Dis Breast Cancer Survivors - GAGWTA!

[Laurajean1014]

On the way to the BS, DH and I got into a disagreement. During it, he said "that's okay - you'll be dead in a year."

I felt that he said this when I was at my most vulnerable. It hurt deeply.

 

[Pea-n-Me]

On the way to the BS, DH and I got into a disagreement. During it, he said "that's okay - you'll be dead in a year."

I felt that he said this when I was at my most vulnerable. It hurt deeply.

I can see that.

Not knowing your DH (but assuming he's normally a great guy) the only thing I can think of is that emotions running high combined with anger and a knowledge deficit about breast cancer caused his momentary lapse in caring and sensitivity.

Let's hope he snaps out of it or we'll have some butt kicking to do.

 

[MerryPoppins]

SD, I can see how you might feel that way. Hopefully you'll have lots of good days to come, though. I would guess that that is prefectly normal.

LJ, I told my husband what yours said. His eyes got kind of big, but his response was this. He thinks your husband is scared to death. He's afraid you are going to die. Sort of like you're going to leave/abandon him. He might even be angry with you for getting sick. I can see that. I'd say you need to talk. Yours is DCIS right? DCIS is not a death sentence. I'm here 4 years later. Maybe ask him to help you learn more. Get something like the Susan Love's Breast Book. Tell him you really want to beat this but you need his support so much right now. Try to express how afraid you feel. Maybe that will open the door for him to talk about his fears. Have him talk to others who've had a wife in your shoes. Is there a spouse cancer support group in your area? My husband would be willing to email or IM with him. Cancer is not a walk in the park. But this is something you can beat. You just need him in your court.

 

[Pea-n-Me]

As long as we are on the subject of normal, did anyone experience feeling like if this is it I hope I die soon? Not that I want to die, just that my odds are so bad that I'm just wanting to get it over with. I'm afraid of what's to come. I don't want to waste away and die in pain. I'm starting to feel lousy and I don't want to feel worse. I don't want to put my family through this and I don't want to put myself through it. I'm not suicidal, I just want it over with one way or the other. Please tell me this is normal!

Tammy, I haven't experienced these feelings personally but over the years I've taken care of many patients who have expressed feelings like this to me, feelings that were too painful for them at times to even discuss with their own family (something I consider a huge priveledge). There have been many nights at 3am that I've sat and cried with people when they were too distraught to sleep - I've even helped them plan their own funerals. So yes, I would say they are normal. I'm glad you can express them and have a safe place here to do so. I'm sure I speak for everyone here when I say we are all pulling and praying for you. Know that we're here to listen anytime and hope you keep us updated when you can. I also just want to ask if your caregivers know you are feeling this way?

 

[Pop Daddy]

I dont read this thread often, I think is a special connection you all share togeather that the rest of us cant really understand. But I wanted to add, Im praying for health for the people here who are battling cancer (I hate to even type that word)

 

[Pea-n-Me]

Thanks, Pop Daddy. We appreciate your concern and are glad you stopped by.

 

[Shugardrawers]

Tammy, I haven't experienced these feelings personally but over the years I've taken care of many patients who have expressed feelings like this to me, feelings that were too painful for them at times to even discuss with their own family (something I consider a huge priveledge). There have been many nights at 3am that I've sat and cried with people when they were too distraught to sleep - I've even helped them plan their own funerals. So yes, I would say they are normal. I'm glad you can express them and have a safe place here to do so. I'm sure I speak for everyone here when I say we are all pulling and praying for you. Know that we're here to listen anytime and hope you keep us updated when you can. I also just want to ask if your caregivers know you are feeling this way?

My caregivers being my Dh and DSis, I think DSis suspects but no, I've never said it to them. Dh refuses to believe there will be anything but a good outcome and therefore won't even discuss arrangements or death at all. DSis is more realistic but I don't want to upset them right now. I'm seeing a therapist every other week but I'm afraid if I tell her that she'll put me in the psych ward on suicide watch and that's not how I feel at all.

 

[Pea-n-Me]

I'm sorry Tammy, I meant your medical team when I said caregivers. The reason I ask is because many people in situations similar to yours do experience some degree of depression and there are medications that can make a difference in how you feel. I'm not a pill pusher necessarily but I do think that there are times that some of these medications can help and this may be one of these times. Let your doctors know how you're feeling and ask about what medications might be available. Give it a try.

 

[Tinkertude]

I found this site in my search for merchandise to sell Check out the buttons.
Some of them made me http://www.choosehope.com/

 

[Laurajean1014]

I can see that.

