Dis Breast Cancer Survivors Part II -GAGWTA!

[Sha]

LMP both types of VAC systems are teachable to a caregiver... if its KCI VAC vs the other negative pressure (that I have not used myself yet), it is much more user friendly from what i am told. Your MD just has to write negative pressure vs VAC as VAC is trademarked to KCI evidently. I would of course say, talk to him about the types. He may not know the other, or not be interested. I would have to go back and look, but if you have an infection, it need would need be changed daily (the VAC). We normally changed it 3 times a week otherwise. I would hope you could get a nurse out for that from home care to teach him.. though, they like to keep an eye on it too.

I was thinking the same two things Linda mentioned.

Lots of hugs and prayers for you (and everyone else!)

am going to talk to my massage therapist today, about being so tired... she is a homeopath MD (i think that is right). Wish I could get a massage from her too.

 

[NHAnn]

Ugggh...I SWEAR I posted the other day and I don't see it.

Computer issues and hectic life continue here.

Casting for Recovery last weekend was absolutely amazing and I HIGHLY recommend it if you have one near you...I drove 3.5 hours to mine and it was soooooo worth it. Way outside my confort zone to go off alone for a weekend with "strangers" but I am SO glad I did it. AND I caught a 12" rainbow trout!

I miss the day to day involvement here, but am thinking of you all.
GAGWTA!!

Honugirl...I wanted to tell you I am a HUGE hockey fan....don't give up your passion, consider channeling it a different way if need be?

 

[Candy30]

NOTA- Welcome! You lurked on the right place! I must confess....I lurked too for a bit. It didn't take long to figure out that there are amazing people on this thread. I am sorry about all the pain. Percocet made me sick nausea and see things (hilucenate sp).

Ugggh...I SWEAR I posted the other day and I don't see it.

Computer issues and hectic life continue here.

Casting for Recovery last weekend was absolutely amazing and I HIGHLY recommend it if you have one near you...I drove 3.5 hours to mine and it was soooooo worth it. Way outside my confort zone to go off alone for a weekend with "strangers" but I am SO glad I did it. AND I caught a 12" rainbow trout!
GAGWTA!!

Honugirl...I wanted to tell you I am a HUGE hockey fan....don't give up your passion, consider channeling it a different way if need be?

NHANN- That's sounds amazing! Was the trout tasty?

am going to talk to my massage therapist today, about being so tired... she is a homeopath MD (i think that is right). Wish I could get a massage from her too.

I went to get a massage before treatment and they would not give me one because they said that some cancers can actually spread that way. Anyone ever hear of this before? Sha can you ask your Homeopath if that is true?

I have never had blood pudding before. What is in it? But I do luv regular pudding.

Linda: That is so great that you can talk to your kids like that. Some days I feel like I am so busy that I am missing them. Those are the days I sit and talk with them. I need to do this more often maybe just for me.

LMP- Luv ya girl!

Honugirl- We miss ya! Hope you are having a good time camping!

To anyone I have missed GAGWTA

 

[Pea-n-Me]

Candy, I don't know if it's "evidence based", but yes, I have heard of that. When I was in treatment, I had to get a doctor's note saying it was ok for me to participate in Yoga at my support center for that reason.

I think you meant Laurie, but I love having the "talks" with my kids, too. We do it a lot, and I think they enjoy them too (ie not a "chore"). We talk about anything and everything. We've been having many talks lately with this being such a transition time for them. I'm still kind of with the hand holding thing, as are a lot of other parents so I'm not the only one, I guess.

Merry, I forgot to answer your question. I don't know what treatment would be if it's found to be a bird problem. Possibly an antibiotic, I'd think, or an anti-fungal, maybe. Hopefully that's what it is.

Ann, glad you had fun fishing. Where'd you go?

Laura, thinking of you and praying that you're finding peace.

GAGWTA

 

[Sha]

LMAO

Candy, are you sure you want to know???!!

