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Topic: Any stage 4 care takers , sisters, family support ?

Forum: For Family and Caregivers of Members with STAGE IV Diagnosis — A place where family members, caregivers, loved ones of Members having a Stage IV (metastatic) Diagnosis can talk, exchange and support one another.

Posted on: Aug 27, 2012 03:49AM

Travelingpants2 wrote:

Just wondering.

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Posts 91 - 120 (249 total)

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Oct 16, 2012 10:27AM Jac19 wrote:

Thanks Winnymac, all prayers appreciated.  Years ago I went to LPN school, and during one of our classes we were discussing terminal disease issues.  I remember that the instructor asked if we know who the first societal group was to begin to disengage from the terminal patient.  Of course we all had answers, that were all wrong.  The instructor said that according to studies it was the medical group that was the first to begin to pull away.  I believe we are seeing that in my sister's instance, and I am sure others have seen that also.  The Dr. in Omaha said she couldn't place the brochial stent as it wasn't needed.  The Onc here says Omaha Dr. told him she couldn't place the stent as she was unable to access it due to the size of the tumor.  Onc here wants to start palliative care (only diagnosed 3 months ago, has only taken 1 kind of chemo).  My dear neice asked what that was, and I told her that basically they are going to see that her pillow is fluffed while we watch her die.  To HELL with that!  All of us are watching our loved one's engage in a freaking battle, and they should be allowed to fight as long as they can/want to.  I just want to shout to the world and tell them how damned unfair all of the crap we deal with is.  There are people who are young women who are being ravaged by this damned disease, that ravages their bodies, and then without direct contact ravages the hearts and souls of their loved ones.  Damnit, there I go again.  I need to slow down and paint my soap box.  I am sorry.  I pray everynight for everyone that I have met via this website, I pray for miracles, and I hope each and everyone of you get a miracle regardless of what happens with my Sis. 

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Oct 16, 2012 03:30PM Travelingpants2 wrote:

OH dear Jac.....Frown

TravelingPants ~ aka/ Stephanie ~ Have a safe journey and be loved Dx 11/10/2009, DCIS, 5cm, Stage IV, mets, ER+/PR-, HER2+ Chemotherapy Abraxane, Adriamycin, Cytoxan, Doxil, Xeloda Radiation Therapy External Hormonal Therapy Tamoxifen
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Oct 16, 2012 06:49PM Winnymac wrote:

Jac,

You make a good point, it can be hard to find a good doctor let alone one that deals with terminal illness and still cares, sees individuals, not stats or protocol. My dad died of lung cancer 5 years ago and he wanted any and all treatments available because he wanted to stay with us, he was 77 but it is never enough time. His onc was wonderful and sort of let us call the shots and trust me we had a lot of contact between visits about meds and such. At one point she was on maternity leave and another doctor filled in. My dad had gone to the hospital for tests and this doctor cancelled them and told my dad, he could go home and be on hospice and not have to be in the hospital. Dad did want to come home but he didn't seem to fully understand that message. You are old, with lung cancer, just go home to die. Well he flunked hospice and lived another 1 1/2 years after that, but it sure made an impression on our family. The onc that sent him home was supposed to be the best but we didn't think so. Now 5 years later, my husband has breast cancer and the only good thing is that we have Dr Tiffany again, she has a huge heart and is willing to go as far with us as we want, she doesn't give false hope she but she doesn't take it away either.
Okay, didn't mean to take up so much space!
Take care, I can't believe so much has happened so fast for your sis, it is heartbreaking.
Winnymac

Diagnosis and treatment notes are for my husband with male breast cancer stage IV. Dx 6/15/2012, IDC, 2cm, Stage IV, Grade 2, 5/8 nodes, mets, ER+/PR+, HER2- Surgery 11/05/2012 Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)
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Oct 19, 2012 09:40AM floogendad wrote:

Jac,

 i totally get where you are coming from.  It is one reason my wife (and I fully support her in this) continues to work fulltime.  She has missed (with the exception of the week in March after the seizure) one half day of work.  Yet her boss wants her to think about slowing down and enjoying life.  Her response was I enjoy the ladies I work with not the lady I work for....I love that her filter is off sometimes.  I agree with exhausting all options (as long as the patient is the one saying so) but I will try and find the article from the New Yorker about end of life and the medical profession as it points out that alot of doctors dont understand how to talk about it with their patients so they tend to be abrupt and cold when faced with those decisions.    I am sorry that things appear to be progressing quickly on your end and if there is anyone who will understand where you are at it is us here.  Hopefully things brighten up some for you

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Oct 19, 2012 09:42AM Jac19 wrote:

Saw the new Onc yesterday, and Sis is taking 2 chemo tx's simultaneously today.  I haven't learned what they are yet.  Her SE's will be increased, but considering the alternative Sis decided to go ahead.  Praying intensely that we will see some difference in a few weeks. 

