Onco appointment was Friday

camul

My Coumadin level is a little low, so am trying a half pill one day, whole pill the next and go back Thursday for a follow-up on the levels.  

I will not have anymore active treatment for the cancer, only for  pain.  He recommened starting Hospice sooner now. Told him I didn't know if I was ready for Hospice.  He asked why, and I said I guess I am still hoping for a magic fix.  He said there isn't one, my body can't tolerate anymore chemo, Xgeva is no longer an option.  We have exhausted all of it.  Told him I didn't want to give up.  He and my son both said I am not giving up, by body has given out.  

Honestly, I have felt this since starting Adriamycin.   Intellectually I know this and agree with it, my kids and sisters were not happy when started on the Adriamycin, I was still hoping that maybe this one would be the one that would slow or stop the progression.  As long as I was doing something I felt  some hope in extending my time.  I kept trying any and all treatments that were offered, yet, the cancer has continued to grow. My family has noticed the steady decline in the last months.  My boys both said they would rather I felt better with less time, than do more chemo and be to worn out to get out of bed. 

I would get a second opinion, but I got 3 second opinions when I was in  the hospital.  Two of them said more chemo would not be in my best interest.  The third who I saw on Tuesday and Wednesday asked if I was still on chemo, said stopped it 12 days before.  He thought when my body got stronger I could resume.  This was confusing!  Later, I told my nurse that he confused me.  He overheard the conversation.  B4 coming to see me the next am, he went to the office and looked at my records.  Once he saw how aggressive and long my treatment had been, all the infections, antibiotics I was on, yet the cancer continued to grow, he said I was not under treated and didn't know if he could recommend more treatment either.  He said there comes a point when you want quality in the time you have left.

I asked him about taking a last trip to CA, he said if I should do it in the next few weeks if I am going to do it at all.  I asked him how long I had (I was meaning travel wise), he and my son both thought I was asking in total.  He said he couldn't tell me.  When we got in the car, my son asked me why I asked him again how long I had left, I told him I meant to take a trip...  ie.  how long I might plauteau and still be mobile.  Then I realized why he answered like he did, but my mind was just in a different place, so Thursday I will ask him again but clarify I am referring to being mobile!! 

Suggested upping the Fentanyl yet again, as the pain is still very constant.  That too will happen Thursday and it probably means the end of driving, which will limit my world even further.  Now I am working on taking my brain from Hope to acceptance and finding a way to find peace with all of this.  Today, when I got up and went to Mass, I realized that how the next part of this journey plays out will so be determined by how I choose and am able to accept this....  and this means deepening my faith and spirituality even further. 

Hugs and prayers,

Carol

 

SIROD

Breast Cancer...

Dear Carol,

 

Several years ago, a young (31) year old mother of 5 decided to stop chemotherapy and go into hospice.  She thought she was giving up on all the people that had supported her through fund raisers and etc.  She wrote a wonderful post title "Confessions of a Hospice Patient" on another support board.  Her husband said, chemotherapy was to help you with the cancer  now if continue will kill you faster than the cancer.  She had many wonderful months where she took trips with her husband and then with their children and put a lot of time in making memories with them.  I was always in awe of this brave woman in her role of acceptance. Her name was Amber Chase and you can read her blog by copying and pasting the following web page.  "Confession of a Hospice Patient" is worth reading which is the second address.

 

http://amberchase.weebly.com/our-blog.html  

 

http://community.breastcancer.org/forum/77/topic/738241

 

Due to this board dealing with all stages there seems to be reluctance to talk about what this disease really is about especially stage IV.   It is like the poem, "The elephant in the room".  Breast cancer is not a chronic disease because of the toxic drugs it uses to "buy time".   Chronic like diabetes, heart have drugs that as long as you follow the directives, one more than likely can live a long life.  That isn't stage IV breast cancer.   One can say what about "me", I am going in my 19th year, am I chronic.   I have an indolent cancer that responded very well with hormonal drug therapies.  Then it no longer responds…and the only option is chemotherapy.  

 

You have fought the good fight Carol, and like all those women who have done the same, you will arrive at that acceptance stage.  I do wish you a good journey.

 

Best,

 

Doris

lintx

Good Morning!

