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

dano

Hi Kathy;
Sorry to hear the news, just not what we wanted to hear at all, it is kinda like cancer 24 and Ben 0 and it just scored again.
I went for my chemo today and took everybody my homemade cookies, they were a hit. Had myself ready to talk to my Onc about my chemo status. Then curve balls were thrown. My Onc was doing her week at the Hospital, her sub just had a baby yesterday, then there is Dr. Yee who normally doesn't listen... had a young pitch hitter doing his heavy lifting (the physical check up part, who I told that I wanted to ask my Onc about my Chemo future. She brought in Dr. Yee to talk to me and this is basically what he said; right now the Alimta seems to be holding the cancer in check and the fear is if we back off the cancer might grow and may not check up again against Alimta, and the only two problems I have with chemo is my veins hiding and I'm tired for most of a week starting a couple days after chemo. And I live through that fairly easily most times. I would like to try to go to once a month or every 4 weeks if possible but only if the docs agree. I think I can talk them into what ever I want but I do want what best for me. On the other had this is still there best guess there are relatively few people here in Hawaii who are as lucky as I am with getting along so well with chemo. So, do I take the chance on screwing it up?
They have no idea how long this will go. I know I have had several people claim that I am healed already of cancer, how ever God has not directly told me that I am healed, and it's not like I don't have faith in Christ for God has shown me how blessed I am this last year and the crazy ways he has provided my needs and then some, it has been amazing. The faith I have is that he will keep me around to do his work with or without cancer, It's just that he needed to adjust my attitude, and it's been adjusted for sure.
Kathy I hope things get adjusted for Ben and yourself when it comes to the cancer issue. Love you Guys!
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: Wed Dec 10, 2008 9:22 pm Post subject: hubby st4 to brain...

Hey, Dan - Sorry you had the same kind of day! It is definately humbling, this cancer beastie: it never misses the opportunity to remind us that it IS in God's hands , eh? Confused

and there isn't thing-one we can do about it.
Hello all- this road of cancer is growin' frost heaves as bumps here...
Well, after yesterday-
I learned not to expect anything- to suspend as many predictions and thoughts as I can, until the facts are read to us. I also learned that good news (in this new life of ours) is when there is still treatment to offer. "It is not the end of the world," the oncologist said, "but we can ill afford to wait to begin treatment." So, it is that much more apparent to do what is good, and right, and heartfelt. I worked all day today, telling most I was not ready to talk about it at work. I needed to work- to do what I had to do, and just let go of it for a while. And it worked, I feel better. I feel Ben is hurt- he was feeling so much better- but to have the tests all come back that he is worse, and needs to restart chemo... He said he had expected worse news than we got, and was surprised when I voiced that I had hoped for a continued remission. I gotta sleep..
Good night, my friends, and God Bless- Know my prayers go with you all, and I am thankful to have this place to be me.
kathy
_________________
Kathy: still loving Ben, as he rests with God.

azsun · Regular Joined: 23 May 2008 Posts: 22

Thinking of you and sending prayers for you and your hubby.
We are still waiting my dad's testing but dealing with a mound of other problems- infection and tappering off steroids. As I read your post, I worry that we have not yet had scans but don't even want to know the results due to his lack of physical improvement. Sad

Hugs to you.
_________________
4/08Dad dx NSCLC IIIb adnocarcinoma 5-7/08 Carbo/Taxol wkly; 5-7/08 37-Rad chest/neck 6/08 ERsurgery trach&Jtube. 7/08 hsptl staph@jtube&blood trans.Headaches,MRI 10/3/08Multiple brain mets all lobes,11 in cerblllm. 15 WBR cmpltd 11/5/08. Decadron-brain swelling. 12/20 Pnuemonia. Petscan 1/7/09 disease progression : (

Gillette · Posted: Thu Dec 18, 2008 6:38 am Post subject: hubby st 4 ..etc..

I am having a very tough time right now. The holidays have always been very difficult, as I grew up with a mom who suffers from (then untreated) cyclic depressions. This time of year she suffered(as we all do) from the lack of sunlight, and I do too. She lives in 29 Palms, CA, now, and that has helped. I am under a docs care- mild antidepressant, restarted this fall. I could not get over the christmas tree hump. I did not want to be buying the last tree for Ben. I can't explain it any more than that. Last years tree was picked out in fun- I'm digging for fun, this year. Between the economy, Bens' health issues, and his loss of income - never mind the cancer, treatments, work, and whatever the daughter and grandson need. But, I got the best short fat tree, that will fit well in our mobile home- and i cried all the way home.
I am finding all the happpiness and joy I can find, and shoving this crap all underground - until it rolls over me. Work yesterday , to be frank, sucked. I could not shut off my mind and thoughts and ...
I came home and Ben said I looked wiped out- I was, and just told him I'd had a tough day with it all. He reminded me that the treatment had gone well, and he felt we got good news. Basically asking me to knock it off, as I bring him down with my saddness . So, I keep trying, and playing xmas music, and staying busy at work, and hanging with the family at home.
Thanks for listening, guys, I couldn't do it with out this outlet.
Bless you
_________________
Kathy: still loving Ben, as he rests with God.

brainman

Kathy, I do not always reply to messages on the Lung Cancer forum because I know that there a so many better qualified members than I to answer questions about Lung Cancers. However, your last post really touched me. I am bipolar so I have swings between times when I feel like I can do everything and anything to times when I feel so down that it is hard to get out of bed. I have been going through the "valley" during the last couple of weeks and have only been up to approve members and answer a few messages. I am telling you this just to say: You are not alone.

