HELP!! + 12/5 BRIEF UPDATE

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Bev G
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Location: Quechee, VT

HELP!! + 12/5 BRIEF UPDATE

Postby Bev G » Tue Jan 03, 2012 5:02 pm

Hi guys:

Some of you saw, and some of you didn't, that I posted last week about having some pretty serious marital issues for quite awhile, actually since I was diagnosed in 12/9. My "DH" has been largely absent emotionally, and actually cruel at others. He had minor surgery 4 weeks ago today and has been unbearable since then. About 2 weeks ago I seriously started worrying that something wasn't right, and told him he needed to go to the doc. Most of the old-timers around here knows he IS a doc, so of course he wouldn't listen to me. Last night I just put my foot down and took him, without discussion, to the ER, because I was so sick of the whole thing. After blood work and a CT he was found to have something horrible going on. The 99% assumption at this point is that he has very diffuse spread of a Lymphoma. They don't operate on these...just chemo. It MAY have spread to his bone (pelvic/acetabulum) They haven't scanned his full chest yet, but there is a strong suspicion of thoracic issues, because of the cough he had but ignored for about 6 months, and there is a mediastinal node. There are giant nodes everywhere. They are excising one tomorrow to get the pathology, which apparently will help with staging him and determining the appropriate chemo.

I keep thinking of one of my chemo rounds, where his behavior towards me was so awful I actually thought "I wish he would just get ONE round of chemo, just one, so he would know how this feels.". Now, I can't get this horrible thought I had out of my mind. I had determined that our marriage had almost become poison to me (like chemo)---and now this. I would never leave someone who was ill and needed my care.

Any of you prayers out there---PLEASE, PLEASE!! I don't want to join the "wives of stage IVs" as a stage IV myself. I.FEAR.I.AM.AT.THE.END.OF.MY.ROPE.AND.GOOD.HUMOR.

Thank you all.

Bev

UPDATE: Well, I could never, ever thank each and every one of you who responded to my plea enough! It warmed my heart so, it made me feel so much less alone and terrified, and gave me emotional strength to try to get through what surely feels like a nightmare just one day at a time, BREATHING ALL THE WAY :) . The news today worsened, in that they believe the Lymphoma has metastasized to his bone marrow, and believe we will find next week at the PET/CT that his lungs are seriously affected. Next week he will have the port placed (the ridiculous covering onc wanted to give him chemo through a PICC--what a great idea if he does in fact have bone marrow disease/suppression). I nixed the PICC, said port, absolutely and asked them to do the bone marrow biopsy while he is sort of "under" for the port, as these biopsies are really, really painful. His lab work looked a little worse today than yesterday, and it amazed me how much worse his cough is in just over the last 3 days. He now has generalized edema (but has gotten a lot of IV fluid over the last 3 days) and his belly looks more swollen to me today. They excised a 4x4 cm axillary node today, the path for this node should be back by Monday. I brought him home about 8 tonight. We have a meeting with my beloved onc (his new onc) at 8:30 Tuesday am. I think I walked about 5 miles back and forth today at the GIANT hospital and I am exhausted and off to bed now. Once again, thank you all so, so much. I have and am seriously considering all advice given me, and especially working on letting go of the guilt associated with wishing him a round of chemo, and of thinking all the dramatics after his hernia surgery were just that, dramatics. I had just started seeing a therapist a few weeks ago, re: the marriage issues, so that was great timing that I'm already on board with someone, and I hope he will help me.

It never ceases to amazing me how we, as this disparate group of people from all over the world, can and will rally around each other in a time of need. I feel so incredibly blessed to have all of you in my life, and I thank you all again from the depths of my heart and soul. Your words, thoughts and prayers are so healing, and so cherished.

Love, Bev
Last edited by Bev G on Thu Jan 05, 2012 11:16 am, edited 2 times 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

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Jimswife
Posts: 904
Joined: Fri Nov 18, 2011 9:53 am

Re: HELP!!

Postby Jimswife » Tue Jan 03, 2012 5:11 pm

Sorry to hear this Bev , do keep us updated x
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

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BrownBagger
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Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: HELP!!

Postby BrownBagger » Tue Jan 03, 2012 5:11 pm

I'm so sorry to hear about that, Bev. Well, about everything. Some dilemma.

If I prayed, I'd pray for you. Since I don't, here's wishing you the peace and serenity that you deserve.

Take care! (And good luck to your husband. I hope it's not cancer and if it is, not metastasized cancer.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

ams5796
Posts: 2297
Joined: Fri Feb 06, 2009 10:07 am

Re: HELP!!