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Oct 19, 2012 12:29PM floogendad wrote:

I will keep your sis in my prayers that the new chemo's work.  How long until the evaluate the effectiveness?

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Oct 19, 2012 12:54PM Jac19 wrote:

Onc didn't really say when he would evaluate to see how it is working, but he said she needed something fast as she was at the crossroads of either getting better quickly or she would continue to spiral down.  How is your wife doing?  I keep her in my prayers, you and kids too.

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Oct 19, 2012 06:48PM floogendad wrote:

Jac,

The only reason I asked is like my wife is on an 8 week cycle to evaluate the chemo's.  She did 8 weeks of Xeloda and there was progression so they switched her to Paclitaxel which seems to be working we are on month four and have a CT to gauge the lung/chest lymph system.  She has an MRI in about a week to gauge the effectiveness of the Whole Brain Radiation.  She uses her energy for work and for the kids events and stuff but she is fatigued quite a bit.  I know it comes from the chemo and is a side effect of the WBRT.  I know at some point we too will reach that critical point and I hope that our Onc's allow us to decide ... 

Bryan

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Oct 25, 2012 09:42AM Jac19 wrote:

Tomorrow is treatment 2 of the carboplatin + gemzar treatment.  Unsure of when they will recheck to see the effectiveness, just know that the amount of fluid we are draining off her chest is decreasing.  We were draining fluid daily but are now going to every other day due to the decrease.  Hopefully this is a good sign.  The combo chemo really makes her tired.  She spent most of the last 4-5 days sleeping.  I keep telling her not to worry about it to just go with it.  Home Health got shook up because she slept through her meds so I go in at 8am and noon to be sure she takes meds/treatments and eats, and then my daughter stops at 2, and my neice does 8 & 10pm.  We have charts for fluid drained and meds given.  Sometimes I think the charts are in charge of life for Sis.    I really try to live in the day and be thankful for each day we have.  It's hard not to let the disease be the focus of everything you do or talk about, but I work at it.  We all need to be able to live, laugh, and love.  Prayers to you all. 

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Oct 31, 2012 06:52PM floogendad wrote:

Jac,

 How did the treatment go?  I hear you on the fatigue.  One thing we used to track meds was a piece of paper on a cabinet.  Not the easiest way to do it but it helped....but you are right it is hard to not let this consume us....I struggle when my wife has her explosions of rage (she tries to keep them from the kids but sometimes they happen) and I have to remind myself that we are on a very bumpy road....hang in there and vent and lean when you need to

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Nov 5, 2012 09:26AM floogendad wrote:

Hope this post finds everyone getting by as best can be given the road we are all on.... Dont know if anyone else is dealing with brain mets but DW had a rough weekend and I am trying to keep her positive and hoping this is just a minor blip but......we all know how the self doubt can creep in anytime there is something out of the ordinary.  Recently they lowered her dosage of weekly paclitaxel to decrease the fatigue she felt two-three days out from the session.  This weekend was the worst I have seen her be wiped out (even when she was stage 1 with cytoxan and taxotere), she even called out of work today...Food is not appetizing to her at all and I can only get about half of an Italian Ice down her....anyone else dealt with WBR and short term/mid-term side effects?  if so can you drop me a line to tell me that this is normal (I know I know every patient reacts differently)...thanks for listening to my rant this chilly Monday morning...

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Nov 5, 2012 10:30AM Jac19 wrote:

Hi Everyone.  First, Floogendad, so sorry to hear of DW.  Did you search the discussion boards/threads, especially the Stage IV ones?  I have found a lot of info there.  Also found a lot of hope.  I feel so bad for you both.  As far as the rage, that may be a good thing for her if she can channel it right.  Maybe she needs one of those things boxers hit.  Something that she can release her anger to that won't hurt her or anyone else.  Sometimes I do what I call a Primal Scream, get in the car with all the windows rolled and and then just scream to the top of my lungs.  I do that a few times and always end up laughing and feeling a lot less angry/stressed. 

