STEAM ROOM FOR ANGER

bcincolorado

Best of luck on filing candy!

mustlovepoodles

Ladies, I had terrible diarrhea from the first chemo on. It was debilitating and it lasted well beyond the end of chemo, several months. I was having 7, 8, 9 explosive watery stools a day. Sometimes I would just sit in the toilet and just let it all drain out. It was exhausting and Immodium didn't touch it. There were many "almost accidents" and 2 poo-in-my-sleep accidents. Yuck!

Finally, I went to see a GI specialist. After doing a colonoscopy to make I didn't have colon cancer, he agreed that the chemo had seriously irritated my bowel. He put me on Welchol, an old cholesterol drug whose main side effect is...constipation! Oh, joyous day! Constipation! Well, I never got constipated, but Welchol slowed things down enough that my stools became normal consistency, about 2 a day. My life returned to normal and I stopped carrying around complete changes of clothes everywhere I went.

It took almost a year on Welchol to get everything back to normal. I'm so glad my doctor suggested it. My life was in ruins and Welchol set me free.

Meow13

Sorry to hear. I know Lita57 can sympathise. About 30 years ago I suffered terribly and they never figured out what was wrong. After having 2 babies it seem to go away they said IBS. It was the worst and such an impact on my day to day life. I hope you feel better soon.

mistyeyes

Candy- so glad that you went to HR and got help

mustlovepoodles

OMG, can I blow off some steam before I throttle my husband? He did the laundry today, as he has for many years. He is no stranger to the ways of washing, although he really doesn't get the whole idea of sorting.

Just for fun, how many times in the last 37 years do you think I have said, "Please, please do not wash ANYTHING white/light with my black pants?" Well, at a minimum of 3 times a year (being generous here), that would be 111 times. You'd think if someone told you 111 times, sometimes angrily, to NOT put ANYTHING white/light in the laundry, you'd get the point, right? WRONG.

Today, we are preparing to go back to NOLA to repair my abdominal incision which is a massive mess. I am still under lifting/carrying restrictions 3 wks post-op and everything I do makes me fatigued and short of breath. Therefore, my duties in the laundry consist of sorting and direction-giving. I needed to soak my binders for a bit, because they both had nastiness from my open wound. I told DH TWICE , "Do NOT wash or dry these with anything other than towels or sheets."

Guess what he did? Washed my binders with my black pants. Lint everywhere. Now here's something you should know about me. I only own 3 pairs of pants that I can wear right now, all black. I'm wearing 1 pair and the other 2 were in the wash. When I found lint all over my pants, I got very upset. DH just shrugged it off, saying, "I'll buy you new pants." Arrrgh! What i wanted to say was, "You cretin! We leave tomorrow for NOLA! There is no time to go shop for these special pants! Why can't you just listen when i tell you not to wash black things with white things? HOW HARD IS THAT?" Grrrrr.... Instead, I got out the tape and went to work on the pants. I got most of the lint off and my bags are 95% packed.

But inside I am screaming and throwing a tantrum.

Mominator

(((HUGS))) Poodles

There's two kinds of lint in the world: the dark lint, which sticks to light things, and the light lint, which sticks to light things.

Let off your steam here.

Wishing you safe travels and best wishes on the wound repair.

Madelyn

Meow13

mustlove, I still have that problem too.

molliefish

oh my goodness girl I hear you! I've had clothes that I haven't even had the chance to wear be ruin by someone who doesn't read labels. I love them no less but holy..... Can yenot read!!!!!!

finallyoverit

I'm furious! Something I asked to be kept private, I just found out was not. Wtf is wrong with people?! If I had wanted it shared, I would have shared it myself. 1- it's not YOUR news to share (but by all means, if you want this sucky dx, you can have it) and 2- I specifically asked for it not to be shared.

Fine, have it your way, the next update I give is when I enter hospice. Until then, you all can kiss my @ss!

ETA to fix typi

Meow13

I have a neighbor that I told about my BC and I asked her not to tell the other neighbors she did couldn't help herself. When my Mom had a stroke she was all over us to tell them what was happening and I wouldn't say. I told her my Mother will be fine and as the hospital. She called, left messages rang the doorbell. I still wouldn't tell her. She had the gaul to leave my mother a voicemail saying she had heard she had a heart attack. Something is really wrong with people that are like that.

Lita57

Mr. Diarrhea is back. Almost shat the bed last night. Don't know if it was the dye contrast from my brain MRI yesterday, or something else.

Today's cancer haiku...

Stripped of dignity

Left with humiliation

Life with my cancer

L

mistyeyes

Lita- So sorry Diarrhea is back. It is so miserable- your afraid to go anywhere and do things thinking you will have to stop to run for the bathroom. Hope it gets better soon.

Finallyoverit- sorry this happened to you. I think its a little bit human nature to want to share stuff with someone rather than hang on to it. We had a thing at church once with just the women of the church, who ever wanted to give a testimony or share something they can because at church they should feel safe to do that and that we are all 'family' and here to help each other not hurt each other. What we heard from someone else was not suppose to be told to anyone else because it is not our story to tell. It was only hard for me when my husband asked about the meeting. What I heard was not my story to tell even to him, but I really wanted to share it.