Postby ams5796 » Tue Jan 03, 2012 5:19 pm

Bev, I don't even know what to say to you except we're here for you. That is a really tough situation. I do hope for the best possible outcome for you and your husband.

All the best,
Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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CRguy
Posts: 10110
Joined: Sun Feb 10, 2008 6:00 pm

Re: HELP!!

Postby CRguy » Tue Jan 03, 2012 5:24 pm

Sending prayers and ++++ vibes your way Bev and to your hubby.
We are here for you in whatever capacity we can be over the 'net, but sometimes virtual is not enough.... be sure that YOU maintain your own personal "real life" support system right now, as you are being called upon to do double duty...patient and denmother.

In Harmony with you
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Dori
Posts: 426
Joined: Mon Jun 23, 2008 10:29 pm

Re: HELP!!

Postby Dori » Tue Jan 03, 2012 5:25 pm

Hi Bev,

I'm so sorry to hear this. I certainly hope things are not as bad as they sound right now. And of course I'm sending you and your husband all of my best wishes.

Please don't forget (because I know you already know this) that any thoughts you've had about your husband undergoing a round of chemo have absolutely nothing to do with what's going on with him now, in real life. Thoughts are just thoughts. If they were more than that, I would be in big trouble! :shock:

I wish I could do something to help.

Dori
Last edited by Dori on Tue Jan 03, 2012 5:33 pm, edited 1 time in total.
47 years old
Stage IIIC, high grade signet ring, 14 out of 18 nodes affected
Colon resection 5/15/08
FOLFOX 6/08 - 11/08
Mom to a great 11 (!!) yo girl
Currently NED

DaniInMaine
Posts: 220
Joined: Mon Jun 28, 2010 9:38 pm
Location: Bangor, Maine

Re: HELP!!

Postby DaniInMaine » Tue Jan 03, 2012 5:29 pm

Oh Bev, I am SO sorry to hear of your problems and this most recent development!! We've been out of town since the 20th and had agreed that we'd leave all technology behind on this trip.

First and foremost (and you should KNOW this is true), felings of guilt for a perfectly normal human thought or reaction is just going to drain more energy and, in MHO, is totally unwarranted so please, let that one go. We all think things, but that thought didn't make this course of events happen. And, in fact, it was your insistance and taking him in that found the problem and is responsible for action to be taken.

I can't begin to imagine what you're feeling, living with, or what your husband's reaction to all of this is and/or will be. But I do know this....if things are seriously not right for you, then you need (and will continue to need) to do what is right FOR YOU. But for now, like every other day, remember to breathe and try to take it one step at a time.

How has he taken this initial news? When do you get more firm results (sorry, you may have said that in your initial post, but that wasn't what registered as important to me when I first read it)? This could serve to pull you closer together or further apart, but only time will tell. Also, remember that you can't "fix" or own your husband's 'reality', his responses or his thought processes. Above all, my friend, seek some outide, impartial help to get you through this period....and do it tomorrow. Please drop a line and let us know what's happening and how you're doing. In the meantime, I'm off to see what I've missed on the boards over the last 2 weeks. Cyber hugs, Dani
Dx: 4/21/10. LAR: 5/24/10 Stage llb (T4 N0 M0)
Chemo Folfox 6start date: 7/13/10 5 weeks ChemoRadiation Tx 9/27 Final round of Chemo 01/12/11!

so-scared
Posts: 1059
Joined: Wed Jun 01, 2011 12:53 pm

Re: HELP!!

Postby so-scared » Tue Jan 03, 2012 5:38 pm

Oh, Bev. I am so sorry you are going through this. What a difficult situation. I echo what has already been said that you in no way caused this situation. It is a series of unfortunate events. My heart goes out to you! Hang in there and reach out to others for some support for yourself. I believe you could benefit from a HUGE hug!!

So-s
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

Rick7
Posts: 322
Joined: Sun Mar 15, 2009 5:38 pm
Location: Los Angeles

Re: HELP!!

Postby Rick7 » Tue Jan 03, 2012 5:48 pm

Hi Bev,
I am so sorry to hear this news.
I know it is not an excuse for his past behavior, but maybe he had been hiding discomfort and pain for years and it came out in his words towards you.
Your wish had nothing to do with it - if it did - wish it away.
This journey is really hard on relationships.

I am sending positive vibes and virtual hugs your way.

Rick
Last edited by Rick7 on Tue Jan 03, 2012 5:51 pm, edited 1 time in total.
CC DX 1-7-09 at age 40 - Stage IV, T4-N1-M1
Surgery 1-16-09 - Folfox6 Feb-Aug 2009
Clear scans - PET/CT 9-09, CT 3-10, CT 9-10
Head MRI 3-11, CT 9-11
Head CT 2-12, PET/CT 9-12

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Gaelen
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Location: CNY
Contact:

Re: HELP!!