Well the cancer roller coaster has been up and operational for us the last few weeks.  Took my DS (not sure if that's the right abbreviation for dear sister, but am going to use it anyway) to get chemo a couple of weeks ago, had to push her in a wheelchair into the office and pull the oxygen tank behind.  DS was so groggy she was falling asleep in the middle of the doctor visit.  When they took her back to the infusion room they talked to me and were concerned the cancer had metastisized to the brain.  Took DS for a scan and no cancer in her brain, but did find evidence of 2 small stokes.  Rechecked our medication set-up and realized we were giving PRN pain meds on a regular basis.  Changed that and she began to wake up, and be cognizant of what was going on around her.  Finished the first 3 week cycle of carboplatin and gemzar and will start the 2nd 3 week cycle this Friday.  DS has been so tired that getting her to eat and drink was quite a task.  She was also dehydrated so had 3 infusions of normal saline. 

Some days it's very hard to live in the day and not what if myself crazy.  I am thankful for another day, I pray for a miracle not only for DS but for all cancer sufferers. 

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Nov 5, 2012 04:57PM floogendad wrote:

Jac,

I have started to peruse the boards but figured (hoped) that someone here had experienced the same thing.  Glad things seem to be looking a bit up on your end..We just finished up our fourth cycle of weekly paclitaxel with a minor stoppage for the whole brain radiation after her Gamma Knife MRI showed too many micrometastses.  

I know that we have some of the best docs in the world here at Yale but it is just frustrating because, and I am sure all can understand this, I want my wife to be the number one priority....

I have been doing a lot of what if's recently especially since we have our two big trips coming up soon....I know she is going to want to do them no matter the toll on her body.  I just worry that she may overdo it.

Thanks for allowing me to vent away...I do appreciate this forum where we all understand the trials that we are going through

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Nov 6, 2012 08:13AM Jac19 wrote:

Well it seems the upward tack on the cancer roller coaster is now going downhill.  I haven't seen my Sis in 3 days, but neice called to tell me she is very short of breath, has an open pressure sore, and break through pain.  She is to start 2nd cycle of chemo this Friday.  I wonder if cancer can have an explosive growth spurt between chemo's? 

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Nov 6, 2012 06:24PM Winnymac wrote:

Floogendad,

My dad had lung cancer with brain mets. There was a period of time during chemo and rads that nothing tasted right to him. He was willing to try but even his old favorites tasted bad. It was so frustrating because we knew he had to eat and get nutrition to fight. I am not sure if this is similar or not but it is the only experience I have had. We did get the onc to give him steroids for a bit which helped with appetite. And then one day he though a mcdonalds burger sounded good and he ate half of one. Hard to tell what made the difference for sure. The eating was a big issue for us off and on.
Jac19,
Sorry your sis keeps having such a hard time, she seems very strong to keep plugging through it all.

My husband had his masectomy yesterday and is recovering really well. It isn't a life saving measure but we are hoping it will be a positive step in giving him more time, but they don't say that either. Just doing the best we can each day.
Prayers to all of you and your families.
Winnymac

Diagnosis and treatment notes are for my husband with male breast cancer stage IV. Dx 6/15/2012, IDC, 2cm, Stage IV, Grade 2, 5/8 nodes, mets, ER+/PR+, HER2- Surgery 11/05/2012 Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)
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Nov 8, 2012 08:37AM Jac19 wrote:

Winnymac, hope your husband has a good recovery.  I know there is no cure for Stage IV, but I found a thread on the Stage IV site with people who have lived with Stage IV for quite a while.  It sounds like the chemo gets the cancer as under control as possible and then the cancer is treated like a chronic health condition (diabetes, asthma, etc.)  so that is what I am using to urge my sister on.  We caregivers walk a slippery slope, we have to be realistic and informed enough to know what may be coming, and at the same time we have to pump up our loved one's so they can keep going.  I know it's tough for them too, to face the diagnosis they have been given, and to have somebody like me telling them not to quit.  Neither role is pleasant.  I still see my sister as a Hero, she is the one that says shes doing good, even when she's had a crappy day.  She is the one who alone is fighting this unseen enemy.  Prayer's to all.    

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Nov 14, 2012 02:55PM Jac19 wrote:

Hi All, hope you are doing well.  Sis started round 2 of carboplatin and gemzar.  I keep checking for signs it is working.  Onc told us he did find a tumor marker in the blood, CA125.  He said Sis's count is over 300.  Googled it and found normal range is 35 and people with a count of 165 or more are about 90% likely to have a malignancy.  So, what I want to know is why isn't this test being done more often?  Especially for people who have had one round with cancer, you would think this would at least be a yearly check.  Onc told Sis she was no better than when he first saw her a month ago, but she was no worse either.  He said she is very fragile, but if she was willing to continue to fight he was willing to continue to treat.  So on with the battle. 

