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Lovekitties's picture
Lovekitties
Posts: 2998
Joined: Jan 2010

I was thinking of starting a thread about some of the folks here who are in crisis, in new treatments or who are pondering what to do next, and I realized there were too many to list.

I hope that each and every one of you will add a few words to this post and let us know how you are doing.

Know that there is love and support here for each of you and prayers/good vibes for improvement.

Hugs,

Marie who loves kitties

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I  bet those kitties love you too ... you have a very kind and open heart. ~ Cynthia

Brenda Bricco's picture
Brenda Bricco
Posts: 561
Joined: Aug 2011

They took Hubby in about an hour ago for Thera Spere Therapy... sitting in waiting room going over in my head every thing they told me. The one thing I keep running over and over is that they have seen complete success many times, so praying that he is one of them.

It was three years since dxed Feb. 1st... I can tell he is getting tired, I am tired for him.

GOD's blessings

Brenda

LindaK.
Posts: 361
Joined: Apr 2013

What a sweet post Marie.  My husband is recovering from his 2nd cancer tumor surgery in 13 months.  He's gone from stage II to stage IV 6 months after finishing Folfox in July.  He's having a slow recovery from this surgery, but we just followed up with the surgeon this morning and we both felt good with his thoughtful answers to our many questions.  So many are suffering.  We're in the waiting phase for scans in a few weeks.  Thank you for sharing your kind words.

Linda

jen2012
Posts: 1255
Joined: Aug 2012

Very kind Marie.  Ive been meaning to post an update and will do so here.

Found out yesterday that hubbys cea has dropped to 2.2, from 79 in november when his bone mets were finally diagnosed.  Folfox seems to be working for the 2nd time.  However his liver function blood work is out of whack so onc wants to do an ultrasound on friday before chemo.  Nice Valentines day.  Q  I think the liver issues are a result of them decreasing his fentanyl too quickly and sending him into withdrawal this weekend, but I'm not the doctor.  Hes getting around a little better each day and pretty much using a cane now and only needing the wheelchair for long distance and times.

 

We are so fortunate to have great support from friends and family.  It has made a difficult situation easier.  I am so thankful for having this place to come to for support, advice...and most of all hope!  There are some truly amazing people here.

wolfen's picture
wolfen
Posts: 1213
Joined: Apr 2009

What an appropriate phrase that is, Marie. I think my family has been in the throes of that "crisis" since cancer entered our lives back in 2008. I envy those of you that are able to live by the mantra that cancer does not define who you are. My coping mechanisms are worn down to the nubs. To me, cancer is relentless & all consuming. It took my husband & is doing it's best to take my daughter.

As I write, she is undergoing an infusion. The previous infusion was at an even more reduced dosage than planned, as liver enzymes are still too high. I don't know the dosage status of the current one. I only know that she is wearing out. I hear it in her voice each time we speak. Somehow, she is more accepting of this than I am. I seem to hover between numbness & despair. Hope has "flown the coop".

I will forever appreciate all the love, kindness, & concern all of you have shown to each of us these many years.

Luv,

Wolfen

ketziah35
Posts: 1154
Joined: Jun 2010

Cancer or the effects of cancer dictates out lives. my mom went to Seattle to see my brother god bless him but he called cabs for her so she didn't have to walk a block. Personally we nicknamef cancer the devil iny family or we say that evil thing. Then no one knows what we are talking about.   Cancer is always there. 

jen2012
Posts: 1255
Joined: Aug 2012

How did jbg do? I think of you guys all the time.

fatbob2010's picture
fatbob2010
Posts: 461
Joined: May 2012

Marie your compassion is without compare.  Every one of us on this board are in some sort of personal crisis.  That crisis is what brought us here.  I have surgery in the morning for a second liver resection.  Last surgery was pretty much a slam dunk classic case.  This time not so simple.  

Regardless, this is a horrible and relentless disease that robs not only our bodies but the souls of both patient and family.  I liken cancer to a prisoner on death row.  The prisoner goes through appeals and delays.  Yet, all the while knowing that the the executioner waits patiently.

Peace and love to you Marie,

Art

UncleBuddy
Posts: 714
Joined: Aug 2013

restarted chemo at a much lower dose on Thursday. He's on 5-FU and leucovorin. Since he had such a hard time on the Folfiri and erbitux, they decided to ease him back into treatment by lowering the dose and eliminating a couple of meds for now. The cardiologist said his heart muscle has weakened from 47% to 37% (50% is normal). Chemo and/or radiation seems to be the culprit. Hopefully he'll tolerate this well and we can up the dose and add more meds back into the treatment. After having 3 separate hospitalizations in a month and 2 emergency surgeries, I think this is the bet way to do it. Originally he was thinking of stopping chemo, but he decided to keep fighting. So far his quality of life is better than it was, so we'll see how it goes. When he was on the erbitux and folfiri, he was so sick.

As his caretaker, I am overwhelmed but hanging in there. I'm frustrated with the healthcare system. BCBS is trying to deny payment to the hospitals claiming it was a pre-existing condition and he had to be on the plan for a year. He owes 1 hospital over $300,000. They're going to try fighting it. My brother doesn't follow doctor's orders and does what he wants. Doctor said to stay out of stores because his resistance is very low, but he doesn't listen. It's frustrating. Dad's dementia is getting worse. The hubby is aggravated at how much time I have to spend caring for my brother and dad. He feels my siblings should be helping me. I'm getting pulled at both ends. 

I feel like I have no right to complain with what most people on here are going through. I pray for the people on here. It saddens me to see how some people are struggling so much with this wretched disease.

Lin

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

marie, what a thoughtful, beautiful person you are. Thank you for this discussion. I have so much love and compassion for everyone here.

