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What have I done?

marym29
Posts: 71
Joined: Mar 2006

Hi Online Family...
Hope everyone is safe, happy, and doing well today and always! ;)

Also, and please reference this post to my previous post titled :My Family Letter - is my mom dying everyone?.

I've been thinking about the longevity of my mom's life; what are we really looking at here. I mean, the woman's been through (2) harsh regimen's of chemotherapy treatment, is now on a 3rd, and why isn't it working?

So, I decided (as my mom's daughter who has access to her medical records) to call her oncologist directly and ask some questions that are very hard to ask but I just had to know.

And before I start this... I know ultimately this is in God's hands; and really he only knows what is going to happen. But statistically, I knew her dr. could "tell me something" here so...

I called him last week Wed. and he called me back last Fri. Once I asked him "the questions" he told me that from what he has seen with this kind of cancer people can last anywhere from 6 to 9 months. He also said that it seems doubtful that anything they do will help her at this point. Right now her most vunerable organs are her lungs and liver; and that eventually the cancer will effect one organ so much that it/they will start to shut down.

Also, I talked with my mom yesterday and she said to me she "wondered" if anything at this point was going to work.

I suppose eventually she will get to a point where both her and her husband will want "to know" the questions that I already have the answers to.

Anyway, sorry to babble on and on here... I just need some imput here. I have been crying since I asked these questions; and am wondering now "why the hell I asked them in the first place!"

Thanks and I invite and look forward to anyone who want to comment here.

Sincerely & Love,
Mary from WI

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

You asked because you needed to know. You asked because it was time for you to know. HE needs for you to know the odds, and when to say 'when' in regard to your mom's treatment.

It is a terrible burden you carry, but there is no one better, because you are a very strong and loving person.

Ask mom how she feels, if she wants to continue...again, she may know more than you think.

Miracles DO happen, but sometimes these miracles take over when traditional stuff fails and is stopped. A body can only take so much. Comfort is necessary.

I am wrapping my arms around you, dearheart, with tears also running down my cheeks.

There is only one being that knows all the answers and we just need to listen...I wish I knew...

Hugs, Kathi

marym29
Posts: 71
Joined: Mar 2006

Hi Ms. Kathi,
And YOU, my dear, and one of the most caring and wonderful women I have ever talked to! ;) And I wanted to write to say "thank you again" for all of your kind words, thoughts, and prayers. You will never, ever, ever know how much you and everyone else on this site mean to me.

Sincerely & Love,
Mary from WI

alta29's picture
alta29
Posts: 435
Joined: Mar 2005

Undestand how you feel...My dad ust past away in Jan. of pancreatic cancer..when they found it was really to late...but in your moms case...have they done more ct scans after she started chemo ? they have been so many people here with mets to lungs and liver..and they are still kicking...sometimes there's really not much to do...but like Kathi said..there are miracles...Pray, Pray, Pray..
God bless

marym29
Posts: 71
Joined: Mar 2006

Hello Kind Soul,
I am so, so sorry for your dad's passing. But know that is finally in "the hands of angels" in heaven. I know I have to stay positive for my mom, her husband, and our family. It's just sometimes I have a "rough moment"; but I know that without a doubt in my mind (like your dad) eventually my mom is going to "a better place".

Also, and to answer your question... my mom is on her 2nd week of Xeloda. She will go in again for blood work and a follow-up CT scan probably in a month so...

I will continue to pray, pray, pray! ;)

Sincerely & Love,
Mary from WI

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

Mary, you may find your mom knows more than you realize. The doctors may not have told her but I would be suprised if she were in the dark. I have had three rounds of chemo sine July 2004 and will find out today if there hs been any change so I can crtainly understand having to ask the questios, how much chemo is enough, when do you change the way you are looking at this disease. Your mom will know when enough is enough. and hey, all is not lost yet. 1/2 or more of the stage 4er's on here are not doing what the doctors expected them to do. They are doing better. The doctors give us statistics based on historical data. That data is changing pretty fast and these days and in a positive way. Sorry you have to carry the news the doctors told you but my suggestion is to put it away in a box and throw away the key. You don't have to focus on a statistic. You can focus on what your Mom is all about, that I am sure is much more positive than a statistic. Love her and support her. She will let you know her desires when she is ready.
Limey.

marym29
Posts: 71
Joined: Mar 2006

Hi Limey,
You are such a GEM in my eyes and to everyone on this site! ;)

Thank you TOO for your kind words and support. And you are probably right; my mom probably "does know" what is happening to her body - how could she not?

I continue to hold onto "hope" and it is because of "this site" and this "online family" I have become a part of. And I will definitely take your advise about putting "the information I've recently found out" in a box and throwing away the key. Because there ARE Stage IV's on here who are exceeding the statistics so...

