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.
So often it seems like meds or whatever medical treatment they give us to treat a particular condition will help us in some ways but harm us in other ways.
I suppose that all meds have side effects. Some are more severe than others. It’s interesting that some people will have adverse reactions and others won’t.
I had a doctor stress to me once that is why it is commonly referred to as ‘practicing’ medicine.
My mother would often say to me, especially when she was a patient at a ‘teaching’ hospital that she felt like a guinea pig.
Lea, I hope that you will get through the rest of your cancer treatments with as few side effects as possible.
I told them, my life is in God's hands. If he wants me to live in SPITE of this setback, I will. If not I won't. What other attitude am I supposed to have?? I need to feel better! Treatment will continue when and if I'm physically able.
Truth is, lots have had full remission after TWO infusions and that could be the case w me, idk. ALL I DO KNOW is I can't live in THIS disabled state or I may as well swallow all my painkillers at once. Now. Nobody knows what this feels like, they just want to push me to the point where the "cure" kills me, knowing full well the "cure" is only a postponement or delay ANYWAY. The road to hell is paved w good intentions.
Either these steroids work to get me back to good or I'm done w immunotherapy anyway. I no longer qualify in this condition. That's the thinking my family has to embrace and my son is 100% on board. Everyone else, not so much.
Bandy do not apologize that I'm too mentally confused to read long posts. It's my issue not yours. It's not brain swelling I'm dealing w but inflammation most likely, btw. 1 mri w contrast and 1 ct scan w and wo contrast showed no abnormalities of any kind in my brain. Yet they're there.
Alva, I'm sorry for the people who aren't here 36 yrs later after making decisions about their own healthcare. Too bad nobody's God but God Himself and can sort the bull from the chit in medicine. I was pumped full of vertigo drugs and told how I "brought it on myself" for 6 full days at the hospital when in fact it was not vertigo at all and I'd done nothing to cause it! I wound up having to take MYSELF off those meds and I'm glad I did.
The ENT, in her notes, said she saw no reason for steroids when she'd admittedly never heard of my condition so how would she know WHAT meds were warranted or unwarranted? She also felt I "could" walk and tried to get me over to the sink w/o my walker. So I suppose I'm a faker as well who was probably posing for her in an effort to gain sympathy or something. She also remarked I was "feeling better" which is what prompted the oncologist to call me earlier. He was like whhhaaaat? I don't get that this woman is better anywhere, so let me call her.
Modern medicine is nothing but opinions and guesswork.
I'm glad about the meds and your decision. I know you don't want to take them, but it is my hope/belief you are going to feel better and fast. Perhaps it is something I want so bad that I choose the belief.
You sound in fighting form.. Fighting for what YOU want and need to do at this point. I am so grateful to your son, for support of your decisions after you understand all options is the best help you can have.
My point with the 36 year survival is that I did most of it wrong, or against medical advice, made my own decision. I am certain as many did that who didn't make it. To me it was always like being at carnival and shooting those tin ducks that come round and round. They go down or they live to make another round, and it's pretty random seeming to me. I don't know why I lived with two positive nodes, dumping my pills in the hopper, being negative; and others didn't. God knows it wasn't prayers. I don't have answers.
You sound in fighting form tonight or just so over it and so depressed that it's coming out fighting form? I know medicine's anything but an exact science, Lea, but I do with all my heart believe that those of us who went into medical field fight with heart for our patients (most of us). Would that we were gods and not humans with limitations. I know that doesn't help. I know what it is to have the docs at the tumor board table argue about what is going on with MY body and what should be done about it. And I am so sorry. For ALL you are going through. My love out to you. Always.
Line them up, doc after doc. I will be the first one ready to smack the heck out of them. How. Dare. They.
They don’t know your spunk. Not, your honesty. Nor your intelligence. Not your ability to call what you see and not schmooze your way through a problem or a challenge.
HOW DARE THEY.
Okay. Gotta get myself off of here and calm down.
As soon as I quit growling, I will get back to praying.
When I was agonizing over what to do for my mom after her ICH stroke at a young age, I was lucky enough to have a rock star hospitalist who really involved himself in her case. We sat in a room on the 14th floor of a major medical center trying to hash it out.
His words are some of the wisest I’ve heard. What is her hamburger? For him, he would be ok with being kept alive if he was still capable of eating and enjoying a hamburger. For someone else, it might be just lying in bed and watching tv. For someone else, there might be a different measure.
I have often thought about that myself. I, like you, dear Lea, don’t think the fight is worth much if it simply adds more time spent fighting (in pain and miserable, etc).
I’ll go through pain and misery for time that I can then turn around and use to experience or bring joy. If it is just pain and misery to have more time experiencing pain and misery… well, like you said, what is it for?
And you are absolutely right in that most people have NO CLUE what every minute of that struggle feels like.
