Update on life, and Call on Congress news UPDATE

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Bev G
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Update on life, and Call on Congress news UPDATE

Postby Bev G » Fri Mar 02, 2012 10:04 am

Hello CRC loved ones,

I haven't been able to be around much because I have been either being a caregiver to husband with stage IV lymphoma or sleeping (why do I prefer sleeping? :roll: ) Despite his early claims to be willing to take lots of Ativan to counteract the massive steroid effect, that promise was abandoned, so I do my best to lay low on those steroid days, because he gets a bit scary. Also, his promise to go "see someone" re: psychotherapeutic support and medication for what is most likely untreated bipolar issues has by the wayside. It's fun, fun, fun around here these days. He has finished the 3rd round of his chemo, which seems to have no bad effects on him at all (it is NOT CRC chemo, that's for sure), other than the steroid effect. Somewhat contrary to our oncologist's wishes he is working three half days a week, which I now think is good in many ways. Use your imagination :D . Cancer-wise, I'm just not sure how that is going. He just reported to me from work that he's lost 2 pounds in 2 days (though he eats like a horse) so that is likely cancer-metabolic activity...and his cough is back big time, so who knows? There are no blood markers for lymphoma. He is going to get a new PT/CT 2 weeks after his 4th round, so we'll know then a little more about what is going on.

I had another CEA scare at the beginning of November (8.2) and was to have had it repeated at the beginning of December, but that was when all hell broke loose around here, and I was never able to get around to it---sort of put it out of my mind, because the thought of me having a recurrence the way things were with him was just too much to even think about. Anyway, I finally had it repeated last week and it was 6.1! Yippee and thank God. I suppose I will just always sort of hang around on the high side. I am trying so hard to cut back on smoking, with my goal, of course, to quit, but what a nasty addiction!. A friend of mine sent me an oboe reed to keep in my mouth, which is incredibly helpful...I guess I've cut back on smoking by 25% just keeping it in my mouth and breathing air through it rather than smoke. I'm intensely curious to see what my CEA would be as a non-smoker.

The long-timers on the board will know what a complete life-saver my son Dan has been to me since I was diagnosed...HE was the one who went to every chemo with me, HE was the one who waited for me to get out of the surgeries, HE was the one who recognized the time I was critically dehydrated and insisted an ambulance be called ( as I was semi-conscious in bed), against my husband's wishes, and when I was placed directly in Intensive Care. Basically, he has been an incredibly loving and faithful caregiver, sticking up for me when needed, keeping and eagle eye on everything, encouraging in every way (and as my therapist said, acting as my husband should have :( ) Well, he is moving to Vermont within the next couple of months. He's wanted to live there since he was a child, his wife's job was able to be transferred up there, and as I have told Dan repeatedly, he was NOT born to take care of me. It is high time that he began to live his own life. I celebrate this move for him, but of course, am anxious about it as well. Just wait until he sees how the disgusting, selfish part of me can be totally buried with the joy I feel about him working toward the life he so richly deserves! There are even teaching jobs available in Vermont (as he hasn't been able to find one here despite more than 2 years of looking!)

So, that's about all from this corner of Pittsburgh. I feel well, except for a feeling of overwhelming fatigue, all the time. A part of me keeps worrying that it's cancer related, as it's that sort of overwhelming fatigue I felt before I was diagnosed, but it appears not to be that, I guess, so I am just trying to take my own advice...day by day, hour by hour...or minute by minute when things are really bad.

Which brings me to the final metaphorical slap in the face. I had told my husband about call-on congress for more than a year, because I had SO wanted to go last year. Last year, I was just a couple of weeks off chemo and it just really wasn't a good idea for me. This year, with the advent of his cancer it looked like it wouldn't be as well, but then I carefully calculated the timing of his chemo, figured he would be two weeks post chemo and would be fine for me to be away for 3 days. I told him again a month ago. I told him again a few weeks ago. I reminded him a week ago, and he threw a complete and total hissy fit. I'll skip all the sordid details. I am a firm believer in choosing battles, and I chose to fight this one, but got nowhere. I will not be able to attend. I have so much to say about it that I can't say anything. Anyone remember the movie "Rain Man" where Dustin Hoffman's character kept a notebook about "serious offenses" that had been committed against him? Well, this one has already gone in my book, and there may be some big surprises around here one of these days. And that, is that.

Love to you all. Keep fighting, but try to find a laugh while you're doing it.