Thank you again for taking the time to respond and support me in my families journey with cancer.

Sincerely & Love,
Mary from WI

valeriec's picture
valeriec
Posts: 350
Joined: Oct 2006

Dear Mary,
I have read all you posts about your mother, and know exactly how you feel. My mom (63 yrs old) is also a stage 4. She has done 2 lines of treatment-a total of 9 months. Those 9 months were very difficult on her. She suffered a severe depression that was the darkest thing I have ever seen. After the 2nd line of treatment failed, my mom opted for no more chemo. She stopped all chemo the first of February, and her onc also predicted 6-9 months. My parents had already left the room when the onc told me this. After we got home, my parents both asked what the onc had said. To this point, that was the hardest conversation I have ever had to have with my parents. I love my mom so much and would do anything to take this all away, but because I can't, I have decided to give it all to GOD. In March, my mom received Cyberknife treatments on both her adrenal glands. This is where her mets are. The last PET scan, done in April, showed no further spread and adrenal tumors were less active. I know it is so scary , but like you, I believe only GOD knows what is going to happen. So far, my mom is doing well. She is having a CT scan today and will do another PET scan in June. If you ever need to talk, please feel free to email me through this site.
I will be praying for you and your family. Your mom is already so blessed to have you as a daughter.
Be strong.
God bless-
Valerie

marym29
Posts: 71
Joined: Mar 2006

Dear Valerie,
OMG... are you a sweetheart! ;) I "thank you" as well for sharing those kinds words and most intimate thoughts with me. It just feels SO good to talk with people who know "exactly how I am feeling" about this journey with my mom.

And you are absolutely right... only God knows what is going to happen here; so I too leave it in his hands. I talk to my mom everyday; and she is still fighting. And I try to stay as positive as I can for her; always encouraging her in anyway, shape, and form that I can.

I will pray SO HARD for you, your mom, and your entire family in your journey with cancer; and will pray that you receive good scan results, too!

Sincerely & Love,
Mary from WI

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Mary,

Stacy always says, "we don't come with an expiration date marked on us". Miracles do happen and doctors do sometimes give up before the patient does. Have you thought about seeking a second opinion?

Kerry

marym29
Posts: 71
Joined: Mar 2006

Hey Ms. Kerry,
Thank U 2 for taking the time to respond to my most recent post, too! ; )

And, you are also right, we do not come with an expiration date and miracles do happen so...

And to answer your question... YES, we are actually going to Madison, WI on 6/5/07 to get a second opinion on my mom's case. As her daughter, I try to go to as many of her appt, treatments, etc. as I can to stay interactive in her journey.

And I will definitely let you know how that appt. goes as well.

Take care and I hope you and your family always stay safe, happy, and well! ;)

Sincerely & Love,
Mary from WI

themis01
Posts: 168
Joined: Feb 2005

Marym
I have been in the same place that you are. I always went behind my mom's back and got the nitty gritty info. I did not share with her unless she asked and she never did. She neede to have hope to make it as long as she did and hearing too many details will take it away fast. I know every onc. told me that the more chemo that don't work makes it more likely that the next one won't work either. My mom finally died from her organs shutting down and we don't really know which one b/c she also had the cancer in her lungs and liver and various other places. I will tell you that all docs said 6-9 months and one hopeful one said based on her spirit and fight that she could get a year to 18 months. She lived 13 so she did prove the majority of the docs wrong. Remember it isn't over until it's over but if you see that it is over just be by her side. You will never forgive yourself if you aren't. Email me anytime.
Erika

marym29
Posts: 71
Joined: Mar 2006

Hi Erika,
I cannot say "thank you" enough for this note. ;) And I am so, so, sorry for your mom's passing, too. But know that she is in a much better place now than we are; my mom always says that she knows she's going to a better place.

And although that is SO hard for me to hear her talk about; I'm glad she's even positive with that reality of her life.

Also, when I talked my mom's oncologist he also said that eventually her organs would start to shut down. And if I may ask...

Would you be willing to share with me "maybe" when that time eventually comes for my mom what to expect? I just don't want her to be in any pain, ya know?

Anyway, Erika, thank you again for sharing such personal and intimate details with me. You have helped me more than you will ever know, hon!

Sincerely & Love,
Mary from WI

hopefulone
Posts: 1048
Joined: Jan 2007

Mary, sorry I couldn't respond sooner, been away for a bit, but I agree with what many others have said. Doctors quote statistics , but it doesn't necessarily have to mean that your mom is one of them. Get second and third opinions if necessary. No offense to doctors, but as in any other profession, there are some who know more than others. Your mom and you will be in my prayers. God Bless.

Diane

mindy10
Posts: 183
Joined: Jul 2005

Mary just wanted to let you know I sent you a email. Mindy

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