Postby Gaelen » Tue Jan 03, 2012 5:49 pm

Bev - you KNOW you did not cause this. However, the strain of all of it has obviously taken a toll.
Is there someone there you can talk to, a counselor who can help you sort through things?

My sister - someone who really didn't "get" cancer or what it took out of me - was dx'd in August with Acute Monocytic Leukemia. After several rounds of chemo, she's also found out that there is no bone marrow match donor for her in the national registry. She still doesn't really "get" cancer, even when it's her own, and it's scary and frustrating to watch.

My strongest thoughts to both you and your husband as you sort your ways through this.
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

SunGold
Posts: 133
Joined: Sun Aug 21, 2011 11:56 am

Re: HELP!!

Postby SunGold » Tue Jan 03, 2012 6:12 pm

Goodness, this is shocking. Bev - I look forward to each and everyone of your posts as they are so comforting. But not one like this. I am so sorry to hear this and I can only wish that this would turn out to be a false alarm.
But mostly, there is no way your wishing he could experience chemo, caused any of this. Although I do believe that when you pray and comfort others (as you have for so many of us), the positive effects come doubly back to you. Some sincere prayers and positive vibes coming out to you. I wish you lots of peace.

-Sungold
Caregiver to DH,42 at Dx 8/11 mCRC Stg 4 liver mets
Surg/Rad not option.
Xel+Oxi 8/11
Tumors shrink
Oxi end 2/12
Radiatn 3/12, V.tough
5/12-Incr in liver mets,possible lung mets, no surg.
5/14 Folfiri+Erbitux
June 2012 - Passed away, Gone too soon.

gjsabmor
Posts: 174
Joined: Tue Sep 06, 2011 4:26 pm
Location: Dallas, Texas

Re: HELP!!

Postby gjsabmor » Tue Jan 03, 2012 6:14 pm

what a terrible predicament ... I am so sorry to hear, Bev. Until a formal, final diagnosis is made, it's OK to be hopeful that this may be a more favorable alternative to diffuse lymphoma. Even if it is as suspected, I am sure you know it's not a consequence of your words. Unfortunately, real life can sometimes be more twisted than any fiction.

I am a caregiver, not the patient, but can honestly tell you that cancer exerts an incredible burden on ALL relationships ... give yourself a break.
Mom diagnosed w/mCRC 27 June 2011
Currently in treatment (Folfox + Avastin)
Histologically low-grade adenocarcinoma
2 out of 15 lymph nodes positive

KimT
Posts: 686
Joined: Sat Feb 20, 2010 8:53 pm

Re: HELP!!

Postby KimT » Tue Jan 03, 2012 6:28 pm

Been there. My husband refused to go with me when I got my hair shaved off because it was falling out to chemo. I cried in the chair not because I was losing my hair, but because he refused to support me in it. I've wished cancer on him.

I pray that this will be a time of healing and reconciliation for the both of you. I will pray that he realizes how he has treated you and becomes a different person. And that you will have a forgiving heart. It's hard I know. I told my husband I would never forgive him for not going with me. If he had had an affair, it would have hurt less.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

simon031003
Posts: 553
Joined: Mon Jan 17, 2011 10:17 pm
Location: Central Texas

Re: HELP!!

Postby simon031003 » Tue Jan 03, 2012 6:46 pm

Bev,

I just don't even know what to say. I am so sorry that you are going through all of this at once. It seems like when it rains it pours. I truely hope that you find happiness again or at least peace. As others have said, you didn't wish this on him. I am hoping that once the shock wears off maybe you can both go to a counseling session together. It seems like both of you have both seperate and joint problems that need to be discussed. Maybe this will turn out to bring you both closer. Praying for you.
Michelle wife of Esteban
T3N1M0 12/31/10
Folfox 2/22/11
9/19/2011 confirmed cancerous lymph nodes via biopsy; started FOLFIRI with Avastian turned into FOLFIRI with Ebritux now FOLFIRI w Vectibux 12/12 mets to liver and pancreas
2/17/13 resting in Heaven

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dianetavegia
Posts: 2722
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: HELP!!

Postby dianetavegia » Tue Jan 03, 2012 6:46 pm

Oh Bev.... this is so awful. I AM a prayer, a real believer in the power of prayer and I WILL pray.
Please, please don't think your thoughts caused this. We all think those type things when others are not being kind or are downright stupid. One out of every 3 people will get some kind of cancer in their lifetime and if this is cancer, it's just the luck of the draw.

Praying right now!
Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2


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