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Nov 15, 2012 09:33PM Winnymac wrote:

Jac19,

I do know that the CA125 marker for my husband can't be used as a guide because his stays in the normal range even with cancer. But I did think it was something they try to check. Husband is recovering great from surgery but we found out his tumor is more aggressive than they thought, so in about three weeks he will be starting 4-6 cycles of chemo. A lot sooner than we had expected. Feels like we try to keep hopeful but each appointment something new is discovered and never on the good side. I know that I am not alone here, would just love to have some good news. Meanwhile we still have each other and have learned to appreciate that a lot. Glad to here your sis didn't get any worse maybe things will start turning around for her. Take care,
Winnymac

Diagnosis and treatment notes are for my husband with male breast cancer stage IV. Dx 6/15/2012, IDC, 2cm, Stage IV, Grade 2, 5/8 nodes, mets, ER+/PR+, HER2- Surgery 11/05/2012 Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)
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Nov 20, 2012 12:11PM Jac19 wrote:

Maybe it's just the area of the country we live in but it doesn't sound like CA 125 is a test that is done.  I am sure there is always a variant to the rule or if it's normal or not.  Sis has about 2-3 bad days and then a surprisingly good day.  She just finished the first 3 week cycle and will start the 2nd the end of this month.  She also has a pleural effusion that we began draining twice a week, then went to every other day, and now it's a daily process.  After the 2nd treatment the fluid drained was less.  So, ever hopeful.  I think I am figuring out she is a triple negative.  She is so looking forward to the trip to Nashville, and I will take her if she is determined to go.  I just hope she is able to enjoy some of it.  Best Wishes to all.  Happy Thanksgiving!

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Nov 20, 2012 09:40PM Winnymac wrote:

Jac19,

I think it is great that your sister has the trip to look forward to. Sometimes a specific goal is easier to work toward. I just keep praying for a stage IV cure, too many folks of all ages being taken from us too soon.

Winnymac

Diagnosis and treatment notes are for my husband with male breast cancer stage IV. Dx 6/15/2012, IDC, 2cm, Stage IV, Grade 2, 5/8 nodes, mets, ER+/PR+, HER2- Surgery 11/05/2012 Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)
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Nov 22, 2012 03:56PM keithw wrote:

Right out of the gate my perfectly healthy and beautiful lady love got dx'd as stage 4. What can you do? I'm just loving her and helping where I can like each day will be the last - making her laugh, making love with her, and holding her. Making each day count, every sunrise together an event. You tell that person a thousand times a day that you love them.

Love of my life DX'd Stage IV MBC Sept 13, 2012 - ER+, PR = "Focally positive for PR (30%,2+)" , HER2-, Met in L3 lumbar (removed), lymph node under left arm involved, left breast source. Radiation of spine, Xgeva, Anastrozole.
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Nov 22, 2012 07:24PM floogendad wrote:

Jac we dont get the CA 125 test we instead get the CA 27-29, unfortunately for DW it is not a reliable indicator...Happy turkey day to you too.  The chemo ups and downs do really blow but once you get the rhythm of it you can work around it...I hope the trip works out....it is therapy in some ways I think to forget about the cancer (even if only for a little bit)...we just got back from a weekend in Vegas and it was nice to see DW not worry about cancer for four whole days....happy turkey day to you all as well

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Nov 27, 2012 05:10PM Travelingpants2 wrote:

Ghasping for air.....

My sister liver IS REALLY MAD ! Lets hope Xeloda/Tykerb will be the new change to put that liver in check...

TravelingPants ~ aka/ Stephanie ~ Have a safe journey and be loved Dx 11/10/2009, DCIS, 5cm, Stage IV, mets, ER+/PR-, HER2+ Chemotherapy Abraxane, Adriamycin, Cytoxan, Doxil, Xeloda Radiation Therapy External Hormonal Therapy Tamoxifen
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Nov 28, 2012 05:31AM CntryAngel824 wrote:

I commented on your other post, but wanted to let you know that I am thinking about you here as well. Much love coming your way for you and your sister.

Just keep swimming. . .

It looks like the hormonals are not going to be an option for my mom. Back to chemo after significant progression in the lungs. . .