Not knowing your DH (but assuming he's normally a great guy) the only thing I can think of is that emotions running high combined with anger and a knowledge deficit about breast cancer caused his momentary lapse in caring and sensitivity.

Let's hope he snaps out of it or we'll have some butt kicking to do.

Let's hope, but for now I'm not betting on it.

My sister is going with me for the surgery - DH was not happy about it, but right now, it's not what makes him happy. I need to do what makes me comfortable. He is not there for me.

 

[Amy]

Laurajean - hugs to you! I'm sure your DH is in some stage of shock where he doesn't know what he's saying. Hang in there, and I hope you find support from someone else until he comes to terms with your cancer.

Shugardrawers - I know what you mean about hoping for a quick death, because I felt the same way after my diagnosis. Even though the drs said they caught it early and I had a great prognosis, I was still scared silly. I had CANCER, and that meant I was going to die; I didn't want to suffer, and I certainly didn't want to put my boys thru watching me suffer. I don't know how many times I told DH to make sure the drs knew about my living will. But I pulled thru and except for some minor bumps in the road, I'm doing ok 3 years later.

Update on the return of my periods and my unrelenting bleeding: saw my gyne yesterday since the bleeding had been going on for a week with no let-up. Did some blood work, and my count was WAY low. He said there were 3 things he could do: (1) he could give me some progesterone, which might take up to a week to stop the bleeding; (2) I could have an emergency D&C done; or (3) he could do this uterine ablation thing, which he explained is basically cauterizing the entire lining of the uterus. The progesterone thing did NOT sound good to me, basically because my BC tumor was ER/PR+. He agreed and said that if I didn’t have a history of breast cancer, he’d tend to lean toward the progesterone.

Anyway, my gyne called my oncologist from right outside the exam room, so I got to overhear his end of the conversation. He even mentioned hysterectomy, which at this point I was all for it if it would just stop the bleeding. Anyway, my oncologist said the progesterone would be ok for about a week if I wanted to go that route, but in the end we decided on the D&C. My gyne didn’t want to wait until Friday (today), because my blood count was so low he was afraid if I kept bleeding for another day it might fall low enough that I might need a blood transfusion . So they squeezed me into the OR and did it yesterday. And I am very happy to say that other than some very minor bleeding right after the surgery, no more bleeding! Now I've got to take iron pills to get my blood count back up.

My oncologist said she'll probably start me on Lupron next week (she had to get approval from my health insurance first). I plan to discuss all those side effects that Laurajean/Laurabelle (I can't remember who) posted a few pages back before she gives me the shot. My gyne totally agrees that lupron is the way to go for me - get me back into menopause.

Hang in there everybody, and have a great weekend!

 

[Pea-n-Me]

Amy, glad the surgery took care of the problem.

I've been meaning to post about the side effects of lupron, thanks for reminding me.

With all medications by law they have to list any and all side effects that have occured from anyone taking the medication in the past that may have been attributed to the medication (they can't always be positive it was the medication that caused them). It doesn't mean necessarily that you will get those side effects, it just means they could occur. As part of informed consent they have to make you aware they could happen.

As a nurse I have to read through all these side effects any time I give a medication so I know what to watch for. You get to know common ones with certain medications and some not so common ones. I took lupron myself during infertility treatment and the only thing I remember is that it made me feel kind of hyper, like I'd had about 10 cups of coffee. I didn't even see that one listed.

I also want to add that getting chemotherapy was incredibly scary for me so I can understand why people get nervous about taking medications. I felt like I was signing my life away when I signed those consent forms. I also had to take 20 doses of neulasta/neupogen and aranesp (like procrit) and when I read the insert that came with those I nearly died. Talk about scary! I actually sat on my bed for about 1/2 hour before my first injection and later put in a call to the oncologist on call to go over the side effects before I gave myself the shot. She assured me that even though there were all kinds of nasty side effects listed - including death - those side effects occured mainly in a certain population of people (kidney patients) but they were required to list them anyway. I asked her point blank if she had ever seen anyone have the major reactions from the shots and she said no. It wasn't until I heard that I became comfortable enough to take the medication.

I'm not saying whether you should take the lupron or not. That's totally your decision. I just want you to know that seeing that list of side effects doesn't mean you'll necessarily get them. Also, whenever you take any medication you have to weigh the benefits and risks of taking them vs not - i.e. which is worse, to take them or not? The medications or the disease state. Not always an easy answer. Good luck deciding.

 

[Amy]

Amy, glad the surgery took care of the problem.

I've been meaning to post about the side effects of lupron, thanks for reminding me.

With all medications by law they have to list any and all side effects that have occured from anyone taking the medication in the past that may have been attributed to the medication (they can't always be positive it was the medication that caused them). It doesn't mean necessarily that you will get those side effects, it just means they could occur. As part of informed consent they have to make you aware they could happen.