Black pudding (aka blood pudding) is made from pig or calf blood cooked down then cooled to congeal. Made into a sausage with Barley and something else usually. Very common with English breakfasts evidently, though I didnt see it or try until the end of my trip.

I will try to remember to ask her when I talk to her.

 

[Notatourist]

Thanks for the welcome guys. a little food helped my stomach issues, but I see another restless night ahead.

Heard about Farrah. Sigh. Lost a friend to liver cancer over the past weekend...this all just sucks, you know...

Hang in there all.

 

[luvmarypoppins]

Good afternoon ladies

Quick vent - I am sick and tired of being sick and tired, Vent over, Return to your normal post.

Dh says I look sick??? or weak??? I forgot what he actually said, though it wasnt a compliment.

Well I have survived driving with ds 17 to work and the deli. My gosh, I don't know how this boy will ever pass the road test. Of all the ds, he is the worst driver. Very erratic and seems unsure of himself. Then I had to put up with letting ds19 drive to the new pcp. He seemed o.k. He actually let me stay in the room except for the, um, manly part of the exam. I dont intend to really go with ds again. He seeed to like the guy, he's pretty young so that is good. The one thing I didnt like is that, not him, but the whole hospital system there uses this computer system that only 10% of hospitals in the us use. It seems you are so busy using the keyboard for charting etc. you cut down on patient time. He did order blood tests for ds which will include thyroid stuff, I though that was good of him, I didnt ask for it either. He said he was doing it because of my cancer. So ds and I were both laughing because we were following the dr. on the highway. He has a nice black mercedes next to my luxury 92 van. Well when ds told him he went to the university and he asked what his major was and ds said he didnt know - the dr,. replied - pick the thing that makes you the most money, hmm, guess he figured that out right.

Sha and Linda - I really hope my dh can do the vac,. The dr,. even complimented dh on what a good job he was doing with the wound care already. Sorry, no offense, but as I said before there is no way I am letting some visiting nurse etc. touch me. And guess what, I used to work for the visiting nurses in the office before I moved here. I just am sick and tired of people touching me etc. etc. I was tested for MRSA but that was in Jan. when I was in the ICU. Negative of course. I dont know what he might be looking for. He said the cipro will only clean/clear up the local infection? He thinks its now into/on the graft,. He also said the vac changes would be about every 4 days?

Ann - your fishing trip sounds fun and it would be really relaxing to me.

Candy - Never heard that about a massage. My dh always gives me a backrub every night.

Laurie - In honor of you, my new surgical bingo number is J3. As in July 3. The surgical pre testing. BINGO! Now I already know what my prize is going to be. Not money but A lovely 3 day all expenses paid trip to Chez Hospital, gourmet meals daily, free amenities like iv's, wound bandages, pills, what more could a girl ask for!!

GTAGWTA, Blessings to you all.

 

[snappy]

Laurie - In honor of you, my new surgical bingo number is J3. As in July 3. The surgical pre testing. BINGO! Now I already know what my prize is going to be. Not money but A lovely 3 day all expenses paid trip to Chez Hospital, gourmet meals daily, free amenities like iv's, wound bandages, pills, what more could a girl ask for!!

GTAGWTA, Blessings to you all.

With all you are going through, what an extraordinary sense of humor you have!! Quelle joy de vivre!!!

I will never think of bingo in the same way!!!

You tickled my funny bone.

 

[luvmarypoppins]

Good afternoon ladies

Alice - How are things going? Know your surgery is soon, even before mine too. Thinking of you sista, and will be praying too.

Cindy - Have a great time on your upcoming trip

Sha and Barbara - hmm, this brings new meaning to the word "pudding". I think I will stick to Swiss Miss or Jello brands, Though from living in Texas my favorite is banana.

Its going to be one of THOSE days!!

