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I am praying for you. Life throws all sorts of curves at you. Stay positive if you can. Take one day, one moment at a time. I have also been through cancer and all its uncertainties. And like you, my husband has liver disease, among other conditions. I found a great cancer support group. They hugged me when I needed it and cried with me too. The thing was, I found the best side of humanity in getting through my cancer. I am in remission now. Hang in there. I have read your posts and you are an amazing, special person. My thoughts are with you.
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Check Cancer.net for cancer support groups. They can be really helpful.
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LL, thinking of you as I sit in Orlando airport with my Mom waiting for the next delayed flight notification that will surely come. I'm praising the Lord for electronic devices and free wifi ;-) 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)))
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NHWM, I wasn't told because my Dad did not want me to know. It was a very small town, about 5000, when Mom moved there so any one who knew them knew the situation but it never got back to me. I wish I hadn't been told. My brothers and sister were told, and I wish they hadn't been. But, if I hadn't known, I would have had trouble getting my Passport. Knowing I was adopted saved me from paying to have them investigate. Just sent them my adoption papers. They question any birth certificate dated over a year after birth. Mom destroyed my original.
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I'm here. Had the IVIG yesterday w/o incident. My DD decided to come along as "moral support" for Chuck who blindsided me to Dr C by telling him I'm SUICIDAL and need antidepressants and a psychiatrist or psychologist bc I told him "I don't know how much longer I can take this" and also that "I want a Cold Stone birthday cake next week bc this may be my last birthday" and I never allow myself a cake. In case he's unaware, I have stage 4 metastatic melanoma which could come back at ANY TIME and I'm no longer a candidate for immunotherapy. He and DD are more likely in need of a psychologist than I considering I have a more realistic and healthy outlook on this situation than they do. Dr C was pretty speechless as always. Referred us to the palliative care team, equally useless, who thought my Depression may be due to mood swings associated with steroid withdrawal? They weren't sure though. Bc wouldn't a person in my position NEED a bunch of reasons TO be depressed in the first place? Plus, as a doctor and a social worker, shouldn't these 2 know a bit about cancer and treatments BEFORE speaking with a patient? Then the doctor said perhaps next month he'd suggest another med to help my dizziness. When I asked the name of it, and he said Meclizine, I laughed out loud. I guess he didn't hear me when I said I'd been to hospital 2x and seen every specialist in Denver. Meclizine was tried first, back in March. Hello?

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.
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JoAnn,

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.
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Oh, Lea

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.
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Wow Lealonnie! You just can't make this shit up can you? I'm sorry that Chuck threw you under the bus yesterday. I know he loves you and doesn't want to lose you, so in his mind he thinks that he's helping, when in reality he's hurting the one he loves the most. Typical male I guess huh?
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.
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Lealonnie!
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?
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What is the name of the social worker who said this?
"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!
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Lea, I'm so sorry to hear about what you went thru today. It's infuriating about the social worker - she's in the wrong position and shouldn't have that job. She's really the definition of ignorance. When my brother-in-law and my close friend both were undergoing treatment and were given steroids, it caused a lot of mood swings and agitation...and you shouldn't be made to feel uneasy for whatever you're feeling. You have been remarkable thru this process.

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
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I haven’t ever had a Cold Stone birthday cake. I have tried a Baskin Robbins cake.

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!
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Lea,

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.
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Okay, exactly WHEN can one say things about not being sure that they can take a situation any longer?

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. 🤬🤬🤬
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Lea, So sorry about all that . I agree with the others . Just want to add:

Have as many birthday cakes as you want. You deserve it !! (((Hugs))) 🎂🎂
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I second everyone’s sentiments, Lea!

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!
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(((((Lea))))))

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.
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Ironically many antidepressants can increase suicidal thoughts.

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. 🍔😱😠
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I've had good experience with Paxil in the past sp, so we'll see. Not that some Happy Pill will fix this mess, hardly. It's more an effort to pacify those who cannot cope than it is to help ME. In our society, we are taught to plaster a smile on everything 24/7. Anything else creates discomfort for OTHERS. And oh no......we can't have that.

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.
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Lea, I know it’s not specifically about the cake, all I am saying is that I hope you enjoy as much birthday cake as you want to eat.

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.
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Lea, it's just crazy that the doc and sw responded to you as they did - and their setting the bar so low as to suggest to be grateful not to feel dizzy while remaining still. They had zero awareness and sensitivity there. :(
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I am so sorry Lea. From your post I sense that Chuck is likely very scared and is grasping at something to hold onto or find help. I certainly understand your point of view and how exhausting this is for you and an inept SW is no help at all. I hope tomorrow brings a better day and you have the cake of your dreams. I love cake and ice cream. My birthday is at the end of this month. We hopefully will have just returned from Utah after babysitting two grandchildren.

