Dis Breast Cancer Survivors Part III - GAGWTA!

[MinnieTink]

got my schedule date for my chemo...I start May 12th for every other week getting A/C then every other week with Taxol...I have so many prescriptions my head is spinning.. Still have to go for bone scan and a mugha test(heart)
I almost wish the 12th was tomorrow so it will be one down and 7 to go.

Is chemo really that bad? I am a wreck thinking about it. Going to look for a wig this week as they tell me that I will be bald in 10 days(sigh)...

Find it so odd that modern medicine has not found a way to not let women loose their hair...it is just the icing on the cake.

okay I will move forward and just hope for the best.. Looking for others tips on how to cope with chemo...both physically and mentally..

thanks

Thinking of you, MiniJeanie.....

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Maryann, thinking of you! Glad that your DS got a job!

Sha, enjoy your dinner! I hope there is a table in Ricardo's section!

MiniJeanie, good luck today!

Minnie Tink, I hope your mom's surgery goes well!

Lisa, glad you found a vehicle for DH!

DS and I have decided to drive up to see my mom in July. I despise road trips. But I can't afford $500 in airfare, plus all the costs once we get there. So we enrolled DS in a Theater camp in August (instead of the July one) and we'll go spend 4 nights with my mom.

 

[Sha]

MinnieTink... good luck today...

Hoping that the rest of the radioactive stuff goes okay with the steps you have to take LMP

thoughts and prayers for everyone. Am packed.. have to get ready for work and then load car. Will be getting a new phone shipped to me at WDW so maybe I can manage sending pictures to FB again. Hoping to have Ricardo as a server, but hope to get to La Nouba on time too.

Be good everyone!

 

[luvmarypoppins]

Good morning ladies

The 2 ds are sleeping now, so I dont have to worry about the 3 feet

minniejeanie - how did your first treatment go? Thinking of you

Minnie Tink - glad you are feeling a little calm, under the circumstances

Sha - Enjoy your trip and La nouba too. I have never seen that.

Fl Lisa - have a great trip with your dd and meeting Sha.

Laurie - See ya soon. I am going to have my ds program your number into my phone. I am tech inept. I might pm you my schedule and see what that looks like compared to yours etc. and see what would work out for you too o.k.

Elizabeth -the road trip with your ds to see your mom sounds fun! Good bonding time before hs.

Nota - That was awesome about the pope! I didnt see the show, what did they say? I know someones baby dd that they tried it on who had leukemia. It worked at first.

Dh is coming home tonight, yippee!! Um, too bad we wont be in the same place later. He is banned to his lazy boy since he hates the couch.

Well I must have food on the mind because when I talked to dh yest. I asked him if he wanted to have breakfast at Kona for our anniv.birthday next week. He said yes. So that will be new for us. I am dreaming of my adrs right now. O.K. I am probably obsessed with them!! Wonder why

Ds 22 is going to his college formal. I am happy for him as he is not so good in the romance dept. Last year he went with his best guy friend. This year he told me about the girl. She probably goes to the same house of worship as the lady from the hospital. Wow, small world! If I see her tomm. I am going to ask her if she knows the girl etc. She is a junior, good enough.

GTAGWTA.

 

[Pea-n-Me]

I was looking for something else when I came across the term Disenfranchised Grief. I don't think I've ever heard it before. But the definition blew me away. Has anyone ever experienced this?

Disenfranchised Grief
"Disenfranchised grief" is when your heart is grieving but you can't talk about or share your pain with others because it is considered unacceptable to others. It's when you're sad and miserable and the world doesn't think you should be, either because you're not "entitled" or because it isn't "worth it."

See if any of these examples of disenfranchised grief ever applied to you:

Your relationship is not recognized by others because they didn’t
know you had a close relationship.

This can occur when there is a miscarriage; a friendship not known to the family; caregivers such as a health professional when a patient dies; or the family knows about the relationship, but doesn’t know how close it was.

Your loss isn’t a person.

Examples that fall in this category are beloved animals, your failed marriage, your unfulfilled dreams, a financial loss or business loss, a loss of health, the loss of a loved one’s functioning (such as in the case of Alzheimer’s).

