
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.
Skyrizzi is a biologic used for moderate to severe Crohn's disease. Did DD ever look into it? I'm not recommending it......just mentioning it. 2 treatments at first, then 4x a year for maintenance.
My brothers are always trying to get me to indulge in food like they do. I love food as much as anyone else but I am the opposite of my brothers. I watch what I eat because my dad had diabetes as well as my brothers.
I take after my mom with eating healthy. She lived to be 95 without getting diabetes.
My oldest daughter has diabetes. She has type 1 diabetes. She has lots of trouble balancing her blood sugar. Unfortunately, the adoption agency didn’t provide a thorough medical history to us.
Back then open adoption wasn’t legal. The only thing that we know is that her biological mother and father were college students.
I do get concerned about my daughter’s health. She also struggles with Crohn’s disease which is miserable for her. She is constantly watching what she eats.
I have had to accept that my brothers don’t monitor their diet as well as they should. I’m not going to waste my breath or stress out over it because it would be pointless.
Please, Lord, please!
If your brothers could see what diabetes does to the body they would stop. Even those who have stuck to their diets (there is a little cheating) have problems as they age.
My GF was a juvenile diabetic who was diagnosed in 1958. She used strips to to test her urine and gave herself needles in her thighs. In her 50s she had a massive heart attack she almost died from. By 60, she had her leg removed from the knee down because of a sore that would not heal. Gangrene had set in. By 63 she was gone from kidney failure. Juvenile diabetes was not her fault, her pancreas just did not make insulin. My other friend became type II. This can be regulated better with weight loss and diet but it too can kill. This friend had never really taken care of his health. He too lost a leg. He too died of kidney failure at 70. Dying of kidney failure means the poisons build up in your system, they go to ur brain and you become confused and delirium sets in.
So, if ur brothers are very aware of the consequences of eating the way they do, I would not worry about it. Their lives and there choice to go out the way they want.
disorientation.
dry mouth.
drowsiness.
dilated pupils.
dizziness.
sweating.
sore throat.
Dizziness. Yay. 😑
I just pray to God once I'm off the poison prednisone that something improves here.
Meanwhile DD called to say we forgot to ask about a Scopolamine patch to try for vertigo. Chuck said I should download a large photo of a guinea pig and put my name on it and send it to her. The patch helped my mother who had true BPPV but it exacerbated her dementia to the point she was hallucinating mice running on the floor in rehab 🙄. And severe dry mouth to the point she was sucking on Xylimelts I still have in my medicine drawer. Oh goodie. Only thing left to try now is snake oil and magic elixir from the head shop down the street.
We have family visiting, but I wanted to come here and check on you.
I’m praying for this dizziness to pass, already!
Are you down to 3 more weeks of tapering yet? I should have made a note.
I am amazed how you still answer questions here, and give knowledgeable and compassionate responses. Still helping others, even while you feel so yucky! You are a gift to this forum.
May God grant you restful sleep tonight.
You’re right. I had to make peace with this is how my brothers choose to live. I can’t stress myself out policing their choices.
I am the opposite. I hardly ever indulge because I don’t want to have heart disease or diabetes.
My mom didn’t ever smoke or drink. My dad smoked when he was in WW11. A lot of soldiers smoked. He quit when my oldest brother was a baby.
My grandfather and uncles smoked. I remember when everyone smoked on television, drank cocktails galore. People smoked cigarettes in doctor’s offices and hospitals, the grocery stores, banks, all over. Pregnant women smoked too.
Nowadays, there is no smoking here. No smoking in bars or even at Harrah’s casino here. New Orleans banned it. The next parish over, Jefferson parish allows smoking in bars. I don’t think any restaurants allow it anymore.
The worst though, was when smoking was allowed on airplanes. Remember that? I felt bad for the flight attendants then.
