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

enchantedpines · Regular Joined: 17 Feb 2009 Posts: 14 Location: Canada

Hello, just adding a few echos to what others have commented on. As someone who nursed their husband through sclc with mets to the adrenals from Dec. 3 2004 until he died Nov. 28, 2005 I certainly understand the complex issues around being the primary caregiver. You are doing an amazing job, and this forum is a great source of support for that.

The 'face swelling'...I don't know if your husband is on decadron/dexamethazone to control swelling for the brain mets, but I know I am and my face has become quite round and filled out. Doc says it is a natural side-effect and nothing to worry about. I find it also makes my feet swell from time to time.

One of the things they didn't have online when I was the caregiver were the downloadable podcasts for people with cancer and their caregivers which I now listen to. There are also free visualization exercises that I find useful to relax to. Self care is essential for the care giver...it is so easy to burn yourself out and you are a key component....

Enchanted Pines, F/55 dianosed Feb. 2/09 NSCLC with brain mets. Had radiation to lung, awaiting radiation to brain. Mixing Naturopathic and traditional medicine, so far so good.

Gillette · Posted: Mon Apr 13, 2009 1:46 pm Post subject: Hubby st4 mets to brain x2

Hi, a quick note- I miss you all!! I have no internet at home now, a casualty of the economic times, and cannot be here as often as I want to. I have to limit my time at work, even with permission, on line on non- work places.
Ben Goes for blood work today, and a round of scans this sat- and we are told "then we'll see where we go from there" Ben is talking like it will be the time he decides to continue the treatments, or to not do it any more. I feel like I am in an uncomfortable limbo. After so much has crashed on me in the last year- yes, it has been a full year in this new life- I feel like I am just waiting for the next crash.
I miss you all, and wish I had not had to give up the 'net - but, it is a common reality now, to so many of us. I pray you are all well, as well as any dealing with this beast, and I look forward to the time when I can be here more. Love to all- and be well,
Kathy
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Kathy: still loving Ben, as he rests with God.

maryaz

Gillette, Sor sorry you had to give up Internet. When you are with a group like this for so long, it can be comforting and helpful. I am sure everyone will look forward to hearing from you when you can sneak one in. I will be thinking of you and Ben and praying for you as you see where you will be going with this next.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

Gillette · Posted: Sun May 24, 2009 2:01 pm Post subject: update

Hi, i Have missed being on, and chatting, but the monies are better without the expense. Ben is well, he just had his 8th alimta treatment, and I am told he will continue to get them until they no longer work. Last scans showed no evidence of the brain tumors, and the lung tumor is stable. He will have scans again in July, and we will play it by ear till then.I miss you all, and wish nothing but the best, and peace and abscense of pain- I'll be back
_________________
Kathy: still loving Ben, as he rests with God.

maryaz

Gillette, Everyone has to do what they have to that works. I am glad that it did help the finances. Also good to know the treatment seems to be working. Hope it stays that way.

Real nice that you could come in and post. Do it again when you can. Will be praying for you and Ben
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

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

Hi Kathy,

We all understand but are glad to hear from you. Let's hope the next set of scans shows the treatment is still working!

God bless you and Ben.

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: Sat Jun 06, 2009 2:02 pm Post subject: update

Hi, I am here again for a visit, and an update.
I am afraid. Ben seems to cough on alot of liquids he drinks, and seems to slurp all his beverages. His congestion continues, he takes sinus decongetants daily, and he is coughing croupy stuff up. I keep my mouth shut, but I am scared to death he may get aspiration pneumonia. The docs all say he is okay, and it is all nothing to worry about. I wish I could agree. He is walking better, but seems to be more unsteady- he cannot carry a cup of anything and not spill it, he keeps a towel on the floor for cleanups. He has relapsed to smoking again, and has asked for the stronger nicotine patches. I ahve not started smoking again- by some miracle. I know that if I have any Camels in the car, he will be even worse off than with his pipe tobacco. Work is brutal- the administrator and head director of nursing were fired. They have head honchos from the corporate office in Philly in our building watching everything. I am logging 10-11 hour days- paid for 8 , and paddling as hard as I can. I feel like I am one step ahead of disaster, or supreme depression. Everyone wants from me, and I feel the well running dry. I slap on that smile, Ben lays a guilt trip on himself if I come home down. There is no safe place, no rest but to sleep, and then my dreams torment me- horrid dreams.
But, today is the 14th month aniversary from the seizure, and the 14th month of the first life expectancy of 18 months they gave him, and he is still doing very well, all things considered. He has a chemo thurs, and then scans after the first chemo in july,
and we pray.
I wish I had more time to spen here, and to talk to some others- but time is something I have to be so very careful with, especially here at work. And here at work is my only access.
Take care, and prayers to all- I think of you all always, and wish I was here more...
peace and comfort...
_________________
Kathy: still loving Ben, as he rests with God.

