Remembering Dave
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Hey folks. I have been trying to post this all week. I just sat at the computer all week last week trying to write and just sit soooooo Thank you so much beth forposting for us. This is an excerpt from an email Karen sent to Beth which pretty mucc explains whats is going on. The pain is a little better and I actually went outside yesterday and watched my Dad do some yard wrk. You are all in my prayers daily , Please keep Karen and me in yours.
"Dave's not doing so well. His pain is uncontrollable, despite heavy use of oxycontin, oxycodone and gabapentin (nerve pain pills). He got a brain MRI and we saw the neurosurgeon again on Wednesday and got the news - three confirmed brain tumors. He gets a head PET on Thursday, the doc puts it before a clincial review board, and then we see him again next Friday to discuss the gamma knife, which he will more than likely be having. Can't
find a source of his trigeminal nerve pain in his face, so will probably inject an alcohol block into the facial nerves to numb them, will try to do
it along with the gamma knife but he has to see, he says doing that procedure in the gamma knife OR will probably drive the staff crazy with set up (smile). anyway, he hasn't had chemo since early April - the
topotecan was killing his blood counts and, according to Dr. S., killing HIM, so he pulled Dave off the topo and was going to start him on something
else yesterday, CHOPS is the cocktail - less effective, but less killing also. He used the term "qualify of life" which made me think "not much
time left".
"Thanks for asking about my mom. she had her gallbladder and half her liver removed last Wednesday. so I guess you will be joining her in the empty gallbladder club soon. everything went well, she spent six days in ICU and we could only see her for a half hour at 10 am, 2 pm and 6 pm. so instead of just staying at the hospital with her, I did alot of running back and forth, which was complicated over the weekend with Dave's parents gone to visit his sister, they took Faith which was a great help. But she went into a regular room on Tuesday and came
home last night, for a 72 year old woman who's had her fourth major surgery in less than a year, she did great. I am so very proud of her!
Fired the real estate agent for gross nonperformance and got a new guy, long story, but I KNOW he will sell the house fast. So am busy busy busy
trying to get the house ready as he requests, our old agent really dropped the ball on having us prep the house and especially showcasing the
riverbank properly. new guy is bringing out some high school football players that work on his farm for him to do yard work and stuff to get the
riverbank looking sharp, Monday after school. after that I imagine we'll hit the ground running, we're running short of prime selling season for
riverfront property.
David C
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Doug, a lot of good advice given here. I did not have swelling problems with the chemo cocktail you are having but no one person has the exact same side effects. I have run the gamout from washing all the sodium out of my system to pretty bad dehydration ( I was diagnosed by extremely low sodium). Guess the best advice I could offer is to go in and insist on a complete blood work. That should determine if you need a diuretic or maybe go on a fluid restriction.
David C
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Ok,Ok.....Good news and bad news here at "C"acres. Yes, last week was very rough on all involved here, emotionally and maybe even causing a little physical turn for the worse on my part culminating with a lovely Friday night date with Karen to our local ER. Don’t worry, there was no target practice taken at anything except that dern tree stuck in the river and the Kitty (JUST KIDDING). We pretty much had a good old-fashioned clearing of the air with everybody involved, long overdue. I think it did clear the air and brought everybody back onto the same page with the same objectives and goals. Yes, some feelings did get hurt among the masses at the table but communication around here has dramatically improved. Now all you guys out there, here are some tips on how to show your lady a good time on a Friday night. Now this takes some planning and some good old bad luck. All joking aside this is what happened. I had been feeling run down all week progressively getting weaker and more tired and started getting all over body pain. I did have an appt. at my Onc.s office on Wed. and met with the N.P. who is also very good. I was supposed to get Chemo but I decided to skip it so I could build up some energy for our trip to Myrtle Beach. We went over all my medications and dosages, and adjusted a few and got a few new ones (oh joy) . Thursday and Friday I started feeling worse and worse. I laid down on Friday at 2:30 and slept to about 7:00 when Karen got home. Now, when I laid down I was sweatting my A$$ of so I turned on the A/C. When Karen got home I so cold I was shivering