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.
Chuck is understandably burned out. This whole ordeal probably is the hardest thing for him, I bet it's harder than his own transplant journey last year. But you both have gotten stronger, and your marriage is stronger too by enduring the hardship together.
We all pray for you, Lea, but I think many of us forget about Chuck. I will include him and pray for strength and patience for him, and complete healing for you.
Happy dancing, here! 💃🏻💃🏻💃🏻💃🏻
Thank You, Lord! 🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻
PB, yes, I think people tend to forget about the exhausted caregiver while focusing only on the patient. God bless all caregivers everywhere, it's the toughest job out there. And, for us, it's been so incredibly RELENTLESS the past few months esp since the incapacitating dizziness set in, that there's been no reprieve. Thank God
Fawnby, I burrowed into my most comfortable nest last night and hid out there when the stepfamily showed up, conveniently, at dinner time 630ish, w/o dinner of course. They must have forgotten to bring in those grocery bags..snicker. Which drove Chuck out to buy pizzas at Papa Murphy's to burn in the oven for them. "Funny thing" too......SD made plans with my most loved DIL to cook clam chowder for dinner right before her dh decided it was time to leave and come here, so they took off leaving HER high and dry! Like I said, cant make this stuff up. But Chuck got to visit w his DD and 2 grandsons for 3+hrs. and he was happy. I did let SD come into my bedroom for a bit so we got to visit a little. I don't have animosity towards her, just little tolerance for her lack of respect for our time and issues in life.
NHWM, ty. It took me a long time to learn how to put "politeness " aside and speak my truth. I think women especially feel the need to put our feelings and needs aside to accommodate others.....at great personal expense, oftentimes. Then we wind up stuffing our emotions back in unhealthy ways, as I did for years with booze, cigarettes, etc. Once addictive substances are given up, that's when other means to handle things and cope must be found or else we go back. It's no easy road, any of this, but I feel like when we speak out truth with love (and less screeching 😂), we're "heard" more clearly and it's harder to argue. Although Chuck will always play his I'm Just A Big POS Card bc it's what he DOES 😑
It took me longer than it should have to speak my truth too. It’s hard.
Some say that pain is the touchstone of spiritual growth. Maybe so, but it is exhausting to learn lessons through experiencing pain.
I can understand that it is unnerving that Chuck plays his, “I am just a big POS.” card. I bet most wives can attest to one thing or another about their husbands that is annoying.
In all fairness, all of us have our shortcomings. I know that I have mine. Certainly, my husband has his. That’s why our marriage vows includes “better or worse!” As long as we have more good days overall, we are going okay. Perfection is overrated.
I hope that you are proud of yourself for overcoming obstacles that you fell into due to the pain that was in your life. Some people are never able to find their way out of their darkest moments. You found your way out and set a beautiful example for others to follow.
I can’t wait for there to be better days ahead. These past few years have been exhausting for you and Chuck. My biggest wish for you is to heal and be able to thoroughly enjoy your lives again.
What is the latest update about your precious grandson? I love hearing about him.
My grandson was 2 in March, shares the same bday as his dad! He's talking up a storm now and loves going to the little lake beach we have here locally. He's got big front Chiclet teeth and a powerfully heart melting smile when he flashes them....lol. It saddens me I can't babysit him, with being so dizzy, etc. I do get to visit though, and again on Sunday when both my kids will be coming over for Mothers Day. We have cause to celebrate this year, more than ever.
What's on the agenda for Sunday for you NHWM, and everyone?
I agree that if the worse outweighs the better in a marriage, it is time for marriage counseling and if that doesn’t work it’s time to end the marriage!
I bet a man wrote that part of the vows! LOL 😆 Who did write the first wedding vows?
Oh yes, my mom was definitely a perfectionist! It drove me crazy at times. I had to learn how to ignore it.
Your grandson sounds so precious! If I am ever blessed with grandchildren I am going to love them to pieces.
Two years old is an adorable age. Some say terrible twos and others say terrific twos! Hahaha What does he call you and Chuck?
I get such a kick out of hearing what grandchildren call their grandparents. I called mine, “grandma and grandpa” but that seems to have gone by the wayside.
My friend told her daughter that she wanted the children to call her “Goddess.” Needless to say that didn’t fly very well with her daughter! LOL 😆
I asked my friend, “Where did you come up with that name?” She said, “I saw it in a movie and I like it!! She told her daughter that she had “Goddess” embroidered on pillows and everything. Her daughter said, “Mom, I don’t care. “My child is not going to call you Goddess!”
