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SassyLady
08-18-2010, 01:32 AM
Would love to have postive energy and prayers sent my way to help my 45 year old sister get better. She had a heart attack on Monday...she has had breast cancer since she was 38 ... mastectomy and Herceptin (she has the Hurst II gene - which means the cancer is aggressive).....the Herceptin has weakened and scarred her heart.

The cancer was in control until she became immune to the herceptin. They took her off 3 weeks ago so she would get ready for a new clinical trial. When she went in on Mon to get the dye injected so they could do the contrast scans........everything shut down and she had a heart attack.

I drove 7 hours to get here and have been with her since 10:00 Mon night. She has a cardiologist, cancer doctor, kidney docter, internist, pain management and her admitting doctor. They change shifts every 12 hours so I have to reintroduce myself as the one making the medical decisions and keep track of wht they are doing. She's had EKG, echocardios, xrays, and so on and so on.

the good thing is that the hospial has a program called HELP which is that they encourage patients to have an advoate, someone who will ask questions and they encourage asking what is being done and what is being given...etc. They have taken good care of her.

We will find out tomorrow if her heart and kidneys are going to get good enought to do an angiogram/plasty???

So, I'll be in and out when I can but pleae send me anything positive you can....cause I'm exhausted and have run out of "thank yous".

Take care,
MKP

LiberalNation
08-18-2010, 01:54 AM
Prayers for you and your sister. I hope she recovers.

Sitarro
08-18-2010, 02:35 AM
You are in my thoughts and prayers, for both of you to stay strong and a guiding hand to the doctors........ stay positive.

KarlMarx
08-18-2010, 04:40 AM
I pray that your sister recovers and that the good Lord will give you the strength to be there for her.

KM

darin
08-18-2010, 05:17 AM
So Sorry MKP...Keep us posted, and holler if you need anything.

HogTrash
08-18-2010, 05:55 AM
I was diagnosed with coronary artery desease about 8 years ago and along with a few adjustments to my lifestyle and the marvels of modern science and medicine, I've done pretty good.

I was contacted by the VA about a month ago informing me that CAD may be added to the list of deseases caused by exposure to 'agent orange' in Vietnam, although I suspect mine is hereditary.

Although old and warn, my heart is there with you...

Kathianne
08-18-2010, 08:44 AM
Your sister has my prayers, so do you.

jimnyc
08-18-2010, 08:48 AM
Will be thinking of you and your sister, MKP.

Jeff
08-18-2010, 11:18 AM
Y'all will be in my thoughts and prayers

SassyLady
08-18-2010, 01:30 PM
First I want to thank everyone for your kind thoughts and words. They really do help.....it's been hard, very hard watching my little sis suffer. She is sleeping comfortably for now so will give an update.

Yesterday we filled out the Advanced Directive and she named me as her agent to make the decisions.....so we had to discuss what might happen, or will happen, and what we are going to do.

One of the things is whether to donate ..... she choose to give everything to cancer research .... and then a question asked about skin tissue .... she has lots of tatoos and thought they wouldn't want that. We talked about the face transplants they are doing and I said ... you have a beautiful face with beautiful skin that might help someone. So, she agreed to donate it for non-profit use for use anywhere in the world.

I have always said take everything from me you an and use where ever and however it can be used but never thought about my "skin" organ.

At any rate, the discussion about donating caused my other sister (her twin) to get emotional .... because of the decision about the funeral. My dying sis wants to be cremated and her twin wants an open casket.......for closure. This discussion was all done very lovingly but it has not been resolved yet. However, my sister is donating everything.

Today I come in to find out that they didn't give her the pain meds or heart meds at her normal time because her blood pressure was too low. That decision was made two hours before I talked to the nurse. I asked her when she would be taking blood pressure again .... "oh, not for 6-8 hours...we are only scheduled to take twice a day". Needless to say MYYY blood pressure skyrocketed.

I said .... perhaps you don't understand that she is dying of cancer ... even though you are currently treating her for heart attack and kidney failure. She has been on pain management for seven years and if you stop her pain meds she will go through withdrawal. She said, we nurses have "parameters" that we have to follow. I said, if her blood pressure is good then you can give her the pain meds. She said I don't want to argue the point, but I have parameters. I said, I will give you 15 min to resolve this before I have her doctor paged.

She left, the head nurse came in, they took her blood pressure and it was fine and they gave her the meds. The head nurse said .... we have parameters that the case nurse was following .... I said I totally understand, but they are just parameters and it's OK to think and step outside the box when needed. But to tell me that you can't take her blood pressure for 6-8 hours because that is the protocol.....is just the wrong tactic to take with me.