dano

Hi Kathy, my friend. Sorry to here all those things and the position your in, it is most distressing. How does Ben think he is doing? Sue and I are here in Waikiki enjoying out 28 years together. My work has been slow in part because of the economy, but God has so blessed us it is hard to complain. A lot of this has worked because of the monies received from SS disability. So long as I'm still working, I'll be loosing that benefit in just a couple months. Hopefully my work will pick up again by then. Otherwise I'll have to write Obama for a bailout!...lol, not really, I don't want him running my life though he is trying already.
Wish there was something to say to Ben to keep his spirits up, I do consider the both of you good friends and always wishing and praying the the best for the both of you.
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 Jun 07, 2009 7:23 am Post subject: update

Thanks Dan, yesterday, when I got home, Ben was out on his scooter. I thought, that was a good thing- and then he fell coming in the door of our home. It was a very quiet evening, and we try not to be down about anything. Gotta run
_________________
Kathy: still loving Ben, as he rests with God.

Gillette · Posted: Wed Jun 17, 2009 3:03 pm Post subject: update

Hello- Ben feels well, and thinks he is doing very well. I had an appt with our pcp doc yesterday, and he remarked how he would never have expected that he and I would be actually talking about Ben in the present tense by now- he expected the worst , per history of others with his condition, so I came away feeling pretty good- my blood pressure, and weight are still too high, but I am blessed to be as well as I am , considering all the stress in my life and at my work.
The horrid dreams continue, and haunt me, but they are my subconcious taking a walk when no one is minding the store.
Work is handleable- not better, but changing, and I am adjusting to the new pace of things, and accustomed to the things I cannot get done.
The biggest news, is that 16 years after we put our dog down(he was 17) we have now have a puppy. It is a chihuahua, not purebread, and he is a year old. My daughter( due with another child, and a 5 year old now) could not keep him. Ben suggested we take the pup, I was astounded, and couldn't get the dog in the house fast enough. What a joy!! What a change in the atmosphere he has brought to us, and Ben loves him dearly, even after only a week. The sunlight and gifts we receive, just keep coming. And we are very content- in spite of this cancer demon. The oncologist said ben will continue with the treatments of alimta- forever if necessary. So, this furious roller coaster continues- up, down - back and forth, and we pray, play with the pup and our grandson, and keep on keepin on. Love to you all, Dan, everybody. I can't imagine not having you here for us, even in this cyber world- the love and caring comes through, and I hope ours comes through to all who need it. This cancer beastie really sucks the life out of everyone it touches- kinda like Mr. Freeze on Bat man- ((((( LOVE and PRAYERS)))))
_________________
Kathy: still loving Ben, as he rests with God.

thinkpink · Experienced user Joined: 12 May 2009 Posts: 61

Hi Kathy,

I’m a two month old newbie to the forum, and since I couldn’t tear up the ticket to this horrible roller coaster ride, I’m glad to find others to ride this out with me and help me get through this with my Mom. On our last two roller coaster rides (Mom's breast cancer and my breast cancer), we put the ride operator in a headlock, told him we were getting off, and the rest is history! Laughing

What is the puppy’s name Question

Pets can add such joy to your life, and it’s wonderful to hear that Ben loves him. Very Happy

Having pets definitely makes for a happy, joyful, carefree atmosphere - they help you to let your troubles go away for a little while.

I have two pupsters, Tai and Maddie, that have had to move with me to my parent’s house while I try to assist my Dad with my mother’s care. And my parents are actually getting attached to them – it’s cute to see them interacting with the pups. Tai is a poodle, and he just made 4 years old on Sunday, and Maddie is a pekepoo and her 4th birthday is approaching in July. I hope the puppy continues to give you and Ben much joy each and every day!

