Update on Rickie

cher76

It has been a week and a half since Rickie's stretch and that seems to be going well. His has been able to eat fairly well again, however the weight gain is up and down. He should have gone in for chemo this past week, but it was canceled due to the fact that the tumor has grown. No sense going through all that when it seems to have stopped working anyway. We drove to Houston today and have appointments at MDAnderson the next three mornings for tests and will meet with the doctor on Thursday. This past week has been rough. Without the chemo he had actually been physically feeling pretty good. But he insisted on working all day Wednesday lifting and moving some furniture at our store, and payed for it on Thursday. His back pain was really bad and he started taking the dilaudid for breakthrough pain. Don't know if it was the drugs or just the reality of the situation, but when the pain increase the depression seems to crawl back in. It is so disheartening. Here we felt like we were keeping It at bay, we were even planning a small vacation to somewhere, and instead we end up back here waiting to hear what is next. How unreal is this, his appointments are on exactly the same dates as one year ago when we came up here for staging tests. I just don't know if we can handle bad news again. It's just so hard to stay positive, and I try so hard not to let it get me down and to stay focused on getting the best treatment possible. I keep thinking if I can stay "up" he will follow. It bothers me that none of his doctors have ever really addressed the depression problem. Always before seeing the doctors the nurses ask questions, some of which are, "are you depressed?" " do you have feelings of anxiety?" and he has answered yes to those, but then the doctor comes in and never brings it up. My kids are upset with me for not bringing it up with the doctor, but I feel like Rickie does not want me to, I feel like I would be betraying him. I feel like we need some kind of grief counseling, but just don't know how to get him to go. It seems to me that when we need each other the most and our family the most he is pushing away from us all. It reminds me of when our kids were getting ready to go off to college and how horrible that last summer at home seemed to be with each one. Always arguing with us, testing the limits, etc. And several friends assured me that it was God's way of making it easier for us to let go of them. But I knew they would always come back. And although I have told Rickie I will stand by any decision he makes I guess in my heart of hearts I am just not ready to let him go, as I know the reality of it is, he will not be coming back. not in this life anyway.
Please keep us in your prayers this week as I keep you all,
XOXO
Cheryl
Wife of Rickie, dx stage IV EC, Oct. 2010, with mets to bones

jojoshort

Hi Cheryl
I feel your pain at what you are going through. Steve never wanted to talk directly about his cancer too much. He didn't want depression meds, although I saw a definite change in him. His way to deal with it all was to basically try to put it out of his mind, but working on his own paintings or watching comedies on TV.
I would suggest that you being some kind of counseling now so that you will have your own support. It really helped me as Steve was going through everything. He felt better, too, knowing that he didn't have to try to support me as well as deal with his own issues. It gave him a measure of peace to know that I was taking steps to take care of myself, and he could feel free to not worry about me, too.

Please let us know how it goes this week, thinking of you and Rickie,
Jo-Ann

jss2011

jojoshort said:

Hi Cheryl
I feel your pain at what you are going through. Steve never wanted to talk directly about his cancer too much. He didn't want depression meds, although I saw a definite change in him. His way to deal with it all was to basically try to put it out of his mind, but working on his own paintings or watching comedies on TV.
I would suggest that you being some kind of counseling now so that you will have your own support. It really helped me as Steve was going through everything. He felt better, too, knowing that he didn't have to try to support me as well as deal with his own issues. It gave him a measure of peace to know that I was taking steps to take care of myself, and he could feel free to not worry about me, too.

Please let us know how it goes this week, thinking of you and Rickie,
Jo-Ann

Cheryl
I think you both need a mini vacation, give you both something else to think about other than the cancer.
As for depression, next time they ask and Rickie says yes, that is the perfect time to ask about meds. Doesn't mean he will take them, but at least they will be on hand.
Hopefully he will learn not to over do it and can manage to get the pain back under control.

Hugs,
Julie

LilChemoSmoker

Jo-Ann is right...
I agree with Jo-Ann wholeheartedly. Rickie has much to worry about and his depression is most likely linked to the changes. Every change brings on a different set of rules and challenges. When I was a kid I loved going to the carnival and riding all the rides. Today, I would much prefer to stay grounded! Sometimes we get lifted and dropped whether we like it or not. You don't HAVE to figure out how to 'get him to go' to anything. Worry about getting yourself the support you need, and from there you can only hope that the results will give him the desire to achieve the same for himself. We are not two halves that come together to make a whole, rather we are two wholes that come together to make a pair. You can only control yourself.

Let him process as he needs to and meet him in the gap! Also, you said that he answers yes to the nurses about depression but then doesn't follow it up with the doctor. If you were to chime in with the Dr. and say something to the doctor I don't see how that would be betraying him if he is already volunteering the information. Ask him if he would want you to remain silent.

Hugs and squeezes to you! I will be praying for the two of you to meet with balance and understanding!
-Michelle

chemosmoker

MEDS and depression and year to date blues....
Cheryl,
I am really glad to hear that Rickie can eat again and his stretch worked for now.

