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

Gillette · Last edited by Gillette on Fri Feb 13, 2009 11:23 am; edited 5 times in total

Hello, this a new forum for me, but I need a place to talk that no one can hear. The words aloud have almost become a routine boring subject here.
We are just over 6 months into this. Hubby had a seizure 4/08, and in the hospital, they found adenocarcinoma in his lung- size of a tennis ball- and a"deposit "in his brain the size of a nickel. He had 5 chemo (taxol, carbo-whatever-it-is) 5/08 to 8/08, and is said to be in early remission now with the lung tumor. The follow up CT scan- 8 weeks post chemo- showed an increase in the size of the first brain tumor, and a new one on the opposite side of his brain. He is now in radiation therapy, having completed 8 of 20 treatments. The prognosis is not good, best case- the treatments providing quality time for 1-2 years, with the inevitable as the treatments become of little relief or result. This sounded like a short time, untill we had all the tough care and death talks. We are blessed Ben is up, active, and feels well. This is very hard, and yet second nature. I have spent my whole career in the long term health care at a single facility I love. I have had a great deal of training in death and dying, and am thankful for life. He and I have had a great deal of growth along this recent path, and will continue to live the time he has left. We have also met a lot of God's angels along this road, and tried to be ones ourselves whenever we can. And I am finding them here, too....
God Bless
_________________
Kathy: still loving Ben, as he rests with God.

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

Gillette,

Welcome to our community and I'm sorry you had a need to find us. I am glad you have though because there are a lot of warm and caring people who can share and understand what you are going through.

Sometimes I think it is the roughest for those in the health care industry, because they know more by the nature of their jobs. Unfortunately we ALL become more knowledgeable about these things when a loved one is on this journey.

My husband and I didn't talk about the cancer too much, but it's hard to avoid the elephant in the middle of the room when your life revolves around treatments and side-effects from the treatments. I'm sorry that his ran to the brain so quickly. We were blessed in that area as my husband's stayed in his chest with just a couple of bone mets. I'm glad the first line chemo worked so well for your husband and hopefully his isn't too aggressive and he'll stay NED for awhile in his lungs. I'm also 51, so I understand how unfathomable it is to know you may not have years and years left together. I noticed you still have a teenager and I'm so sorry that someone so young has to go through this journey as well. It was hard enough for my kids, who were in their twenties, but it hurts to see one with younger kids. Hey -- none of it is very good. Confused

Feel free to explore your feelings and share with us. I'd have to say that, whatever emotions you are experiencing, someone here will understand.

My best to 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

azsun · Regular Joined: 23 May 2008 Posts: 22

You're husband seems to be a similar point as my father. A few months ago I could not find a post that had to deal with a trach or jtube problems we were experiencing. Now it seems that brain mets are taking over for many of us. I hope for the best for you and all going through uncertain time.
ps
what does OOB stand for?

sgodshall

I understand your journey, as I also work in healthcare and my husband has LC, mets to brain and bones. WBR helped, but so far excellent results with SRS. 4 tumors are GONE- 1 more and we have kicked their butts!! We also have younger children and we partied last night with our good news. I pray for you and your family - this forum is an excellent place to vent, educate, cheer and rejoice in good news.

OOB--out of bed
_________________
As long as there is Life, there is Hope.

Husband (44) with LC, mets to brain, lymph nodes and bones. Received Carbo/Taxol, currently in a clinical trail. Had WBR, stereotactic radiation to brain

Gillette · Posted: Sun Oct 19, 2008 6:42 pm Post subject: SRS

What is that? All this lingo is hard for even someone well versed in medical-ese. And horay!!! for your family!!! Horay!!
_________________
Kathy: still loving Ben, as he rests with God.

sgodshall

Stereotactic Radiation Surgery - but not really surgery because they don't actually cut into the brain. It is sometimes called Gamma Knife. We had both Radiation Oncologist and Neurosurgeon involved. It is similiar to WBR, but concentrate on one spot at a time. My husband had 5 brain tumors after WBR, now as I posted earlier he has 1 left. Yes you learn a whole new language when you start down this road.

Continued prayers for you and your family.
_________________
As long as there is Life, there is Hope.

