
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.
He called me Joanne to hurt me, knowing that was the worst thing he could do. He doesn't like feeling helpless or useless or that I myself feel hopeless these days. Remember......victims have to lift OTHERS up while hiding their own suffering.
Sorry Chuck dug below the belt.
Too bad he can't just accept where you are right now with these side effects. I guess he wants you to pretend you are OK so he doesn't have to try and fix things. It's hard to celebrate the cancer being gone when you are still suffering.
It still doesnt excuse the things he said to you. He doesnt get to purposefully hurt you because he's scared or upset.
I hope this dreadful experience eventually strengthens your devotion to each other which I believe and hope is still very much alive even if at times it seems hidden under clouds of desperation. Stay strong. Hoping for better reports.
Has he said what his problem is? Why he's acting out like this?
Sounds like he may need some therapy to deal with his feelings and fears so he stops lashing out at you. It's not your fault the treatments caused this.
If he wants a wife that pretends everything is OK even though it isn't then maybe he should consider moving to the town of Stepford. I hear the wives there are programmed to be happy 24/7.
There's no question in my mind that Chuck loves you very much. He has been standing by you and taking care of you throughout your cancer ordeal. That is very difficult for both you and him. The fact that Chuck apologized means he knows he was wrong. Please forgive him and let go of the hurt.
Each of us have our limit for tolerance and patience. Seems like Chuck has reached his. We here at AC forum can vent and get our stress and frustration off our chests, so we can keep coping. Does Chuck have an outlet where he can do that? A local support group or a counselor that he can talk to regularly?
On a different topic, I just finished listening to a short audio book about David Bennett who had a near death experience and then healed from a late stage cancer which got to his spine. What struck me was that his doctors gave up on him and told him only had a few weeks left. However, during his near death experience, he saw a review of his life AND a glimpse of his FUTURE life. He knew he would heal from cancer, so instead of listening to the doctors who said he got no chance, he fired them. He then found other doctors who believed his cancer was treatable and brought them on board. This reminded me of your doctor C. Does he still think you have no chance of healing? Or has he changed his mind? I think all your doctors should view your cancer as treatable or they should get off your health care team.
Wishing you a better day today. Love.
I have forgiven Chuck. We all have our bad moments. I just don't appreciate using hateful tactics to hit me below the belt while I'm already at a very low point in my life. No, he doesn't have a counselor nor does he take meds. That's up to HIM to do on his OWN bc I won't stage some intervention on his behalf. Maybe I'll suggest DD do it now that she's run out of cures for me. Her next project du jour.
Sp, Chuck needs to feel heroic, like everything he does makes a big difference to others. He feels useless and helpless here, he's said, which is the worst thing he can feel. Thus leading to these meltdowns. He's also petrified of losing me and life w/o me. Which explains but doesn't excuse his stupid behavior. He has a bad temper which triggers at nothing, it seems. I can say 1 word off in his mind and WHAM, he's having a fit. Sure he can use counseling but HE has to seek it out and want it himself. I have enough going on as it is.
The better news in all this stupidity is I'm feeling less "startle reflex" and crippling anxiety in general with the Paxil I started on Fri. Yes, already. The palliative care team insisted it would take 2 weeks, I told them I have an IMMEDIATE reaction to drugs, so there you have it. I would have agreed to Paxil anyway, w/o an "intervention", bc suffering anxiety in addition to all the rest of this crap is no joke. I notice I hold my body at a totally tensed stance like 24/7, too. Tightened up and stiff. Who does That? Ugh. I have a long way to go to relax. Wednesday I go up 10mg on Paxil to 20.
Thanks for all the support, I appreciate it Ladies 😍
My prayers continue. Hope today is a good day for you both.
I also have a hubby that is more emotionally fragile than I am. When WE are struggling, it becomes extra challenging to deal with 🤨
Thanks for allowing us to come alongside you. It’s a privilege. 🙂
Part of the problem with anxiety and depression is the ability to see the forest thru the trees. The anxiety prevents it. I KNEW I was struggling, just didn't realize the extent......same as what happened in 2000 when I needed Paxil last time. By the time I got on it, I was a wreck beyond belief. This time, not so bad but still bad enough. 🙄
So in hindsight, it was good that Chuck and DD got the ball rolling FOR me with the meds. It's just the way they went about it I disagree with. I would've asked for a prescription, I'm just not sure how long it would've taken me, especially believing it wouldn't help me this time, in my current situation.
I've been suffering with anxiety too lately for a number of reasons but hesitate to go on another anti depressant simply cause I've weaned myself off of so many that I just don't want to go down that road again.
But if it's helping you I'm so glad. You deserve to relax. If your body was feeling as tense as you say it must feel nice to relax those tight muscles and exhale.
