Remembering Dave
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this is the most incredibly loving, generous, open minded, thoughtful, cool thing I've ever heard of someone doing for someone else.
what a neat idea.
and I love Luna, even though we have two perfectly made choc. labs, I love cats and dogs that have some special quirkiness to them. I have never seen a cat face like the one Luna sports!
Karen
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Just saw this. I'm a little behind on other's posts due to all our crisises.
I think it's a wonderful and appropriate sentiment Curtis, aren't you glad ya'll bought that tshirt?
but I like to make tshirts with iron on transfers and I have to tell you, well, I might steal the idea for Faith!
I love the stuff you share with us.
Karen
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Fay, true musicians love and respect other true musicians. I have no doubt these guys will think you rock, no holds barred. these things I've learned from my wonderful husband, who for 13 years made his living as a musician.
I want to see the videotape of your concert. Nope, I want to come for it. I kept thinking before Dave's current recurrence that this spring he and FAith and I shoujld take a long weekend plane ride to California and try to meet you, visit Becky, catch up with Andrea, etc. and who knows, we may do it yet, Dave's chemo only lasts into May!
Keep us posted!
Karen
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Addie, IMAGERY WORKS and I LOVE your hardhatted cocktail waitresses serving chemo to the cancer cells is the best I've heard. Dave used imagery for his first chemo treatment, some for his second, and I firmly believe it contributed.
yes, it's got to be the zometa and toptecan combined. they're going to do more investigating, in the morning we're going to see our dear radiation onco doc so he can take a closer look at the hip xray, but our onco doc says it doesn't look that bad to him. and dave was having intense pain in places where he doesn't have cancer.
thank you for inspiring us to live life through it all. Bless Dave's heart, he's trying. he went with me to pick Faith up from daycare and then on to Becky's hotel room where we had a pizza party and it was the most fun we've had in weeks, mostly due to Faith entertaining us
glad to hear things are going so well, and glad to hear that your docs keep saying IT WORKS. our wonderful onco doc keeps telling me to hang in there, he's not giving up on Dave. trust me, when you hear about so many negative or OVERLY realistic or statistic driven attitudes of so many onco docs, hearing his soft, comforting voice saying this makes me stronger than titanium.
God Bless you my hero,
Karen
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AND again, a big thank you to Becky for coming out, we would not have gotten through the week so far without her.
and To JustaKid Beth for showing up at the ER. She looked so good and was so perky and funny (her usual self) that it lifted Dave up, you know he kept saying how good she looked and that's what we're here for, to provide HOPE for each other and support.
We both slept all day today and Dave feels well enough to go into town and eat out! So off we go to pick up Becky and then Faith from daycare and get a bite. I ask God for miracles, we're getting a small one now, could I have even imagined yesterday Dave would want to go sit in a restaurant today?
THANK YOU GOD.
I feel my savior Christ besides me now.
Love to you all,
Karen
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first of all Thank each and every one of you for your prayers and thoughts. I have never been in so much pain in all my life. The pain was so bad I cannot/could not explain it. It was mostly in my left hip and knee sockets and left shoulder and elbow sockets. I could barely move. They loaded me up on pain pills and sent me on my way the fist time. Later in the evening the pain came back much, much worse. It even hurt to stay still. OK, enough of that. I will have multiple pain releiving medications here at home from here on out. I am still pretty foggy headed from the drugs but hey......no pain. Karen has been a complete Angel Not to mention my sister Becky from LA who has been a tremendous help to Karen in watching Faith while Karen deals with me.
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I saw Beth, Dave saw Beth, and Becky got to meet Beth and talk for a while, and, Beth,. gotta tell you that both Dave and I remarked on ow wel ou looked!
A big thank you to "Cousin Beth" for coming and giving us some moral support today, and I know that Becky really enjoyed meeting you. We all need to meet more ofiten, but instead of hospital waiting areas, how about nice warm beaches somewhere?
Karen
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Becky Faith and I got home around 6:30. Dave was in bed WRACKED in pain, MUCH WORSE than earlier in the day. Oh my. he managed to come downstairs, sat down, and started describing the pain to me. said it was definitely in his bones, his hip bones, his thigh bones, his knee. awful excruiating pain. the church where Faith goes to daycare has a church supper every Wed. eve. so they had packed us enough supper for the four of us, home cooking to be sure, BBQ, new potatoes, cole slaw and applesauce. so we ate, somehow Dave was able to get some food down, and suddenly he looked at me and said we HAVE to go back to the ER NOW. and I must point out he'd already had, oh, four percosets in an hour or two maybe? so Becky and I got Faith in the bath, dogs in the kennel and off we went.