Your relationship was real, but the family (or members of society) would not or does not approve.

This can occur if there is a non-traditional relationship such as a homosexual relationship, especially when the person who died wasn't out or if there is discrimination in the family. It can also occur if a family member is estranged. A stigmatized relationship like an extra-marital affair or when a woman has an abortion are other examples of this.

The way the person died is not as supported as other deaths.

This occurs when the death or the deceased person’s actions while alive are stigmatized by society as with deaths from suicide, a drug overdose, AIDS, a war, violence, or alcoholism. Sometimes a death of a person who had a long life is more discounted than someone younger.

You aren’t grieving how people expect.

This can happen when the way you are acting in your grief is unsettling or confusing to someone else. If you are “too upset” or “not upset enough” or the grief is “lasting too long” are only a few examples of this.

If you're experiencing any of the above (or something similar), you need to know that you are entitled to your grief. Nobody has the right to take away your grief, and it is their failing -- not yours -- that makes your grief "unacceptable."

Disenfranchised grief happens because your love and care for the object of your grief isn't recognized. It happens because others don't understand. It happens because you're sure that others won't understand. And it happens because you fear that everyone else will think that the grief you're experiencing is somehow your fault.

And in certain situations you may be right -- not the part about it being your fault (because it isn't!) -- but because there are certain situations where people try to turn their own pain and anguish outward at the nearest convenient target. Or they're just super-judgmental people.

In any event, it is not your fault -- it's not like any of us can control who or what we care about -- and you have a right to your grief, your style of grief or your reason for grief for one reason: because you are grieving.

If you feel grief, then it is your right as a human being to grieve and to grieve exactly how you need to as long as you are not hurting yourself or others.

It is also your right to be comforted, affirmed and validated.

Find someone who understands this and affirms your right to grieve and your right to grieve exactly as you need to. Tell yourself at least once each day as you live through your pain , that your love was real and that is why your grief is real. Find words of encouragement from others or books.

Enfranchise your grief. Shine the light on it and watch as the darkness begins to lessen.

[An important note from Elizabeth: If I have not listed the kind of relationship that you lost, but you have been disenfranchised, please call me and let me know so I can add your contribution. You deserve to have your relationship listed here.]

Source: Attig, Thomas, 2004, Disenfranchised Grief Revisited: Discounting Hope and Love. OMEGA Vol. 49(3). (Based on Kenneth Doka’s books on disenfranchised grief)

http://www.expressivegriefcounseling.com/disenfranchised-grief-alone-ashamed-new.shtml

 

[KJ Luvs Pluto]

MiniJeanie - Hope all went well with your first chemo and that you have very few side effects.

Maryann - How are you feeling after your pill?

MinnieTink - Let us know how your mom is doing - and how you are doing through all of this.

Notatourist - Hang in there with your chemo. I feel for you.


GAGWTA.

 

[luvmarypoppins]

Good evening ladies

Well I survived the long, long day Lets just say dh as usual got me there late. I got a dressing down from the scheduling leader. She said now we are taking someone before you since you are late. I got there 12:50, it was for 12:30. They said I must wait till 2 pm. O.k.all I had to eat was a banana. I purposely dehydrated myself. I am tired. Dh already was aggravating me since he used the bathroom this morning and I told him not to.

So of course I am crying and they just throw me a box of tissues. I refuse to speak to dh as he didnt bother to tell them the lateness was all HIS fault. He just couldnt leave when I told him to. I am always on his back burner.

So the test was 1 hour. Torture laying on that table. When I got up my back was killing me and I was so dizzy. Got the wheelchair. The onc. says (and I am asking our resident thyroid expert christine on the c anc c board too) that my scan showed a 1.0. She likes to see it at a 0.5. It could be caused by a salivary gland shadow. So then I had to go for the blood test. This is the better indicatior if the cancer is back. Of course the guy cant get my vein as I am so dehydrated. 2nd time was a charm. Now those results wont be in till friday so we are callling the nurse from disney to get the results. So the rad. onc said she will see me in 6 months. She is never concerned about anything. She says I know you always worry. I said, yes I do. I know I saw so much more sicker than me today, so I think she just concentrates on that. But maybe its a sign that everything is o.k. I will pray.