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Nov 28, 2012 05:23PM Travelingpants2 wrote:

Oh no CntryAngel8 ......

Just keep swimming gave me a smile...that was funny :) 

Stephanie cannot do hormonals, they did fail her to. Does she have it in the liver to? bone, lung ? lung only?

Breathing is just a figment of my immagination after this bomb was dropped.  Im sick for her, and I just cannot fathom having to tell my kids I might not be here for long. I could not fathom having to look at my friends and family every day and having to take that mental photo because I "dont know when".

These are the things I think of everyday for her and for ALL metastatic girls. I may not directly have it, but I sure as hell feel it just the same knowing and understading what she is going through. We have been through this from the beginning, and NO ONE can say, that I cant understand.

We have been through WAY to much in life, fighting, struggling with a single mom, with NO close relationship with our mom, always dreaming of being "one of those families" that "have it". The ones you see celebrate with the kids together, the holidays, the achievements, and Stephanie worked her ASS off to make it happen, get out of the gheto, the "system" so she can have a house, a car, and provide for her kids.

She worked for 5 years to earn ther degree as an RN to have ripped out from her life, she got to work 1 year. ONE FUCKING year to be told you cant have NOTHING....and NOW your going to die.

I have to stop now, but I DO UNDERSTAND and I AM SO SORRY FOR ALL of the women that go through this, it sucks.

I dont ususally "let go" at all the way I just did, and thats just a tiny bit of how we are feeling...afraid she might read it , we dont discuss it like this...

Keep in touch here with your mom, and know we are here for you k?.

Love,

Shannon

TravelingPants ~ aka/ Stephanie ~ Have a safe journey and be loved Dx 11/10/2009, DCIS, 5cm, Stage IV, mets, ER+/PR-, HER2+ Chemotherapy Abraxane, Adriamycin, Cytoxan, Doxil, Xeloda Radiation Therapy External Hormonal Therapy Tamoxifen
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Nov 30, 2012 09:15AM , edited Nov 30, 2012 09:16AM by Jac19

Hi Everyone, Wow, Travelingpants, you hit the freaking nail on the head!   We have cancelled the trip to Nashville, Sis is way too sick.  She is in the hospital now with possible pneumonia (seems like that isn't the easiest thing to diagnose when you have cancer in the lungs).  Home Health came to visit and her O2 sats were 76% on 3 1/2 lpm.  Not sure why.  We live 50 miles from the Onc, so HH called primary care physician who said "Well she's actively seeking treatment there so maybe she should go to the ER there".  Did I mention we fired his sorry ass.  It seems like people are really pushing hospice.  My Sis still wants to fight, God Bless her.  If she wants to fight I am there right beside her.  She has quality of life, she enjoys life.  It is not how she would like it to be, but dammit it's her freaking life not theirs.  We love the new Onc, he says if she wants to fight he is going to continue to fight too.  He is looking into have the largest most menacing tumor radiated.  Sis had a scan this last Monday and the tumors are shrinking, just not fast enough.  And for some reason the biggest tumor by her upper bronchial tube has now blocked the bronchial tube so that tumor needs gone.  I get on my knees every night and ask God not only for a cure for my Sis but for all who suffer from Cancer.  I pray that someone will finally find a cure. 

Floogendad, I am so happy you and DW had a good time in Vegas.  Those 4 days will give you and she something to smile about for a long time.

Travelingpants, Your Sis is amazing.  Look what she did and accomplished, then this bastard Cancer creeped in.  I admire her for making her life better, and the life lessons she taught those around her by doing so. 

I will keep you all and every other cancer stricken person in my prayers!  Thanks for your words of support and caring they are appreciated more than you know. 

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Nov 30, 2012 10:11AM Linda-Ranching-in-the-mTns wrote:

Howdy all -- I was caretaker for a year to my (wonderful) 83-yr-old Dad through his esophogeal cancer (chemo/radiation/surgeries) from fall of 2011 through the summer of 2012. He came through all that remarkably well -- the oncologist praised him as being the one-out-of-ten who surpassed all expectations of maintaining his weight and his health through chemo.

The key (for us) was keeping enough protein in him and maintaining his nutrition, despite the fact that he had little appetite -- aggravated by his spot-radiation: aimed directly at his esophogus, making swallowing painful.

'Ensure' was our God send. (We put it in a blender with extra protein/fiber powder since he was unable to eat much else).