Husband (44) with LC, mets to brain, lymph nodes and bones. Received Carbo/Taxol, currently in a clinical trail. Had WBR, stereotactic radiation to brain

Gillette · Posted: Mon Oct 20, 2008 3:07 am Post subject: gamma knife

Thanks- we meet with the radiation dr today for a weekly check. Ben is getting the whole brain rad. now, with plans for a session with a fine tuned treatment to the 2 tumors they know are there. I want to ask him about this gamma knife. Have you found any wholistic approaches? We cleaned up our diets from artificial foods more than 12 years ago. And the new language is becoming normal- we can't remember what truly mattered before he had the seizure anymore. Thank you, and blessings and prayers to you and yours.
_________________
Kathy: still loving Ben, as he rests with God.

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

Hi Gillette,

There is a forum on the internet for cyber-knife treatment -- actually an entire website, but here is the link to the forum: http://www.cyberknife.com/Forum.aspx I think cyber knife is pretty much the same as gamma knife, but I could be wrong. They may implant little seeds to direct the rads with cyber-knife, but you can learn what it's about from the website.

In all honesty, I've watched people do supplements, etc. til they were blue in the face and it didn't seem to alter the outcome in the least. Sorry to say, but have seen this repeated over and over. Always talk with a naturopath in conjunction with the oncologist for any dietary changes or supplementation.

My very best,
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: Mon Nov 03, 2008 11:11 pm Post subject: Husband st 4 lung to brain

Hello- Tomorrow, voting day, is Ben's last radiation treatment. I am surprised at how fast the time flies- surprised, and saddened at the flight of time. I find myself wanting to get through the steps of whatever treatments, or appointments he has, and then feel guilty that I am rushing time : His time: and we have been told he has limited time. The doctors can't tell how long, we have heard from 1 1/2 to 5 years. We have already been dealing with it for 7 months now.
He is looking forward to the month off from any appointments. The next one is Dec. 2nd, with the oncologist. The Doc told us, that at that time, he will schedule CT scans to check Bens' head and lungs.
So, now we enter the enjoy-a-"normal"-life- period, waiting to see if he will have a life? And for how long? How do I deal with the waiting without watching his every move? every wheeze, forgotten detail? Ben and I have always had a relationship based on letting the other live wihout one suffocating the other- no leashes- based on honesty and personal space, allowing the other to be who they are. Through the treatment periods, Ben relied on me to keep all the details straight. Now I feel like I have to be care full not to hover too close- ask too many times how he feels (why, do I look bad?he asks)
This nasty disease has too many facets that screw with you, I think- just when I think I have figured out how to deal with it, it changes, and I am blindsided , and bawling my eyes out at work - Now , that's embarassing. The preachings go on there about seperating home from work, and some of my (understandable) distractions effect my work preformance, and I get a whole new set of headaches there, along with the support. The daily radiation appts were very hard- I had to leave work to get him to the office and back- and then go back to work. I am having a heck of a time staying focused, but keep trying. I cannot afford to take time off, not yet.
And through it all- I chastise myself:: because as hard as it is for me- Ben is the one inside ; living it.
And I love him, we have been together for 26 years.
_________________
Kathy: still loving Ben, as he rests with God.

dano

Hello Gillette;
Time is an interesting issue, how we use it and making the most of it. At the beginning when I got the bad news I felt sucker punched, having no thought or plan of what to do next. Then it was prepare for end mode, getting things in order. Then it was, well I've got cancer but life goes on, why not enjoy everything I can while I have time too. And I'm still stuck in that mode. I have to work hard with my wife to relax and not worry. How do you enjoy life and worry at the same time! It is hard to. It is good to know that God has a plan for your life, it is your job to live it out in the fullest way possible. Take the time to enjoy all that God has put before you. Take the time to make memories.
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: Tue Nov 04, 2008 9:47 pm Post subject: Husband st 4 mets to brain

how do I quit looking and feeling like a hovering nanny? Always looking for a sign? It is like I can't leave him alone, and let him be. He has 4 weeks with no drs appts. All I can think of is that he had a new tumor grow in his head in the 6 weeks break he had after chemo- which sent him to WBR. And what will be the next step in the road? And we won't know, will we. I guess that I have to get used to this next phase, one of many, I perceive. Of waiting and watching, until the next appointment, CT scan....I think i'm just tired...
'nite
_________________
Kathy: still loving Ben, as he rests with God.

