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.
Again, I wish Chuck would understand how you feel. It’s puzzling because he has been very sick in his life. You have always been by Chuck’s side, supporting him every step of the way.
Maybe men really are wired differently and don’t feel the same way that women do.
Chuck loves you. You love him. Still, it’s difficult when we don’t feel heard or understood.
For some reason, some people have a difficult time understanding what they have done wrong and also acknowledging their offenses and apologizing for it.
I understand that you wish to take something to help. You’ve been helped by Paxil before, hopefully it will help you again.
No, this has nothing to DO with a "birthday cake" but me saying this may be my last birthday. Which is the truth.
Golden, yes......the road to hell is paved with good intentions indeed. Chuck still doesn't see or care that what he did was wrong.
Nhwm/Way.....the dumb ass asked me what I wanted for my bday. I said a Cold Stone cake cuz this may be my last bday, why not? It's not about me ordering 2 etc.
Alva, thank you 😍
Cx, I know right??
Hope.....the doc and sw actually asked me if I felt dizzy while my head wasn't moving? As if to suggest BE GRATEFUL FOR SMALL FAVORS ITS NOT LITERALLY 24/7. I'm dizzy when I speak bc my jaw is moving! But hey, not when I SLEEP! PHEW. I'd say 4+ months of non stop dizziness is quite long enough now.
Send, her name is Erica and I'll join you in the slap 😁. My 66th bday is July 3rd.
I dont think Chuck and daughter are objecting to a cold stone creamery cake it's the it may be my last birthday comment associated with said cake they are objecting too. 🍰🎂🍨🍧🍦
Now what I would object to was something that looked like a cake but wasn't really a cake. Have you seen those meat cakes people have that look like cake but are made with ground beef and mashed potatoes? That would be fighting words if anyone gave me that for my birthday. 🍔😱😠
I am so sorry you are going through this added stress. You are absolutely entitled to every ounce of your feelings, and then some.
What comes to mind is that the road to h*ll is paved with good intentions. I think Chuck and your dd have good intentions. I don't mean to say that I think they are going to hell. Not at all. But though their intentions are good their behavior isn't. The last thing you need is to be made to feel alone.
As for Dr. C and the sw -words fail me. Have they not an educated, intelligent, sensitive, tactful bone in their bodies?
Prayers for benefit from the IVIG and more compassion and understanding from Chuck and dd.
We all care deeply and we know that you deserve to have your feelings understood, respected and validated.
Order two cakes if you want! Eat one for your birthday and freeze the other one to eat whenever you feel like it!
Have as many birthday cakes as you want. You deserve it !! (((Hugs))) 🎂🎂
NOT at stage 4, with awful complications??
And, when EXACTLY can one order a DANG BIG, YUMMY EXPENSIVE BIRTHDAY CAKE?
NOT in the above situation? 😡 😡 😡
I will be next in line to give those slaps. 😠 😠 😠
Thinking bad words, here. 🤬🤬🤬
Your journey as written here should be a memoir and published.
I have NEVER witnessed anyone so wise and intuitive as you are at a time like this. Nor so honest.
Chuck's deep into de-Nile now. As need says, you know him best. She's right. You always have. That doesn't make it easier because right now you absolutely NEED someone you can pour your honesty out to.
Sick or well, you are one of the most remarkable women I know. I know you know I love you. I just need everyone to know it today.
Enjoy your cake, Lea!
I like Chantilly cake from Whole Foods on my birthday. I love the whipped cream icing and fresh fruit. It’s a light and refreshing cake. Very pretty too!
I’m not very good at cake decorating. I have a friend who does catering and she makes the most beautiful cakes.
Of course, you can never go wrong with a decadent chocolate cake either.
An ice cream cake is perfect in the summer months! Enjoy every bite!
From my heart, I hope your dizziness is very temporary and just working its way out of your body and that you will be beyond this very soon - and fully enjoying your life again.
- sending hugs
"Then the social worker tried to pooh pooh me away by saying that Everybody Suffers Health Issues In Life, It's Part Of Life Don't You Know?"
Because I want to just slap her!
Don't you just hate it when "they" are dismissive, even to the point of waving their hand in the air "as if" to wave you away?
I hate that too, and sorry your team did that to you.
That would upset anyone, healing from ca or not.
You can replace them, or fire them later maybe.
Put Chuck in the doghouse for today.
Chuck and DD need to address their own depression, over almost losing you!
What a great birthday plan!
You have us, your aging care prayers team.
And some personal friends to support you through this difficult time.
And I will be praying more today, and everyday.
Thank you for your telling us.
You are loved.
You are prayed for.
You are cared about.
Some time, about 2 weeks ago, I got out of bed and started taking care of important business-because I was so mad-about paying too much and being billed wrong. Just wanted to let you know that I have used anger to get things done, as advised by my doctor over 20 years ago.
When is your birthday? Will you be having chocolate and caramel on your
Cold Stone birthday cake?
Perhaps it's time to have a heart to heart with him, and really be very honest and upfront with him about everything you're feeling and going through, as most men need things spelled out very clearly when it comes to us women.
Well on the upside I'm glad to hear that your IVIG went well and without incident. That's a positive for sure!
I'm hoping and praying that as you continue to wean off the prednisone that your symptoms will get better and better and that soon you will feel more like your old self.
We're all still rooting and praying for you. Hang in there. Better days are yet to come.