I have to give Becky a big gold star for being tricky Aunt of the Year. Somehow managed to get Faith her bath, ready for bed, rocked to sleep, all without Faith realizing we were gone despite repeated queries.
Anyway, the ER was packed. Looked like a bunch of flu victims to me. I begged and begged and begged, and my Dad, who showed up and who always shows up when I tell him we're headed to the hospital, anyway he begged, too, please take my husband/soninlaw back, the pain is awful and he may start screaming out there! We even had to get a wheelchair to get him from the car to the ER because the pain was so bad he was afraid to fall. anyway, they finally triaged him after an hour or so there but then told him, sorry, no room in the inn, so you'll have to wait in the waiting area again and no pain meds until a doc sees you which won't happen until you get a bed. anyway, the three of us sat there and watched West Wing and Law and Order, then discused what to do, my dad decided to go home in case Becky needed help with Faith in the morning, but all the while, after popping even more percosets, Dave's pain started stablizing so finally around midnight we decided to leave, things were much better.
I had talked to our dear onco doc earlier in the afternoon about Dave's reaction and he said he wasn't sure, but he thought getting the zometa (for the bone mets, not a chemo but to build up bone) and the topotecan together could cause alot of the painful symptoms Dave had. After the pain stablized, I told Dave, maybe the zometa gets right into your bones, and the chemo rides along with it, gets in there and then starts wreaking all kinda of havoc. and maybe, just maybe, all that means is IT'S WORKING.
I know all my posts are rambling, but it's good therapy for me, sorry, but maybe our detailed learning experiences can help others.
anyway, I'm staying home with Dave tomorrow, Becky will be around alot I know, but I'm not ready to leave him all day yet. besides, I'm going to be pooped tomorrow, it's late and I'm tired!
And I am thinking too about how lucky we are to have the support systems we do, especially our family. My 75 year old dad left my cancer stricken mom at home to come be with us in case we needed anything. God Bless him.
God Bless us All!
Karen
p.s. I told Dave that I was so sorry he had to go through all of this, but if months of agony resulted in saving his butt, I didn't care, be in agony! I would take it from him if I could but I can't.
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This is Karen. He's OK. well, he's okay, considering. Beth, by the time Becky got back to where we were after talking with you out in the waiting area, they had come in and said he could go home. his bloodwork all checked out OK and his sodium level, which I was SURE was dropping, was actually up by one point since last week. they just said the chemo, and probably the tumors, were kicking his butt.
I have never ever seen Dave so wracked in pain and nausea from chemo. and he's had some pretty toxic chemo, twice. wonder if it has something to do with the fact that his last chemo was only 6 weeks ago? I'm going to talk to Dr. S. today about it all. The ER docs called and talked to him. and I just talked to my Mom, who was supposed to have chemo today but Dr. S. said no because she's still not over the side effects from two weeks ago. and he's pulling one of her drugs altogether.
anyway, Dave is asleep now and I'm going to run a few errands, then get Aunt Becky to go with me to pick up Faith and bring them all back to our house for some supper tonight.
guess I'll try to work tomorrow, Becky will probably hang out with Dave (she got a hotel room so she could work using their high speed internet, we just have slow, patheticially slow dial up out here in the boonies).
please keep the prayers coming. AFter reading the topotecan brochure, I see how much we need them!
God Bless,
Karen
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Sandy, great quote. you know over the weekend we were the deer caught in the headlights. but now we are channeling our fear into some real proactive fight.
Berisa, I Love the photo of your beloved Dad. you know how much you and your family are in my heart, because Faith came from your part of the world.
Fay, man, if that had happened to us, Dave would have exclaimed out loud "cool!" and we wouldn't have gone anywhere. oh, life with Dave, it does teach you to let your guard down!
thanks for all the support. everyone. I have to tell you that Monday morning I got up early, alone, and feeling very alone and despondent, and I logged on and starting reading replies to our bad news post and I gotg really lifted up, it inspired me to go hijack the oncology nurse for some action and carried me through the day. to everyone I owe a huge thanks for the support.
Karen
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I cannot tell you how happy I am that Lucie's liver tumor is manageable and treatable with the RFA. Burn, sucker burn!
God Bless you both,
Karen
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Kate,
Our deepest condolences. You are way too young to lose a parent. At age 27 I knew nothing of these burdens.
You sound like you are doing OK and you will get through this, but stay with us for support if it helps you. We love you.