WC3

I had my surgery consultations. I am doing neoadjuvant chemotherapy and was hoping to have surgery within 4 weeks of my last infusion. This is also when the breast surgeon wants to do it but as they want to do immediate reconstruction to avoid scar tissue complications, the time frame is contingent on the cosmetic surgeon's schedule. The cosmetic says he books 6 to 8 weeks out. Not thrilled as my cancer is aggressive, I don't believe chemo will get it all, and I have vascularity that makes it easy for the cancer to get to my bones, but begrudgingly would do 6 weeks. But I got from his scheduler saying 10 weeks!!!! I said I was NOT ok with that! She finally said the earliest was around 7 weeks. I'm still not ok with that. She tried to pass it off as being in my best interest. I am DEFINITELY not ok with that as I know that is a lie, at least from an optimal time between NAC and surgery to remove the cancer standpoint.

I was too drugged up at the time to express my true level of discontent with this and push for more answers because I was in the middle of my infusion with a cold cap strapped to my head with cytotoxins flowing in to my body and IV benadryl has a strong sedative effect on me, but I am mad.

Meow13

I had to wait almost 5 months to get a DIEP surgery with my plastic surgeon. He does 1 a week. I hated the wait after mastectomy. Really tramatic for me. When I was scheduled to have fat grafting the office called me to put my procedure off to accommodate a lady the wanted to do a mastectomy with immediate DIEP. I was glad to help out postponing. I would have liked that.

WC3

Meow13:

I am not interested in immediate reconstruction myself. I just want the cancer out if me fast. But they feel I will have skin/scar problems if I don't do immediate reconstruction. One thing I don't understand is we had talked about doing a two phase reconstruction where tissue expanders/temporary implants would be placed imnediately after the mastectomy to avoid skin/scar problems from developing, and doing flap/grafting at a later date when I have the tissue for it. I don't understand if that is off the table now and if so, why.

One possible issue is, due to another condition, I can't have submuscular implants. The implants/expanders would be under skin only with no glandular tissue to protect them and the breast surgeon seemed kind of surprised the cosmetic surgeon was willing to do this because my skin is very thin. He had mentioned putting a layer of collagen in there to protect it but maybe he reconsidered? I will have to try to get some answers tomorrow but I really just want the cancer out of me above all else.

Of course I have to be a complicated case though. I have loose skin from being overweight for a short time in my teens, everywhere, except my chest, where I have unusually tight, thin skin.

Lita57

I'm here to put some things into perspective for myself - and possibly others. (Parts of this were cross posted...)

The first confirmed deaths from Hurricane Florence have come in. Some of us fret and stress over dying from MBC almost every day,. but these poor folks had NO IDEA earlier this week that they would be gone by today, Sept. 14.

The death toll will no doubt rise before this is all over, I'm sorry to say.

I just watched the PBS American Masters episode on Margaret Mitchell, celebrated author of Gone With the Wind. She was killed by an automobile when she was 48 years old, crossing the street w/her husband on their way to the movies.

We should all be thankful we're still here, wicked Mr. Cancer or not. NONE of us is promised tomorrow, so we should just take it one day at a time, if we can.

Blessings to you all, and continued prayers for the people back east.

L

Meow13

yes Lita, I was so sad to see a mother and an infant were killed when a tree went through their home. I wish that people would evacuate especially when children are involved. My cousin and her family left Mrytle beach a couple days ago. I fear their house which is next to the intercoastal waterway might have severe flood damage. I do feel fortunate.

molliefish

Often our emergency service members have a front row seat to the harshness of life and there are few people who understand the fleeting time we have here more than they. Go easy on your selves and easy on your neighbours. No one really knows how long we have here, but they know how quickly it all disappears. As a first responder I carry the memory of many deceased people around with me. This is not a burden but a blessing, to be able to understand how fragile life is. I find I slow down a lot more these days and appreciate the small wonders. Peace to you all.

SheliaMarie

I may get bashed for this. I hope not, but regardless I need to express my feelings. The ONE beautiful thing about a hurricane is that it doesn’t catch you off guard. You know days, sometimes weeks, in advance. I lived on the coast for several years and this alone gave me comfort. Having the knowledge of even the possibility of being in the path allowed me an opportunity to get my family to a safe place. I get really angry when people knowingly put themselves (or keep themselves) in dangerous situations. Especially if you have children. Yes, my heart goes out to those who lost their lives, but at the same time they KNEW this hurricane was coming. Why didn’t they leave? It’s not like a tornado, earthquake or tsunami where one minute your walking along, living your life and within seconds your life ends... I don’t mean to sound harsh, it’s still sad, I know.

Lita57

Amen, Sheila!

Mominator

Yes, Hurricanes. We at the Jersey Shore sometimes get a little jaded about them. It's hard to predict exactly where they are going to land, and how bad they're going to be. We're pretty tough; we're used to some local flooding, a few downed limbs, and power outages. I'm 1.25 miles from the ocean.