Ds20 is driving his car to scranton penn tomm. for a basketball tournament and staying overnight. I will pray for him. He has never driven alone out of state. But they gotta grow up sometime.

Dh and I went to a restraunt and I ate alot of food.

Linda - Read the article. I just get bothered when people "mean well". Mostly the people at church. Like 1 said I could help her 1 day this summer at the vbs program. I didnt say anything. She came up to me and said, oh I heard you and ds are teaching for the week. I said yes. They just assume I cant do anything because I have cancer.

Also I get upset when they just always ask "how are you". I want to say sometimes. I have had a totally crappy week etc. I think I said that to someone once, they just either look at you or say I will pray for you. They never say oh like what happened etc. I feel they just dont want to hear what I am going through. etc.

GTAGWTA. I am going to rest now. I am drained, both physically and emotionally.

 

[luvmarypoppins]

Good noon ladies

Nota - I know you mentioned once about meeting up, you can join Laurie and I sometime next week or you can hang out at the Poly with me. I will ban dh to a hamock or somewhere else with his laptop I will pm you my cell # if you want. Dont know how the chemo is affecting you etc. All my best to you.

Its a beautiful day here and I am stuck inside. Washing clothes for the trip. Cooking for church lunch pot luck tomm.

Later dh and I will be going to my fav. italian restraunt. After cooking 15 straight days for myself I need a break.

Later I will book the towncar as we do not enjoy the magical express. I guess since we always seem to land in another terminal, they wont drop you back off where you want etc. Its a hassle to us.

Poor ds18 has like 3 b day partys to do today. I hope he does well tip wise.

Ds has said he made it to penn. All is well in my world

 

[Sha]

got to see Lisa earlier and her DD... very nice young lady. Will see them again later.

Talked to my mom earlier and found out her cousin's wife has breast cancer. That is all I know.

I need to quite being so generous I think... hopefully, my friend and his wife can make it, or else... another friend who lives locally can take his room. I got my friend a room on my points to check in tonight and he now tells me they may not get to make it. I was helping them out as money was tight, but i couldve cancelled it if it was yesterday. I doubt that the other friend will take it as he has dogs to get back home too, even if they do have a doggie door. im trying not to let this steal my happiness but it isnt working too well.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Sha, I would not be very happy if someone accepted the offer of my points and then wasted them!

 

[MinnieTink]

lmp, glad you are done with that diet! Glad things seem brighter for you today.

So yesterday I had to go to the ER for 5 hours because of a lovely gall bladder attack. I've had a couple of episodes (first last Sunday night) but yesterday was nuts. It was going on two hours and all I could do was pace like an animal and it was that 'praying' pain, where you start saying oh God please I'll go to church every Sunday if you take this pain away. Yes good times. My mom and dad ran over when I finally waved the white flag. They took care of my kids and DH took me to the hospital. Left 5 hrs later with suggestions to get tjis bad boy yanked asap. Anyway I feel a lot better.

My mom is doing well. Getting ready for lumpectomy and sentinel node bx on Monday. We are confident and positive and look forward to the road to her healing.

Best to you all....

 

[Notatourist]

Good noon ladies

Nota - I know you mentioned once about meeting up, you can join Laurie and I sometime next week or you can hang out at the Poly with me. I will ban dh to a hamock or somewhere else with his laptop I will pm you my cell # if you want. Dont know how the chemo is affecting you etc. All my best to you.

Its a beautiful day here and I am stuck inside. Washing clothes for the trip. Cooking for church lunch pot luck tomm.

Later dh and I will be going to my fav. italian restraunt. After cooking 15 straight days for myself I need a break.

Later I will book the towncar as we do not enjoy the magical express. I guess since we always seem to land in another terminal, they wont drop you back off where you want etc. Its a hassle to us.

Poor ds18 has like 3 b day partys to do today. I hope he does well tip wise.