And although I sometimes had to push him to drink it-- OK -- Yes, I was firm -- I would deliver it and stand there until he drank at least a little -- then back in 10-15 minutes to encourage him to take another drink... and again, and again. But the oncologist said THAT was why Dad fared so well. We kept up his strength, and helped him do what he must.

To celebrate coming through the radiation/chemo -- we planned a trip... a drive to the SW touring (by car) 7 National Parks. It is WONDERFUL for both the patient and caretaker to have something to look forward to. It keeps up the spirits. That trip was so great (both planning and actually taking it) that we planned and took another (this time to Maine, where my 60-year-old sister married her E-Harmony honey of 3 years. My father walked her down the aisle!)

Those trips are priceless memories now that Dad is gone. A week after the second trip he had a seizure, and they discovered a stage-four brain tumor. We went straight to Hospice -- I stayed with him there for the month he had left.

The reason I am writing here now is that what I thought (selfishly) would be a tragic life-changing event for me (the loss of my wonderful father -- my favorite person on earth) -- actually became the largest blessing I have ever experienced. It not only changed my life -- it brought me epiphany after epiphany, and an opportunity to know my father and myself on an entirely new level, far deeper than any connection to 'Truth' I had ever experienced before. 

I had the honor of helping my father say his goodbyes to this earth and to the people he loved. I had the amazingly beautiful opportunity to talk to him about God and Death and Life and help him consider new possibilities about what might be coming next for him. Those conversations at 2 am (as I lay on the cot in his room at hospice) were POWERFUL. I found (and believe that he did, too) a peace and acceptance in what was unfolding.

Anyway -- my hat's off to each and every one of you wonderful loved ones who care-take your BC patient.

My message is a large one.

My message is that you will find when this is over -- that you are a newly blessed human for having helped with this journey. Your view of the world will be broader -- your view of human strength expanded. Your connection to God and Truth and Possiblity will be opened -- if you allow all this to flow through you and don't turn away from these powerful painful times. You will find peace and acceptance in helping your loved one find the same. You will grow together and when they pass (as we all eventually will) you will find that the bond isn't over. They aren't "gone" -- they are  'altered' but still very much with you in almost tactile ways.

I see my father now in every gorgeous mountain vista. I see him in every magnificent sun set. I talk with him often -- as if he were here -- because in what I have come to view as a reasonable possibility of Afterlife -- he IS still here with me. Even time I think of him -- i conjure him -- and he is happy to come visit me here.... share the beautiful sun set, the appreciation of nature. Our conversation and our connection has changed me forever. 

Last May I myself was diagnosed with cancer. That is why I am now here on this website-- had my dbl masectomy and stage one DIEP recon just 3 weeks ago. 

What I learned by 'being there' for my Dad last year -- has paved the way for a whole new acceptance of (and appreciation for) what is now happening in my own life. 

And I know that, just as Dad's passing held a million revelations and blessings -- so will this breast cancer journey.

Dad helped me prepare for this. He showed me how to be strong and honest in the face of cancer and eventual death. He showed me how to live in the moment and how to love this life, this place, and the people connected to us at full tilt -- right to the end. I am SO blessed to have been his caretaker. 

Now I have learned to accept help, too. The man in my photo is my angel of support. I met him through E-Harmony, as I lay in Dad's room in Hospice, that last month of his life. At one point in my last conversations with Dad -- I told him that, once he got to heaven -- if he was ever bored -- I would appreciate his help -- Could he send me a trully good man? (I never made those choices very well on my own). Les quickly rose to the top of heap of men I was communicating with -- and it is SO easy for me to see him as Dad's choice for me. :) 

The most important man in my life left this earth, and that created a space for the new most important man in my life to arrive. And this man comes as a partner complete. Every day he helps me adjust to what this BC journey brings. 

Anyway -- long post -- Sorry. I just wanted to let each of you know that even if you think that what you do is 'for them' -- in the end -- it is all also for YOU. No matter how hard parts of this may be -- You are BLESSED with this opportunity to help, love, and grow with and for your loved one -- and for yourself.

On the other side of the eventuality of all this -- You wil go on -- more deeply connected to the ongoing-ness of your loved one -- who will remain in spirit by your side. But even more -- you will evolve through this with a much deeper connection to all humanity, yourself, and to this beautiful world. 

Try to grow yourself through the hard times. This is an incredible opportunity to shine with light and love... for the rest of your existence.

My father shared his last days of life -- and then even his death -- as a gift. "Helping him" brought forth a new stronger, more peaceful me.