So, her kidneys are functioning again (she had to take some really nasty, vile stuff ... mucomist I think) and when her heart is a little stronger they want to do an angioplast.

And, her cancer doctor is watching her closely because he knows that if these issues are not resolved quickly then she will not respond to anything he can give her for the cancer.

We asked him how long she has if....she doesn't get the cancer meds. But they keep telling us that we are focused on the heart .... one thing at a time.

And, the cancer doc and the cardio doc are at loggerheads about treatment. So, us mortals sit and wait for the gods to finish their tantrums so we know what the next step is.

Gotta go....

Thanks again for the positive energy everyone.

Palin Rider
08-18-2010, 02:35 PM
I know how painful it is to lose a family member before their time.

Carry out her wishes as best you can, and keep the good memories of her close to your own heart.

SassyLady
08-19-2010, 12:52 AM
They are going to do an agiogram tomorrow morning and see what is causing the blockage ...and will do an angioplast or stent .... and see if they can get heart strong enough for her to take the cancer protocol they wanted her to start soon.

I'm just dumbfounded to find out that the cancer center overdosed her on the dye the injected ... it causes renal failure.

At any rate....I'll let everyone know how the prodcedure goes.

Nite all! Thanks again for all the kind words!

Abbey Marie
08-19-2010, 02:46 PM
You did an awesome job with the pain meds/BP issue. Your sister is lucky to have you as her advocate. Parameters my ***!

I will pray for your sister and you today and until you let us know things are all better.

Love to you!

Abbey

darin
08-19-2010, 03:19 PM
Where do I sign up to get MKP to advocate for ME when I fall ill? :)
:salute:

SassyLady
08-19-2010, 04:27 PM
Did angiogram....no blockages...so no stents or plasts. However, her heart is very weak due to the chemo and years of alcohol abuse. She did have a mild heart attack, might have had a clot but she's been on blood thinners since she was admitted so they were never able to definitively see anything.

The cancer doc said this morning that there are no trials to get her into from this point.....and her heart is so weak he's not sure when he can start her on anything else. Her cancer is very aggressive and even though she has survived this, she knows that things are bad.

We did change her pain meds to fentenol (sp?) from morphine so that we have better "parameters" to work with. She is doing much better on that ...

They still haven't told us if/when she will go home. Even if her heart gets strong enough for the new chemo they want to start her on, her cancer doc wants her here when he starts it just in case she has a reaction.

At any rate, I am sitting in her room watching her sleep and trying to keep all the family and "drama" from creeping in......

Kathianne
08-19-2010, 06:23 PM
Mrs. KP, my prayers remain with you all. I don't know what else to say, you are doing all you can. You are a very strong woman, someone we'd all like to have in our corner.

SassyLady
08-19-2010, 08:55 PM
Where do I sign up to get MKP to advocate for ME when I fall ill? :)
:salute:

As long as I have food (not hospital cafeteria) and water, I'll advocate for you!!! :thumb:

SassyLady
08-22-2010, 01:12 AM
Update --- endoscopy was clean. The GI doc wants an ENT to look at her throat and a pulmonary specialist to also look at her....they still have not determined why she was vomiting so much blood that they had to give her two bags of blood.

She is tired and has been told her heart needs rest and right now most of her stress is from doctors having a pissing contest ..... and they don't know that I worked for a large medical clinic and know what goes on behind the scenes and when I question them on what is going and don't let them bambozzle me into just nodding my head "yes, mr god...your word is law".

Her on-call doc said she could go home this morning .... I said, "really, cause the GI doc said she wasn't going anywhere until it was determined what caused the bleeding and wants her to see ENT. On-call doc said .... well, if he wants her to see an ENT then he can get in here and make it happen, I wash my hands of the whole thing!!!" I said, "excuse me, are you telling me that you are the primary physician on this and you are not willing to make this happen so we can determine what caused her to lose so much blood that she had to have a blood transfusion?!!?? I called administration and had someone come to the room so I could find out what the hell was going on.

She took down all the info and said she would track it down and let me know what was going on. Seems there is a group of doctors that are the "on call" docs and they can't seem to get their act together.....we sat there all day waiting for a doctor to come see her.

I told the admin/head nurse that I wanted a copy of her entire chart and that we would be checking out on Sunday and if anything should happen as a result of them not completing what was ordered in a timely fashion they the hospital and the doctors would be held responsible.

I'll let you know what happens tomorrow. I've already found out that a blood transfusion was ordered at 4:35 on monday while she was in ER and she didn't get it until over 14 hours later ... after she got to ICU.