One of the families in my special needs group was in an area under mandatory evacuation. The mom loaded up the mini-van with everything they needed (medicine and clothes for x number of days, etc.) to ride out the hurricane and they went to the town shelter. Children were allowed so many toys as would fit in the van. Mom took a picture of some dolls the girl had to leave behind and posted on Facebook. The dolls were to guard the house until they got back.

Sadly, there was no house when they came back. I'm so grateful that the mom took the kids to the shelter and didn't try to ride out the storm. The mom was expecting some flooding, but never, ever, expected her house would be gone.

That was Hurricane Sandy, 2012. You just never know. 

Lula73

For those that stayed and ignored the evacuation orders I agree. There are other areas that didn't have evac orders that are unexpectedly flooding with waters reaching unprecedented levels. After one of the previous hurricanes in N. Myrtle Beach blew a transformer that caught a neighboring condo complex on fire and spread to multiple neighboring complexes causing billions of $ of destruction (fire trucks couldn't get in due to flooding) they send out the evac orders, they deliberately cut the power off so the transformers can't blow and tell everyone that they will not be coming to rescue them if they don't leave. Knowing you absolutely will have 0 power for days and potentially weeks with 0 chance of rescue until the local government officially says its ok to return seems to be working down there.

They had on the news yesterday a whole segment on low income and working poor not evacuating because they didn't know anyone outside the evac zone, no money for gas, if work opened they would be fired for not coming in, they need to work to make money or they get evicted, they need to stay to protect their property as they have no way to replace it. An economics professor backed these claims up. Here’s my response: 1) you don't have to know anyone outside the evac zone - there are shelters open all over the state. 2) the state/local govt sent buses in to help those with no gas money to evac. 3) if your job opens and calls you in to work there's a problem and it's not the ones following the evac order. It should be law that if evac is ordered by state/local govt that businesses must abide and cannot reopen til evac is lifted. Job protection should be mandated by the state/local/fed govt protecting these individuals from being fired. 4) For the time you're in the shelter youre not paying for anything. Landlords should be required by law to give a grace period on rent when catastrophic event start occur in their area. And additional money making opportunities will present themselves post storm for cleanup. Even if you can't get home right away theres usually storm cleanup paying opportunities in the shelter area. 5) Put your property up as high as possible, pack what you can and take it with you. Get renters insurance. We lived in a 2 bedroom upscale apartment for 2 years - renters insurance was $9 a month. If your property isn't worth $9 a month, then it isn't worth losing your life over.

Rant over

Artista964

I only feel sorry for those who couldn't get out in time. Disabled, elderly, sick... what would be nice to hear about is neighbors pulling together beforehand and helping those sick, disabled, elderly get to shelters. Not just those in hospital and assisted living but in their own homes.

sas-schatzi

Mustlove poodles, Don't have time to read through all the posts----very fast get him off the banking or anything else that has to do with your finances

sas-schatzi

Lula--- many wise words.... MANY

mistyeyes

Our EOC (emergency operations center) gets a list of elderly, disabled etc. and sets up rides for them.  I am sure they do not have everyone who needs them on the list though.   I agree that neighborhoods need to make sure all can be safe.  Nothing I own is worth my life or anyone elses.

TaRenee

when my phone updated and google updated it now looks unfamiliar and I am so unhappy! How the heck do I find my stuff now?!?!?

Dang technology.

AMLmom51

I'm lost on what to do between surgery and the start of radiation, including who is going to complete my FMLA paperwork. Lots of questions with no one answering. No help from the surgeon's office. I thought I would try the oncologist and the social worker and had to leave voicemails. My nurse navigator is completely unresponsive. I just end up in tears and having a pity party!!!!!!!!!!!!!

SheliaMarie

AML, will you be having chemo? I left my FMLA paperwork with my oncologist because chemo was a huge part of my treatment.

I would call the radiology office if you know that the next step is radiation. They should be able to give you your appointment or at least lead you to the right person.

Sorry I’m not much help. ((Hugs))

Annabelle2

AMLmom this is my first post (been lurking here since February) but I feel your frustration. The whole ordeal, especially my "nurse navigator", has been a complete shit show.

I came here to vent that at 3 am I am wide awake, regretting being talked out of the BMX I wanted. Yesterday I found a hard lump at the surgery site that felt just like my tumor. It was the emotional roller coaster I was hoping to avoid. Of course I can't call and talk to anyone, I used up my alloted number of questions during the first 2 weeks of my diagnosis. And the snippy little rad techs can't understand why I cry at treatment every day. "Because I have cancer, I'm sad, I'm scared to death, I'm here to lay naked and disfigured on your table, and nobody will help me"

*Editing to add: I guess lurking isn't the right term. This place has been my sole source of support for the last 8 months. All of you are amazing, and have unkowingly provided so much support, advice, hope, etc at every step along the way. I'm sure that's true for others who are reading here as well.