I am so sorry. I’m hoping that Chuck will be able to understand how you feel in time.
You know your husband best and what he is or isn’t capable of.
When my MIL was going her cancer treatments, she told my FIL how she was feeling. He said to us, “Mom feels empty. What does that mean?” He had absolutely no clue as to how she felt. She took meds to help her cope also. I don’t blame you for starting on Paxil soon.
Sending a bazillion hugs your way and will continue to pray.
I see. Circumstances were different then. I suppose your parents didn’t know what to do. There were awful stigmas attached to situations.
My neighbor told me that her dad adopted her brother when her mom married him.
Neither of his parents told her brother that he had been adopted. My neighbor felt awkward about being the person to tell her brother. Eventually, he found out and he was so angry that no one told him, he didn’t speak to them again. It’s terribly sad that their relationship was destroyed because he wasn’t told.
I am glad that things have progressed and attitudes are changing. All children have a right to know who their family history. It’s important.
Then the social worker tried to pooh pooh me away by saying that Everybody Suffers Health Issues In Life, Its Part Of Life Don't You Know? To which I said Oh Really? Everyone suffers stage 4 metastatic melanoma with 4+ months of an audiovestibular toxicity reaction to the immunotherapy to know how I feel in particular? She waved her hand in the air, dismissing me entirely, trying to sweep the whole fiasco under the rug.
My DD and dh and this palliative care team exacerbated my situation triplefold. Dh is not sorry, has no clue what I'm going thru, only that he thinks I'll "live 10-20 years in remission" and even if it's with this dizziness present, that's fine for him. I feel more alone than ever. From now on I'm Fine and won't speak to him about anything. He blindsided me once, that's it. I'll be starting on Paxil in a few days, after we see that the Scopolamine patch doesn't work. I'll be a good little guinea pig.
Freddynb, thank you very much for your kind words.
It's a good opportunity to pray for you and put my small annoyances into perspective. Again I thank you for the gift of your journaling your experience. Looking forward to celebrating in the daylight with you outside the end of the tunnel! (((hugs)))
I hope you are sleeping well out there in the middle of the night. Sun is about to rise here in Florida. 🌞
I wonder why your mom didn’t tell you sooner. Things are handled differently now. We told our daughter from a very young age.
DNA is fascinating! We have done DNA testing with 23andme.
Golden,
You’re right. Adoptees don’t know what they will find once they search. Sometimes it is a heartwarming experience and other times it is painful. Either way, it can be an extremely emotional experience.
People feel differently about their circumstances. It’s important to have our medical history. It’s frustrating not to have crucial information. They may or may not be interested in forming a relationship.
With our daughter, she said that she would like to know about family traits and normal stuff that people are curious about.
Our daughter has always been very artistic. She draws beautifully. The agency did tell us that her birth mother had a strong interest in art too.
I came across people who had the same view as my friend from time to time and I always found it perplexing. It’s such an old fashioned way of thinking. Change is slow.
I appreciate that you have spoken out about how you feel. Our daughter has too.
You’re probably right, my friend could be ‘pretending as if,’ and perhaps even in denial of what she is doing.
We have been friends since high school. We have a lot of fun together but we don’t see eye to eye on everything. I felt an obligation to make her aware of everyone’s feelings.
She has never tried to force her opinion on my daughter and I am grateful for that. My daughter would not share her point of view.
When I did outreach work, it was important to me to present all sides. I spoke as an adoptive mother, and I always invited an adoptee, and birth mother to speak at events.
I hope that you start to feel better soon. You have spent so many hours with doctors and specialists. My word, you will be so glad when all of this eases up some. I am still praying daily for you and I promise that I will continue to do so. We are all anxiously waiting to hear you say that you are feeling better.
Yes, I had my Moms side of the family to relate too but they lived in another County. My Dads family welcomed me with open arms. But it really changes your life, especially at 24, when you realize that the Aunts and Uncles you see daily are not really any relation. That their children are not really cousins. That your missing half of ur family tree. Funny thing is, I had a feeling growing up that I was the odd one out.
We’ll be waiting for your update.
Glad you’re not at your worst today, so you can at least make the appt.
Your friend is just perpetuating the "pretend as if" scenario for adoptees and further stripping us of our rights AND our natural feelings, which is typical. Your friend has a rather brainwashed attitude that my adoptive mother tried to instill in me with FOG (unsucessfully). You are one of the few adoptive parents who have the right and healthy attitude which is not one of competition or secrecy. Bravo to you! 😍
I know of few adoptees looking for new mommies or daddies...just looking to become REAL. To connect w another human, figure out where we came from, and thats pretty much it.
Cx, I haven't been able to walk w a walker to any of my appointments for the past 4+ months. Chuck pushes me in a wheelchair bc I'm just TOO unsteady on my feet and it's too dangerous. I only use a walker here in the house or at my son's house. "Dizziness" doesn't quite cover what this toxic reaction has done to me.
Thanks for all the good luck wishes for my IVIG today. I'll check in later. I'm not off the chain today in terms of feeling horrible so I'll take it 😁
“To you, O LORD, I lift up my soul. O my God, in you I trust; " Psalm 25:1
Geaton - agreed adoptees have the right. Your father was a totally different situation and n/c was the way to go IMO. What I have known of adoptees wanting a closer relationship generally didn't go that well either. I think some just want to know but quickly earn getting closer doesn't work. As you say, for others it does.