There has been so much behind the scenes stress ..... we've had pretty good nurses since I told them that they needed to look behind the main reason she was in the hospital and treat the whole problem ... not just the heart and kidneys....that they needed to see her as a patient who is in Stage IV metastized breast cancer that is in the lungs, clavicle, neck and possibly bones.

Anyway, hopefully I'll be taking her home with me for a week. Everyone down here thinks I'm taking her home to my place to die. I had to tell them I'm bringing her back in 10 days for follow ups with the docs......never saw so many people with soooo much drama. She belongs to an AA group that almost descended on the hospital ..... had to put up orders for NO VISITORS, unplug the room phone, turn off her phone and ask anyone who came to visit to turn theirs off.

I'm such a quiet, private person that this is pushing me way out of my comfort zone. Some of these people are using drugs and I point blank told them.....if you are using ...get the hell out of this room, we don't need that stress in our life right now.....one of them was my niece, her daughter.

They are pissy because big sis descends and takes control .... and I told them if they got their act together to the point where anyone would take them seriously, then maybe they could step up and take care of their mom, but until then, get the hell out of my way .... I'm not going to let her die because someone is incompetent or strung out.

Anyway, I'm really tired and hope to make that seven hour drive home tomorrow without putting her under undue stress. Once I get her home she will have one whole wing of the house to herself and loads of peace and quiet.

Thanks for all the support and positive energy.....it has really helped.

SassyLady
08-24-2010, 04:07 AM
Monday night update:

We are home. Drove home on Sunday .... long, stressful drive. They took her off all the iv meds Sun AM. Had to go to drug store close to hospital on Sunday ... had to wait an hour. She has patch that puts pain drug right into her system .... she couldn't walk in the pharmacy so had to find a drive through. Waited an hour and then they tell me one of the meds is in a box and won't fit in the tube and I had to go in and get it. It's 104 degrees outside and we had already been sitting in the car for an hour ... anyway, we got home around 7:30 PM and got her inside and she wants to take a shower. She can't stand up so I have to help her shower. She can't bathe because of the wound from the angiogram. I am not a good caregiver .... I'll fight for you, but I am too empathic to be around sick people all the time.

She has so many meds and they have to be taken at different times....I can't see how anyone can keep track of everything....I had to make a chart. And they substituted a couple of meds and it's confusing when the orders sent home don't correspond with the meds the pharmacy gives out.

And, they didn't give us any nausea meds so she's been vomiting and can't keep any liquid or food down. Had to call and get prescription for nausea....and they only gave me enough for 1.5 days. She thinks the nausea is the pain patch so she pulled it off.

I'm afraid to sleep. I can't sleep unless I take an ambien and if I take one then I'm not functional if she needs me. I am so tired.

I want to get my sis in to see my massage therapist and go get a mani/pedicure....but she is so drained that she just wants to sleep..and she is worried sick about starting a new round of chemo next week. I don't know if the cancer doc is going to put her on anything. She missed the clinical trial and he said it's running rampant in her system and anything he puts her on will just further tax her heart.

I think she will die of complications before the cancer .....


On another note... Mr. P - Got home and it was finally hot enough to ripen one of my little cherry tomatoes. I ate it this morning and it was soooooooooo good. All the 5 gallon plants I bought the day before I had to go to the hospital are going crazy. I haven't even got them in their pots ... had them sitting next to trellis and they are climbing ... maybe I can find time to get one of them potted tomorrow.

Coming here helps take my mind off of all this....

HogTrash
08-24-2010, 09:25 AM
I think the Princess has the hottest avatars in cyberspace.

[keepem commin] :o

Mr. P
08-24-2010, 01:19 PM
....


On another note... Mr. P - Got home and it was finally hot enough to ripen one of my little cherry tomatoes. I ate it this morning and it was soooooooooo good. All the 5 gallon plants I bought the day before I had to go to the hospital are going crazy. I haven't even got them in their pots ... had them sitting next to trellis and they are climbing ... maybe I can find time to get one of them potted tomorrow.

Coming here helps take my mind off of all this....
Pot two. Time for you. :2up:

SassyLady
08-25-2010, 02:23 AM
Pot two. Time for you. :2up:

Hey .... today was a good day!!!! She quit throwing up around 10:30 last night .... she took off the phentanol patch around 6:00 PM yesterday. She is able to keep her heart meds down now. She was able to eat and drink something today. However, now she is withdrawing from the patch and her cancer pain is coming on with a vengence. She has vicodin and we are going to try her on some of that tomorrow.