God Bless,
Karen
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well, all of that truly stinks, and the only thing I can think of is, well, she is, after all, your sister - and even if she doesn't want you working there and even if you don't want to be working there, can't she at least work something out to keep you on the company health insurance plan? Because she is your sister?
I sure hope so. If not, keep it through COBRA until you can get another job and more health insurance.
Keep us posted,
Karen
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When I grow up, I want to be Fay.
And I am going to live every day like it's my last day. and I don't have cancer. Thank you for the reminder.
Fay, we did try to go to the circus, but Dave only lasted about 45 minutes. That's OK, because we went, and Faith enjoyed it while we were there, but the circus, frankly, was horrible this year so we lost nothing by leaving early. but at least we did it, and we did it in the middle of a crisis. Lesson learned: we had our doubts and apprehensions about going, but we went. maybe we didn't do it up big, but we did it.
thank you for being a big inspiration to all of us.
p.s. I am such a tomboy that I HATE getting dressed up, but I love the idea of your girls night out!
God Bless,
Karen
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Addie, I've been reading what's going on with you but haven't posted anything because I've been so devastated and caught up in Dave's current fight. You guys are pretty close to being in the same place. I am so glad that your onco doc and his staff says it does work. Our onco doc had just finished up with a patient in the room across the hall that has a sclc recurrence and is taking topetecan and it appears to be working, I think he just started really.
It doesn't matter our age. we all have things we want to get done in our lives. living the gift of life that God gave to us is important, and the best way to do that is to live each day to it's fullest, like Fay said in her post Monday, and like DeanCarl is living through example every single day.
I just talked to Dave via cell phone and the chemo is dripping as we speak. Our very own BeckyCW (Dave's sister) will be here in Richmond any time now and I so welcome the hands on support.
Addie, let's hold hands through cyber space and walk this path together. I have HOPE and OPTIMISM that this drug will work for you and Dave.
God Bless everyone and thanks for your love,
Karen
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Took a xanax in the onco doc's waiting room today. was my first time. been putting it off b/c didn't want to be a zombie and have to take care of Faith and Dave. Man, that stuff ROCKS. Didn't zombie me, but it was sort of like, well, it made it impossible for me to cry. that was all. it was the first conversation I've had about Dave in four days that didn't involve sobbing!
see my post under General for an update on today.
Better living through chemicals!
Karen
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what a weekend. after getting the devastating news on Friday about Dave's bone mets, we were crushed. and I watched Dave go steadily downnhill over the weekend. all of a sudden he realized why he'd been feeling so bad. so bad he'd been trying to ignore it. and now he could ignore it no longer. by Friday night he was feeling bad. he woke up Saturday morning in pain and could barely move. Saturday night he slept hard and unusually long and would fall asleep in the chair on Sunday in the middle of a conversation. I was getting worried and panicky. I thought he was slipping away in front of me. He also admitted he was becoming deeply depressed - Dave, the most mentally in control person I have ever known in my entire life, becoming visibly deeply depressed.
Soo, this morning, after I dropped Faith off at daycare, I decided to just pop into the onco doc's office (literally a half mile from daycare) and insist on talking to either the doc or his nurse, making sure they knew about this diagnoses immediately (he was out of the office last week), making sure they would immediately start a plan of action, we HAD to be doing something, Dave and I were going crazy with worry and I was worried about his physical and mental condition - not to mention my mental condition. I hadn't stopped sobbing all weekend. Which made Faith just cling to me like velcro.
Parked the car, got out and saw the nurse walking up the sidewalk. Told her, in between blubbering, what was going on, she was shocked. Said she'd get all the scan results together, put it all right in front of the doc as soon as he got in, find a patient she could switch Dave's Wed. appt. with for today, and would call on my cell to let me know when to come in.
12:30. Met Dave there, this was after my 9:00 appt. with Faith's shrink (what a Godsend and angel this woman is) and my 11:00 appt. with my shrink (who listened with great empathy and got me focused on the logically obvious - once we met with the doc and got a plan, we'd feel better.)
Ok, so the plan is, Dave starts tomorrow on chemo Topotocan (sp?) and an iv med, zometa, which is to strengthen his bones. RFA is out for the liver met, because of the chemo - doesn't want to do any surgery b/c the chemo would interfere with healing. hopes the chemo will get the liver met. He was going to order radiation to the hip met, but after questioning Dave, decided he wasn't in pain, it just felt weak, and he didn't want to radiate and kill bone marrow while he was getting chemo. Makes sense. Did order xray of hip to see closer what damage was there. said the spine and hip mets were spots, not one big long tumor.