 

Carol

I hope you'll take the trip to CA and enjoy the beauty there.  The Hospice decision has to be your own, so no huge rush.  We all want you to be comfortable and without pain.  You have gone through so much already.  Your last sentence had me in tears.  Your faith and spirituality are very strong, so there will be no time that you're alone in any of this.  I wish we were all close in location and could be of more comfort.  You're in my prayers.  Love, Linda

Double Whammy

lintx said:

Good Morning!

 

Carol

I hope you'll take the trip to CA and enjoy the beauty there.  The Hospice decision has to be your own, so no huge rush.  We all want you to be comfortable and without pain.  You have gone through so much already.  Your last sentence had me in tears.  Your faith and spirituality are very strong, so there will be no time that you're alone in any of this.  I wish we were all close in location and could be of more comfort.  You're in my prayers.  Love, Linda

Hospice

Hospice is not a bad thing.  You can opt out at any time and extensions happen all the time.  I'm sorry you're struggling with this, Carol.  I think I would be, too.  The perception of hospice feels like giving up to many, and I think it's because of that perception that people put it off for such a long time that their time in hospice is short and they don't actually reap the full benefits that hospice offers.   Doesn't have to be that way and I can't imagine you being passive and laying down to die simply because you have enrolled in hospice.  I hope you will embrace the help they can give you and utilize it to it's fullest extent.

I wish you the best rest of your life.

(What part of California are you planning to visit?)

Hugs,

Suzanne

Clementine_P

Carol

I'm so sorry that you are having to go through this.  You have fought so hard and continue to fight.  I hope that you take the trip to CA and perhaps many more.  As with this entire journey, you will choose the right path for you and your family.  I wish you quality times with your loving family by your side.

Very best,

Clementine

aisling8

Clementine_P said:

Carol

I'm so sorry that you are having to go through this.  You have fought so hard and continue to fight.  I hope that you take the trip to CA and perhaps many more.  As with this entire journey, you will choose the right path for you and your family.  I wish you quality times with your loving family by your side.

Very best,

Clementine

Hope and acceptance

seem like two different concepts, and I hear what you're saying, but I do think they can merge. I can see what you're having trouble wrapping your mind around, though. I have no doubt that you'll get where you need to be mentally and emotionally and spiritually. I'm just sorry it's necessary.

I'm thinking about you. I'm hoping you can manage your pain so you can enjoy your family.

Sending much love,

Victoria

 

 

hope67

Dear Carol

I believe that you will feel when it's time for Hospice, noone can make that decision for you. I wish you with all my heart that you will be able to find peace and be able to enjoy your time with people you love.

Lot of love, Carmen

 

CypressCynthia

Carol, please remember that

Carol, please remember that many advanced cancer patients extend their life with hospice.  It sounds crazy, but think about it.  If the treatment isn't working, the treatment is just exhausting your body further for no reason.  Good pain management can really help too.  My sister's mother-in-law lived a long time with a terminal diagnosis with hospice and good pain management.

Do what is right for you!!!  And know that we all love and support you through your decision.  Sending prayers and hugs!

Here's a link: http://www.nhpco.org/sites/default/files/public/JPSM/march-2007-article.pdf

Josie21

CypressCynthia said:

Carol, please remember that

Carol, please remember that many advanced cancer patients extend their life with hospice.  It sounds crazy, but think about it.  If the treatment isn't working, the treatment is just exhausting your body further for no reason.  Good pain management can really help too.  My sister's mother-in-law lived a long time with a terminal diagnosis with hospice and good pain management.

Do what is right for you!!!  And know that we all love and support you through your decision.  Sending prayers and hugs!

Here's a link: http://www.nhpco.org/sites/default/files/public/JPSM/march-2007-article.pdf

hospice

Hi Carol,

I totally agree with CC.  Hospice can be very helpful, but only you can decide what is best for you.  If you decide to do it, it does not mean you are giving up.  It simply means you are asking for help to manage pain.

Whatever you decide, we are all here with you.

Sending many hugs your way,

Ginny

jamiegww

Carol

I just want you to know we all love you and are here for you.  I hope I can be as strong as you when my time comes to make those decisions.  I have already caught myself starting to fall apart at times and I honestly think about what you are going through and feel ashamed of myself.  I hope you get to take your trip and that it's the best trip you've ever taken but I also hope you get to take many more trips after that.

HUGS!!!

