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.
Yeah, ‘slow and steady’ is certainly a more realistic approach to life.
I must admit that I am a dreamer at times 😊. I dream about how wonderful things could be! You know, I find myself saying, ‘If only this or that…’
I certainly had to learn how to be patient many times in my life. It can be tough for us when our patience starts to run short.
Thanks for this reminder! All of us need inspiration every now and then.
Thanks.
Don’t we all wish that we could hit a ‘fast forward’ button to speed things up for Lea? 😊
Then, she could proceed with life, experiencing a normal daily routine instead of struggling to do everyday tasks that most of us take for granted.
Wouldn’t that be nice?
Lea, oh, I was so excited when I read the Vi B12 link and hoping it was something new - hopefully you'll be soon reaping the benefits of all that you're doing.
- wishing you a peaceful weekend XO
I hope that in time you will see some improvement in your ability to function normally.
I know that you don’t expect dramatic changes overnight. It’s going to take time to adjust.
Your body has gone through so many phases during your treatments. This type of situation takes such a toll on people who endure this trial and error approach.
I can’t imagine how much this affects you, physically and emotionally. You have worked diligently towards achieving your goals and then you are faced with more challenges to deal with.
I’m sure that you have your days where you feel as if it will never end.
On another thread, we are joking about what we would like to have written on our t-shirts. One of my favorites that was suggested was ‘DONE!’
I know that you so want to be ‘DONE!’ with feeling crappy and to be able to be independent again.
As always, sending my love to you.
Llama, Chuck is always home when I take a shower. I bring my walker in and he is close by. It was rough yesterday and knocked me out so I had to lie down afterward for the rest of the day. For some reason, the dizziness gets worse after a shower.
Cxmoody, when I wake up, I go into the family room and spend as long as I can in my recliner sitting up. Some days I make it till 3 pm, other days 4. Then I have to go lie down in bed. I try to walk the hallway if possible. I always get dressed, too. I go to the kitchen table for meals as well. No meals in bed or in the family room, even during my first cancer treatment when I had 102 fevers 24/7 and was bedridden with all sorts of horrible side effects. I'd hobble out to the kitchen for meals that Chuck prepared.
https://www.google.com/url?esrc=s&q=&rct=j&sa=U&url=https://www.swintegrativemedicine.com/blog/can-b12-deficiency-cause-balance-problems&ved=2ahUKEwiqspqXgrSAAxV5pIkEHfroCOQQFnoECAAQAg&usg=AOvVaw2ofRHpEpNQ2MB7ZHcaMT6l
Reason being, low vitamin B levels can cause dizziness and deficiencies in this may lead to a number of neurological problems of one feeling off-balance. I know that your situation is caused by different factors, but I wonder if it would be worth asking your doctor if getting Vitamin B shots would be beneficial for you in any way.
I used to go to my primary doctor for Vi B shots when I was working mega hours and I needed to replenish - it actually helped my energy, focus, mood, concentration. And at the very least, maybe it would help to feel a little better and to recharge. I also attached a link below from WebMD discussing the Vi 12 benefits for dizziness, vertigo and the immune system.
- Sending love and prayers for healing XO
https://www.google.com/url?esrc=s&q=&rct=j&sa=U&url=https://www.everydayhealth.com/news/10-surprising-facts-about-dizziness-vertigo/&ved=2ahUKEwivrbKW9rOAAxVbpokEHZVCDfUQFnoECAsQBg&usg=AOvVaw1I6LVJAziw2WB8bBCaqNzk
Does the dizziness keep you in bed, or are you able to sit up ever? Just want a glimpse into how you have to spend your days.
Please be careful in the shower. Is Chuck home to help you?
There is no value in suffering, let's face it. Certainly not for 7 months since this whole ordeal began in mid January. Today I'm getting in the shower no matter what. God help me 🙄
Thanks to everyone for your kind words, I really appreciate them. I'd so love to post that I'm fine and doing well, believe me.
Any better today? We would all love to hear that you are improving day by day.
I know that you are sick and tired of being sick and tired. Anyone who is suffering like you are would feel the same way.
I really don’t know how some people feel that there is value in suffering. Sometimes, I wonder if the people who make this claim, have suffered like you have during their lifetime.
It is so easy to say all sorts of nonsense when a person hasn’t experienced these things for themselves. Honestly, all they are doing is speculating because they have not experienced what you have.
My heart, prayers and love are with you today and always.
Wishing the very best for you, Lea! You have paid your dues. You have continued on when others would have given up.
You are much stronger than you probably think you are. I truly hope that this discomfort doesn’t last for an entire year or more.
We can get through just about anything as long as we know that is is temporary. It’s when it seems like it is never going to end, that it becomes so difficult to bear.
Boo on those dang steroids.
I pray that God gives you some sign of hope to end this week!
Through this ordeal, you have really found out what you are made of, haven’t you?
Years ago. I watched a television special on the Bernie Madoff Ponzi scheme. Several people were interviewed.
For me, one person in particular stood out in the show. He was a psychiatrist, was married and they had children.
He looked forward to waking up early, enjoying his coffee in solitude and reading the newspaper. Then his wife woke up and had her coffee. She worked in his office. They rode together to the office on a daily basis.
Anyway, their comfortable routine was abruptly disrupted by what happened after they invested with Bernie Madoff.
One morning, he sat down with his coffee, opened the newspaper and saw the headlines about Madoff.
They had invested lots of money with Madoff. When his wife joined him at the kitchen table he said to her, “Brace yourself, today is the day that we find out what we are truly made of.”
It’s tough, because no one is ever truly prepared for catastrophe in their lives.
Your situation is even worse than people who lose their life savings. You have had a different kind of crisis. One where your actual life is involved. I can’t imagine how difficult this has been for you.
Wishing for all of this to be behind you, so you can lead a normal life again.
We all love you, Lea!
My leg is sore and very bruised from where I fell out of bed. The skin is torn too. It'll be fine though, no big deal in the scheme of things.
I made an appointment for next Thurs for the IVIG and Aug 18th for my 3 month PET scan.
😊 Thanks for the chuckle! I love doing genealogy but I have no Brazilian heritage! LOL 😆 Predominantly British! Not Brazilian.
Also, I misread NHWM's comment as "brazilian hugs" and I wondered how that was different than any other type of hug. Obviously, the heat is affecting me.
Sending a bazillion hugs your way today!