I'm not saying whether you should take the lupron or not. That's totally your decision. I just want you to know that seeing that list of side effects doesn't mean you'll necessarily get them. Also, whenever you take any medication you have to weigh the benefits and risks of taking them vs not - i.e. which is worse, to take them or not? The medications or the disease state. Not always an easy answer. Good luck deciding.

Pea-n-me - I know what you mean. I went thru the same thing when I started Tamoxifen. Yes, SOMETIMES it can cause uterine cancer, but the chances of that happening are so much lower than the benefits from taking it. I'll use the same reasoning when discussing Lupron with my oncologist.

I always tell DH the same thing when he makes me angry about something - as long as the good outweighs the bad, I'll keep him!

 

[NHAnn]

Pop Daddy! LONG POST!!! thanks for stopping by!

Hi to everyone...I apoplogize for not responding to everyone/everything...lots going on here, and in my home life the last couple of days!

Laurajean, I have been thinking about you and your DH all day . I agree with what MerryPoppins posted earlier. I stopped in the library at the Cancer Center today before my radiation treatment as I had some time to kill. On the shelf they had a book ...title caught my eye...."Breast Cancer Husband" by Marc Silver, so I glanced through it...it looked like it might be helpful.....here's a link to some excerpts from amazon.com Breast Cancer Husband I'm a reader...sometimes too much so so I tend to go that route...you and/or your DH may not. This looked like it was easy to read, easy to relate to (for the reader (the husband or SO) style.
This is SUCH a difficult time, for both of you. I hope you both can find some resources for support. My thoughts and prayers are with you.

Tammy...hugs to you too..

Tinkertude...great website

Amy, Linda, everybody....

 

[ElenitaB]

Laurajean and Kelly

There's a magazine called CURE and it's awesome! You can find it online at http://www.curetoday.com/ Two issues ago they had an article about husbands and BrCa... while I don't currently have a husband (I'm a single mom) or breast cancer, I did find the article (written by Marc Silver and titled "Navigating the Caregiver Terrain: What I wish our doctors had told me when my wife had breast cancer") to be a useful resource. Family members are often just as frightened and confused (and maybe even angry) as we are when faced with a diagnosis. I can understand how hurt you are by your DH's comment (I would be too)... my DS told me something very similar during an argument (and he was only 6).

As for me... the CT scan showed a cyst on my liver and another one on my right kidney which is also enlarged and dilated. There's an enlarged lymph node next to the kidney cyst. They redid the CA-125 and did some blood tests to test kidney function to see if I can even have surgery. I see my doc on Monday morning to discuss the findings and next steps. I was in a bit of a tizzy yesterday and went on a carb bender (I've been on The Zone and really enjoying it)... back to eating better today!

You're all in my prayers and Lord knows we all need some PD Hugs and blessings!

 

[Pea-n-Me]

Elineta, here's some prayers and pixie dust for you absolutely!

I'm off to the mountains and lakes for a few days. Stay well, everyone! If I can get online up there somehow maybe I'll drop in and say hello.

 

[disneylizzy]

Laurajean - I can't believe your husband said that, but this disease can do a number on relationships. My DH kept saying "I lost my wife". Hello!? I'm still here - not planning on going anywhere anytime soon. Sometimes people can't get past "enough about you, how does this affect me". I sincerely hope you get the support you need, if not from DH, then from your sister.

My thoughts and prayers are with all of you - I don't post much, but I am here lurking.

Thank you, Laurabelle for the ribbon - I love it.

I went off Tamoxifen last week (yea!) and am starting Aridmex (sp) next week.
I'm glad to go off Tamoxifen because of the hot flashes and weight gain, but I went off because I had 4 abnormal paps in a row (no signs of dysplasis, though).

 

[Laurajean1014]

disneylizzy - How is the tamoxifin? Are your side effects minimal? I hope they are.

Thank you for the very kind and comforting thoughts.

 

[Laurajean1014]

Thank you all for your support.

Would any one like to share when they thought the best time was to tell their children?

 

[mickeymost]

Laurajean first, let me say

I found it best to tell my children who were 4,6 & 9 at the time when I knew what I was in for. Surgery, chemo, and radiation. It was easier to tell them when I had the full picture. Even after recurrence, I waited until I knew what I would be in for (only radiation this time thank God). When I was first diagnosed, I told them seperately, they were at very different levels of understanding. I found it best never to hide things from them, when they saw how strong I was being through all of it, it made it easier for them.

You will know when it is best for you.

Prayers and PD for you

Kelly