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Chest Fluid...I Still Don't Understand How....

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

Not really looking for answers...just jotting down some repetitive thoughts from my head.

Its been 2 weeks since my mom took her last breath on this earth. Maybe it's part of the coping or grieving process, but I keep going through everything that happened in my head. All the questions will never really be answered, I realize. But maybe someone has had the same thing happen?

Early-June: her PET showed the tumors has shrunk by 30%. Her oncologist was ecstatic and we all were so happy about the progress.
Mid-June: she took a break from 1 session of chemo. This was her bday wish.
Early-July: she had fluid in the chest, which eventually tested pos for cancer.

How the heck can EC be so dreadful to mislead everyone into thinking we were over a hump...?? I now know the fluid was our biggest enemy. It literally came from nowhere and could not be stopped.
....then 6 weeks after the fluid tested positive for cancer, I am planning a funeral. I'm so shocked to this day at how quickly things can change with EC, and now reading Judy and Don's heartbreaking story has me even more surprised.

cher76's picture
cher76
Posts: 302
Joined: Nov 2010

Just wanted to let you know that you are not alone. I had much the same feelings after My husband Rickie passed away in January. I replayed the last few days over and over again in my head, trying to phantom how this had all come about. We knew Rickie was Stage IV and terminal, but no one is ever really prepared for those final days.
We had a similar experience as you:
May 2011 - CT scans shows cancer has shrunk considerably and endoscopy comes back with clean looking surface in the esophagus.
Early Aug 2011 - CT scan shows no change, not better, but not worse.
Aug 2011 - Rickie chose to delay chemo session by a week in order to visit our daughters.
Sept 2011 - We again delayed chemo a week in order to spend a week at the beach celebrating our daughter's birthday.
Oct 2011 - Endoscopy to stretch esophagus is tried, but the tumors have reappeared and it is too risky to stretch. CT scan shows cancer has spread and come back with a vengeance. Mets diagnosed in brain as well, and radiation is started.
Week before Thanksgiving he suffered internal bleeding and spent a week in the hospital. We came home with hospice and things seemed to go downhill from there. He passed away on Jan. 4 2012.
In the weeks and months afterwards I told my story again and again to anybody who would listen, (and a few who probably didn't really want to!). Thank goodness I have such wonderful friends and family. I let all the "what ifs" crawl into my head and take up residence there for awhile. What if he hadn't skipped the chemo, what if we hadn't done this or had done that??? All those thoughts played around in my head like a broken record and kept me up nights. I attended a wedding in May and was speaking to a distant cousin of Rickie's, who happened to be a hospice chaplin, and related to her all that had happened. I apologized for boring her with the details, and she told me not to apologize, that you need to tell your story again and again until you don't feel the need to tell it anymore. For some reason that made me feel good and at peace with myself. At that point in the conversation the lights in the hall blinked several times and she said, see Rickie agrees!
I know that you know in your heart of hearts that you did everything possible to take the best care possible of your mom. You were a loving daughter and stayed by her side at the most difficult time of all. She knew your love for her and that is what is most important. If you ever feel the need to talk I am here and on the EC facebook page.
Hugs to you,
Cheryl

mrsbotch
Posts: 377
Joined: Oct 2010

I know what you mean about the fluid. It is the thing that seems to be the worst part of EC. Once your body fills up with it usually it is cancerour. We need to be real about it and the drs do too. Why they make us jump thru hoops is beyond me.

Why can't the drs tell us the truth? That is what is so sad. Is it money? It just seems to make our loved ones drag on and be in such pain. The fluid has to be pressing terribly on their organs and making them sicker and sicker.

I know that some people live longer with the chemo and whatever else as a stage 4 but the bottom line is if you are weak and cannot handle the chemo etc why ruin your quality of life.

As I have said before Vince told me at the end his biggest regret was taking the chemo when he knew he was terminal. He was so sick and weak. I cannot seem to release those memories so the drs are WRONG.

Why is it always about money. FEC FEC FEC.

Love you

barb

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

my, no OUR, story is similar.....

Nick was diagnosed May 19, 2011. Doc says you're young & healthy, we will be aggressive and beat this. You have a less than 10% chance of becoming terminal.
June - early August - Nick does inpatient aggressive chemo & 26 or 28 rads.
Sept 8, 2011 - THE surgery
Sept 13,2011 - Clean Path. Released from hospital on Sept 15th. Doc calls him his "poster child" of EC surgery. Nick is doing INCREDIBLE.
We have a GREAT winter and begin (again) to plan a future come spring.
May 11, 2012 - CT Brain scan following a couple of dizzy episodes. Brain tumor found.
May 18, 2012 - MRI shows 3 brain tumors & a misting of smaller tumor across his skull, as well as Leptomengeal disease (cancer in his spinal fluid). Doc says go home and have a good summer.
Begin 15 Whole Brain radiations.
June 18 - final WBR, but Nick admitted because of "tumor seizure". Doc calls floor nurse to talk to me and says I'm so sorry, but Nick won't be leaving the hospital.
June 19, 2012 @ 7:46 AM - I lose Nick to EC

It is so freaking unfair. There is absolutely nothing about EC that makes sense for those of us that have fought and lost.
...and while I would never wish this on anyone else, I have to question the justness of it all when there are absolutely evil people still alive in this world and those of us that have lost - well, we have lost some amazing, wonderful people.

I don't get it. I never will. and dammit, that hurts!

Terry
PROUD wife to Nick, age 49

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

I have seen all your stories and want to thank you for "summing" up the similarities. Thanks for helping the hamster wheel in my head slow down a bit...looks like I'm not the only one baffled and fooled by this disease. At least we are in this together. In the meantime, I'm thinking about Judy and Don and sending them strength. Their story sorta fits right in here too.

JaneO's picture
JaneO
Posts: 42
Joined: Dec 2011

Jack passed away two weeks ago. Two months before he did, we had already had 3 scans of different areas. Each time they told us there was nothing there, but Jack's pain never subsided. He had a stent put in because he could no longer swallow. Eventually, at the beginning of August, the pain was unbearable and no amount of meds were helping. They did a scan and found it had gone fast and furious to the liver. They told us 3 days to 3 weeks! (He lived two). I have constantly played the "what if" game in my head. This disease is so horrible. It strikes when it wants with no ryhme or reason. There never is a clear path it travels. From meeting everyone on this board since last December, I have learned everyone's case is so different. It was always helpful to hear one's stories so as to be prepared in case similiar things might happen. We all do the best we can and pray the doctors can guide us through the best way they know how. I feel the team of doctors, nurses etc we had all did the best they could with what they know about this disease. The nurse practicioner we had told us in the end...we just don't have the knowledge or medications yet to know how to tackle some situations when they happen. Jack was in chemo tx, but the Beast decided to take over and beat us. Someday hopefully they will know more and be able to catch things sooner and have better ways to treat the ugliness of this cancer.

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