Remembering Dave
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MO - Get better - we miss your smiling face!
Karen C.
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Janet,
I must tell you I am very glad that you have calmed down, got more information, and came back.
I wasn't trying to condemn you at all, I see you mention David C's post several times (but this is Karen, not David . . . poor guy, don't want to stick him for this one!). I just wanted you to see how unfair you were being to take your frustrations out on these good people. And I think you saw that! I, like Fay, stand by what I said. And I'm glad you're back. And yes, I am a very devout Christian myself. I prayed for you several times a day over the weekend. I hate playing tough love but sometimes I think it's necessary. Who knows, maybe some of my prayer was answered. But I'm glad you're doing better, and you have a better handle on what's going on.
I am getting a little chuckle because I got some PM's from folks thanking me for what I said - and those are the folks you call an angel here! I think we're all angels, just some of us are in disguise . . . sometimes hearing what we don't want to hear is what we need . . .
Are your brother and his wife on the internet? If so, please invite them to this website. They will find alot of things clarified I think. It sounds like he maybe has extensive small cell lung cancer. It's not good, but small cell responds very very well to chemo and radiation - so they should look at it as an immediate death sentence. People can and do live with extensive stage SCLC. My husband has/had small cell limited, but it was just about to spread to his lymph nodes - who knows, it may have, he had quite a large tumor ON his lymph nodes - but he was cancer free after his treatment and one year later remains cancer free. We are here to offer your family HOPE.
Hang in there and keep us updated.
God Bless,
Karen C.
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I'm with Snowflake and Ginny.
Karen C.
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Berisa - so good to hear from you! You are the sweetest, kindest, most caring person, and I hope you stay with us because we all love you so much! Of course I have a special attachment to you because Faith is Chinese . . . . ! I can't remember what you do, but for some reason I think it's accounting? I think you should become a tour guide! Then maybe you can take groups of people from Hong Kong to the U.S. on tours and meet all of us in person! Or help people adopting. OK, my ideas, I'm crazy.
Good to hear from you. I hope your mother is doing OK. It is hard to lose a spouse at such a particularly young age.
God Bless you and your family,
Karen C.
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OK, I thought I read somewhere that the colon cancer had metastasized to her lung. It's colon cancer in her lung. I think.
Karen C.
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Laurie, I have an aunt who had some sort of mini-stroke and that happened to one of her eyes.
Keep us posted. We've been wondering about you. Let us know what you find out on your Mom.
God Bless,
Karen C.
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Also, we're not a 24 hour crisis hotline. We're a bunch of people trying to support each other through a very difficult time.
If you look at different threads, you can see that most of them are answered within days, even weeks of the original postings.
Karen C.
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God bless ya', Bruce. Isn't a day at Dollywood like a real miracle these days?
Glad to hear how well you are doing.
Karen C.
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Two things:
1. I echo what Becky Snowflake said. Very well put.
2. SEE MY REPLY TO YOUR POST "THANKS FOR NOTHING" UNDER GENERAL.
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Dear JohnSis,
I try to browse this board every day, and admittedly from work, as I work full time with a two hour daily commute, have a 2.5 year old daughter, to care for, as well as my husband, the cancer patient. So I don't have time for the compute at home. And I didn't see your post until I got on here just a few minutes ago, taking a break after cleaning house. Yep, I gotta clean house on Saturdays, after that full work. So myself, like lots of other people on this board, just don't have time for it 24/7.
I found your other post in Family Members/Caregivers and I have this to say to you. You sound like a very hurt and even needy person. I think you are suffering from lots of things not related to your brother's diagnoses and this may be a straw on a camel's back. And I think it is very unfair of you to take your hostility and disappointment out on this board. I think it is very unfair, even immature, for you to post a survey of whether or not you should go see your brother when none of us know you at all, know nothing of your history of your relationship with your brother, etc. etc. So don't blast us all because we didn't answer your survey, especially early on a Saturday morning when no one is even awake and on the board yet. We don't all sit around living on this board, even the folks in the middle of their treatment and fight have a life to live.
If you will just take a deep breath and calm down I think you will find an amazing amount of support and advice on this board. But everything takes time. Your brother and his family may need to absorb what is happening to them and figure out their game plan before they have alot of folks descending on them. Back off, stay in touch, and give them time fo that. I don't know whether you should go see him right now or not, I don't know the details yet.