azsun · Regular Joined: 23 May 2008 Posts: 22

Looks we are on the same wave. Last day of WBR for dad is tomorrow. Then we are to wait 6weeks before any scans are ordered.
One can only hope what has been done for them this far holds them long into the new year. That is the only direction I can focus my thoughts and they get distracted very quickly as do yours.
Sending positive vibes your way. Wink

dano

Hi Gillette;
Lets get back to basics, You can not do all! He doesn't want you to do all! Ben needs your love as a primary and what ever else you can do is a blessing from heaven. Nobody goes forward with cancer with 20-20 hindsight. The smart doctors that deal with this all the time wont hazard a guess for a good reason, there is no set cancer fix. Your best bet, set all those worries on Gods shoulders because he is the only one that knows the answers. Giving you freedom to love Ben all you can and enjoy each minute with him, then months, then years, it is all possible. Then if God chooses to bring him home earlier, you'll know that you have no regrets because you made the most of the time you had. 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

Tera · Senior User Joined: 31 Dec 2007 Posts: 279

Dano, that is one of the wisest posts I think I have read in a long time. Simple, straightforward advice from someone going through this. I also know as a caretaker, it is one of the hardest things to do....to not hover, to not look for every little sign and then become frightened out of your wits if you do see what you perceive to be a change in your loved one's condition.

While taking care of my mom, I know she became worried about me, feeling I was not getting enough rest because I wanted to do everything. In a way, my doing everything was what kept me going. Otherwise, I'd have melted into a pool of tears because anytime I stopped or slowed down, my mind would focus on the inevitable and I would break down. I was fortunate that my company allowed me to bring my work computer home and I kept up with my 8 hours a day and took care of mom, many times getting up in the night. I joyfully did it because I loved her. I felt priviledged to take care of her like she once took care of me.

The sad part is I didn't want to burden her by telling her why I had to do everything. Because I didn't want to break down in front of her. Although, mom knew me pretty well and knew I would do busy work when I got mad or upset, so I have a feeling she knew, deep down inside, why I stayed busy. I cried in front of her only once during the whole battle. Then berated myself for it and got busy again. It took the Hospice nurses to explain that it is ok to cry, it lets your loved one know you love them. Just don't lose it completely.....which is what I feared I would do because I am such an emotional person.

I apologize for the length of this post. I guess, in a roundabout way, I'm trying to say that from a caretaker's view, it is so very hard to not hover and do everything. I totally understand how Gillette feels. We understand our loved ones need their space and privacy too. Finding that middle ground can sometimes be difficult. So if you find your loved one doing too much, know that sometimes it is what keeps them going. If you need your space, give them a gentle reminder of that and tell them you need them to take care of themselves.

Gillette....maybe thats what you can do. Talk to Ben and ask him to let you know if he feels you are hovering or doing too much, to tell you to slow down, it's ok, and to please take care of yourself. This way, you will know if it becomes too much for Ben, and can learn when to back off or slow down.

I will keep you in my prayers, all of you. Prayers from loved ones, friends, the church, and even strangers, are what gave me the strength to keep going. Prayers lift you up, patients and caretakers alike, and God gives you the strength. I know for a fact, it works. God Bless you.

Gillette · Posted: Wed Nov 05, 2008 4:17 pm Post subject: learning to wait

Thanks to you all, it helps me to know that I am not crazy. I get so tied up in all the things that must be done, I forget to try to have fun, and that has to be what we need to do. Maybe I need to try to do something I like to do at least once a day, because I want to. I haven't been doing any crafts, knitting, walking, or putzing with my plants. All work and no play.... My work is a large part of my life: maybe it is time to let more be done by others there- I tend to "own " alot more than I maybe should.
We, Ben and I , are very thankful for the power of positive prayer- from anyone and everyone.
I do not consider you forum-folks strangers- I have become attached to you, and have come to rely on the conversations we have. Once he has better glasses, I may even get Ben to join and chatter too- we'll see.
God is the only one in charge, otherwise how could we have had the good fortune we have already had: Finding the cancer with the warning seizure in the first place, and the chemo crossing the brain filter to affect the brain tumor while having treatments.
I will keep trying, keep loving him, and keep reaching out to you..
Thank you, and God bless, and know you all are in my thoughts and prayers.
Kathy
_________________
Kathy: still loving Ben, as he rests with God.

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