Jamie   

lynn1950

Options

Carol, I  follow your posts quietly and I have always been impressed with your powerful grace.  I hope that you have happy travels to California and I know that you will make the right decision concerning hospice.  I am so sorry that you are in pain. You are in my prayers. xoxoxo Lynn

GreeneyedGirl

lynn1950 said:

Options

Carol, I  follow your posts quietly and I have always been impressed with your powerful grace.  I hope that you have happy travels to California and I know that you will make the right decision concerning hospice.  I am so sorry that you are in pain. You are in my prayers. xoxoxo Lynn

~♥~

Carol, I am moved, and touched by your honesty. I believe as we travel this journey our faith is challenged, and stretched and deepened. It is personal and we ponder what is right and best, and spend many hours wrestling with ourselves over what to do. Trust in your inner voice, which I believe is spiritually connected. That intuition that steers us as mothers, women. It is part of how we are so wonderfully made~ I pray for better days spent with loved ones, laughter that makes your sides ache, travel to places you desire to be, and the sun on your face (and the wind in your hair!).

Thinking and praying for you and your family~

~Melanie

Lynn Smith

GreeneyedGirl said:

~♥~

Carol, I am moved, and touched by your honesty. I believe as we travel this journey our faith is challenged, and stretched and deepened. It is personal and we ponder what is right and best, and spend many hours wrestling with ourselves over what to do. Trust in your inner voice, which I believe is spiritually connected. That intuition that steers us as mothers, women. It is part of how we are so wonderfully made~ I pray for better days spent with loved ones, laughter that makes your sides ache, travel to places you desire to be, and the sun on your face (and the wind in your hair!).

Thinking and praying for you and your family~

~Melanie

You've been

You've been fighting a good battle for sometime. You know how you feel and if you believe you're not ready for Hospice wait. It's your decision.I remember hearing and reading about many patients who outsmart their doctors.  They give them months to live and they live years. I beleive in Miracles like that. I've had 4 Miracles to happen through my lifetime and I hope if this cancer ever returns I have more Miracles.

Carol, WISH a MIRACLE for YOU.

Lynn Smith

New Flower

California Brunch

Dear Carol,

It is impossible to accept when doctor is  not offerring options.

For pain management acupunture, massage or acupressure. I did acupunture for several months it did help.  If you want to visit California, please do it. Let us know weather  you are going North or South. We will be delighted to give you hugs if you coming to SoCal, Orange county or any other places.

as far as I remember you have not tried Fslodex. It is not favorite, however you can experiment when you have become stronger.

Hugs

Olga

lakegirlsml

hospice

Carol, I am a retired RN, and spent many years as a hospice nurse. I understand what a hard decision it is to enter hospice. Please look into a hospice near you. The nurses are experts on pain and symptom management which can make you so much more comfortable. They are also a good resource and support for your family.  We helped many a patient take a trip by arranging for hospices across the country to be available if our patient needed anything. It was reassuring for them on their trip to know what resources were available to them.

My thoughts and prayers will be with you.

Carria

VickiSam

hope67 said:

Dear Carol

I believe that you will feel when it's time for Hospice, noone can make that decision for you. I wish you with all my heart that you will be able to find peace and be able to enjoy your time with people you love.

Lot of love, Carmen

 

My sweet Carol,

I am at a loss for words.  My heart tells me that you, and only YOU will know what the best options, plans or treatment  --your body, soul and mind will be able to tolerate.

I pray that you can find the inner peace in what you need to insure strength, happiness and peace this day forward.

I love you all the way to heaven and back - Carol.

Gentle hugs, and prayers

Vicki Sam

camul

Thanks to each of you.
Was thinking of Sacramento, however not feeling too good. Was hoping after 3+weeks off chemo I would be stronver. Had onco appt Thursday, chest still tight -- he believes this still from the emboli in right lung that is keeping chest tight. Asked for urine test because of bloating and pain in lower abdomen. Did the test, shows infection, a lot of blood, and every other little pretty color on the test strip went to the extreme. In 2009 I was told I had bladder cancer. Full of tumors, had a resection, followed by a repair. Was quite surprised, path came back 'atypical cells, not yet cancer'.
Sent for a culture and started Thursday on Cipro, which affects the coumaden, so lowered coumaden dose. Doesnt look too god for the bladder. Figured something was up the last few weeks as there has been a bloody dc from the bladder and running fever. Not painful as much as bloated out and tender.
I swear this has been really frustrating .
Did ask him how long he thought I could travel, he again said if I am planning on going anywhere do it now. They have no idea with everything going on, but I am still to worn out to even think about going anywhere. Last 3 CA trips were between San Diego, Carlsbad (which is how I was lucky enough to meet Victoria), but this time I was hoping to go to see sister in Sacramento, even thought of going to Sac then from there fly to Long Beach then home, but no energy! I will let you know if I do.
Thanks for all the support, love and info on hospice. , and I am sure it is hard on them. If I bring up hospice they really see no reason to talk about it and dont really want to hear anything about it.... so I think it is time to get them involved to help them accept this also.
Damn, Cabo and a Margarita sound like the best option!
Hugs and love back to each of you.