Ds has said he made it to penn. All is well in my world

Thank you but I don't think I can do it this round...worn right out and moving all at the same time...

Next time?

 

[wdw4us2]

We got home from WDW a few hours ago. What a great trip!

I'm glad I got to meet Sha. The cruise on the Grand 1 was even better than I'd expected. Sha's friends were a lot of fun and really nice. DD and I also ran into Sha today while we were at the Studios - an unexpected surprise! I hope we can get back up to WDW again and spend some more time with Sha. This trip was kind of hectic. Next time I go to WDW I'd like to have a little more time to relax.

 

[luvmarypoppins]

Good evening ladies

I am doing last minute shopping for the trip and since I guess I will still be dealing with this radioactivity stuff I managed to set the alarm off at wal mart, . While I am fine to be around people etc. etc. they said very sensitive detectors make it go off. Hmm, should be interesting at the airport on tues.

Oh and a wonderful lady who sat with us at the pot luck today after church kept telling me about all these people who were dying from cancer. Hmm, I did manage to tell her I am fighting etc. etc. She did cook us a nice meal last year, but I dont need to be hearing stuff like that. I need positive people etc. I am sure she emeant well but didnt realize what she was saying since she is older etc. Sigh, sigh.

Lisa and Sha - sure glad you got to meet up!

Tell me about your food experiences ladies,

Sha - did you get Ricardo?

 

[MinnieTink]

Hi everybody
Well my moms surgery is DONE!!! It is such a relief that we are thru this day. A good friend of mine who works at the hospital came and sat with me for a while. The surgeon came out and spoke to my dad and I. She said the preliminary on the sentinel node biopsy is negative! My mom is in a bit of pain but resting comfortably at home. I'm sure there's more but I so tired! I can't think.

Thanks for all of your thoughts and prayers

 

[snappy]

Such good news!!

And how are you feeling?

Getting ready for the trip here. It is very exciting. All is going according to plan. DD14's friend is here and they are getting ready to go to bed so we can get up early.

DH even left work early. The van is cleaner than I have seen in a while. He just ran it through a car wash but used TLC to clean the inside. For an old van, it looks pretty good, kind of like me I guess???

DH is on my good side big time right now for doing so much to get ready so soon after the graduation. I wasn't sure if we could pull it off, but having the dinner at the restaurant in lieu of a party was genius.

Hope you are well on your way to getting ready too , LMP.

See ya real soon!

 

[KJ Luvs Pluto]

MinnieTink - Prelim negative on the sentinal node is very good news. I'm so glad to hear that. I hope you and your mom get some rest now.

 

[wdw4us2]

MinnieTink - That's great news!

Laurie - I hope your trip is as nice as ours was. The weather was great, too.

Nothing exciting going on here. I have labs tomorrow morning and then I see the oncologist on Friday and I have my Herceptin infusion.

 

[KJ Luvs Pluto]

Lisa - Hope your labs went okay.

MinnieTink - How's your mom doing?

I was looking for this thread and came across another one and started reading just a bit and maybe everyone has read it already but since I'm kind of new I hadn't seen it yet. It was started by Dan Murphy and he quoted a song called "I Run For Life" (I think that was the name of it, I must still have chemo brain) - WOW. I never heard of it, but the words almost brought tears to me eyes. (And I haven't cried one tear yet, not upon being diagnosed or from the pain or seeing "that look" in my husbands face). But thinking about all of those people who run for us, that really touched my heart and those words to that song made me stop and think about that. I have always donated to various health organizations, breast cancer being one of them, but now things like this have so much more meaning.

Thanks Dan. I really enjoyed reading those words.

I hope everyone has a great weekend.

GAGWTA

 

[MinnieTink]

Hi everyone!
My mom is doing well. She came to my DDs event at school. She feels pretty good. Seeing the surgeon next Friday. The surgeon told her she would have to have some radiation. (any info, advice?). Also got back receptors. I think the EP was positive, PR borderline, Her2 equivocal---what does that mean?

Hope you are all well and have a great weekend!!!