she said ( the outside temp was only 50 degrees). I had a little bit of phlegm but I could not get a deep enough breath to cough it out. When I would try and get a good deep breath I would get excruciating pain in my left shoulder blade and in my chest. We took my temp. and it came in at 101.8!!!! Now listen close guys, here is my advice on showing your sweetie a good time. Go to the Emergency room. They have great vending machines and it is a nice quite place to hang out and talk and try and guess how sick all the other people there are. Actually we only had to wait about 30 minutes before we got called back. The Nurse was fabulous and we liked the Doc we had. I had a chest x-ray and then they sent me back for a CT scan due to they saw something on the scan they said could be pneumonia or might be a blood clot. Turned out it was pneumonia. Only time in my life I was thankful to have Pneumonia. They gave me two different super kinds of antibiotics through the huge bag of IV of fluids they were giving me. Karen and I had another lovely date at the ER lasting from approx. 7:30 pm until they cut me loose at 4:00 am.I have orders to get in touch with my Onc. on Monday to see about maybe getting a blood transfusio due to my counts. We did not even have to go to the after-hours clubs to keep getting those fluids. I woke Saturday and felt 1,000 % better ( the day we were supposed to leave for Myrtle Beach) . Today we went to Williamsburg and met up with all of Karen’s family for Mommy's Day at one of the best seafood restaurants I have ever been to. I loooooooooove seafood and know a good shrump when I see it! I would say am doing better. I felt better physically than Saturday but was a little less OK mentally. Karen and I snapped at each other a little. Please keep us all in your thoughts and prayers. I know I hardly ever post butt this Topotecan, my current chemo cocktail of choice is kicking my big old flat fanny. I do get on every day and read all of your triumphs and sorrow’s. You are all in my prayers everyday.
David C
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Andrea, I just sent you a recipe at your lchelp email. Hope it will be usefull. Please let me know you got and if you have any questions. It is pretty simple but you never know.
Thanks
David C
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thanks, Connie, I needed that!
Karen
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I don't think we're going to make our trip. Dave is sick. he's had a low grade fever all week with earaches, sore throat, and now a real bronchial sounding cough. he went to the doc this morning and saw the nurse practitioner who gave him scripts for an antibiotic. My mother's surgery has been moved from Friday to Wednesday, which means, we would leave here tomorrow, stay in one motel, drive another hour, stay in another motel, drive another hour and a half, stay in a third motel (this one on the beach in MB) and then on Tuesday drive home for my mom's surgery on Wednesday. Even if we were both 100%, it would be alot. But take me, tired and stressed, and Dave, VERY TIRED and VERY SICK and a three year old - not looking so good. so I turn in the MB hall pass unused.
I also think I'm going to take a break from the board. I come here for support and advice when I'm not doing well. As a caregiver. But Dave's family does not like me airing my problems for the whole world to see. I wasn't aware any of them got on this board, well, BeckyCW is a board member but I haven't seen her post until someone told her about mine yesterday. I like to think I provide more support than I ask for, in fact, I think I do. Also, I think it might help others going through similar crap to share things. In fact, I've gotten PM's to that affect. But to avoid even the slightest temptation of pouring out my thoughts, stresses, problems, I just gotta stay off the board. Because all my thoughts, stresses and problems are related to family in one way or the other. I've always been one to be open about my feelings and thoughts and I think it's a healthy way to be. And this board has become somewhat of a lifeline for me. I worry about everyone. I care about everyone. There are a few of you that used to annoy me, and I have come to love you. But the next time I have an anxiety attack at work, I'm just going to go into an empty office and cry my head off.
Thanks for the help everyone has given me. I hope Dave decides to start posting again. I hope he gets out of the funky depression he's been in and comes back with his naughty sense of humor. I know everyone misses that, and to be honest with you, so do I.
God Bless,
Karen
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Fay, through all my trauma yesterday evening, I had you in my thoughts, and I kept my cell phone with me in case you called.
I hope everything is OK.
God Bless,
Karen
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for everyone who participated, if you want to call it that, in my post yesterday, everything is OK now. well, not really OK, but somewhat settled down.