My older daughter was due to arrive here tomorrow afternoon but she is in the unfortunate group of having her flight canceled so she is flying to Savannah and renting a car. Her 9 and 7 year old girls are helpful with their 9 month old baby brother but it's alot. Her husband is coming a few days later due to work.

I continue to be impressed with how able you are to advise others while feeling ill. That is a unique quality. Just hope something better finds its way to you all.
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Just love ya Lea. Some folks are great at being the patient and suck at being a caregiver.
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Nhwm......I don't "wish to take something to help." What I said was, "I've had good experience with Paxil in the past sp, so we'll see. Not that some Happy Pill will fix this mess, hardly. It's more an effort to pacify those who cannot cope than it is to help ME. In our society, we are taught to plaster a smile on everything 24/7. Anything else creates discomfort for OTHERS. And oh no......we can't have that." My family forced me into a corner yesterday, and I've AGREED to take something I don't believe will help me fix this situation at ALL. "I'll be a good little guinea pig."

RD, I hope the fiasco w the airlines doesn't put too big a damper on your kids/grandkids trip. Happy early Birthday to you.

Guestshop, ty. 😁 I know dh loves me and blah blah, but he's right at the top of my chit list at the moment, Grrrrr. He sux at being both a patient AND a CG these days 🙄

Golden, this sw was busy saying "I hear how angry you are, and you have that right..."...(gee thanks sweetie) but then questioning where the anger was coming from? The steroids, could THAT be It? Surely it cant be the disease and the complications from the treatment and the fact your dh and dd just blindsided you in front of all of us? Nah.
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Lea, I see. Thanks for clarifying.

I can understand why you feel as you do. You’re a realist. It’s one of the things that I most admire about you.

I suppose that it’s difficult for your family at times. In their own way they are looking for a way to navigate through the aftermath of your cancer treatments.

You have been through so much. I can’t imagine what you’re going through, both physically and emotionally. So, if I occasionally fumble, misunderstand something or say something incorrectly, please forgive me.

You have been so brave right from the start of learning of your cancer.

Anyone going through something this extreme is going to have their moments of grief and frustration.

You’re entitled to all of your emotions. I hope Chuck will realize this.
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Lea: One would think that Chuck would be more able to understand as he's been through a lot.
Hugs to you.
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(((((Lea)))) I have personally seen three times when a spouse/LO couldn't face reality. It was denial and avoidance. I know there are many more - this was just my personal experience

One was the iInability of an husband to hear his very ill wife talk openly about her symptoms and illness.

I think it is not rare which is unfortunate.

I know that knowing that doesn't make it any easier for you at the time you are going through it. Maybe later.

That SW definitely deserves a smack. It's absolutely horrible denying you the right to be angry about your disease and all the cr*p that followed, blaming the steroids...

And denying you the right to be angry at your dh and dd going behind your back. For me it is the going behind the back which would bother me the most. It feels to me like taking away your personhood - objectifying you.

As for Dr C - incompetence!!!

How dare they!!! You deserve much better than that.
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Lea, so sorry for your ordeal. That social worker sounds like a jerk. I hope your dizziness subsides soon and your life improves. My prayers for you continue. Take care.
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Lea, forget slapping Dr. C. Drop kick her/him. Maybe eat your Cold Stone cake. The whole thing. Then take some x lax and poop all over his desk. Heck, I could think of all sorts of fun ways to get rid of some frustration.

But seriously, I'm sorry that your Chuck doesn't get it. Or maybe he does and he's just being a man. Remember men need to fix things. I guess he thought he was fixing something by suggesting psychiatry. My DH is the same way.

Don't take the Paxil if you don't want to. I wouldn't take anything to placate someone. If you've decided it may help, then yes. But I wouldn't let someone strongarm you into taking another pill with more possible side effects. Mind you, I'm guessing nobody could strongarm you.

I get so frustrated on your behalf Lea. Still praying.........
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LL, maybe it's Chuck who needs the Paxil? I'm not saying this cynically. Is he currently on anything? If he's anything like my hubs, the daily/hourly stress of watching helplessly as your LO suffers with seemingly no solutions or end in sight can take a toll on anyone -- regardless if he's experienced some of it himself. Then the Meclazine suggestion from Dorktor C... I have no words. Thinking of both of you this morning... xoxo
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