I do not know if there has ever been any scientific studies but it seems to me that people who have or are in some way dealing with cancer have a higher probability of getting depressed. It really is hard to remain positive all the time. I look out side and see that it is still raining... I can't remember when we had a clear sky day here.

You are not alone Sad

You and Ben are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2396

Hi Kathy,

How are you doing? I hope you've found some sliver of light in your world and are making the best of what you've had flung at you. I'm sure I've told you this -- but I was big on going out on my front porch and crying out of sight of my husband. We both put on a big front for each other, to protect each other.

Gotta get that poker face going in spite of everything girl! Please know that what you are going through with the emotional ups and downs is VERY normal. Somehow we survive.

Prayers and hugs sent your way.

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

Hello,all. Ben is feeling pretty crappy the fourth day out of his first alimta chemo treatment. They made this drug sound like it would have no side effects, thankfully I am not surprised: I had heard different stories here on the forum- everyone is different. It is so dark, so early these days, and cold and it has been snowing every other day. It makes the christmas lights pretty, but I have to dig for the pretty things in life sometimes. And I see his lethargy, and it bothers him - so it bothers me. He has had no enjoyment from eating- taking supplements well, and just took a compazine- the first in 6 months. I make sure he takes in enough, without hounding him, and am glad he had gained 30 pounds or so before this treck began in April.
The poker face gets harder as the hands get heavier.
I try to find the good, and be good, and be happy, and be busy. We are putting up the xmas tree- finally. It is a small one this year, and we will carefully pick out the best of the best of the many ornaments we have accumulated over the past 27 years, and it will be a lovely tree, and I will have to practice not crying. I hate it, I hate cancer, and crying, and all of it. I have had a lot of good- but it still sucks.
This time of year, it ( cancer) makes everything seem more important, while at the same time , taking some of the fun away.
Sorry for the tone, I can't seem to shake it - but since I refuse to give up, and am a survivor- I will get by. Sometime in February, after my 49th birthday, the days seem to lengthen, and I begin to feel better- like my old self. Wink

Thanks for listening, and God Bless us, every one.
_________________
Kathy: still loving Ben, as he rests with God.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2396

Hi Kathy,

I too am hunkering down for the long winter. I wish it was over already and start my annual fall/winter blah slide in the fall. Neither of us should have had to stroll this path in our late forties -- so don't feel alone. You'll do fine. You have grit.

Bless you and may God give you some peace and comfort this season.

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

MnDixie · Regular Joined: 15 Dec 2008 Posts: 28

((((((((((((((((((Kathy and Ben)))))))))))))))))))))))

Gillette · Posted: Sun Dec 21, 2008 9:55 pm Post subject: Hubby st4 lung to brainX2, etc

Thanks, I love you all for it Exclamation

Our tree is up, and it has to be the prettiest one we have ever had..... Funny how God works those things out, AND- Ben just found out he will be a grampy, his daughter that he had only recently met as an adult, via the phone and internet, is expecting!
Exclamation

Merry Christmas Exclamation

And another reason for him to look ahead, as I need to be better at- positively. Seeing him happy, and excited by this news did me a world of good. He could find energy to do little but watch Dave( our son) and I trim the tree, but it was a great time, with the celtics (winning their whatever record game in a row in the background) He ate a good supper, and is soaking his arthritic back in the tub right now.
We are having one heck of a snow storm, but really don't care. It is not concerning to us to get 18 inches of snow- the ice, now that was a different story.
We do not have alot of money, or loads of gifts to throw around, but we really don't care about that either. We are planning our annual xmas eve party, for our closest friends that are alone.
I guess i can hate the cancer, and what it has done to everyone it touches, but I needn't be hateful. That is a poison that is avoidable.
Thanks again for you support Smile

_________________
Kathy: still loving Ben, as he rests with God.

azsun · Regular Joined: 23 May 2008 Posts: 22

Wonderful news. It's always that little something that can turn a frown upside down. I think you are doing an amazing job keeping his spirits in the right direction. Sending happy christmas vibes yor way.. and a little az sunshine ; )
_________________
4/08Dad dx NSCLC IIIb adnocarcinoma 5-7/08 Carbo/Taxol wkly; 5-7/08 37-Rad chest/neck 6/08 ERsurgery trach&Jtube. 7/08 hsptl staph@jtube&blood trans.Headaches,MRI 10/3/08Multiple brain mets all lobes,11 in cerblllm. 15 WBR cmpltd 11/5/08. Decadron-brain swelling. 12/20 Pnuemonia. Petscan 1/7/09 disease progression : (