Jen great news on your husbands CEA. My wife and I are in the same boat as you on Valantines day. I go for my follow MRI 9:20pm on V day to what is really going on inside of me. I hope they don't find anything on your husband.

Art (Fat Bob) I am praying for another succesful liver resection. Please update us when you are able.

Brenda, I hope the Sir Spheres does the job. I have heard good things about it.

Forgive me for all of the others that I haven't mentioned but know that I care.

As far as me goes, my brother called me last knight and said my father had a stroke and he was stuck in the snow trying to get to the hospital

This morning my wife and I got into a big fight over stupid stuff. Cancer puts such a straighn on us. I told her I hope I died of cancer. I don't think I can ever get over making that comment and hope it doesn't come back to haunt me. I feel like I am on the edge of loosing all control.

jen2012
Posts: 1255
Joined: Aug 2012

Oh Jeff, I'm sorry.  We do that too...fight over really stupid things.  It's because we are scared.  You guys seems strong, this will pass and you will be okay.  I'm sorry about your dad.  Is he okay?

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

You are so thoughtful. It's terrible what the stress does to all of us. My dad seems to be ok. They are keeping him in the hospital for a couple of days. The doctor said he has a little weakness in his right arm but his speach has returned to normal.

annalexandria's picture
annalexandria
Posts: 2324
Joined: Oct 2011

and don't worry about your words.  We all say stuff in the heat of the moment that we don't mean.  And cancer is about as stressful as it gets.  There's a reason so many relationships fall apart under the pressure.  I'm sure your wife understands, and we sure as heck do.

LindaK.
Posts: 361
Joined: Apr 2013

It's hard to keep positive while going through so much.  My husband snaps at me and I just take a deep breath and try to ignore it.  He always comes around and apologizes.  I'm sure your wife knows it's the stress too. It sucks, I know.  Don't lose hope, it's what keeps most of going every day.  My husband, who has always been the positive person in our relationship, is really down and negative about this 2nd cancer, saying things like "I knew it would come back" so I have to now be the positive one, total role reversal.  We had a good visit with the surgeon yesterday, but he didn't sleep well last night tossing and turning thinking about all the information we got.  I can't blame him, but I slept really well feeling more accepting of the news and more hopeful.  I guess all relationships are like that, when one is strong, the other may be weak and vice versa.  Try to do something nice for yourself today, it will lift your spirits.  Maybe just talking to a friend for a few minutes, I know that usually helps me.  I have a good friend who is a 2-time cancer survivor and it's always good for my husband to talk to her and me too.  Those of us on this board understand, so just sharing your feelings here helps too!  Chin up

Linda

annalexandria's picture
annalexandria
Posts: 2324
Joined: Oct 2011

is that he not think of it as "coming back".  In many cases, the cancer has all been there from the very beginning, just growing at different rates until visible on the scans.  At least that's what my doctor said about my situation, and it helped me to think of it that way.  I don't why exactly, but it seemed more encouraging to think of it that way than to think it "came back".

Goldie1's picture
Goldie1
Posts: 257
Joined: Sep 2011

just got out of the hospital last week after spending 7 days in there fighting an infection.  He started his 4th round of Stivarga (regorafenib) and we will see his oncologist this Monday, weather permitting.  Most likely, Pat will be sent for CT scan to see if the Stivarga is working.  If it is not working, then the only option left is a clincial trial.  Yesterday, at a appointment with our family doc, she brought up how far Pat was willing to go regarding treatment and the matter of quality of life.  We both really didn't know how to answer that as we have been taking it one day at a time for so long.  Pat is sick and tired of fighting but not quite willing to give up and I will support any decision he makes.  

Thanks Marie for starting this thread!

Ellen

UncleBuddy
Posts: 714
Joined: Aug 2013

My heart breaks for you both. That's a really hard decision to make. I wish you peace in whatever decision you make.

Lin

jen2012
Posts: 1255
Joined: Aug 2012

Ellen..im sorry. I hope you get good news on monday.

jen2012
Posts: 1255
Joined: Aug 2012

Well liver function is almost back to normal. Ultrasound didnt show anything on the liver, but sludge in the galllbladder, so they are doing another test next week to look closer at gallbladder, so no avastin today in case he needs surgery.

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

That's really good news Jen

jen2012
Posts: 1255
Joined: Aug 2012

Thanks Jeff. I wasnt nervous about it until they took him in for the test. Luckily we didnt wait long for results. Good luck to you tonight with the MRI!

annalexandria's picture
annalexandria
Posts: 2324
Joined: Oct 2011

I knew that liver was going to be ok!  Should listen to Dr. Chels and Dr. Ann. Sealed

As for the gallbladder, that thing can go if it needs to, and he won't even miss it.

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

Yep they took my gallbladder 2 years ago and I never missed it. Its funny how many organs or parts of organs we can dispose of.

wolfen's picture
wolfen
Posts: 1213
Joined: Apr 2009

In response to your JBG question, I spoke to her last night. She had sent me an online Valentine. She is always so thoughtful, knowing Valentine's is another tough day for me.

Her liver enzymes had dropped about half since last chemo, so she restarted the original lowered dose. Keeping fingers crossed she isn't hit with too bad diarrhea, although it's the norm.

One day at a time.

Luv,

Wolfen

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

So kind of you to suggest updates. I've been lurking but not posting. I think I'm at the end of the rope with Zaltrap. I've been on it for  15 months and my last treatment just about did me in. I'm spending way too much time in bed the last few weeks and eating is literally a pain.  told my wife I'm not doing anymore of these treatments. She is of course so very supportive of my decisions. The Doc wants to do another biopsy and try something else. He really is a saint because he doesn't quit on people easily. I'm just tired. Hopefully the coming week will be an improvement over the last. 

My best to all of you,

Ron

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