I don't blame you for wishing your brothers would keep their diabetes in check, but you're wasting your worry. They'll live as they wish, is the truth 😣 When I see my stepson and DIL smoking, I have to bite my lip. I know how I regret the smoking and other unhealthy choices I've made in life. We're invincible when young. Then when we're a lot older, those habits are so hard to break. I thank God I broke most of mine.
And thanks to everyone who prayed for my brother. I guess that I am the healthiest in my family.
I am constantly amazed by my brothers eating habits. You would think that they would eat better with their history of diabetes and heart disease. I am proud of them for stopping smoking but they have a long way to go in following a healthy diet!
Lea, I swear, I look at the way that they eat and wonder how I am in the same gene pool! LOL 😆 My brother snuck out of his hospital room after his recent surgery and went downstairs to cafe and bought ice cream and candy bars! Then he stopped at the coffee shop and bought regular coffee because he didn’t want the decaf that his nurse gave him.
Need - glad your bro is finally out of hospital. Hope the rest of his health issues get treated well. Corneal transplant are usually successful, I believe.
Gershun - sorry you lost a bro to shingles. I had a g/f who got shingles and it stated to go to her brain. They flew her to Edmonton and she was treated successfully. It was touch and go for a while
I had a shingles vaccine - was not going to miss it after what I saw with my friend and another friend at the college who had it and recovered but was still in pain months later.
“‘But I will restore you to health and heal your wounds,’ declares the LORD …” Jeremiah 30:17
Lea, so sorry the dizziness has not abated. I am still praying for you every night.
Speaking of brothers. My other brother was able to leave the hospital after his surgeries. The next thing they will address is his heart. He has a history of heart issues.
All of my brothers have heart issues, past heart attacks and surgeries.
I hope the woman in your group has a successful outcome this time.
I wish everyone would consider being a donor.
My brother that lives in D. C. is scheduled to have a cornea transplant soon. He’s blind in his right eye due to complications from Shingles.
One gal in our group was on her 3 rd liver transplant as the others had rejected for various reasons. This 3rd one is good at the 1 year mark but a transplanted organ can reject at ANY time, despite all the methods in place to prevent that from happening.
I remember that Chuck had serious issues and had to have a transplant. I didn’t think the donor’s family had to reveal who they were. It’s fantastic that they responded to Chuck.
I was wondering though how the connections are usually made. Does the recipient send a letter to Mayo Clinic and then they forward the letter to the donor’s family?
My friend’s great grandson, a teenager now, has had heart issues since his birth. He has had two heart transplants. His body is rejecting the second transplant. They are doing everything they can to save his life. It’s very sad.
There is a Facebook page telling his story. He lives just north of New Orleans. It’s so sad when children are born with a bad heart.
Father God, we pray for mercy for Lea and release from these bonds that hold her down. Lift her up, oh Lord, so that she doesn't stumble. May your angels that surround her keep her safe from harm. Show her Your love, In Jesus name.
You know how we can be about things which sparkle and shine. We imagine they will put back something of what has been lost.
Catherynne M. Valente
Wonderful news about Chuck's donor's family. That's so meaningful. A little joy and something uplifting in your troubles.
How great to hear from Mayo about the donor family.
That’s exciting to hear a response from the donor. How does that work? I am assuming that if they would choose to remain anonymous that they can. Or do people know the source?
It is an interesting process, isn’t It? Donor transfer to another person. Overall, medical practice is fascinating! We have come so far.
If only our ancestors could come back to see just how far we have come. They would be amazed. Years ago people died.
I think about how far medical practices will take us.
Like most teenagers I read tons of books. I read about test tube babies. Never in my life would I have ever dreamed that I would have grown up and had three in vitro fertilizations myself, yet I did. None were successful for me but they certainly have been successful for others.
Mayo contacted Chuck...his liver donor family answered his thank you letter he sent them last summer! We are thrilled to have gotten an unexpected response and are awaiting it's arrival in the mail w/i the next week or so.
Were you able to do any of that muscle building today? 💪
Praying for blessings for you and Chuck today and always. 🙏🙏🙏.