I don't like the SSRI's like most anti-depression meds, but I am no doctor and I believe that they do seem to help allot of people. So do what works.

As for you saying "Always before seeing the doctors the nurses ask questions, some of which are, "are you depressed?" " do you have feelings of anxiety?" and he has answered yes to those, but then the doctor comes in and never brings it up.", we got the VERY same set of questions every single visit, and no matter what I said, they never seem to connect those papers with anything that the doctors read/use/care about. I think I would want Michelle to at least let the doctors know what's up if they aren't asking and I seem really depressed, but asking Rickie first is a good idea. The possibility of some initial anger over supposed betrayal for wanting to ask for him should be overshadowed by the obvious fact that you are doing this from a place of love and caring, and you asked him first anyway. I KNOW he WILL see that in the end. That's MY opinion. Nothing more. I may get slammed and I may be WAY off base saying that. Dunno...

I always loved the one question on that form about "Is anyone threatening you physically or do you feel unsafe, or has anyone abused you in the last week?" I ALWAYS wanted to put YES on those and see if anyone even noticed it!! I doubt it, any more than the serious ones you are addressing here. Sad. They need a meaningful system of communication or we just shouldn't bother with filling that crap out, if it is just paperwork to cover their **** for the sake of liability, which is what I figured it is, so they have it in our file and can say "See, we asked". Humph!!!

Hospice offers excellent grief counseling and can also do it at HOME if you are eligible for Hospice, or when you are. If you are going to continue treatment then you have to wait for hospice, but if this is a stopping point for all but palliative care then I would recommend calling hospice and having these things addressed one at a time, as they will walk you thought it all and really help, really make that difference I hear you crying out for in your voice/writing.

I do the same thing Rickie does. I do TOO much, lift too much, try too hard, because I am a MAN dammit! I am supposed to be able to do MANLY things, lift furniture, work, help, heave-ho and so on. When I cannot, THAT is a major cause of depression. I think the breakthrough meds are a coincidence as far as seeming to bring on the depression! He tried to do too much, and feels like me, like less than a man, less than we were before this **** of a disease took away our livelihoods. I want to protect Michelle and work and provide and build her a house, and now I can't and instead, some days SHE has to fix my coffee or lift my legs for me, or whatever. Doesn't leave a man feeling all too manly, and I was never Mr. Macho either, I have and embrace my feminine side just fine. But it STILL gets to me and depresses me. I would look at it from that angle. The pain meds just help the pain we cause ourselves trying to DO. We always OVERDO.

Please, don't lose sight of the fact that you have had a YEAR more together, and now work for another one together Make it worth every second, make every moment count, even the sucky one's spent at MD Anderson in a waiting room. Just remember that this is NOW, this is what you have with each other, and don't let any of it slip away without grasping it and holding him and smelling him and feeling him in your arms every chance you get. THAT matters.

Thinking of you both, and sending hugs, love and strength to get through the tests and on to whatever awaits you two next, together. You are a great caregiver. Give yourself some credit and breathe. I have to be reminded by Michelle almost daily to JUST BREATHE!

God bless you.
-Eric

ritawaite13

Hi Cheryl
I am so sorry to hear about Rickie's depression. Depression is such a debilitating disease. I agree whole heartedly with the others though that if you talked to his doctors it would definately not be a betrayal. Your sole purpose righ now is to try to keep him as comfortable as posible and being depressed is not comfortable for either of you. My husband takes liquid Fluxotine (prozac) for depression and it really does help. My doctor gave me Zoloft for the same problem. Being a caregiver is just as depressing as being a patient and I felt I needed some help too. Heck, if we can take a pill and feel better I think we should just take the darn pill! If it doesn't work, what have we lost, right? I'm happy to read that his eating has improved though. Nutrition and sleep are so vital right now. Take care and comfort in knowing how many people are praying for you both.
Rita

TerryV

Prayers to you and Rickie
Cheryl,

Great news about Rickie's eating! Small blessings are always welcome.

My heart breaks because of the physical pain that Rickie is in and for the emotional pain that his pain causes you.

I hope the doctors are able to find that magic point where the pain is handled and Rickie is able to be in good spirits again. I know that will lift your spirits as well. We are so tied into the physical and emotional wellbeing of our loved ones!

Hugs, love and prayers to you both as you start your week!

Terry

Daisylin

ritawaite13 said:

Hi Cheryl
I am so sorry to hear about Rickie's depression. Depression is such a debilitating disease. I agree whole heartedly with the others though that if you talked to his doctors it would definately not be a betrayal. Your sole purpose righ now is to try to keep him as comfortable as posible and being depressed is not comfortable for either of you. My husband takes liquid Fluxotine (prozac) for depression and it really does help. My doctor gave me Zoloft for the same problem. Being a caregiver is just as depressing as being a patient and I felt I needed some help too. Heck, if we can take a pill and feel better I think we should just take the darn pill! If it doesn't work, what have we lost, right? I'm happy to read that his eating has improved though. Nutrition and sleep are so vital right now. Take care and comfort in knowing how many people are praying for you both.
Rita

Cheryl,
So sorry to hear that things are not going so great right now. Lee and I have talked about depression, and at first he did not want to mention it to the doctor either. He almost was viewing it as a 'dirty' kind of thing, and rationalizing it with "well, I have terminal cancer, of course I'm depressed" But, anyways, we finally agreed to ask about it, and this was when the doctors decided to do the blood work for hormone levels.

