updated- hubby-st.4 Lung-brain X2,at 51,begin.4/08

arasara · Regular Joined: 06 Mar 2009 Posts: 49

Kathy -

Thanks for posting your story. Your positive attitude is amazing and you help to give us hope Cool

Take Care and God Bless!
_________________
Caregivers to Pauline, age 72
Diagnosed with Stage IV NSCLC Adenocarcinoma on February 13th, 2009, passed away April 14th, 2009.

Fly high with the angels, Gram!!

Gillette · Posted: Fri Mar 20, 2009 4:36 am Post subject: still speechless

So, I am afraid if I say something out loud - or here- and it comes true , it will be my fault? This really bites Shocked

sigh
I am glad for giving any light to anyone, this is a crappy path, and I am in the dark often- like now
up, down, up.....
Razz

and now I gotta go to work...^^
_________________
Kathy: still loving Ben, as he rests with God.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2404

Gosh Kathy --- I hope I didn't give you the impression that if you say something and it happens, that it is your fault! Shocked

Not what I meant in the least, but I think you know rationally that isn't how it works.

This roller coaster ride gets exhausting and that's what you are on right now. I remember thinking that I didn't even LIKE roller coasters, so knew it wasn't going to be a good ride. Rolling Eyes

I'm sorry you are in a dark place right now and hope you'll go back up to the top of this 'coaster soon. Take the good times and embrace them as best you can.

You ARE brave in the face of this monster, but you're also human, so be gentle with yourself.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Gillette · Posted: Fri Mar 20, 2009 3:50 pm Post subject: Hubby stage 4....

No, PBJ, you did not give me that impression- maybe I did it to myself. We are under alot of stress right now.
Tonight, we are going to a benefit being thrown for Ben. He has done many benefits in his musical career, as long as he and I have been a two- some, and then married. I have transported him and equipment to and from local bars as he has done these events for local food pantries, friends who lost young family members, and for the families of folks who lost loved ones he has known. Now his musical friends have decided to do the same for him. WAS HE MAD at first- at me, didn't want to do it, it was dumb, and why couldn't they all wait 'till he was dead to do the benefit, it is uncomfortable. Yea, it is hard to have people tell you how much they care about you, but i thanked him for going through with it. I really appreciated that he was going to do it - so his friends could tell him how much they have cared for and admired him- instead of telling me at his funeral. And that was the last crabbing I have heard. Now he is doing it 'for me' - whatever- so long as he goes. I wish i had a way to show you the article they did in a local free weekly area paper, it was so nice, and gave him the honor he deserves. So, we go tonight, and he hopes to last till 9/10- ish- he fades quickly these days. I will be watching the others- and him closely- I do not think they realize how sick he is- some of the ego-maniacal musicians he has had contact with for so many years.
It will be interesting, tiring, and emotionally draining.
So, yesterday , I had to restrain myself - to not yell at an adolescent I saw smoking butts. I'd bet he was barely old enough to but them- those damned Marlboros! I so wanted to enlighten him- and then remembering the age , fought back a tear, continuing on my way.
I wouldn't have listened either.
Ben's scans all came out good, showing improvements on all tumors. The neurologist wouldn't hear of decreasing the dopey Keppra, so Ben started to decrease it himself. When he had his last treatment, the oncologist reduced it by half again, after hearing how much help the neurologist was. He is eating well, but lost a pound or two, probably because he has been eating more and taking in fewer of the milkshakes.
all this does not dispell my fears. They hang on me like silent insolent children, refusing to be ignored , and refusing to let go. He seems more unsteady on his feet, but says the numbness is getting a little better as the antiseizure meds reduce in his body. He says the chemo is not as harsh, and is still wiped low from it almost until the next treatment. He says he feels fine, but the head cold will not go, and he has a hundred excuses why his face looks puffy. He says he 's ready to go to our PCP for the 'head cold' but decides after they close fri- and are not open till Monday. He is on his 4th box of over the counter sinus cold meds. He asks me about everything I do- we live in a 2 bedroom mobile home. If I am in the bathroom, he speaks like I didn't tell him , and what am I doing. When I get on here, if he is not in the tub , or sleeping, he asks who I am talking to - sometimes every 5 minutes. I feel like I am ignoring him- or he feels like I am- and then he gets lower as he doesn't want to be any more of a "burden" than he is already.
So I get stuck, and lost in the dark, with no place to let it fly, unless I TAKE the time- he's watching me right now- wondering when the hell I' ll get off here- Crying or Very sad

and I fight it all the time, the tears, unless I stay busy- then he wonders what I'm doing.....and when i'll be done...
and on and on.
So I stay lost in the dark, and sleep alot when I don't have to get up before he does and get the computer work done for work-
I don't know,
I gotta go,
Thanks for listening- 'nough feeling sorry for myself.
_________________
Kathy: still loving Ben, as he rests with God.