Mr. P ..... It was 107 degrees here today and I actually got four of those big 5 galloners potted!! Yay! :coffee: I might have got more potted but it was too hot to be outside for very long, plus my rescued boxer, Lilah, decided to dig up half of the flowers I planted last week! I think God is really trying to see just how far I'll bend before I break. However, can't tell you how much better I feel already. I think I have seven more of those 5 gallon pots, and six black eyed susans and eight lantanas to get planted. You should see all the bees ... little ones and big black ones, butterflies, hummingbirds, hornets and wasps!!! And a little garter snake showed up today for a visit.

SassyLady
08-25-2010, 02:29 AM
I think the Princess has the hottest avatars in cyberspace.

[keepem commin] :o

I know this is your favorite so I'll use it for awhile just for you! :laugh2:

Mr. P
08-28-2010, 11:05 PM
So, how's it goin out there, Mk princess??

SassyLady
08-29-2010, 01:00 AM
Thanks for asking Mr. P..... the prayers and positive thoughts are helping.

She's eating and keeping everything down now that we have her off the phentanol patch. We go outside and sit in the sun every day to get her outside to enjoy the fresh air. The tumor in her lung is causing quite a bit of chest pain which scares us a bit ... she's on three different heart meds. She doesn't want to take pain pills because she needs to keep the heart meds down.

She has a great attitude and is a fighter and will fight to the bitter end. I'm taking her back home on Monday. On Tuesday we will see heart doctor in AM and her cancer doctor and pain management doctor in the afternoon. Based on what the cancer doc tells us will determine what happens next. He wanted to get her started on something this week but her insurance won't pay for it....so we will find out on Tuesday what his next plan is. There are a lot of people in her hometown who are organizing a fundraiser to help pay for the meds if he still feels it is viable.

When I'm around her or the family I am fine .... but when my friends ask me how things are going, and she isn't around I do have my little melt downs.....are family are fighters and we don't quite know how to handle kindness and caring....

So.....I've had some tomatoes and jalapenos from the garden!!! Had two days over 100 degrees here so things are starting to ripen. Used the jalepeno in potato soup and the cherry tomatoes never made it inside ... ate them right out there in the garden!!

Have a good night Mr. P

PS - got everything planted except three lantanas (ran out of pots) and I ended going out and buying more pots and another plant to pot!!! Can't seem to get even!

Kathianne
08-29-2010, 07:56 AM
Mrs. KP, keep on fighting and know that those who admire you don't care about the meltdowns, in fact sometimes the meltdowns are what's needed to move ahead.

You're in my prayers, as is your family.

SassyLady
08-30-2010, 01:23 AM
We took her to the ocean today ... out the Russian River to Duncan's Mills and Jenner, then on down to Bodega Bay. She was able to get out and take a short walk to Salmon Beach and sit in the sand ... she did put her toes in the water ... that was something on her bucket list.

It made her very tired and went we got home she had to go right to bed. She is having hard time pulling herself back ... she's on three pills for heart and she needs to take it easy ... she won't have the energy she used to have.

It hit her hard today that she probably won't make it through this round of chemo ... she misses her kids, grandkids and her dog, Annabell...knows it would be best for her to stay here for less stress, but can't live without the love and support system she has down there.

So, we are off to see all the wizards that are supposed to know what the hell they are doing ... heart, kidneys, gastro, oncology, pulmonary, etc.

All her AA friends are so happy she is coming back ... they are trying to pull together some fundraisers to help pay for the chemo. Guess she couldn't get into the clinical trial due to being in the hospital, but her doc is going to put her on same meds I think.....it just means that we will have to pay for the meds out of pocket ... trial won't pay, insurance won't pay.....but we'll get it done somehow. Carwashes, bakesales, etc.

I didn't know how much I relied on you guys to keep my spirits up ... it's so nice to come in and see someone has left an uplifting message.

I'll talk to you guys tomorrow or Tues after we see what docs have to say!

Take care,
:2up:

revelarts
08-30-2010, 06:38 AM
Princess,
God's peace on you and family.
May he grant you a special blessing of wisdom and strength.

HogTrash
08-30-2010, 11:23 AM
I know this is your favorite so I'll use it for awhile just for you! :laugh2:Candy for my tired ole eyes.

I'm still puttin in requests to the Big Guy to watch over you and yours.

SassyLady
09-01-2010, 11:58 PM
Well....I now know what type of chemo my sis will be taking. She missed the clinical trial she was trying to get into .... it started while she was in the hospital.

She will be taking Xeloda and Tykerb. The Xeloda will be taken for two weeks with one week off and the Tykerb will be taken every day...they are to be taken for the rest of her life (which they are predicting will be less than six months) or until it no longer shows effectiveness.