Bev
Last edited by Bev G on Sat Mar 03, 2012 2:23 pm, edited 1 time in total.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

deb1223
Posts: 65
Joined: Thu Jul 07, 2011 10:36 am

Re: Update on life, and Call on Congress news

Postby deb1223 » Fri Mar 02, 2012 10:50 am

Bev, I feel for you so deeply. Having to fight cancer as well as your husband must take a lot out of you. I lived in an abusive marriage for 25 years. The world was suppose to resolve around him and nobody else, I was just miserable. Even lost my teeth to disease because he didn't feel I was important enough to take care of. He finally ran off with a girl just a couple of years older than our daughter. Oh lucky me! Now I have a wonderful husband that loves me unconditionally and has put everything he can into making sure I receive the best care possible. I will lift you up in prayer, praying that you get the relief and care you need. Sorry to hear your son is leaving, but do understand that he deserves to live his life.

Debbie
52 Yr. old Female, DX July 2010
Stage IV CC, 21 mets to liver, 1 to lungs
12 Rounds Folfox
To date no surgeries
Enlarged spleen
Been on Avastin only since Mar. 2011
I WILL SURVIVE WITH GOD'S HELP!

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Guinevere
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Re: Update on life, and Call on Congress news

Postby Guinevere » Fri Mar 02, 2012 10:55 am

Bev,
Hon, you are rackin' up stars in your heavenly crown, that's for sure. I can't even imagine but I do know I pray for you daily.
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

Mona
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Re: Update on life, and Call on Congress news

Postby Mona » Fri Mar 02, 2012 12:14 pm

Dear Bev, so sorry that the life cannot get easier for you. Please think one more time about going to DC, you will have a blast there with our clubbers. These are the moments life is worth living.
Much love,
Maria
At age 46 DX 7/21/10 Stage 4 colon cancer with mets to the liver.
8/10 Folfox 6 tx
11/10 Colon/liver resection 1/29 nodes
12/10 Folfox 6 tx, NED
3/11 chemo done
11/11 recurance liver
12/11 liver resection/Hai pump
01/12-07/12 Fudor/Folfiri

Peteswife
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Re: Update on life, and Call on Congress news

Postby Peteswife » Fri Mar 02, 2012 1:31 pm

Bev, I really really feel so sorry for you! I wish I could be nearer to be there for you. I know what support I give Peter and how he would have handled everything if I was not there for him. Between him with the cancer and my doggie Mini (Miniature Pincher) with diabetes, I would easlily adopt you and be there for you too!

I am sorry about your son moving - but we all have to face that - that is true, that the kids start living their own life. That is our first wish for our kids bringing them up, that they can be stable and look after themselves one day. I fear the day that my nest is empty.

I really wish that things could be different for you! Thinking of you!
Love from us
Ilse and Peter (and Mini)
After 8,5 years living with CRC, Pete passed away on 17/4/2012. We had lots of quality time, we said our goodbyes! I am at peace because he doesn't suffer anymore! He is now better off with the Lord! We will surely miss him very very much!!

Bob_Weiss
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Re: Update on life, and Call on Congress news

Postby Bob_Weiss » Fri Mar 02, 2012 1:53 pm

With all of the anxiety-inducing events going on around you, it is miraculous that you remain mentally able to write us a well-written & coherent update. Hopefully, things will eventually work out in a positive direction. By then, you will have the material you need to write a good play; casting some of us in the production. Hold on!
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

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CheeseHead
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Re: Update on life, and Call on Congress news

Postby CheeseHead » Fri Mar 02, 2012 2:12 pm

what bob said: hold on and all the best...

love
cheese
    2008
    10 Stg 4 colon srgry
    12 Xelox/Avast
    2009
    05 Liver srgry
    -12 Xelox
    2010
    05 Xelox
    08 Iri/Vect
    11 Liver srgry
    2011
    01-05 Iri,Vect,Xeloda
    09 CyberKnife
    2012
    03-07 Ph I trial
    08-11 Regorafenib
    2013-
    Xeloda
    Vecti
    Iri
    Xelox

lauragb
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Re: Update on life, and Call on Congress news

Postby lauragb » Fri Mar 02, 2012 2:58 pm

You are one strong cookie. Stay well and keep up the good fight against the disease.
To serenity in your future.
Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

RixInPhx
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Re: Update on life, and Call on Congress news

Postby RixInPhx » Fri Mar 02, 2012 3:32 pm

Hang in there, kiddo.
Your sunshine is a beacon to all of us.

-Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192

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Ashlee H.
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Re: Update on life, and Call on Congress news

Postby Ashlee H. » Fri Mar 02, 2012 9:42 pm

It wasn't so long ago one of the posters (I think her name was Judy - she had a lot of cats) wanted to know if she should take a short trip she had planned for and was so looking forward to - but her husband was in active treatment. And, what did most of us say...go!! Your trip is only for 3 days, and he is well enough to work part-time. He knows how to use a phone. Meals are in the freezer. He can stay in his office while you are gone so he will be close to the hospital. I don't know how long treatment will be for hubby, but are you going to stop living? Ok, I know you have made up your mind, and you are not going. Maybe the fatigue you are feeling is depression over not having any kind of life anymore? Your son and his wife (and grand dog) are leaving. You quit work because of cancer. Your foot issue prevents you from doing a lot of things. I don't think 3 days to enjoy something very important to you is asking too much. But, again, I'm single...and I guess single for a reason. Oh how I wish you'd change your mind...but I know how it is with choosing your fights. But right now you are cancer free - and I don't think you have been able to celebrate that fact. There were so many times we thought you weren't going to make it. But, you did! You are alive. Embrace what life has to offer.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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Bev G
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Re: Update on life, and Call on Congress news UPDATE

Postby Bev G » Sat Mar 03, 2012 2:29 pm

Hi all and thank you again for all the support and encouragement! My good, great, dear friend Ashlee is so right. Not that she hadn't made these points on the phone, but there was just something about seeing them down in black and white that caused it all to hit home in a different way. So, I took the "fight" back to the wall, and I AM going to call on congress. OMG! She has actually put her (very sore, very stupid) foot down. Who would ever had known that so much guilt could be thrown around in an hour---he would never leave me alone while I was on chemo!!! Um, what about when you went to Cleveland for an elective conference? Oh. Anyway, yippeee for me, I'm going. Period. I cannot wait to meet everyone there. Also, added perk, I will be staying with my best friends in Falls Church, VA while I'm there--the husband is a psychiatrist, and that's gotta help :wink:

Thanks again, everyone (most especially beloved Ashlee)

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Suze
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Re: Update on life, and Call on Congress news UPDATE

Postby Suze » Sat Mar 03, 2012 3:26 pm

You go girl! Good for you. And have a great time, too. Susan
Dx 5/07 Stage IV 59 y/o
6 mos Folfox, Avas., erb.
Surg. for colon, liver mets 1/08
Folfox & Avas. 2/08-8/08
Liver met 10/09, Iri 11/09 - 7/10
SBRT 4/10, 12/10
30-40 lung mets 4/11
Irin./erbitux 5/11-8/11
xeloda/avastin 8/11-2/12
xeloda/erb 2/12/-4/12

Surroundedbylove
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Re: Update on life, and Call on Congress news UPDATE

Postby Surroundedbylove » Sat Mar 03, 2012 4:01 pm

So glad you are going Bev!
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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juliej
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Re: Update on life, and Call on Congress news UPDATE

Postby juliej » Sat Mar 03, 2012 5:24 pm

Bev, I'm so happy that you're going to the Call on Congress (and thanks, Ashlee, for giving her a gentle shove)!

Enjoy the time away from "Mr. Grouch" and do something fun with your best friends in Falls Church! I bet you'll be amazed how much this raises your spirits!

Love,
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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Gaelen
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Re: Update on life, and Call on Congress news UPDATE

Postby Gaelen » Sat Mar 03, 2012 5:45 pm

Bev G wrote:Hi all and thank you again for all the support and encouragement! My good, great, dear friend Ashlee is so right. Not that she hadn't made these points on the phone, but there was just something about seeing them down in black and white that caused it all to hit home in a different way. So, I took the "fight" back to the wall, and I AM going to call on congress.


Bev, I'm so glad that you came into this decision on your own terms, and weren't guilted or bullied into sacrificing something you want to do.

In the story Ashlee mentioned, I think my comment to the caregiver was something like "he's an adult, right? what's the worst thing that could happen? are you expecting natural selection to kick in while you're gone?" ;)

I realize that there are people in every forum that think that sometimes advice and direct statements that might ask "what are you thinking?" or, as Ashlee put it, "are you going to stop living?" are too blunt, or lack compassion or are insensitive. But sometimes seeing those statements in black and white does make people step back, take a hard look at what's going on, and change course.

I'm glad you realized that you deserve to live your life, deserve time for you, deserve this trip. Looking forward to meeting up with you and everyone else in DC!
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment


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