My concerns about Dave still exist. I still don't like having a gun in the house, but it looks like it's going to stay. But at least his mother and I are now on the same page about most issues. Now if we can just get Dave out of his funk and move forward, as she and I have agreed to do. Again, I'm really worried about him, and I'm worried about me. I fight the depression demons every day and all the stress I'm under has been putting me at a disadvantage with that.
Maybe one reason I posted was because everyone says they don't see how I do it. Well, the truth is, I don't "do it" very well at all. I'm terrible at it. Yeah, I go to work, yeah, I manage to get Faith fed, dressed and bathed. Yeah, I try to be a wife or a companion to Dave, and I do stay on top of his treatment and medical issues. But I'm barely doing any of it, and most of it pretty poorly.
But hopefully things will be OK now. Maybe we'll get our house sold this weekend and the financial stress and the commuting stress will go away. we'll see.
Karen
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That's too bad. Although everyone has an opinion, no one should judge anyone else on this board, because we're all here for support. SUPPORT!!
I'd like you to quit because I want you to get better, but I'm not going to judge your decision, and I sure wish no one else would, either.
Blessings,
Karen C.
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oh, yeah, the hat! I won't forget the hat! I bought the BEST hat for sun when we were in Montana, can't wait to wear it again, and I'm not a hat person! and yes, sunglasses, always for me.
Dave always wears a hat. he's just a hat guy. but I imagine he won't spend alot of time on the beach. he doesn't like the beach anyway, he doesn't like all the sand or something, and I bet he spends alot of time resting in the room.
thanks everyone, I'm excited! now, if I can find time to shave my legs, get out my warm weather clothes, pack, and help get the house ready for the open house the realtor is having on Sunday, I'll be good to go!
Karen
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yeah, what kasey said:
the beginning of nothing but good things!
amen!
Karen
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Ginny, way too funny, but what a good reminder about my melanoma! I know, I've thought about that, what am I going to do? well, I'm going to put on my sunblock, my long sleeved tshirt and the special expensive open weave sunblock shirt I ordered on the internet, and wear capris on the beach. that's what I'm going to do!
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all I have to say is:
LISTEN TO GINNY.
I was doing the same thing, or close to it, a month or two ago. all the what ifs of Dave dying ran through my head. Ginny, actually, pointed out to me that I was grieving in advance. hmmm. I was! so I just stopped.
LISTEN TO GINNY.
EVERYTHING WILL BE FINE - EVERYTHING!!!
Luv ya, girl,
Karen
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I'm not the patient, but I fully understand where you're coming from on all fronts, Becky. Especially the not starting a support group thing. and the privacy thing, of other patients. I keep thinking that Dave and I should try to start something here, but I just honestly don't have the time. Like you, and for alot of the same reasons.
anyway, we were so EXCITED to meet JustAKid when she joined the board last summer - because finally we knew someone in our city with lung cancer! and someone our age! of course she has NSCLC and Dave has SCLC, but, still, they're about the same age and we know her personally! Crazy! and now we care as much, no MORE about Beth and her family than the friends we've known forever. but how can we live and work and move around in the same town with Philip Morris USA and thousands of residents, and not have known anyone else with LC? weird.
I feel the same way about the families we traveled to China with. Spend two weeks in close quarters with people doing the exact same, life changing, thrilling, adventure of a lifetime, and you're bonded for life. and there's not a soul amongst the 15 families that I wish I'd never see again. I love them all.
anyway, I really get what you're saying. it is so HUGE when you meet someone with the exact same experience.
Karen
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Dave has sleeping pills. he started off with Ambien, but he said they gave him nightmares, so he got something else and I cannot remember the name. I'll try to find out and post it.
I'd try a sleeping pill.
I take one or two benadryls at bedtime, in less than an hour I'm dozing. and have you or he ever tried melatonin?
Karen
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Not camping. Dave isn't well enough to tow and set up the travel trailer, even with my (limited) help. We are getting together with two families we traveled to China with, and staying in hotels the whole time. we're spending two nights with one of the families, but staying in a B&B even though they want us to stay at their house, Dave needs a place away from the bedlam to rest. and it will be bedlam at their place! Lots of kids and people in general.