I don't know what else to tell you. I know it must be very difficult but you must be patient. When Dave was first diagnosed I didn't want a bunch of people telling us what to do, we needed to figure things out for ourselves, with some advice, and after that we were ready for everyone else. Also remember that being diagnosed with cancer is very very emotionally draining, on top of physically exhausting, for both the patient and the immediate caregivers.
Keep us posted. I will pray for you and ask Christ to lift you up.
God Bless,
Karen C.
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Hello, my name is David and I am a Lung Cancer Survivor.
I was diagnosed with Limited Stage Small Cell Lung Cancer at the end of March, 2003. I was 38 years old, married with a 1 ½ year old daughter. My wife and I went to China to adopt our beautiful daughter, Faith, in Oct of 2002 and returned home with her on Nov. 2nd, 2002. I started having recurring bronchitis and trouble with asthma as soon as we got back. A lot of people we traveled with came down with some kind of bug with similar symptoms so I just figured it was some bug picked up in China. (precursur of SARS?) Well, mine kept coming back and coming back, and coming back. I went to one of those doc-in-the-box places on three separate occasions over a four month period where they took chest x-rays and drew blood for some basic tests. They sent me home each time with a diagnosis of bronchitis or a respiratory infection. They told me that the x-rays showed Rochi (sp?) which is typical with bronchitis. In March 2003 I started getting really, really tired and also started having chronic leg cramps at night. The leg cramps got to the point where they just were not your regular leg cramp. Instead of tightening up, the muscles started rippling, like deep sea waves or like electrodes were attached to them and they were jumping. I was so tired and the cramps were so bad, and of course still having problems breathing that my wife took me to the emergency room. The Doctor who saw me took blood and did an extensive work up and also took x-rays. He came back and said you either have a severe lung infection or you have Lung Cancer. They took me back for a CT Scan which verified the cancer diagnosis. Turns out that my sodium level was extremely low, so low in fact that the doctor said that in another day or two I probably would have gone into a coma. The low sodium was being caused by the tumor. That was on a Saturday night. It took them until Tuesday to get my sodium level up to the point where they could do a biopsy, which confirmed SCLC and then I had a port-a-cath installed and started chemo on Thursday. I went home Friday. Over the next several months I had 6 rounds of chemo. (3 days in a row, every 3 weeks. VP-16 and Carboplatin), 35 rounds of Radiation to the tumor site and then 15 rounds of PCI (Prophylactic Cranial Irradiation). With the chemo the only side effects I had was fatigue which got progressively worse as the chemo treatments went on. The radiation to the tumor site was a breeze as well, no skin burning or problems swallowing. The skin under my arm did start to get a little burn during the last week of radiation but not that bad. I had some pure aloe cream I received from my radiologist which I put on every day from the beginning of treatments. I had a CT scan performed after my chemo and radiation was completed which showed the tumors were gone. Actually, my Onc. said that there was still something there which they thought was scar tissue from the tumor. I decided to go ahead with the PCI, which is a pretty controversial treatment but my wife and I figured that anything to increase my odds of survival was worth the risks. I will admit that he PCI did have some unpleasant side effects but again well worth it in my opinion. My main problem with the PCI was that I had some brain swelling, to be expected I was told, I was given some steroids for it. I do not get along well with steroids. I react very badly in fact becoming a holy terror, I will admit it. But……...that was only for the 3 weeks I had the PCI treatments. After that I came off the steroids and the fatigue I had was incredible. I also had a little short term memory problems but heck I had some short term memory problems before my diagnosis and as tired as I was I can’t really say it was caused by the PCI. I only had to have one blood transfusion when my blood counts got dangerously low. I highly recommend getting a port-a-cath installed, it saves your arms and makes the chemo treatments so much easier. I did have the catheter float up into my jugular vein in my neck one time and they had to go into the vein in my crotch and run a wire up to my neck, lasso the port and pull it back into place. I got to watch the procedure on TV monitors as it was being done. They would have put me under if I wanted. It has been a long road to get my energy back but it is coming back bit by bit. I am still not up