Gillette · Posted: Tue Jan 06, 2009 9:04 pm Post subject: update, holidays past

Hello all, thought i'd check in. Ben had his 2nd alimta chemo today, and is doing well. He appears start feeling yucky from the 4-5 day out , till until about 14 days out- 7 days before the next one. So, it appears we have a new calender in our lives, and will live with it. I have talked him into the idea that he can make it to when his daughter will have the baby, and if he is feeling well, I'll find something later than that to aim him at. I just hope the chemo keeps the brain tumors from growing, that's what I fear the most:The loss of the person I have known, before his passing. I try to completely ignore that thought, and have gotten much better at my poker face. Now , he is worrying about me, and i am not sure how to care for that. I do take the time I need- and certain chores go undone by me sometimes Rolling Eyes

so I have that time I need for my head. The priorities have gotten shuffled around here, and the son is growing up to assume more also. The 28 year old varies between falling apart and howling 'mommie' for help every time, and 'I am the woman, and I am bad' and i just ping around inbetween all; like a pin ball- good thing I like to play pinball Exclamation

Ben's blood work numbers are almost unchanged from before the first round of the alimta-
how is that possible? And the folic acid supplements- does the alimta effect the bones production of blood cells, where as the taxol/carbol the blood cells themselves?
His weight is stable still, even though he has had more trouble eating, and enjoying his food, I have observed. (He gets angry with me when i voice my observations, so I had to let it go at he docs today.) The supplements are taken well when nothing appeals to him, so intake is adequate.
I guess you could say , life is good, 'cept the Celtics are on a loosing streak- which has both guys yelling at the refs'- as good as we get with our cancer lives now. We are warm and well fed. And thankful for every day, although they are a little on the chilly side these days- in the teens, near zero overnight, and the days are getting longer- 10 minutes so far.
This place is the best- thanks for listening,
God Bless
_________________
Kathy: still loving Ben, as he rests with God.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2396

Hi Kathy,

Just when you get used to one chemo routine and side effects, you change treatments and have to reconfigure all your thinking again. <sigh> I know that feeling all too well. It also takes a couple of cycles to ferret out what is and isn't chemo related. Alimta proved extremely challenging to my dear husband and he crashed faster and faster each time. I have a friend that is doing the Avastin/Alimta doublet and the same thing has happened to him. Naturally, the longer on a regimen, the cumulative effects become greater --- especially after doing a prior line of treatment.

I pray this works well for Ben. Sorry about the Celtics too! I know my husband lived for the Cubs, so at least there are some bright moments they still connect with.

Must be a "man thing" about vocalizing our observations. Rolling Eyes

LOL Somehow what I said was usually dismissed by my husband and then he'd check with the chemo nurses and find out I was right. Harumph -- men never learn that we are ALWAYS right -- right?? Wink

Most chemos affect the way the bone marrow creates the blood cells. I was told there is a finite ability for the bones to continually make new blood cells and getting hammered constantly with chemo impairs the ability to produce them as rapidly as a non-treated person. It depends on how well the bone marrow continues to have the ability to rebound with new ones. Alimta does suppress bone marrow function. Apparently the folic acid and B12 reduce the unwanted effects of treatment without reducing its effectiveness. Also "Patients must be instructed to take folic acid and vitamin B12 with ALIMTA as a prophylaxis to reduce treatment-related hematologic and GI toxicities." So, there you have it.

Thanks for giving us an update. Sounds like you are doing okay. Be gentle with yourself -- you've got a lot on your plate with working too!

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

dano

Hi Kathy;
This all sound so familiar to me, Cool

oh that's right I'm on Alimta! Laughing

I agree with what you say. My chemo day is Tuesday and I start to feel yuck on Friday and more for 4 to 5 days, I also take the Folic acid and Ranitidine for my stomach acid and for the bad days Prochlorperazine for nausea and has been effective. In the earlier days Ensure was my sure thing that I could hold down. In time I branched out to what ever sounded good. Milk shakes and french fries, I ate a lot of those. Some of the normal foods around the house. Bur I asked my wife to check with me before she made anything because my stomach was so temperamental, it had a hair trigger and could go off at the drop of a hat, or a bad smell or taste. The Neulasta shot had about the same schedule as chemo, but I never could anticipate when it would effect me. I was like a pain bomb going off in a joint some where that was a little stressed and strike me like lightening and then go away. Well I'm getting late for work, have a good Day, Say hey to Ben for me! Cool

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: Thu Jan 08, 2009 5:42 am Post subject: hubby st4....

Thank you, for the support, it is a challenge, and I do try to keep all the balls in the air- Embarassed

can't juggle though; don't know why I expect myself to now Laughing

what do you think- Ben's second grandchild (his first blood MacKaye grandchild) will be born in july- I am thinking a trip to Geulph Ontario???
I love to drive, or the train? I feel the need to see to this milestone.
Am I crazy?
_________________
Kathy: still loving Ben, as he rests with God.

	Cancer Forums Forum Index -> Lung Cancer Forum	All times are GMT - 5 Hours Goto page Previous 1, 2, 3, 4, 5, 6, 7 Next
Page 3 of 7

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others