Your people, of course, just want you with them. Because you are loved:)
For me, my doc prescribed digestive enzyme supplements for my pancreas deficiency. The supplements caused a lot of hair!oss. A friend told me about the many benefits of celery juice, so I decided to give it a try. I can tell you honestly that after 2 months of drinking celery juice, my digestive system improved 80% and I didn't need to take the enzymes anymore. My hair loss is also much less.
I'm not suggesting that you drink celery juice. I mainly want to relate a couple of anecdotes that show how spices and plants can heal the body more efficiently than modern medicine.
Apple, carrot and celery juice is very tasty. The apple makes it sweet. I order this at health food restaurants.
So, I'll say this and hope it's of comfort: I admire your strength, your tenacity and your continuing sense of humor as you fight this cancer. You, Chuck, your family and your medical team are in my prayers every day.
(((hugs)))
"Greater love has no one than this: to lay down one’s life for one’s friends."
- John 15:13
LL, you may not be laying down your life here but you are certainly laying it out before us. You are teaching your forum friends so much every day. Thank you!
"Another protective element is the blood–brain barrier. As the name suggests, this is a barrier between the brain’s blood vessels (capillaries) and the cells and other components that make up brain tissue. Whereas the skull, meninges and cerebrospinal fluid protect against physical damage, the blood–brain barrier provides a defence against disease-causing pathogens and toxins that may be present in our blood.
...
The blood–brain barrier is generally very effective at preventing unwanted substances from accessing the brain, which has a downside. The vast majority of potential drug treatments do not readily cross the barrier, posing a huge impediment to treating mental and neurological disorders."
Source: https://qbi.uq.edu.au/brain/brain-anatomy/what-blood-brain-barrier
I read one of my many favorite Bible verses this morning and thought I'd share with you. It's Zephaniah 3:17 "The Lord your God is with you, He is mighty to save, He will take great delight in you, He will quiet you with His love, He will rejoice over you with singing."
The thought of the Lord of the universe singing over me brings tears to my eyes every time.
So I pray that God will quiet you with His love so you can find rest, and that you can find great peace and joy in Him singing over you.
Geaton, I'm not sure your purpose in linking an article to suggest steroids are unlikely to be effective "crossing the blood brain barrier" bc guess what? This is about my last hope. I do not need any more doubts to fill my mind or keep me awake at night or up at 3am. A little knowledge is a bad thing. I prefer the story Dr K told me of his patient who was in SUCH a brain fugue, lying in a hospital bed, that she lost her ability to speak and eat. Within 2 days of going on prednisone, he walked into her room to see her sitting up in bed eating and chatting with the nurses. Prednisone is a miracle drug we'd ALL rather avoid taking but MUST take when the situation is dire enough. Not to mention, ALL the pain meds and benzos apparently crossed the blood brain barrier bc they gave me horrible brain zaps!
NGE thank you, my friend, for your post. That's all, just thank you.
PB, I was up to the bathroom at 3 this morning and felt not much dizziness at all. No brain fog either. Much less sleepy in general since I took 2 doses of the liquid turmeric. I so wish I had more time to try it alone w/o the prednisone but I don't feel I do with all the time that's been used up already w testing. It's good to hear the great results you've had w celery juice, too. What many don't understand is when the suffering gets bad enough, we become willing to try things that sound outrageous or ridiculous to others and sometimes find relief. I'm losing quite a bit of hair myself which isn't supposed to happen with immunotherapy (I/T), but then again, neither is brain inflammation. 😑
Bandy, I agree about the oncology nurse but they're thick as thieves over there, it seems. Yes, Kaiser has a big online portal where we can do everything; send direct msgs, make appointments, read test results, lab work, doctors notes, after visit summaries, etc. It's a good feature. Dr K is the one who's been on my case and following it the entire time since Dr C has been on vacation. So yeah, he's entirely familiar and up to date w all of it. Steroids are a last resort with I/T so that's why SO MANY things had to be ruled out first. He even personally called the ENT yesterday due to odd info she wrote in the after visit summary and then called me afterward for a 45 min convo. Btw, God be with you was something mom said to me ALL the time 😊
Yes prednisone can cause mood swings and other unpleasant side effects but you probably dont have to worry about turning into the Hulk while taking them.
Which is lucky for all those incompetent doctors and nurses you have been dealing with.
Imagine the look on their faces if you turned into a red headed gigantic green female Hulk cracking a whip at them (you gotta have that whip to snap the sense back into them). 😄
I love what 499HopeFloats said about the "Hospitalist and the Hamburger". Says it all. YOU are the decider on cost-benefit ratio here.
HOWEVER, if the steroids work as I think/hope, you will be more able to come out of the miserable side effects. For me steroids are such miracle drugs I would crawl to get that first 60 mg. pill. And when they work they work FAST.
Once you feel better it's time enough to think of how to play the game of ramp-up-the-immune system, then knock-it-out-again. It is a game that has been played with success before. Kind of like rounds in a prize fight.
Think of me when you take that first pill. Have it with a side of turmeric and celery juice. I'm thinking of trying the latter myself; I have a BEAST of a digestive system, and always did.