What I don't want to say here, but I will, is that we asked him - is this chemo to prolong his life, make things easier for him, or this a possible cure. He said he wouldn't rule out a cure, but without a miracle, Dave might have six months left. I asked him, have you ever in your practice seen what you would call a miracle? Answer, Yes. OK, I said, I believe that miracles don't come easily. Miracles have to be worked toward. God helps those who help themself, in whatever way they are able. We are going to think positive, do what we can, and ask God for a miracle to happen through this chemo. I asked the doc if he believed that's the way it worked, and he said yes, that sounds right to me. So the three of us agreed, we are working towards a miracle, and we aren't giving up. so much better, because at one point over the weekend, Dave said he wasn't sure he could take any more fight. but he can, I know he can, and I, and his family, will get him through it.
We feel better, we CAN do something, but we're scared. I can't begin to imagine my life without Dave, Faith's life without her daddy. I can't even imagine what Dave is feeling. I know his faith is strong, and he can be ready for the next step, but I know he doesn't want to leave us. but I REFUSE to believe this is it. I won't give in or give up. and neither is Dave. I told him that I think I've been taking the whole cancer thing for granted. I've just always assumed that no matter what, he'd eventually kill all the cancer in his body and be ok. But now, it's literally life or death, no question about it.
The thing with small cell is, it's just so aggressive, so sneaky, so fast growing and moving. It's not a cancer you can stablize and live with for long periods. It seems to be either kill it or die.
Well, I will close now. I know everyone will ask God for a miracle for us and I greatly appreciate it.
God Bless us all,
Karen
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Bumping this to the top.
I'm scared, scared, scared.
Dave is not doing so well. He hurts all over and is down in the dumps, an understatement, Not like him at all.
I'm sitting here in the dark alone thinking, we need to take deep breaths and start another big fight!
faith is awake, gotta run!
God Bless,
Karen
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Rosey, lose your job? because you had therapy? what kind of work do you do?
at my job, if you're having personal problems they can practically make you go to therapy, or at least make you go see the employee assistance people.
how is your husband doing? I just noticed that he has sclc with mets to the spine and now so does Dave. wondering how his spine is doing.
Karen
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I have an ambien prescription but don't use it much, taking a benadryl at bedtime seems to knock me out sufficiently.
I think I'll just take the xanax before I walk into another doctor's office again.
Karen
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Hey, Schmay and Frank, you guys are HIILARIOUS.
Man, if I could only find a 20 year survivor who had ext. sclc with mets to the spine and liver, I'd be a happy girl.
I almost had a breakdown in the radiation onco doc's office today when he gave us the news about Dave's spine mets. the good doc handed me a script for xanax, and I'm not even his patient, ha. so I enjoyed your exchange.
Karen
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I'm in . . .
Karen
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Fay, you are too much.
A well deserved and hard earned pity party.
I very very much enjoyed talking with you on the phone the other day. you have a beautiful voice, oxygen deprived or not.
Love and blessings,
Karen
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Karen and I went to my Radiologist this morning and got even another surprise. He verified that yes, there does appear to be a tumor on the surface area of my liver, He did not give me any kind of a measurement on it but indicated that it is pretty large, will have to get more specific info on this. He then said that the PET Scan showed it had also spread to my lower spine and hip bones. My Oncologist is out of town until next week so we have an appointment to see him on Wed. to go over any treatment options which might be available etc, etc. and get a plan of action. In the meantime we are all going to the Ringling Brothers and Barnum and Bailey Circus tomorrow. I played trumpet in the band for several years back in the 80's whenever they came to town. Faith should love it, if she can stay awake. Please keep us in your prayers
David C.
I LOVE MY HUSBAND
in CAREGIVER RESOURCE CENTER
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This is nothing more than a monument to Dave. I know I've gotten on here miserably complaining about him, but that was nothing more than my trying to get through a hard time.
That being said - and not being said just to clear up why I'm posting this - here it goes:
I love my husband very much. We've had a rocky marriage at times, going through infertility heartaches, financial difficulty (never in trouble, but at times never feeling like we'd get ahead) - him not finding a career that "fit" for awhile but then he did (and those folks are the best employers on earth right now . . . ) etc. But there is no one on the face of this earth that I can ever imagine feeling so comfortable with. He is a part of me. and I probably wouldn't feel so strongly about him if it weren't for all the bad times we went through.
He's also a great guy and a person who's friends love him and are loyal to him. He's a good daddy to Faith and she needs him as much if not more than I do.
So, Dave, if you read this, I'm sorry for every cross word ever exchanged between us. It breaks my heart to see you so sick. I want everyone to know that you are just as great a guy as you seem to be on this board.
Love,
Karen