Yes, after dh kept me up most of the night snoring, I wake him up for work and fell back asleep. He not only didnt take his cell phone, then he was reminded by me that he FORGOT to change my bandage. O.K. I did it myself. So far so good. Its storming like crazy out but now just dark and damp and then ds3 boss calls and asks why are you not at work? The computer system messed up his schedule. We throw lunch together and I drive him to work. Then I just get an e mail that Alyssas story will not be on tv with Katie Couric tonight. Her mom said it is delayed. Hopefully it will be on next week? Darn you Katie Couric. I would rather hear her say something about Farrah instead of Michael etc.

I heard Farrahs dr. say something like...(and its not the actual quote), You should fight for what you believe in, even though you arent winning. I like this dr! Well if you know the exact quote, correct me o.k. I would like to know it.

This week end I will be looking for the sun. There is no way I am going to see the movie My Sisters Keeper. With my own cancer and then losing my only sibling sister, it would be too much. Maybe rent it sometime. Anyone actually going to see it? Hopefully I won't have to listen to "Angie" again at church.

GTAGWTA. Have a great week end. Blessings to you all.

 

[Sha]

LMP I dont blame you to not want anyone else to touch you more than those who have to already. But you may need them to teach for this wound care. The other thing is if its KCI, they want to have it measured to see what kind of response is happening.

I am not sure if I will go this weekend or not, as I am also on call, but I do want to see "My Sister's Keeper". May go alone for this one though.

 

[honugirl]

GAGWTA everyone!

I got home yesterday from the beach, but didn't really have the energy to post much. I'm really exhausted. Didn't do much today except watch TV so I'm on Michael Jackson overload. Honestly, if I ever hear his name again, it'll be too soon. I'd rather hear about Farrah. Anyway. We had a good time. We saw lots of whale spouts, which is pretty neat. Got some nice agates which we got up at the crack of dawn to hunt down (pretty rocks for those who aren't familiar with them). Saw a bald eagle in a tree while I was at the beach. Ate enough fish that I swear I'm growing gills...

Tomorrow night I've got a phone appointment with my endocrinologist to go over my test results. I was supposed to have it tonight, but he canceled it and rescheduled. I guess my case is now becoming complicated, so he wanted an extra day to go over the labs and stuff. I hate these appointments 'cause you never really know where you are. There's no cut and dry answers. I always feel like I'm falling off a cliff and hoping there's someone at the bottom to catch me.

We can pretty much deduce I'm not cured from the first surgery based on symptoms and stuff. I have a few labs to corroborate that too, but I'm not sure it'll be enough biochemical evidence yet (I swear this is the only disease I know of where one test is never enough, they always want 5 or 6 or more, and generally more than one type. For example: blood and saliva, blood and urine or any other combination of the 3).

MRI doesn't show a tumor on the pit gland currently which means it's either spread throughout the whole thing or it's buried somewhere inside. I could do another pit surgery, but with nothing to pinpoint, my surgeon doesn't seem to think that's a great option. What drugs I could take are not a viable long term solution and don't fix the problem. Radiation isn't an option 'cause it kills the pit gland leaving me to do full hormone replacement for the rest of my life. So realistically, the only option is to remove the adrenal glands, which isn't a great choice either. I risk losing everything I love 'cause it could be too dangerous to do.

I really wish the appointment had been today 'cause my body can't take the stress of waiting.

 

[luvmarypoppins]

Good early morning ladies.

Honugirl - welcome back! Sounds like you had a great trip. Wow, whales! My whloe family would love to see them. Sending you a and hoping your phone consult will go well.

