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

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.

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

Gillette,

You go girl! Very Happy

It is terribly hard to live with the elephant sitting in the middle of the room. Make the best of what you have and realize that you and your husband's world can get smaller. We began to enjoy the craziest little things, like accomplishing a grocery store trip. Whoo-hoo! Who would think that something that small would feel like such an accomplishment, but you savor what you can at a certain point.

Relax -- or try to and keep up the laughing and humor. It DOES carry you through many of the rough/stressful spells. God carries us the rest of the way. The lull periods are some of the worst, not knowing what is going on. Arrrghhhh!!!!

By the way, I must have asked my husband "How are you feeling?" at least 40 times a day. Shocked

Fortunately he tolerated me and understood. He was a joy to take care of because he was darned if he wasn't going to stay independent and do everything he could for as long as he could. We were very blessed in that regard.

May God bless you with peace and enjoy this time as much as possible.

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: Mon Nov 17, 2008 6:34 pm Post subject: husband st4 lung to brain

Hello all, I am learning to relax at this time, and have our lives taken an interesting turn. Earlier, I shared that Ben had not had the best upbringing, and low self esteem resulted - till recently. Once this Cancer demon changed our lives, and health changed, and perceive a time frame of quality time...no one lives forever. He has been calling everyone in his highschool alumni book- I was so happy!! We have that cable - phone- so pay a flat rate- and I love it. He gets on the phone, and talks to so many people. Whoever he thinks of reaching out to , i encourage him to do so. AND, he has found he has a now grown daughter(Amber) he did not ever know about. What a flip! The internet is making it easier to get closer to that whole 'new' family- thay are cross country , and Amber lives in Canada.
So- again, the old Grateful Dead song- "what a long, strange trip it's been" on this cancer road, comes to mind.
Maybe it is odd to be happy about something like this, but I think that all things happen for a reason.
And , I am doing my knitting, and doing better with the work at work( not at home) He is playing his guitar more, and that is really good. It gets a little loud sometimes, but I go to the far end of the home, and fold laundry, and sing along.
So, I think am learnig how to live with the cancer for now , and the fears that come and go, and accepting that when "the other shoe falls, as it may" we will just deal with each issue as it comes along- just like before. We stopped waiting for the good times to end, and I feel like we are more just living them instead.

I do have a couple of questions if anyone has any thoughts.
Will his hair grow back on his head all over? or have spots where the stong treatments were?
Will the neuropathy in his feet ever truly improve? His fingers are a little better now.
Does the chemo - yucky feeling continue to surge and resurface for a long time? He is almost 3 months past his last chemo treatment.
thanks to all, you are good for me,
Kathy
_________________
Kathy: still loving Ben, as he rests with God.

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

Kathy,

I'm so warmed to read your post. Yes, it's an adjustment to a new "normal" that we all make during this journey. I'm happy that he is doing the things he wants and that there are times where you can relax a bit in-between the heart stopping hurt and worry.

As for hair growing back -- no one can call that issue. My BIL had brain radiation and 2 courses of chemo and his gorgeous thick hair never came back. Very thin and spotty. Same with my SIL. I knew my husband didn't stand a chance with 2 sibs having this issue. He got a peach fuzz hair with strange texture, but was on chemo the entire time. I'm sure there are people whose hair does grow back, but this was our experience. He was older too, so maybe those follicles poop-out after awhile anyway.

If he's seeing improvement in his peripheral neuropathy, then hopefully this trend will continue. No way of knowing this either.

He should contact the doctor about the "chemo ookies" resurfacing. That wasn't our experience at all. Despite constant chemo, my husband typically rallied well about a week after and was good til the next treatment. Every person is their own unique "chemical factory," so what happens for one may not be the case for someone else. Just keep the doctor posted that he's experiencing chemo flashbacks. Rolling Eyes

I wish you both the very best and thanks for the update.

