figure. I walk a ton so they are holding at 80, but squats, HON...............if I EVER have to "go" in the woods again on a car trip I am well and truly sunk. The knees just won't bend well.
You make me wonder if starting SLOW I can work these old muscles to support these old knees. Going to try what you say.
Lea, forgive our descending into maladies discussion again, hee hee.
I am THRILLED that you got that good sleep. YES, DO use what you need to help you, esp to sleep. There is no reason not to. If we need to send you to rehab in 2 years to clean you up we can worry about THAT then. My feeling is we either abuse drugs or we don't. I don't see you as an abuser. Just fear you error in the other direction, not using what you should to help you. The rest is so restorative.
I am in for gardening break. N. always asks me to take breaks because I won't, but now I HAVE to. I told him I am soon in for the BIG BREAK, hee hee. Of something anyway.
Are you trying to turn my peeps into purple-peep-puddles, Lea?
Walking better than you were is a great accomplishment. Squats are not impossible for anyone, Lea. Don't be skeered!!! 🤣😁😂 We are survivors - the walking wounded. Might as well go for broke!!! You can start on them later.😎
Alva - good for you!!!! And walking is great exercise. Slow and steady with the squats will allow you to make progress. Muscles can develop strength at any age. I don't do many a day due to CFS/FM but they sure come in handy when I need to pick up something off the floor, or take a leak in the woods. it took me a few years to get to where I am. Squats are a good exercise for strengthening core muscles and balance. Balance is about the nervous system but also about muscle strength. I know you don't like supplements but glucosamine/chondroitin/MSM may help, even if just with symptoms. They won't hurt in recommended quantities.
Off the roast my turkey thighs. Seems appropriate somehow.😁
Happy Easter to our wonderful Lea, her amazing Chuck and to all of you!
Lea, so glad you had a good sleep. That's so important with anything that ails a person.
Still praying.
I have an appt with the oncologist this Thursday. I emailed him w an update asking if I can have a blood test on tues before the appt. I'd like to see where my liver numbers are at now. The appt w UC Health is next Tuesday.
Chuck goes out every morning 7ish to 9ish shooting bird photos w my son in a nearby park. I'm glad he hasn't stopped doing that. I am loving the thought of taking the dog for a walk outside.....to be able to do such a thing sounds divine right about now.
Easter was nice yesterday, and I hope you all (who celebrate) had a blessed day too. Happy Monday to everyone.
I am seeing you out there pounding away on that keyboard already, answering our OPs. It is always for me a signal as to whether you feel well enough to do it or not.
Hoping for a good day for you. Hoping things just a bit better every day. I know it's a "simon-says" game in which you have to deal with the "take-one-giant-step-back" here and there, but hoping the momentum keeps forward over all.
@Golden. Starting squats and you would be amazed how little I can do. The weight going down on the knees as I try at all is amazing and lets me know how MUCH I need this; my leg muscles may be strong for walking, but there's a whole set I haven't been using that supports my knees. I am determined, slow but certainly. Hiring you on as my PT consultant. Suing, of course, if I hurt my little self, hee hee.
Hoping for a good week for all. Lea, looking like Dr. C way out at end of week according to my calendar? He scares me! Hee hee. I think he tends to hystericalize. I had a psychologist tell me once that I had that tendency. She was right.
Lea, my Mom had neuropathy in her ankles. She told the doctor she felt like she had ankle socks on all the time. No diabetes and her Neurologist was surprised. I always wondered if it was from Roller Skating 4x a week growing up.
((HUG))💞 Blessed day too.😏
Good idea to get your liver numbers checked. Re the pins and needles, FM does that, For years I have wondered what the wandering numbness in my feet was. Patches here and there that came and went. This past year it was the whole top of one foot which has slowly gone. If your liver numbers are OK, the pain in your side may be FM related. I had it with swelling under my ribcage right hand side. I found a solution.
Don't want to do much of anything these days! I think I have spring fever - the lethargy, laziness type. 🦥(that's a sloth in case you don't recognize it lol)
Hope your day was decent at least in parts, woggly head not withstanding.
Here's a little glitter for you, glam gal. You definitely spread it around.
Every woman in this world wears a little sparkle, some in their dress, and some in their eyes. – Shahla Kha.
Another day, another chance to sparkle.
When life gives you Monday, dip it in glitter and sparkle all day.
She leaves a little sparkle wherever she goes. – Kate Spade
Use each moment to make another’s eyes sparkle and to warm a heart. – Doreen Virtue
Alva - you signed a waiver. Don't tell me you didn't!!! 😉 I can well believe how little you can do. My knees screamed at me when I first started. Slow and easy does it. My knees are excellent now - no pain whatsoever. So thankful. It was well worth it.
hystericalize - that's a new one for me. I know about catastrophizing. I don't think I have the energy to hystericalize. But that does describe very well what my mother did on many occasions, thankfully, now well on the past.
Joann- those cookies sound neat!
I hope your day has been good, Lea. JoAnn29, those cookies used to be a Sunday School lesson we did years ago.
Continue to pray for you.