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 352

Dearest Gillete
What strength we find in ourselves when we have too! Its a great site and Im glad you found all the loving people to support you..
My heart is with you all the way, as I read all your feelings step by step and it reminds me of stages I went through.
God Bless Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

Gillette · Posted: Sat Mar 21, 2009 4:59 pm Post subject: his plan

The lord grants gifts in mysterious ways.
It is always daskest before the dawn. Very Happy

And light came.....
I would delete my last post, seeing it as garbage, negative, and just venting-- but it is what is part of this normal cancer life I have come to understand, and to learn how to live with. I am not abnormal.

The event last night was a huge success on several levels. The place was packed with friends- 50 years of old friends, new friends, family, people who we haven't seen for years due to 'things happening' in life. Ben was thoroughly and completely overwhelmed by the sheer number of people- one after another- that threw their arms around his neck and told him how much they loved him. Guys and Girls alike. We were at the bar where it was held until 12;30am. Unheard of these days. Not to bed till 2 am- feeling it today- oh yea, but is fondly remeniscent of the old days of our youth, and the famed"all niters' " Ha Ha - damn near fatal these days! Very Happy

not in our 20's any more Rolling Eyes

Ben is still amazed at the amount of people there for his benefit, being very familiar with benefits as he has organized very many himself. He was also amazed by the funds raised for him, being familiar with a usual and customary donation raised. And, Ben could list several friends that weren't there, along with the ones gone before .
He was humbled, and moved by the whole event. As was I. It was what I wanted, and I feel like another wish has been granted to me.
Here Comes The Sun.
_________________
Kathy: still loving Ben, as he rests with God.

HulaMom

So glad the event went well, even better than expected too. And glad he got to see all his friends. I recently started up a facebook page and it's amazing how many friends I find daily! Friends help too.

The venting the other night was normal. I used to feel this way caring for my mom. It IS part of the cancer trip and I am glad you left it here, so that others can see all the sides to this wild beast. If we only show the good, we fall short on our goals of getting a cure. If all we put is bad, people avoid us. So we have to balance things out as it is in real life. Crap happens, things get better, then they go down. And come up. If venting helps us, so be it. Sure helps me! So vent as you need...
_________________
47 YOA female. NSCLC IV Squamous cell. dx 7/07. Radiation, chemo (carboplatin/Taxotere). Cancer free 3/08! Cancer mets to liver 12/08. Started Tarceva 1/26/09-4/10/09, liver tumor tripled in size. Started Alimta. Down to 84 pounds! Stopped Alimta and started Gemzar on 5/2. Stopped chemo went into HospiceJuly 24 2009, with prognosis of 3, maybe 4 months left.

dano

Hi Kathy;
Great to hear that things went so well, this will go a long way to salve past pains and some of those to come.
God Bless
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

Gillette · Posted: Sun Mar 22, 2009 6:43 am Post subject: thank you my friends

And the gifts continue- Ben received a phone call the very next day from a neighbor(when he was Cool

who is in her 80's now, and had seen the article about Ben in the free paper. What a lovely conversation they had. Later, I got home from a quick errand, and Ben had a visit from his D& D master from when he used to play with them. He is re connecting, and is in awe -or shock Shocked

- as he puts it at how many 'friends he has' . The phone never stopped ringing saturday, he has more spark than I have seen since last summer, and his first remission. This will certainly make the times to come very different from what they would have been, if only for him to understand his value.
He also, at the party, received his custom made guitar he ordered and paid for 3 years ago. It is a 4 string "Tenor Telecaster" he calls it, and IS ABLE TO PLAY!!!!!!!!! even with the neuropathy - the action is so easy. Another gift of soul given back to him- his guitar. It is beautiful, and Hand Made, and fits him like a glove. God stepped in and breathed the life of music into this work of art, trust me. Iam saying my thankyou prayers , and keeping an even keel at the same time... Embarassed

You also cannot trust cancer.
I did want to erase the last- but once some one posts- oh well- it was meant to be- to show the changing struggles for us all dealing with this cancer demon. I dislike sounding like that, but since i so easily forgive others- guess I better give myself a break too.
_________________
Kathy: still loving Ben, as he rests with God.

dano

What a blessing Kathy and you know where it came from.
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

Gillette · Posted: Sat Mar 28, 2009 3:03 am Post subject: hubby stage 4...