Peace :)

Linda

Dx IDC 5/30/12. LumpX 8/24/12 (1 of 2 nodes + for BC) DCIS/tumors in margins. BMX + DIEP recon 11-6-2012. (11 more nodes x’d/none +). Began Letrozole 12-3-2012 (NO SE's so far!). Cording/pain/limited ROM in node-removed arm- but PT helping a lot! Dx 5/30/2012, IDC, <1cm, Stage II, Grade 1, 1/13 nodes, ER+/PR+, HER2- Surgery 08/24/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left) Surgery 11/06/2012 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Mastectomy (Right); Reconstruction: DIEP flap (Both) Hormonal Therapy 12/03/2012 Femara
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Nov 30, 2012 10:51AM Jac19 wrote:

Linda, what a beautiful post.  Every day something brings me back to what I believe in my heart.  Today it was your post.  I get so frustrated with the many systems our loved ones have to work with that at times I forget to be thankful for all that we have today.  A friend told me this poem long ago and I still love it   "We can't change yesterday that is quite clear, nor live tomorrow until it is here.  So all that is left, for you and for me, is to make today as sweet as can be." 

My beautiful/wonderful Sister, Joy, graduated to Heaven 12-12-12. She remains in my heart<3
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Nov 30, 2012 11:21AM Linda-Ranching-in-the-mTns wrote:

Jac -- I was actually trying to write you a private message, after reading your Nov 5 post about your sister. But for some reason, it wouldn't go through. Since I believe that 'everything happens for a reason' -- maybe my words to you will help someone else today -- and perhaps that is why I couldn't post my message to you as private.

Anyway -- here goes -- here is what I attempted to send you directly: 

Jac, 

I have been there -- and am wishing you and your sister all the best

So sorry to hear about your sister's apparent decline...

I was caretaker for my (very beloved) father for a year, through chemo and radiation, ending in Hospice for a month at the end, after a seizure revealed a new stage-4 brain tumor. 

So, I understand being there as your favorite person on earth prepares to leave.

I understand the difficulty of wanting to help, but not knowing how, or sometimes even if your presence is even felt. Strokes are eclectic, though ... and you can't know what she is absorbing, and even if she seems disconnected/distracted, your steady presence is probably providing her a sense of protection and comfort in a very confusing tough time.

I haven't explored/researched this thread to read very many of your posts (saw today and Nov 5 mostly). Please forgive me for not knowing your sensibilities or all the facts of your sister's condition, other than what I read. But your words touched my heart, and I wanted to reach out to you as someone who has been SO there in that hard place that you sometimes find yourself now.

Finding inspiration and new perspective really helped me maintain my footing... I was 56 years old -- but I enrolled in college (night courses once night a week) for the year of Dad's chemo and radiation. Even through his last month in Hospice -- at the very end... I maintained going to class. 

That year I took Philosophy, Psychology, Interpersonal Communication. Each was a mind-expander that helped me understand what was happening not only in my father's physiological body/brain -- but also helped me step back to view what it means to be human, and why we are here. My essays served as venues of exploration -- into what others before us have deducted that life means -- what we are here for -- what happens when we leave this earth... and our energy goes on, even though our body does not. My final paper for Interpersonal Communication was a tribute to my father - and my Psychology final paper was about brain function and a study of the Hospice system...

I also took some Landmark Education training -- which helped me view the world from new perspectives and a far less judgmental/accusatory frame of mind. It gave me exciting and expansive concepts to consider. I shared them as best I could with my father -- and those ideas opened amazing conversations between us. 

My year with Dad was physically demanding. I sold my business so I could devote my time to my father's daily doctor appointments. I also had to bolster my 83-year-old mother -- who was in ill health herself and in denial about my Dad's condition. I understand what it is like to know that you are devoting 'too much' of your own existence to/for your loved one -- yet not knowing how to do any less. What must be done must be done... and you can't face letting them face it alone. You want to protect them from shadows. And you keep hanging in there way past normal human endurance.

You are an angel. Whatever you give -- is helping. She feels you -- I am convinced. And when she is lucid... seeing your familiar loving face -- and knowing you are there for her -- will bring her some peace in a confusing world. You are helping her find the path to her next world.

Have you seen June Bolte-Taylor's talk about her own stroke? It is totally inspirational -- she is a brain scientist/Nureosurgeon -- and the sort of woman I would LOVE to have lunch with. Her speech is only about 20 minutes, but I think you might find inspiration and comfort and even excitement in it. It helps explain what a stroke can FEEL like -- from the inside.