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 Gillette;
Here again a agree with PBJ with all she says. I have never been off chemo now in a year and I feel better treatment by treatment, but it still bad for about a week after chemo and those d#@*#@* nuelasta shots the day after. As for the hair, definite peach fuzz, it is hardly there it seems. At least it's not the bald look, over all I'd say I look a bit more military. I say that because I'm being asked if I'm still serving all the time now. Here in Hawaii there is a big presence of military personnel. Of coarse where a Navy hat helps, lol, I back my son who is in the Navy. For a while I had a weird round patch of hair growing in the back , longer than the rest, thats better now. So I'm getting used to the new short haired look, in the morning I just wet my hands and flatten the peach fuzz and maybe pull out my wife's fine bristled brush and get it some what organized then it will dry pretty flat. But the hair is so fine I can not feel it with my hands well, I some time look in the mirror and shock my self as to what my hair has done. In my work I put my head up into a lot of drop tile ceilings so that can mess things up a bit.
Good to hear your getting adjusted to the new normal and feeling more relaxed, sure wish we could have coffee together, it would be a hoot.
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: Tue Nov 18, 2008 9:03 pm Post subject: husband st4

Thanks- I don't think coffee ( tho I LOVE it) will cross computer lines, and Hawaii is a long way from Maine- we're seeing snow showers now-a-days.
Things are going well, as i said, and he's yacking on the phone to his newly found daughter right now and we are bopping between the Celtics game, and the wrestling- ECW.
When I got home from work, he had company- one of his high school friends he hasn't seen in 20 years. That was really cool too.
They all need to know how important they are to him- as he is to them.
And we await Dec2
Thank you, my friends,
and my best on your battles and fights too.
Kathy
_________________
Kathy: still loving Ben, as he rests with God.

Gillette · Posted: Sat Dec 06, 2008 4:47 am Post subject: Ben- st4

Hello all- update-
MRI of head, and CT of thoraic and chest done on Friday. We have an appt to discuss results Tues morning. Luckily I have to work till then , so I will have little time to sit and worry. I prayed my whole rosary while waiting, for the strength to move forward. I have had a sort of epiphany about this disease, and now understand more of the 'why' it has such a low / short time survival rate once it has gone where Bens' cancer has gone. I want to savor every day, while not making him think every day is his last. He is setting long term goals for himself, and I suppport them completely. And I try not to grieve more than I have already.
Gotta go cook breakfast for 60 elderly folks, Thanks for all your support, I treasure every word!
Kathy
_________________
Kathy: still loving Ben, as he rests with God.

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

Kathy,

Good luck with the results! I know the time between the tests and the results is pretty cruel. We got to the point where we didn't fret over them until the morning of the results. I don't know how, but after enough scans, you have to find some kind of balance to remain sane. I couldn't take the high anxiety of the wait, so forced myself to let those days pass without thinking of them. My husband was more laid back or at least he "appeared" to be. He was always big on the "it is what it is." Maybe age has a lot to do with it, I don't know. He was older than I am and I DID struggle with the "whys" a lot more because I was in my late forties. I think a lot of couples really go the extra mile to protect each other and keep the fears at bay.

Keep up the good work Kathy -- you are doing a tremendously good job as a wife and caregiver. Your support of him does more than you'll ever know. I'm glad your husband is thinking of the future, but as a wife, you have the right approach. Go with the flow and live in the moment. I got tired of wringing myself out emotionally with too much projection into what my future would look like and that phase passed quickly for me so I COULD enjoy our time together. Sadly, I never could have imagined what it really IS like, so that's a blessing from God too. Have a lot of chats with God -- he's always around and doesn't mind our ranting and venting. He's still there holding us up along the journey. I used to say I needed band-aids in my armpits from God hooking his thumbs into them to hold me up so much! Very Happy

I wish there was a magic wand that I could wave to make this go away for everyone, but also know that there were bright times, new discoveries, and a deepening of our relationship during my husband's journey.

Sending warm thoughts and prayers for good results.