The roller coaster ride continues, and i used to love roller coasters...
The puffy ness in his face is still there, we were sent to 2 docs thurs about it- PCP wasn't comfortable treating him, the oncologist first wanted another CT scan, but decided to do nothing , and we left. There seems to be alot of thought given to how much of the contrast dye he has received, and how much more should he get. Ben says his feet are getting better, but his walking appears to everyone to have gotten worse, it is almost like his legs are weak. Yesterday was 16 days from the last chemo- and he spent the whole day on the couch, sleeping. Not his MO of late. I feel like I did before he was diagnosed, when I told a co worker it seemed as if he were turning into a sick old man before my eyes, but I had nothing to base it on, but instinct.
Oh, Well, work is also an a-1 pain, and the difficulty setting is about as high as it will go, with the stress level at events there set on Hyper mode.
I have a second grandchild due , I have been informed, in October, and no she isn't with this father either, and ...
sigh Confused

I pray, and pray, and love them all..
Never enough hours in the day...
Then , tonight, to sleep and dream of a now- well- Ben shuffling me out of his life... Sad

I feel attacked on all levels, at times, and thank God above for you here, Prozac, and Chocolate.
_________________
Kathy: still loving Ben, as he rests with God.

dano · Posted: Sat Mar 28, 2009 3:18 am Post subject: Re: hubby stage 4...

[quote="Gillette"]The roller coaster ride continues, and i used to love roller coasters...
The puffy ness in his face is still there, we were sent to 2 docs thurs about it- PCP wasn't comfortable treating him, the oncologist first wanted another CT scan, but decided to do nothing , and we left. There seems to be alot of thought given to how much of the contrast dye he has received, and how much more should he get. Ben says his feet are getting better, but his walking appears to everyone to have gotten worse, it is almost like his legs are weak. Yesterday was 16 days from the last chemo- and he spent the whole day on the couch, sleeping. Not his MO of late. I feel like I did before he was diagnosed, when I told a co worker it seemed as if he were turning into a sick old man before my eyes, but I had nothing to base it on, but instinct.
Oh, Well, work is also an a-1 pain, and the difficulty setting is about as high as it will go, with the stress level at events there set on Hyper mode.
I have a second grandchild due , I have been informed, in October, and no she isn't with this father either, and ...
sigh Confused

I pray, and pray, and love them all..
Never enough hours in the day...
Then , tonight, to sleep and dream of a now- well- Ben shuffling me out of his life... Sad

I feel attacked on all levels, at times, and thank God above for you here, Prozac, and Chocolate.[/quote]

Oh Kathy;
I do feel for you and all your going through. Poor Ben going through all this, he must feel like a punching bag not knowing who or what is going to hit him next. Please stay in touch share what you are going through, maybe through it all something will happen to improve the way things are, my prayers are going out to you and Ben tonight.
God Bless
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

MnDixie · Regular Joined: 15 Dec 2008 Posts: 28

(((((Kathy)))))))
You are doing such a great job caring for your ((((Ben)))). All you can do is ~Love~ and the rest will take care of itself...
Sherry

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2404

Sending hugs of understanding to you Kathy. It's a nasty ride, but you are doing very well. Never feel like a vent is out of place here. We share your highs and lows with total empathy. Cancer sure puts one in a very lonely place. Too bad life around you can't be more gentle. I extend my empathy to THOSE issues too.

Are they attributing the swelling to the dye? There is a condition called Superior Vena Cava Syndrome that causes facial and upper body swelling. Here is a link for a professional explanation: http://cancergrace.org/lung/2008/10/25/svc-syndrome-intro/

God bless and keep you,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Gillette · Posted: Sat Mar 28, 2009 6:43 pm Post subject: hubby, stage 4...

No, the dye wasn't mentioned. It went from a sinus infection, to spreading cancer in his chest outside the lung, to 'it doesn't fit the bill' and 'we aren't going to do anything' and we were sent home. I get used to the 'new normal' of living with cancer, and then it flip flops all around... I feel like I did when I had a two year old under foot- if the child was being good, you wonder when the temper will start- and when they are in full swing, you hang on until the storm passes. Guess it is much the same- sure feels the same, with a much different end game tho....
I really appreciate your support- this can be a really lonely place, and you all make me remember I am still alive, and human, and doing okay. It's a tough place to be, on this cancer road; there are no guides, no step by steps, no instructional manual, I just love this man; no matter what.
I thank God every day for this forum.
Oh, Ben and i talked about the dream crap- and he was having the same kind in reverse: I got rid of him because I couldn't handle his cancer any more... too wierd what our subconcious can do when we sleep...
I gotta go - thanks for the support, again, my friends.
Much Love-
_________________
Kathy: still loving Ben, as he rests with God.

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