I pray that the sunlight keeps coming Cool

, I pray that you and Ben continue to be content, I pray that you continue to pray without ceasing, I pray that Ben continues to think he’s doing well and that he is ACTUALLY doing well, I pray that Ben continues to blow away the pcp’s expectations, and I pray that you continue to live and laugh everyday.

Our God is an awesome God!

tp
_________________
73 yo mother - 29 year breast cancer survivor, radical mastectomy with no radiation and no chemo and no recurrence.

Presented to the ER on April 14, 2009 with pleural effusion and pericardial effusion. Diagnosed on April 17th with stage IV adenocarcinoma NSCLC with mets to the lumbar spine. Began chemotherapy on May 1st- Carboplatin and Alimta plus Zometa for bone mets.

To read a summary of our journey: http://cancerforums.net/about12486.html

melkissa

I am glad to see you and your husband have found a light in the darkness that is cancer. Pets really do make a world of difference, my dad LOVED his dogs dearly. Sending positive thoughts your way.
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

Gillette · Posted: Fri Jul 10, 2009 9:13 am Post subject: update- sadly

Well, it happened. The medical coverage we all have had as a family from the state of Maine, DHHS, has been cancelled. Our son turns 19 next week, and is no longer to be considered a dependant. My income( pay freeze and all) is too much for two people to qualify for the Maine Care. They are sending a SSD packet, and I pray that he will qualify and my income is not too high for that. We are trying a couple of other avenues to get coverage, as my work place is not an option. The premiums are too high, and they have high deductibles, and low coverage. You have to pay 20 % of the covered expenses usually. Ben's biggest fear was that he would die leaving frightening bills for me to deal with. He was always afraid that we would loose our new mobile home.
Now he is cancelling appointments, and I know he will refuse treatment if money becomes the issue. He has made that very clear. I hate this ride. I try so hard to keep it all together, and get absolutely no where. Work is in constant flux, and I am doing 10 hour days, on 8 hours pay. I race here to get the work done to everyone's needs, and then race home, and keep the days stressors to myself.
I gotta go, before I get too down, and cry here somemore. Love to all, the dogs name is Oliver.
_________________
Kathy: still loving Ben, as he rests with God.

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

Hi Kathy,

Oh honey, I'm sorry that life keeps lobbing more crap your way. I don't understand the insurance system you have and why you're being booted. SSD should have nothing to do with your income as it strictly relates to Ben's condition.

Ben should continue on with whatever is necessary and let the chips fall where they may. My SIL was in bad straits with her finances and cancer, but worked out a modest payment plan with the doctor/hospital. They can write off a lot of the charges if you go and talk to them.

Look into a social worker at the hospital to see if they can help make arrangements. Talk to the billing departments. I hate to see Ben skip treatments. My husband became worried about prescriptions and I told him to forget about it. If he needed them, I was buying them.

You may want to consider transferring the title of the home to your daughter, for the time being, so nobody can come after this asset. I have a friend, with no insurance, whose husband was treated at Moffitt and his name wasn't on their home, so they couldn't collect anything. Maybe it varies by state. Please look into it. (Yeah, like you don't have enough to do in a 24 hour day.)

I'm playing catch-up with some of your posts and you are such a beacon of light in the wilderness for anyone who sees them. You have such great faith and that, in itself, is such a blessing. God is surely with you both.

I love that you were able to get a new dog. What a nice change of pace in the household. Those critters -- they do all of us a world of good.

Please try to take some time for yourself. I know -- easy to say, hard to do. I do mean it. I'm paying the price for letting myself go and it's a steep climb back to good health for me now. Word to the wise. If there is anything we can do to help, please let us know. Do take the time to have tears too. They are cathartic.

God bless, love, and 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

kevinz7 · New User Joined: 12 Jul 2009 Posts: 4

Heavenly Father please cover her husband with the blood of Jesus bless him and if its your will send and angel to heal him. Allow the spirit of peace to descend upon him and comfort him in these time Jesus let them know there is power and hope in You in Jesus name we pray Amen.

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