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 Gillette;
I'm going to make a prediction on the scan results, things look overall better than the last scans. Why I guess that is if it was a turn for the worst you would have heard from the doc already, they would be making plans to change the treatment, well this what I've told myself on my last couple and it held true. Ben and I are going to be around a long time yet!
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

dano

Hi Kathy;
You guys live in Maine, how cool is that. You know we are just a short boat ride away from each other! lol Guess I just have to come visit.
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 Dec 06, 2008 8:51 pm Post subject: husband st 4 lung to brain

Hey Dan- it is 18 degrees out right now- yea, Maine is VERY cool for several months a year:and that white stuff... Razz

...- and the "boat" ride would take as long...hahah Laughing

Thanks for your words- we are getting better at waiting these days. He says he has been around for 8 months after diagnosis, and feels better than ever (minus the stuff he has gotten used to living with). 8 months is quite a sizeable part of the different time frames the docs were all throwing around - so we are living every day, and planning for next summers' flea markets with our jewelery and clothes. His cd is coming along as well as any can when trying to get several musicians together. He assured my daughter he would be in Orono, Me. when she graduates from Pierres' Beauty Academy, and can fulfill her life long dream of being a beautician and hairdresser in May of next year. I do not base my future on a miracle- but of living and loving NOW. We all are called home, some just find out it might be sooner than later.
I pray that you both are around for a long time to come also, and thank you for that.
question- the chemo you are on is always? do you get a break now and then? Is it because something recurred, and treatments must change each time?
Thanks Dan- you are a beacon for alot of us, a light for life and to live.
God Bless you ,my friend.
Wink

pbj - thank you for always being there for me, my road is dark at times. I know you understand some of my steps better than most- as you have walked there . My appreciation and thanks to you.
Good night
Kathy
_________________
Kathy: still loving Ben, as he rests with God.

dano

Hi Kathy;
As the chemo goes, I guess the answer is yes It is always until I run out of money ($5,500 every 3 weeks) or until it stops helping me. I think part of it is because I'm handling it easily and all the scans have looked good. What I dread is in the possible future if my mets come back to my brain and I go back into radiation and cook my ears again. They are so slowly getting more normalish ( that post cancer normal...lol) I have not asked the doctors when I'm coming off. I have been surprised by hearing other people getting breaks from there chemo.....lol. I'll have to ask a question to my doc who avoids answering most of my questions, next Tuesday.
I love the snow, though I might not if I lived in it, but for me it has been something that has made memories. Skiing would be no fun with out it, and without that I would not have met my lovely wife. Let me share with you a memory. After we were married I took her hunting with me to eastern Oregon to my Elk and Deer hunting grounds I've been going to for 15 years at that time. In most of those years it has been warm cold was about 30 degrees and never snow. Well this year I came prepared for normal hunting weather and only a El Camino for a truck. I loaded our two dogs and a tent and away we went. 7 hours later we arrive in the area to find snow, over 16 Inches worth on the ground. Fortunately many other 4x4s and trucks had been ahead of me so I only had to plow 4 or 5 inches of snow on the way in. We got there and let the dogs out (golden Retriever / Irish Setter mix) and the jumped around like jack rabbits in the snow. I dug out the snow for the tent which was an old canvas umbrella tent which I soon realized the umbrella portion was missing. I found branches to stick inside to help hold it up about 5 of them. I built a fire and we were all comfortable. When bed time came the dogs insisted on coming into the tent instead of there dog house I brought for them. We had our sleeping bags on the tent floor sandwich style and the sleeping bags were miss matched so they didn't zip together. When we got into bed, it was so cold that the dogs would stick their noses in between the layers and let in the cold air temps dropped at to below 18 degrees. I didn't mention Sue was 4 months pregnant and the only facility was the toilet seat I brought and set up on boards nailed to trees and wrapped with a tarp, then after I dig a hole...Wa La. an out door latrine. Just not comfy in the middle of the night when it is freezing to a lady that is 4 months pregnant. There is a lot more to the story but you can get the gist of what I've put my lovely Sue through.
Hope you didn't mind.
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 Dec 07, 2008 4:46 am Post subject: husband st 4 lung to brain