Well ladies, Have I got a story for you, Hmm, remember my post yest. that this was going to be one of THOSE days, well it sure ended up being one, long after I posted. DS 17 called me from the pool and said, mom I had to save someones life. Its a long and unfortunately sad story. All I can say is thank heavens he was at a 2 person pool. His partner, lst day on the job girl, had the outside shift. He was inside the clubhouse checking id's etc. Well 2 little kids came running in and said, Nancy, the lifeguard needed help. He ran out and found out an approx. 80 yo guy dived in the pool and came out and collapsed sideways off the chair. DS did the cpr with her. He said he broke the guys ribs and when he called 911 they kept wanting to talk and he said, look I cant talk anymore, I have to go do the CPR. Well then the relative starts throwing all the lawn chairs all over the place, ds, says, calm down sir etc. The wife is btgging and pleading with him to keep doing the cpr to the emts arrive etc. The emts arrive and tell ds what a great job he did etc. Ds knows this family from last year. I think this guy is the father of someone. The son dared him to jump into the pool. Later ds says he hears the lady tell the emts that the guy had open heart surgery and a pacemaker? Sadly ds work called and said the guy passed away in the ambulance. He had 4 bosses callk him up, gave him the day off today, asked if he wanted a counselor etc. He said to us, he keeps remembering the guys eyes, like he could tell he was ging to die (my ds could tell). I joked with ds and said, hmm, think you'll get lifeguard of the month? I could tell its getting to him, like post traumatic stress etc. , but we are so proud of him. I am sure he will be ok. Hmm, he's so much like me. I told him on the phone I would pray for the guy and he said mom, I am praying for the guy etc. Son after my own heart.

GTAGWTA, Have a great day ladies!!. Bless you all.

 

[Sha]

LMP your son sounds like a winner with the CPR... I am surprised someone else didnt step up to calm the family. That had to be distracting for him too. I havent done CPR on anyone... not really ever wanting too.. but I am told broken ribs are expected. I have never met him and am proud of him. I still remember the motorcycle accident that I came across... that scene will never leave me, but the stress/trauma of it did lessen in a couple days. I didnt talk to anyone in particular... but my sister (she was a SICU RN then) and coworkers. I hope it eases for him.. and I was saying a couple little prayers too when I was at the scene. This was where I definitely learned I didnt want to be a ED RN... I do not like the adrenaline rush and the crash feeling after!

Honogirl that sounds cool seeing the whales and the eagle... I hope your call gives you some news that is encouraging... prayers included

its amazing how the littlest things can spark a memory of someone or something... the eagle reminded me of a patient. There hasnt been much coverage at all about Farrah... and I am wanting to find things where there isnt much or any coverage. I liked his music (after I got away from HS when Thriller came out. I did that with Duran Duran too though)

Candy I havent heard back from my massage therapist yet. I thought she was back this week because my mom saw her for her lymphedema massage on Tues. I hope to get an answer for you soon.

Am still not focusing well.... I hope you are all having the best day you can possibly have. Hugs and prayers for you all! Not thrilled to hear there is a little disturbance in the southern gulf that they are watching... blah.

 

[Aliceacc]

LMP: your son gave that man the chance to say goodbye to his family. That time by the pool, the time in the ambulance, I'm sure they kept telling him how much they loved him, and I'm betting his son apologized for the dare.

They'll cherish that forever. He gave the family a tremendous gift!

 

[Notatourist]

LMP-your son is still a hero, he was alive for the ambulance, never let him forget that..

Anyone have any suggestions for when an abdominal scar is healing how to make it stop hurting...it's killing me!

honugirl-keep fighting. You're going through so much. I hope your mom can realize that you don't want to use the handicap placcard, you HAVE to, it's past the point where you can be comfortable. I had to realize that with my temp one. I still get dirty looks though, but I have the advantage of a bald head due to chemo.

have a great saturday ladies...

 

[snappy]

LMP-your son is still a hero, he was alive for the ambulance, never let him forget that..

Anyone have any suggestions for when an abdominal scar is healing how to make it stop hurting...it's killing me!

honugirl-keep fighting. You're going through so much. I hope your mom can realize that you don't want to use the handicap placcard, you HAVE to, it's past the point where you can be comfortable. I had to realize that with my temp one. I still get dirty looks though, but I have the advantage of a bald head due to chemo.

have a great saturday ladies...

For my side to side abdominal scar for my free tram reconstruction, my instructions were to rub lightly AROUND the scar until it closed to desensitize the scar. You can do it in the shower with a wet wash rag or your fingers. When it closes you can apply more pressure. Then you can actually move the scar around which is good because that motion should prevent the scar from "sticking."