My DD and dh want me here at any cost bc they love me, I get it. What I don't get is Chuck saying it's fine if I'm drooling and wearing a DIAPER in a wheelchair 24/7. Maybe it's ok (selfish) for HIM, but not for ME. No thanks. I/T is supposed to kill the cancer, not turn me into a vegetable 😑
Colleen, ty for sticking up for me. When Dr K called me yesterday, he asked me to summarize my story from beginning to end for him. I did, in a bullet point fashion with start dates and how things unfolded from 2/23 to now. Afterward, he said he was astounded at how well I'd summarized the series of events over a 24 day period in such order and so precisely, just as the residents were taught to do! I'm a factual, no nonsense person who's been treated like a ditz for the most part here. Don't waste my time and I promise not to waste YOURS. My goal is a resolution, not to have a pity party.
A very ill Priest taught me NEVER to assume when a person should go, taught me it is ALWAYS that person's decision.
He was in dreadful shape, with me outside his room raging at his god for not taking him.
Then he calls me back in and says:
"If I fall asleep could you wake me at 9".
I had to know why, because being awake meant a whole lot of pain for him.
And so I asked.
His answer?
"Quincy's on and I hate to miss it".
For some it's a burger. For me it's walking, reading. For others? Quincy.
I love your last several paragraphs, Lea. You are every doctor's and nurse's dream in being able to give a history. Every patient is a mystery and without the clues the detectives are helpless. I understand you anger at medical system (I have FELT it for myself and for my patients). I still believe it was the privilege of my life to have been a nurse, and believe that MOST of us try our best, full of limitations that we are. Problem is that when we fail our patients cannot just go shopping at another department store for what they need. Not so simple as switching from Macy's to Nordstroms. When you fail the repercussions are dire. And we know that. I know you know all that; you have your DD as proof.
There now. Failed at short and sweet yet again. Hopeless case.
I bet we could start a thread about whether doctors and nurses are any good at all and it would outdo the DIAPER THREAD!
Alva, sounds like celery juice is definitely worth a try, why Not? Again, when the Big Pharma meds don't work, get a juicer and start grinding 😁. I know that Sprouts sells juicing veggies in huge quantities for less $$$.
Ty RD. Prednisone is THE fastest inflammation reducer ever. Thank God you found something to hep your migraines when nothing else works.
Oh, honey, I will try ANYTHING when desperate. Bring on the rattlesnake venom. I have a fondness for rattlers, anyway. Of a kind.
The other side of that coin is the nurse who spends 15 min digging in your chart to figure out how to help your pain and get you to sleep, checking on you every 30 min. And her plan WORKS. Ariana I recommended for a Daisy, and the CNA Ernesto from the Philippines who called me by name each time I pushed the call button then rushed in to help me to the toilet. He I recommended for another award for CNAs.
A little kindness goes a lot further than "medical knowledge " oftentimes in the hospital. Like the doctor who said "oh it's your rotator cuffs" when I was experiencing obvious neuropathy in my arms to fingertips! How to loudly say I COULDN'T CARE LESS in 5 words or less 🙄
And to that I will add an Amen and Amen!
It's a big subject.
Those of us in the medical profession are as limited and faulty as human beings of any other ilk (or profession), and I never had a high regard for human beings in general. We are as good or as bad at our jobs and anyone in any field, the difference being we are not repairing (or attempting repair of) a CAR, but rather of a human being.
In all the new machinery of late I think many of us have become disconnected from/lost to the human at the other end of the lines. Sadly. Horrifically. I could go on (as you can imagine) for hours about what was lost when RNs were taken from "total care" to "pill pushing computer clickers" who call for the help of their overtaxed CNAs for every "human/humane task.
I loved total care. No CNA. Me and the patient and we were joined at the hip for that 8 to 12 hours.
But the powers-that-be decided it was a waste of an RN's training to wipe a bottom or two. They had their points. There was little argument. We became cogs on a big wheel, and none of the cogs communicating.
But we will solve all this just as soon as you are feeling better. DD can help.
Meanwhile, give them Hades! Pretend you are me with a slab of corned beef at the Safeway Counter. (or is it that you are oft FEELING like that slab of beef itself?).
Love to you, woman.
But, on the wishing me joy comment, my housekeepers came yesterday. She knew I had cancer, but this is the first time she's laid eyes on me since I told her a couple weeks ago. I look pretty bad....fact, not opinion. She told me my new bill would be $50 per session instead of the usual $150. I said what, given my hearing loss. She repeated the same statement. I said why?? She said bc she wants to help me....her DD needs $50 but she will take no money from me for her cleaning fee! Of course that set me off crying. 😊😁
I took the 60mg of prednisone this morning and while the dizziness is no different, I was able to focus on my face in the mirror on the bedroom wall for the first time in ages. I didn't realize I have 2 sets of eyebrows now....one red and one gray 🙄