Karen
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Requesting a hall pass for the Chapman Trio. We are heading to SC on Saturday. We're getting together with two families we traveled to China with, first stop is Hartsville, SC, where one of them live (home of prestigous Coker College) for a day or two and then on to Myrtle Beach for a day or two. Dave is skipping chemo this week to help him be able to make the trip.
Looking forward to a little get away with good friends, although my mother's major liver surgery is scheduled for next Friday (we're coming home on Wed.) but she told me yesterday afternoon they might change it to Wed., so that will necessitate a Plan B. (I don't even have a Plan B, will have to make one up on the fly). Probably just cut the trip short a day.
If anyone sees a silver subaru flying down I-95 on Saturday, get out of the way - we're leaving town and taking no prisoners!
Karen
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Lenda, this is a support group, and you are a survivor. That's what we're here for. I hope we can help you. we're here to help you. and believe it or not, your very presence will help someone else. so welcome, and share with us all you want.
I'd be pretty darn mad at those doctors, too. enough I don't like frivolous law suits (I'm a legal secretary) I think I'd be mad enough to look into suing them. They sound pretty negligence.
You hang in there, and I hope things get better for you. I can't even imagine how tough this is. it's hard enough to lose a spouse, but to know it might have been prevented makes the wound sting even more.
God Bless,
Karen
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Well, Connie, I'm so glad you're back on the board, shaking things up a bit in your charming way! (I mean this with affection, absolutely).
What I sort of like about the Bushes is their human-ness. "W" used to be a partier, drinker, now he's totally on the wagon, but admits to his past digressions and what he learned from them.
Laura sneaks a smoke every now and then. I hope that's the extent of it . . . but it makes her pretty human.
Karen
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Sandy, you do an AMAZING job of dodging the bullet! this is great!
Karen
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OK, just a dumb shot in the dark, but tumors have blood vessels feeding them, when the tumors start to die, what happens to the blood veseels? don't you think they'd sort of "break off" from the tumor? maybe that would cause some pain?
Karen
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Peggy, yipee about your son! Wow, I hope this is the beginning of a clean bill of health for him!
Now, about your husband. I don't know if you remember this or even saw it at the time, but about mid-February, when Dave started his new chemo (topotecan) and zometa for his bone mets, he started getting some really bad pain, it would start in the areas where he had bone mets and radiate, like from his hip met, radiating down his legs. He had joint pain. After a while, the onco doc figured it was the zometa, and getting the zometa with the chemo made it all worse. I was worried sick, SURE that the bones mets had spread like wildfire, but when Dave had a bone scan done, they weren't any worse and were perhaps a little bit better.
So maybe that's what it is, something related to the zometa and/or chemo.
Just a thought.
Hang in there kiddo! My hero!
Karen
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Sharlene, I do think at this point I'd be kicking his butt or something.
Could you go with him to these appointments, to make sure he gets there?
Was the Welbutrin giving him the stomach problems? Geez, should have kept him on it, I mean, if he'd been on it for a few weeks, it would have started working after a few more.
I don't know what else to say. It's hard. I've been very very depressed before. But I never became catonic. I guess my depression takes the form of anger and irritability more than anything so I don't understand this, but everyone is different.
Hang in there. I don't know what else to say.
Karen
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Wow, thanks for bringing such a peaceful perspective to all of us (especially me, I need it right now).
you are so right. I will try to remember your words as I go through each day, especially when the going gets tough.
God Bless,
Karen
Okay Cindi, welcome back !!
in GENERAL
Posted
Cindy, I am sorry to inform you that I cannot approve of the humble abode you describe as your new home. That kitchen is clearly not large enough for a properly stocked bar and all your kitchen gadgets and such. You will have to move AGAIN!! OK,OK just kidding. Sounds like you really like it there and I seriously hope you enjoy it. It sounds nice with the Missippi (sp?) river and with a lot of colleges there there will always be energy in the town. We presently have a few high school kids moving boxes, large furniture and misc. stuff to our storage place. We are working hard to get our house sold and move closer into town. My mom, dad and Karen have been working thier tusch's off decluttering the house.
Again congrats on the sucsessful move and god bless you.
By the way save me a Sam Adams.
David C