You’re wise to know that Chuck has to want therapy for himself in order for it to be helpful.
If a person isn’t willing to be in therapy with the proper frame of mind or they simply aren’t ready to receive help, then it’s a complete waste of time.
Of course, he’s struggling. He wouldn’t have human emotions if he didn’t feel anything.
When my MIL was dealing with her non Hodgkin’s lymphoma, she knew that she needed help for her anxiety. She also knew that her husband needed help and asked him to go with her. She would not have asked her sons to speak to him about speaking with a therapist because he wouldn’t have accepted that well. He would have been embarrassed if his sons approached him.
Men of his generation were quite different. He saw going to a therapist as a sign of weakness. I really didn’t think that he would go, but he did. I was impressed when he said to us, “Well, if a person has a broken arm they take care of it. I’m having trouble dealing with my emotions so it is not any different than treating a broken arm.”
If you feel that Chuck would benefit from therapy, then as his wife you could gently say something to him. Even though his way of telling you about your anxiety was wrong, he had your best interests at heart.
You may feel differently about this and if your mind is made up about not speaking to him about therapy, I understand and I respect your decision whichever it is. You know your husband better than any of us.
Anyway, I am glad that you and Chuck are on the same page now about your anxiety. I give him credit for apologizing. Some men never apologize and act as though they have done nothing wrong. That’s not Chuck. You wouldn’t be married to someone like that.
If so, HAPPY. HAPPIEST BIRTHDAY!!!!
Wishing you a truly Fantastic Birthday - filled with the Very Best Year Ever - filled with Great Health - Full Healing - Tons of Happiness - and Lots of Love!! I hope this year brings you continued strength, peace, and for you to feel renewed in every way and living your very best life!
And, if by chance, if this isn't your birthday...then I wish this for you anyway!! lol! Hoping all of your wishes to come true!!
- sending love!
xo
Nhwm, thank you. Chuck knew he went too far and genuinely felt an apology was in order, as it was. I was prepared to tell him to go stay at his sons house if he didn't......I was planning how to be self sufficient on my own. I will speak to him about counseling and it's up to HIM if he wants it, as you said. He was receptive to it at the Mayo when his kids were acting out and causing chaos and I suggested he speak to their psychologist. He agreed and got some good advice.
My son DIL and grandson came over yesterday with a huge vase of flowers for me, so that was nice. DD is coming by later on her way to Red Rocks amphitheater to say Happy birthday hopefully with a Cold Stone cake! Ha!
All in all, I'm grateful to see 66 which was touch and go there for a while 😎
You’re very welcome. You and Chuck have a special relationship. You’ve been through and survived many difficult challenges. I don’t think either of you take the other for granted.
All of us have struggled during stressful times. Anyone who says otherwise is lying. No one has a perfect marriage where nothing goes awry.
I’m glad that Chuck was helped by the counseling at Mayo Clinic. I’m sure that he will benefit from counseling again if he chooses to go.
Have a wonderful birthday 🎂! Enjoy your cake! Hug and kiss your precious grand baby. It’s absolutely a beautiful day to celebrate.
Sending a bazillion birthday wishes and hugs your way today!
Wishing you many more happy and healthy birthdays in the years to come.
Have a really big bite of that Stone Cold for ussssss!
All that firework noise tonight, and the rockets red glare is to celebrate that you are free from cancer and still alive, and are still with us. 🇺🇸🎆🎇
That's all we got at this time, and will continue our prayers for complete healing.
God Bless you Lealonnie and the U.S.A.!
Plus, I'm feeling better today.....dizziness wise......when being on the 3rd day of the hateful prednisone taper, I should be feeling horrible according to past history. Maybe it's the Paxil, Idk? Or just a bday gift. Also, DD asked Dr C to order an iron test .....in all the 20k tests I've had, they NEVER tested for iron deficiency/anemia for which I have a lot of symptoms. Including spoon shaped fingernails, which is odd imo. I also asked him to run the Valley Fever fungus test (lungs) bc Chuck tests positive for it EVERY TIME since we were in Az and drove thru a hideous wind storm. BOTH of us. I had asked my PCP to run a test for me but she said no last yr bc I wasn't high risk. Now I am, hello? So based on PSs loved one having extreme dizziness coming from a lung fungus, that's my decision. Chuck takes Fluconozole daily, btw.
Nobody, doctor wise, is doing anything to help me or look further into this situation for me, so I'm doing so along w DD. Why not? We've tried every other frecockta idea! Along with IVIGs every month, too. Wouldn't it be crazy if this situation was the result of several smaller issues added together? Like low iron and a positive Valley Fever test? Probably not but process of elimination needs to continue before giving up, imo.