to 100% but am able to do most of the things I did prior to diagnosis, it just may take a day or two to recover. I have had scans performed every three months alternating between CT Scans and PET Scans and each time they show No Evidence of Disease (NED) They still show some scar tissue but even that seems to be getting smaller on each scan. My Onc. said I could start getting scans done every 6 months at this point but I have requested them to be done every 3 months, still not comfortable stretching them out longer. I went back to work in Dec. on a part time basis and then started to try and work full time in Jan. 2004. I am a Mortgage Underwriter which is a pretty detailed oriented and stressful job and have not noticed any decline in my mental abilities other than normal things associated to being tired at times. On June 4, 2004 I had my port-a-cath removed!!!!! To get it removed they just shot me full of novocaine and “yanked” it out. The procedure took about 20 minutes and I was wide awake throughout it and did not feel a thing and drove myself home afterwards. Ignore the statistics. The worst thing I did, which I am sure every one of us has done is look up the survival statistics. I am not a statistic!!! Go to
http://cancerguide.org/median_not_msg.html
. One other thing which I did for my mental well being was Imagry. Imagry is something I believe helped to heal me as much as the Chemo. and Radiation. I am a firm believer of mind over matter. Your mind is a powerful tool. You really can do almost anything if you put your mind to it. There are many different approaches to imagery you can find and try. I have heard of people going into a deeply relaxed state and envisioning that they are deep sea divers and they go down to the bottom of the ocean which was covered with crabs. The crabs represented cancer cells and they would shoot the crabs with their spears. Every time they went down there were less, and less crabs until finally there were no more crabs and they were cancer free in reality. If you have been newly diagnosed I would highly recommend you look into Imagery. I listened to Shostakovichs 5th Symphony performed by the New York Philharmonic Conducted by Leonard Bernstein every day. This symphony is approx. 1 hour long. I had some really good headphones and I would lay down and listen to the symphony and picture a huge army marching through my body, gong into each part of my body, hunting down the cancer cells engaging them in battle and killing every single cancer cell, taking no prisoners. I would do this while receiving my chemo as well which really made the chemo go much more quickly. Please explore this technique. If nothing else it kept me focused and kept my mind in a positive state. In addition to the chemo and radiation, I prayed each and every night. I prayed for God to give me the strength to face whatever may be in store for me. I also prayed that He heal me but I know that God’s plan does not always match our plans. My faith and belief in God was one of the strongest aspects of my mental well being and my ability to stay focused and keep a positive outlook on life and the challenge I was facing. I never let it enter my mind that the cancer was going to beat me. I was a professional Trumpet player for many years prior to becoming an Underwriter. I had for years played full time in bands traveling up and down the East Coast, playing in shows and with Ringling Bros. Circus when they came to town for several years. I received my Music Degree from VA Commonwealth University where I played Lead Trumpet in the Jazz Orchestra as well as the principle seats in the Wind Ensemble and Orchestra. Music was such an important aspect of my life that I was really trying to keep it a part of my life having made the decision to go into another line of work for personal and financial reasons. In March of 2003 I was preparing to play the Easter Cantata at our Church when I was diagnosed. One of the lowest points after being diagnosed was when I realized that with Lung Cancer I would not be able to play the Easter Cantata and possibly never be able to play my horn ever again. I broke down. I was so very lucky that I had a nurse who, to tell you the truth, was really getting on my nerves, well, she came in and prayed with me and at that point I new I was going to be OK. I have been lucky to have really good medical professionals with me. Facing cancer, LUNG CANCER, is a daunting task, one which affects everyone differently however it is possible to beat it. I have a new lease on life, going through this has given me a new outlook on life. You re-align everything that you think is really important in life. This has been a long difficult road but with the support of everybody here at this wonderful website, my family, friends and my trust in God I have been able to face every step with knowledge and strength. My journey may not be over but I know that no matter what comes down the road I can handle it.