I think I have a pamplet from the hospital that spells it out I am sure more clearly, I will try and unearth it.

One thing that I was give to help with the pain was a huge stretchy binder. I thought it was incredibly tight and uncomfortable. One day a couple weeks post surgery I went out without it. BIG mistake. What was actually tight and uncomfortable was my stomach where the muscle repair had been done and the skin stretched so taught. The binder gave huge support and I put that sucker back on. It was so tight by the way that after I put it on I had red marks all over. It did work though.

Were you prescribed one?

LMP, what an experience for your son, I am sure a life changing one. You done a fine job raising him, mom.

 

[Notatourist]

No binder snappy and a vertical scar...ugh.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!!

Maryann, what an amazing son you have! I am sorry he had to face a situation like that. I hope he is doing OK.

Many hugs and good wishes all around!!

 

[luvmarypoppins]

Good afternoon ladies

Guess what I found? - The sun!! Yippee!!

Yest. dh and I went out and we saw a rainbow. Very nice.

Ds told us he was up from 2-5 am friday night thinking about cpr? Then yest. he went to 3 graduation parties so that was good to get his mind off of it. The one boss called yest. and spoke to dh and asked how ds was again. He is scheduled to go back to work on tues. Now today ds21 shouts out at him and says, you killed a guy etc. Of course we gave it to him. He is always the jealous one, the alpha male of the family etc. Gheesh, when will this one ever get mature? I think he has Peter Pan Syndrome in some ways and in others he works like 2 jobs sometimes and goes to college full time too etc.

My stomach hurts. I dont know why. I hope it holds out until the surgery, if not I will call the surgeon or head to the er. Of course I am freaking out thinking about the wound vac machine. I will be glad when they finally get that thing off of me and then dh and I were talking about the next surgery which should be no later than Jan. 10th, we are both thinking it will be sooner, Today the one girl asked me about decorating the room for vbs at church. I will call or send her an e mail. I dont kow what her ideas are.

Found out today another girl from church has breast cancer. So sad. This girl visited me in the hosp. while her daughter was there. I was sleeping. We also hugged and cried when I saw her at the pre op place, she was there taking her daughter for her tests too, as that is when they thought I had the really bad kind of cancer. Such a sweet girl. I will send her a card. I wish I could do more but right now I cant.

Notatourist - I have a small vertical scar under the belly button, that was stapled together. I second Snappy (Laurie) about the binder. I have one but I am not using it right now but it was great. I got mine in the hospital. Who knows what my guts will look like this time after Edward Scissorhands, um, I mean Dr. M. gets a hold of me!

GTAGWTA, Blessings to you all. Have a great day.

 

[honugirl]

honugirl-keep fighting. You're going through so much. I hope your mom can realize that you don't want to use the handicap placcard, you HAVE to, it's past the point where you can be comfortable. I had to realize that with my temp one. I still get dirty looks though, but I have the advantage of a bald head due to chemo.

have a great saturday ladies...

GAGWTA everyone!

Thanks Notatourist! You're right about the handicap placard. It makes me want to go do things 'cause I know it's easier on me. So hard to get motivated otherwise. I still get dirty looks from people, they should be counting their blessings that they don't need one.

So I talked to my endo yesterday. I started ketoconizole today. It's a drug that is used to lower cortisol levels. It's only a stop gap measure. I'll be on it for around 2-3 months. I guess it's really hard on the liver, so I can't be on it much longer than that. My endo basically wants to see how I do on it. If I do better, then we know I need to have my adrenal glands out, which will probably be done in September. The keto will mimic the effects of a BLA (bilateral adrenalectomy). The other "good" thing about keto, if you can call it that, is that it will make pit tumors grow, so if there's anything else residing in the gland, we might be able to see it in 2 months. So they're going to do a repeat MRI before we make a final decision on which surgery to have. Complicated, I know.

I'm exhausted. But my mom and I are going to see the play "Rent" tonight, so that should be fun.