The Xeloda is almost $2500.00 for a two week prescription....that's $5,000/month just for the one med. We haven't got the second one filled yet (has to come from a specialty pharmacy) and have no idea what it will cost. Her insurance paid for the first two weeks of the Xeloda but we haven't got a final ruling on how long they will pay for it. We also don't know if they will approve the Tykerb.

However, a friend knows the local chapter president of the American Cancer Society and they are going to contact my sis and help make sure her meds are paid for somehow, someway.

Her heart doctor said that the cancer center records showed her heart at a 60% effectiveness in June and right now it is at 20%. The heart meds are to build up and strengthen her heart but after reading the side effects of the chemo meds .... they will probably cause even more damage.

I do believe your thoughts and prayers are helping .... if not my sis, they are definitely helping me get through this and I do soppp appreciate all of the messages and support.

Thanks and take care everyone.

Kathianne
09-02-2010, 10:26 AM
Mrs KP, you and your family will remain in my prayers. I hope between her friends willing to fundraise and ACS the financials will be taken care. I wish I was working, I'd be very happy to send a contribution.

SassyLady
09-02-2010, 12:59 PM
Mrs KP, you and your family will remain in my prayers. I hope between her friends willing to fundraise and ACS the financials will be taken care. I wish I was working, I'd be very happy to send a contribution.

Thank you for wanting to help Kath...her friends in her hometown are putting together some fundraisers to help. If her insurance covers her meds the monies raised will be given to the local cancer society to help others.

Anyone wanting to make contribution, please give to one of your local chapters to help someone in your area that might be going through this.

Thanks again!

chloe
09-13-2010, 03:57 PM
Hope your sister is doing better:salute:

SassyLady
11-26-2010, 05:19 AM
Update:

Sister had a check up .... her heart is doing better and they've cut back on her meds.

Her cancer has slowed and the side effects of the chemo are tolerable.

Her oldest daughter gave her a new grandchild last month so she's got something to keep her spirits up.

Our biggest challenge now is with the insurance .... they don't want to pay for the medication ... which is ungodly expensive.

I want to thank everyone again for all the support and prayers.

Kathianne
11-26-2010, 08:24 AM
Update:

Sister had a check up .... her heart is doing better and they've cut back on her meds.

Her cancer has slowed and the side effects of the chemo are tolerable.

Her oldest daughter gave her a new grandchild last month so she's got something to keep her spirits up.

Our biggest challenge now is with the insurance .... they don't want to pay for the medication ... which is ungodly expensive.

I want to thank everyone again for all the support and prayers.

Very good news, thank you. The prayers will continue!

namvet
11-27-2010, 10:28 AM
Update:

Sister had a check up .... her heart is doing better and they've cut back on her meds.

Her cancer has slowed and the side effects of the chemo are tolerable.

Her oldest daughter gave her a new grandchild last month so she's got something to keep her spirits up.

Our biggest challenge now is with the insurance .... they don't want to pay for the medication ... which is ungodly expensive.

I want to thank everyone again for all the support and prayers.

I know how you feel. last sunday my mom had a stroke. when my sister called i thought it was the big one and she was done for. turns out it was a small one. the MRI showed she's had a series of these. wed we moved her to a nuring home. she can't talk and her right arm is paralyzed. she'll start therapy we think this coming monday. she 85 and been independent her whole life.

SassyLady
11-27-2010, 01:47 PM
I know how you feel. last sunday my mom had a stroke. when my sister called i thought it was the big one and she was done for. turns out it was a small one. the MRI showed she's had a series of these. wed we moved her to a nuring home. she can't talk and her right arm is paralyzed. she'll start therapy we think this coming monday. she 85 and been independent her whole life.

I'll be thinking and praying for her, you and your family NV .... to ease her pain and to hope she'll be comfortable, loved and recognize you.

Take care,
MKP

NightTrain
11-27-2010, 02:00 PM
Wow, I missed this until now.

Keep your chin up, MKP... I know from experience it's damned hard but being there for her is the most important thing.

Jeff
12-01-2010, 12:18 PM
MKP and NV I will keep y'all and your families in my prayers, I hope your loved ones will recover 100%

Kathianne
12-01-2010, 05:04 PM
I know how you feel. last sunday my mom had a stroke. when my sister called i thought it was the big one and she was done for. turns out it was a small one. the MRI showed she's had a series of these. wed we moved her to a nuring home. she can't talk and her right arm is paralyzed. she'll start therapy we think this coming monday. she 85 and been independent her whole life.

I'm so sorry, I missed this. Those little strokes, (TIA's) usually don't cause much damage, at least that's what we found with my mom. She had 2 larger ones though, that caused language retrieval problems and for awhile, some paralysis. Rehab did a lot! She's in my prayers.