What a great story- what a great wife!Thanks for sharing ! Some Mainers hibernate the winter, and there are some that are out in it. Hubby and I - neither one of us could ever learn to ski, though we each have tried many times in our lives. The snow is pretty, we live on the coast, so we do not get mountains of it - usually. Every 4 storms we will get one of the coastal storms- kind of like a hurricane, but with snow instead of rain, and get 18 inches of the stuff. But there are folks who live near the great lakes that get WAY more snow than we do here. Wink

I am sorry your treatment depends on your money. (Bens' chemos were almost $3000 each, and covered) That always hurts me to hear- with the ga-zillions that the drug company stock holders make(well, maybe not lately) I am always disturbed when I hear anyones health maintence is dependent on what they can afford. - another soap- box of mine, Mad

I'll step off RIGHT now.....
Ears- is the radiation why Bens ears turned dark? I have had to do alot more ear care for him than I ever used to, and wondered why that was. I was thinking he was forgetting to use soap when in his nightly soak in the tub for his back(arthritis), because he was in there for relief, and not for business. He assured me has was, but at times I have to watch his short - term memory from the original seizure
The oncology doc has said no more radiation for Ben at all, and that maybe the chemo will be an option if the brain mets come back, or were not affected enough, to extend life as the chemo had crossed the brain filter the first time.
I have to go, time to go 7 miles to my work.
Life really is good.
always praying- for us, for you, for all the forum members,
_________________
Kathy: still loving Ben, as he rests with God.

dano

Thanks Kathy for the info I feel much more at home with you two. I didn't mean that treatment was money dependent for my insurance has covered it but at this rate how long will they cover it? That's my worry. My radiologist told me ahead of time about the ears and possible problems. My ENT doc said that the problem I'm having with ear wax now is a good thing because when I first saw him my ears were damaged so bad that they would not produce ear wax. So things are going the right direction. I grew up in Oregon most of my life and winters there were nearly always boring, rain, rain and more rain. Storms were more exciting but we seldom got them. But I understand the your winters are more volatile. Getting 18 inches of snow in a whack is no fun. I remember the only snow storm as a kid that we had and I spent most of it in bed sick and we had nearly 18 inches. I didn't learn to ski until I was out of school and had a job where I could afford it, but it sure changed my attitude about our winters. Rain in the valley in the winter meant snow in the mountains and the more the inches built up in the mountains the happier a was. Now that I'm in Hawaii it is all a distant memory, cold now means anytime it gets into the sixties. In Oregon if I broke into a sweat I took a break, here when I break into a sweat means I started working. That was real hard to get used to. Well I hope Ben is feeling better these days. I feel great.....I always do before chemo. The work I was doing kept me at the same job location for months but that work is done and I'm back working at the shop, it is harder to regulate my work around chemo so I think I'll take off from work Tuesday.
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

I can't really write right now, I am still trying not to feel like it was bad news. Ben said it was better than he had expected: i assure you, I had hoped for a little better news. 90 days s/p chemo, the original lung tumor had regrown nearly half, has a new, "tiny" 'satalite' lower in the same lobe, and there is swelling in the lymph nodes in his central chest. The MRI showed only a decrease of less than 50% to the two brain mets. I cant say I was surprised, but a part of me had been holding out for an improvement. Guess I'd better give that up, and re-evaluate what I call good news and what is bad. This re shaking of our world continues, doesn't it. I am trying.....
The new treatment begins in a week, after a shot today, and a week on the folic acid supplement. He'll have the Altima every three weeks, the treatment is only an hour, and they all said that there are very few side effects. I believe Dano can tell us a little differently, if I remember his postings. ...
I gotta go - I'll cry if I keep this up- and there's no time for that now...
Thanks for being here...
Prayers and tears
Kathy
_________________
Kathy: still loving Ben, as he rests with God.

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