We always go out Saturday evening for Mother’s Day to avoid the crowds on Sunday.
You certainly do have so much to celebrate this year! Have a very happy Mother’s Day!
I’m glad you’ll be able to see your grandson, LL! I bet he is just sooo precious!
Mine and my daughter and her hubby will come over after church on Sunday. She said that she will take care of lunch. 😊
Mine calls me DeeDee, NHWM. I wanted to be called Granny (I just loved it when QE2’s grandchildren called that.), but he just couldn’t say it, and would run in the house, yelling for DeeDeeeeee! So, it stuck, and I now love it! 💙 👵🏻
Your grandson has an independent streak! I love that. That will serve him well in life. He is going to say mama when he chooses to! 😊
cx, I love granny too. I told my girls that I liked granny if they ever have kids. They cracked up! They said that I didn’t look like a granny to them. They called my mom and dad, grandma and grandpa. Deedee is cute.
When my daughter brings her Siberian shepherd over she says, “Tell your grandma hello.” She likes Grandma, not granny.
Barb, I love Nonna!
Should read Siberian Husky, not Siberian Shepherd.
That is funny!
Did she give herself that name or did her grandchildren think of it? Grandy is adorable!
"give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations" Psalm 100:4-5
Your lovely grandson has that sparkle!
I am called Nan or Nana by my grandchildren. My mother was always Bestemor (good mother in Norwegian) to her grandchildren. and Oldemor (old mother) to her great grands. I rather like those names but didn't go the Norwegian route.
Praying daily for your continued healing and for Chuck and all your family. You all have been through some horrendous times which are not quite over. Bless God for His mercy on you and all of us.
Jeremiah 17:14
Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise.
Golden, I'm still basking in the relief of the moment of healing I've been given, not looking for more wants. As much as I'd love to be rid of this dizziness, today is a better day and for that I'm grateful.
DD spent 3 hrs reading our insurance policy yesterday which explains we DO NEED referrals for all out of network care, meaning my doc and nurse at Kaiser are misinformed. Shocking, not. DD arranged a call with the plan advisor in my city for next week who sb able to clear things up AND advise my oncologist about HIS role in placing the required referrals. UC HEALTH wants to manage my IVIG treatments but Kaiser denied the request.....so I hope we can get this crap straightened out FINALLY. It's a shame when insurance is such a mess.
We did speak w the social worker from UC Health yesterday via video call but he wasn't much help. Except to advise us to change insurance companies at enrollment time. Meanwhile, when a friend's dh had cancer and they had a "great insurance company", she literally spent hours each day on the phone and filling out new long forms for EACH doc he saw and EACH test that was ordered. It was a full time job. It's all a racket, imo, so I'd rather work THIS MESS out than start a new mess.
My family and I are going out to dinner this evening to celebrate Mother’s Day.
Thinking of you and hoping that tomorrow will be your very best Mother’s Day with your family.
Tomorrow we are joining our friends who celebrate Mother’s Day with a big crawfish boil.
The high temperature tomorrow is supposed to reach 90 degrees! Will be a hot day, for sure. I will wear summer attire and sip iced tea.
Have a wonderful Mother’s Day!
re more wants I was reminding myself more than anyone else.
Your dd is such a blessing sorting things out for you for you. In my experience, insurance is in it for the bucks they make and certainly not to help the people who pay the premiums!
Have a great Mother's Day tomorrow. You've earned it!
Happy Mother's day to everyone!
LL, a blessing to share your journey!
I've been feeling BETTER the past 2 days and actually took a shower last night where I wasn't half dead afterward! Bonus! Lol 😂🤣 Idk if the IVIG is kicking in or the 3 month mark is approaching, and I don't care, just PLEASE HAVE THIS DIZZINESS LEAVE.
My kids are on their way over so I'll be back later to post.
Have a great day ladies😁
And happiness to all who are 'Mothers', and all who have a Mother!
Thinking today about big pharma and all the negatives we often say and hear about it. But - and that's a big but - big pharma has kicked a&& with your cancer. It really has, and it has supported Chuck's liver transplant. You both are waking wonders!!!
I wonder if there are any shower products with glitter in them. Then you could truly shower and shine!🚿🎇