Sometimes I think my family does not realize where I am in this journey

VickiSam

camul said:

Thanks to each of you.
Was thinking of Sacramento, however not feeling too good. Was hoping after 3+weeks off chemo I would be stronver. Had onco appt Thursday, chest still tight -- he believes this still from the emboli in right lung that is keeping chest tight. Asked for urine test because of bloating and pain in lower abdomen. Did the test, shows infection, a lot of blood, and every other little pretty color on the test strip went to the extreme. In 2009 I was told I had bladder cancer. Full of tumors, had a resection, followed by a repair. Was quite surprised, path came back 'atypical cells, not yet cancer'.
Sent for a culture and started Thursday on Cipro, which affects the coumaden, so lowered coumaden dose. Doesnt look too god for the bladder. Figured something was up the last few weeks as there has been a bloody dc from the bladder and running fever. Not painful as much as bloated out and tender.
I swear this has been really frustrating .
Did ask him how long he thought I could travel, he again said if I am planning on going anywhere do it now. They have no idea with everything going on, but I am still to worn out to even think about going anywhere. Last 3 CA trips were between San Diego, Carlsbad (which is how I was lucky enough to meet Victoria), but this time I was hoping to go to see sister in Sacramento, even thought of going to Sac then from there fly to Long Beach then home, but no energy! I will let you know if I do.
Thanks for all the support, love and info on hospice. , and I am sure it is hard on them. If I bring up hospice they really see no reason to talk about it and dont really want to hear anything about it.... so I think it is time to get them involved to help them accept this also.
Damn, Cabo and a Margarita sound like the best option!
Hugs and love back to each of you.











Sometimes I think my family does not realize where I am in this journey

Carol ...

I am here in cyberspace sipping a Margarita - we are on beach chairs, dipping our toes into the cool ocean water at Riu Palace in Cabo.

Acceptance is most difficult for those that love us, and have supported us thru many ups and downs.  We all hold on to hope that there may be a new treatment option, perhaps a new pill, or chemo - maybe  a new Oncologist that can offer us hope.

Keeping you close to my heart, dear sweet Carol.

Vicki Sam

aisling8

VickiSam said:

Carol ...

I am here in cyberspace sipping a Margarita - we are on beach chairs, dipping our toes into the cool ocean water at Riu Palace in Cabo.

Acceptance is most difficult for those that love us, and have supported us thru many ups and downs.  We all hold on to hope that there may be a new treatment option, perhaps a new pill, or chemo - maybe  a new Oncologist that can offer us hope.

Keeping you close to my heart, dear sweet Carol.

Vicki Sam

hey, is this a private party?

or can I pull up my beach chair and join you and VickSam in cyberspace with our drinks and toe dipping? Though I love a margarita, I'm thinking this occasion calls for an umbrella drink. And shouldn't we have some snacks on order?

Carol, we're all thinking about you, circling you with love. 

Sending good thoughts, much love, some salty sea air,

Victoria

 

 

camul

aisling8 said:

hey, is this a private party?

or can I pull up my beach chair and join you and VickSam in cyberspace with our drinks and toe dipping? Though I love a margarita, I'm thinking this occasion calls for an umbrella drink. And shouldn't we have some snacks on order?

Carol, we're all thinking about you, circling you with love. 

Sending good thoughts, much love, some salty sea air,

Victoria

 

 

Thanks Victoria
of course you can join! Anywhere along the coast! Carlsbad or Encinitas would work! Just an extension cord blender, mixers, a little booze and some firewood and chairs and we are set! Use to love camping at Dana Point, beachfront and the trailer was always equipped!
Wouldn't that be a great spot for a party for the pinks!