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

dano

That's obvious Kathy, But to me me it's just a fun idea! I love to travel.
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 Jan 28, 2009 8:45 pm Post subject: Update on Ben

Hello all, It has been a bit, but I am here to update. He has fallen asleep in the chair watching the Celtics game. I know he's asleep because I just heard a couple of bad calls , and he's not swearing. Sometimes he gets anxious when I am on here, he has an altered timesense ever since the initial seizure almost 10 months ago. He asks me repeatedly what I am doing, but can remember the flavor of the cake in a picture taken in 1972, who's birthday it was, and how drunk his mother got. I digress...
Yesterday, his labs were all great, and the treatment went as planned. He has body CT scan scheduled for Feb7th, and the effect of the Alimta will be judged on his lung tumors and lymph swelling. I was surprised that they did not order a brain scan as well as they had been so concerned about that before. May be it is because if it crosses the brain filter- great: if not, there is nothing that can be done about it as he has had all the rads he can? I don't know. He had lost 4 pounds, and was prescribed Megace. He started it today, and ate more for supper than I have seen him eat of real foods in several days- if not weeks. Megace either works- or it doesn't, so cross my fingers...
The treatment always leaves him sleepless for 24-48 hours, these days, so I wind up interviening distractions so he is left to sleep when he can finally sleep. David, our 18 yo, is a big help: the 28 yo independant daughter, single mom of 5yo boy- is another matter still. The line I walk is a real pain in the ass, and I have been telling her so more often than not these days. Means- she sometimes will not speak to me for days- but it is quiet.
I am on vacation this week, and have planned my next week off for his next treatment week in Feb. also. The company I work for, changed my job, and to avoid needing to find a new one, I had to accept a supervisory position, and salary pay. I will actually loose money, as I will not get OT, Differentials of any kind, and must take holiday and vacation time, or loose it. So, that is my sign to take time as I should to not loose it. And enjoy my family. It is not all bad- the pay ensures the family will remain elligible for the complete medical coverage we have now, and pay very little for.
Ben wants us to get the disability going, as it will be a year in april.
.
. Rolling Eyes

.
Ayear - a year of change- such a year....
I think we are good, and doing good. I finished the latest scarf, and had to begin another one, needing a knitting project going - like I used to.
Ben has been making jewelery again, and has gotten his pens out to begin more clothing.
So, that's about it, 'cept what I answer for others here. I have come to rely heavily on this forum, and you have all become close to me, minus the miles between us. I Thank you and pray for you all.
God Bless Wink

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

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

((Kathy)),

Thanks so much for the update. You've been quiet lately, but I understand why now. I didn't realize the fall-out from the seizures. You really do have a full plate and how nice that your company decided to pull a number on you. Like your life isn't uncertain enough? Good that there is some type of silver lining regarding the medical coverage and your ability to spend time with the family by having to take the vacations. I guess I didn't realize you worked. (Memory is not one of my strong suits. Rolling Eyes

)

I never understood the rhyme or reason behind the lack of brain scans either, but then my husband never had brain mets. Sounds good that he's having some appetite spike with the Megace. Whew! Anything that works, right? Oh goodness, the sleep thing. I remember that well. However, whenever, and try to control what is going on around the house while they are sleeping. We had (and have) an adult son who lives with us and he was good while his Dad was dozing in the easy chair. We also had another son/dil living with us for a few months at one point, but they too were very quiet.

As for making one of our kids mad? Too bad, so sad. They don't quite see it the way we do as a spouse. A five year old in the household certainly complicates things a lot. I was VERY protective of my husband and I'm sure you are the same. The concentrator always made enough noise to cover most household stuff. They so desperately just want to sleep during certain times of their treatment. I'm sorry that Ben has difficulties during this period of time -- it might be the steroids. Makes them zippy. Some chemo's enhance anxiety too. Are you guys having fun yet?

Congrats to you and Ben on one year of survival! That's a nice benchmark to reach and it's good to hear he is still involved in some of his interests. That's a great sign.

Let's hope this line works well for him with the upcoming scans.

Thanks again for the update. We're here when you need us -- you know that!

God bless and hugs being sent,
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 Feb 13, 2009 11:34 am Post subject: update 2/13/09

We are very happy. friday the 13th has always been a favorite day of mine, so I will share the good news of late. Ben had a CT scan done last saturday, and the oncologist called him tuesday. The original lung tumor was shrinking again, and the satallite that had been seen before was gone, and the re was no lymph swelling seen. He has a chemo tues coming, and is scheduled for an MRI the Sat after that-of his head. The doc wasn't real happy that the MRI hadn't happened at the same time, but he was the scheduler- not i. Any way, I am hoping that there will be progress seen in the tumors in his head- enough so he can come off the dopey Keppra. It is almost like a 'down' to him. he'll take it, as perscribed, and looks sideways at me "I hate downs" he'll growl. But , without the fear of a seizure being dispelled , he takes the anti seizure med. He has been making jewelry again, and even done some work on the clothing that he has ongoing.
So, so far , so good.
Love to all, Wink

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

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

Kathy!

This is grand news! Whoda' thunk Friday the 13th would be a time for good stuff. Go figure. I'm so glad you posted this info. Way to go Ben!!!