She speaks of her stroke as an experience of 'Nirvana'. Powerful. Uplifting. 

http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

In fact -- nearly all of the "Ted" series of videos are eye-opening, mind-expanding, and inspirational.

My advice to you is to try to see this time as a huge opportunity for you to grow as a human being. This powerful compelling ultra-intense experience you are sharing with your sister is unique. Many people never have this sort of incredible opportunity to experience what true love really means... and how you can grow through this into a totally new and more enlightened you. Your sister is giving you a huge gift.

One last tidbit -- when your sister is ready to go -- I cannot praise Hospice highly enough. It is FREE. Our Hospice (in Kansas City) was like a very nice fancy comfortable hotel room -- complete with a couch and a nice cot for family. It did not smell or seem like a hospital... although the nursing staff was extremely competent and compassionate. They provided not only round-the-clock care for my father, but support (practical, moral and spiritual) for the family. Meals (and a million doughnuts and cookies) were available every hour of every day -- for family. Councelors and Clergy were available, 24/7.

Competent/compassionate nurses care for your loved one, allowing you to breathe a moment -- take some thoughts and time for YOU.

My grief therapist was provided FOR FREE by Hospice after my father's death... and I still speak to her twice a month (for an hour by phone)... what a wonderful resource to help me cope with own cancer... more than a year past my father's passing. Hospice -- another blessing revealed to me by my father.

All my best,

Linda

Dx IDC 5/30/12. LumpX 8/24/12 (1 of 2 nodes + for BC) DCIS/tumors in margins. BMX + DIEP recon 11-6-2012. (11 more nodes x’d/none +). Began Letrozole 12-3-2012 (NO SE's so far!). Cording/pain/limited ROM in node-removed arm- but PT helping a lot! Dx 5/30/2012, IDC, <1cm, Stage II, Grade 1, 1/13 nodes, ER+/PR+, HER2- Surgery 08/24/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left) Surgery 11/06/2012 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Mastectomy (Right); Reconstruction: DIEP flap (Both) Hormonal Therapy 12/03/2012 Femara
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Nov 30, 2012 02:34PM Tania123 wrote:

I have been lurking, I can' remember where I posted on Sept 22, 2012, just 2 months ago when my mother's bc officially came back, a tumor on her spine was removed, experienced back pain for about 4 months and the oncologist told her not to carry her grandkids, this whole time it was a tumor on her neck.  She was diagnosed with b/c 3 years ago, lumpectomy, 2 nodes tested positive (everyone happy of course) not realizing that it was back and within 2 months she has passed away on Nov 16, 2012.  I was very upset because the only honest doctor was an on call at the hospital who asked, "how long has she been in liver failur? " I replied that we were not aware she had liver failure. Yes, after tumor was removed, she got through a 19 hour surgery since tumor was on spine, but a scan showed legions on liver. Oncologist decided she needed time to recup from surgery -2 weeks, then started 10 sessions of radiation to that tumor on her neck then we were to start chemo again.  However, her quality of life started to go down as soon as she came home from surgery, no appetite, vomitting, tender abdomen, electrolytes were off, she had to go in to get potassium, calcium under control.  Her mind was getting hazy, etc.  Finally, on Monday Nov 12, I told my dad, she needed to go to E.R. somthign was not right anymore. The e.r. doctor said she was in liver failure, admitted her, and on Wed, her oncologist still ordered a biopsy to see if her negative cancer had somehow changed to positive to try the Herceptin, but she was already dying. She died 48 hours later. I don't understand how the liver wasn't checked to begin with, it seems that that would have been the more urgent thing. I believe the surgery on her spine was pushed and now all the different doctors, obviously dont communicate because if her kidneys are shutting down (her urine output was slowing) why would she still submit her to a biopsy? I feel like all the doctor were so disconnected excepted the on-call who finally told us Wednesday that he didn't expect her to make it past 2 more days. Now, that everyone is gone, ceremonies aside, I am finally grieving for my 60 year old mother.  I wish I had known more during the initial b/c process. I woudl have urged her to check out the pain in her back, etc but no doctor listened. she even went to a chiropractor.  I am just so sad and lost but I wanted to post this because I wish I would have known so much more. In her case, it is obvious that the liver was done, had we known that, the surgery on her back (which was not only painful and dangerous, could have been approached through radiation, etc to try to shrink it).  It's a game of what if's? Her last blood work came back great in April 2012, tumor markers were low.  Here I am 10 days after she is gone and it has all come rushing back.  I can't stop thinking about it.  

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