I don't know if you read my earlier post, but they have been finding that people with opioid usage and also chemo tend to have reduced hormone levels, which causes many many symptoms, some of which are depression and general sense of not being 'well'. Anyways, not to get into Lee's stuff right now, but they are now giving him a hormone gel, as well as they said we should ask our oc for wellbutrin (sp?) or some other anti depressant. The doctor said that this type of testing is very new, in fact Lee was the first person our clinic has ever sent for these tests. I know that typically the states are farther ahead than Canada, but no one here on the boards seemed to have heard of it either. (just a thought, if he does not want to ask about depression, maybe hormones would help a bit)

Lee is not willing to do counselling either, but neither am I. Perhaps we should, but for some reason, to me, (and this is only me) I just don't see the value of telling all my problems to someone who is getting paid to listen to me. I'm sure there is merit in it for many, but just not my style. I have been leaning on my friends and family, and of course all the wonderful people here. Even if Rickie is not wanting counselling, there is nothing stopping you from going, if you feel it will help. As Rita said, being a caregiver is just as depressing as having terminal illness. It may give you some coping skills and an outlet to get it all out.

I hope that RIckie can find something to snap him out of this funk he's in, and return to being the guy you are used to. I can totally understand why he'd be depressed, there's not much to bank on if chemo is not working any more. It's so sad and frustrating to know that we only have one weapon, and it's very flawed.

Thinking of you always, take care of yourself,
Chantal

jojoshort

Daisylin said:

Cheryl,
So sorry to hear that things are not going so great right now. Lee and I have talked about depression, and at first he did not want to mention it to the doctor either. He almost was viewing it as a 'dirty' kind of thing, and rationalizing it with "well, I have terminal cancer, of course I'm depressed" But, anyways, we finally agreed to ask about it, and this was when the doctors decided to do the blood work for hormone levels.

I don't know if you read my earlier post, but they have been finding that people with opioid usage and also chemo tend to have reduced hormone levels, which causes many many symptoms, some of which are depression and general sense of not being 'well'. Anyways, not to get into Lee's stuff right now, but they are now giving him a hormone gel, as well as they said we should ask our oc for wellbutrin (sp?) or some other anti depressant. The doctor said that this type of testing is very new, in fact Lee was the first person our clinic has ever sent for these tests. I know that typically the states are farther ahead than Canada, but no one here on the boards seemed to have heard of it either. (just a thought, if he does not want to ask about depression, maybe hormones would help a bit)

Lee is not willing to do counselling either, but neither am I. Perhaps we should, but for some reason, to me, (and this is only me) I just don't see the value of telling all my problems to someone who is getting paid to listen to me. I'm sure there is merit in it for many, but just not my style. I have been leaning on my friends and family, and of course all the wonderful people here. Even if Rickie is not wanting counselling, there is nothing stopping you from going, if you feel it will help. As Rita said, being a caregiver is just as depressing as having terminal illness. It may give you some coping skills and an outlet to get it all out.

I hope that RIckie can find something to snap him out of this funk he's in, and return to being the guy you are used to. I can totally understand why he'd be depressed, there's not much to bank on if chemo is not working any more. It's so sad and frustrating to know that we only have one weapon, and it's very flawed.

Thinking of you always, take care of yourself,
Chantal

And a bit more on the counseling
I did find that having my own therapist helped me to cope with the changes that Steve was going through. Luckily for me, my therapist lives in my hometown; our boys were in the same Boy Scout Troop. She recently came to my son's Planetarium presentation. And she was the caregiver for her husband until she lost him 10 years ago to melanoma. So she totally gets the journey.
My friends and coworkers have been fantastic, offering help and support and outings. But there is nothing like talking to someone who has been on this journey, who can offer real life experience and coping skills, who can tell you what to expect and how to deal with the changes. With her, I can let the mask drop for a bit.
I did find all the people associated with Hospice had been on this journey, too. They could offer real world experience that my friend and family who hadn't gone this route couldn't. It's like having a mentor.
By all means, lean on your family and friends for support. They will be there through thick and thin. But should you find yourself struggling with all the changes, don't hesitate to reach out to someone who has been there, who can help you through it all.
Peace to you all,
Jo-Ann

JimboC

I don't even know why they
I don't even know why they ask those questions. I think all of us have periods of anxiety and depression because we have cancer. I tried talking to some friends at first but saw what it was doing to them so I sought out professional counseling and it was a big help. Mine was offered through employee assistance at my workplace.