Better yet is that he is having interest in things that he enjoys. Always a good thing. Very Happy

I hope you get good news from the MRI too. That would be the icing on the cake, wouldn't it?

I couldn't be happier for you and the family that Ben is showing a response to the Alimta. Let's keep up the good work over there.

Thanks for the update and let us know about the MRI.

God love 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: Tue Feb 17, 2009 12:14 am Post subject: update

I'm prayin' real hard. I'd like to see him walk a little easier- he is so unsteady, I find myself worrying about him falling. He reassures me he won't fall , cause I have a big mouth, and have already said it aloud. So, Ben's chemo tomorrow, and i just left the docs today- I have bronchitis now- is it not always something?? Shocked

So, I'm praying real hard- love to all!!
_________________
Kathy: still loving Ben, as he rests with God.

dano

Hi Kathy;
I'll join you in your prayers, nobody deserves a break more than Ben, you are both great fighters. Keep up the good work.
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

Glad you and Ben got some good news Kathy! One day at a time.....

Gillette · Posted: Tue Feb 17, 2009 7:24 pm Post subject: up dated hubby...

My thanks to you, and thank God FOR you all. Treatment went well, doc says the beast is responding to the alimta. I asked if it meant that we caught it before the cancer got into the lymph system- and he quickly, expertly, and carefully redirected me by repeating that the cancer is responding favorably to the alimta. Thus, giving me my answer. He is an interesting guy, but very good.
Gotta run,
God Bless us - Every One!
_________________
Kathy: still loving Ben, as he rests with God.

dano

Hi Kathy;
So the Onc let you know that his crystal ball is out for repairs huh. Mine is the same way! Laughing

They prefer to be more of a cancer health manager I think, trying to read the tea leaves is fun but not all that realistic or dependable. I think our doctors are trying to hold onto reality and understanding in there own lives, they don't have too many patients that survive long and they hate seeing patients they care about hurting and uncomfortable. So any thing they see that is a positive they will yell out to the nations that it is real good news. Because if they can help give the patient a brighter outlook may be they will heal better. As an electrician I really like making the customer happy by fixing things most people don't understand, I couldn't imagine what it would be like to fix something and have it go bad again in a few months, it would be real discouraging. All of us cancer patients are living in homes with termites and there is noway to tent our homes, the homes are sprayed and it seems to help but mean while the bugs are eating away inside and we can't see them and the treatments stink and are unhealthy them selves. Little by little we loose parts of our home to the bugs, being able to tent the house is what a cancer patient wants, a cure. We can only pray for now that we are in Gods tent and get his healing. Sorry if I'm a bit chatty, I do want the best for you and Ben.
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

mcw · Experienced user Joined: 25 Jan 2009 Posts: 51

Kathy,
Thinking of you and Ben, both of you have a great attitude!
Dano, that was a fantastic analogy, wish we could exterminate the termites without tenting or burning down the house. You're right, being an oncologist can't be easy.
Kathy, take care of that bronchitis, you need all your strength.
Hugs,
mcw

Gillette · Posted: Wed Feb 18, 2009 10:42 pm Post subject: update ,hubby..

Dano, you can be as chatty to me as you like, my friend. Thanks to all, the support means alot, and my normal-now needs you all in it.
I cannot imagine what it is to do what the Onc. does. I see CNA's/ RN's/LPN's get burned out in the long term care setting I am in, and cannot imagine... He knows I am smart , too , as I have jolted him a couple of times, and made him aware, and at times, uncomfortable with my questions. He doen't take offense anymore, just answers me, or redirects me in a way that he gives me the answer. Any way...
The MRI is sat, and I pray for a path to reduce the antiseizure med....we shall see. It is in His hands, and we pray alot. Smile

Good night, Wink

and God Bless you all for being here for me.
_________________
Kathy: still loving Ben, as he rests with God.

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

Best of luck to Ben, Kathy. Keep us informed. By the way, in October, I took a road trip to that enchanting state of yours. We took the scenic route along the ocean out of Portland up to Bar Harbor and Acadia, then went up the old Canada Scenic Highway to Jackman, visited with a Canadian friend of mine who came over to see us, then we drove over to Moosehead Lake, etc. Then headed to New Hampshire, VT, NY, PA, and MD. Maine is absolutely wonderful. Maine and New Hampshire were my favorites. But....in spite of getting up early and looking at dusk, and upteen "Caution-Moose Crossing" "Danger-High Moose Crossing Area" signs, didn't see the first moose! Drat!! Did get to see the pandas at the National Zoo though.

Dano, you missed your calling, my friend. You should have been a therapist. I too loved the analogy. My mom would have gotten a kick out of it. I sure miss her, bless her heart.

Gillette · Posted: Thu Mar 19, 2009 4:31 am Post subject: struggling and speechless

the subject says it all- I'll share the words, once IT becomes words- it ain't right now. All indicators say all is well, nothing but good news.
so why am I struggling and speechless Confused

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

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

Because you live waiting for the other shoe to drop. Not an easy life to always be hanging on the edge Kathy. I hope the treatment continues to do the job for 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

	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 4 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