Please feel free to contact me or my wife with any questions
In Gods Name,
David C.
postscript added by Dave's wife, Karen, August 2006:
About a week after having his portacath removed in 2004 Dave was playing with our daughter and they "head bonked" - she hit his forehead and the pain for him was unbearable, not the usual little ouch you'd get. That was the return of the SCLC. It came back in his right frontal sinus cavity. He had six months of chemo and radiation to that spot. At the end of that six month treatment that tumor was gone, but scans showed that it had spread to spots in his spine, hipbone and liver - WHILE GETTING THE CHEMO. He started on more chemo in February 2005 but he could not tolerate it like before - his body was just worn down and out by all the chemo - and the SCLC took over. He ended up in the palliative care section of our big university hospital in mid-June 2005 in excrutiating pain in his back that the doctors could not alleviate. He could not lay flat to get an MRI of his back, but the docs thought that the tumor growth on his spine was cracking his back. He ended up in a pain filled coma for almost two days and died holding my hand, with his parents and sisters standing by. He fought long and hard and with every ounce of soul and strength he had, I know he wanted more than anything to live to raise our daughter whom he loved more than anything possible.
SCLC is nasty, relentless and aggressive. If it could take Dave it could take anyone. Until the cancer spread to his spine I never imagined it would beat him - he was such a fighter and stubborn.
Dave was a devout and strong Christian and when he passed I could literally feel his soul lift. I know he now resides with Jesus. Faith and I are doing OK and trying to be strong, to make him proud.
He was a good man.
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Addie - funny you say that - Dave used to work on a cruise ship! He used to play trumpet full time professionally, and he worked for Carnival for a couple of years. When he quit doing that and came back to town to finish his degree is when I met him. I think a cruise right now sounds pretty darn good!
Anyway, I just got back to work and he's home now from the hospital - doc let him drive himself home since he just gave him novacaine to remove the port. Wouldn't let him keep it as a souvenoir though. I think after he rests he's going to be one happy man!
God Bless Everyone!
Karen C.
p.s. isn't our daughter the cutest kid ever?
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Well, it has been a while since I have posted but please know that I pop in as much as I can and you are all always in my prayers. I am getting my Port removed today. I am getting my port removed today, I am getting my port removed today!! It is odd to say and hear. I am so happy it will be out. It has been one of the constant reminders of this jouney I have been on. I asked the Onc. when I could have it out and he said anytime.............we will just put another one in if we have to down the road. Oh, well. I have not been able to sleep all night. Not sure if it is because I mowed approx. 3 acres last night or if it is the port. Oh well. Again you are all in my prayers.
David C
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Dave has been in remission for almost a year now and the same thing happens to him. OK, he had the PCI last September and that knocked him out worse than anything . . . but still, it's still happening to him, he has a good day, does alot of stuff, and then he feels like crap for two or three days.
Dave's beer truck would be Sam Adams. But Ginny, I do like Yuengling!
Karen C.
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Joni, I'm just reading about what has happened with Robert and getting caught up. I'm really really angry for you. It sounds to me like some sloppy work was going on there. That being said, anger only drains energy one needs to use in a more productive manner. I'm glad you're going to MD Anderson. Dave and I had a back up plan in place to go to Johns Hopkins if something didn't go right with his treatment. We have a dear friend (one of the dad who traveled to China with us) who is an oncology nurse there. Thank goodness we didn't need to use the back up plan.
Please keep us posted. I feel that once things get straightened out and Robert gets some good medical help and the appropriate treatment plan he'll do well. Just a little bump in the road, that's all.
Take care and God Bless!
Karen C.
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Andrea - glad to hear you quit your job. I think you needed that. Best of luck with the ACS thing, if that doesn't work out, something more suited to you will.
Glad to hear you're getting your body in shape for baby making. Glad you quit the prozac. You'll be fine.
If we start a new mommy forum it can't just be for folks who got pregnant to be a mommy! I can teach you something about changing a diaper!
My first time almost ever changing a diaper was on the conference room floor just minutes after they handed Faith to me. With an audience consisting of all the nannies from the orphange. Boy was I nervous! But it was the most natural thing in the world. I just peeled off the old diaper, gave her a little wipe with a baby wipe, and put the new one on! Disposable diapers are so easy even lawyers can operate them, haha!
And remember, if trying to have a baby gets too frustrating, store bought is so much better than homeade!
Karen C.
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Don and Lucie,
that sounds like a dream trip. I'm so glad you had that experience together, wasn't that a blessing?
LOVE the idea of the stones, will have to do that for our next venture somewhere!
Karen C.
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We had an awesome time on the Outer Banks. Faith absolutely loved the ocean and the beach. The surf was even a bit rough but she wasn't at all afraid of the crashing waves. She laughed and tried to stomp on all the waves! And she really liked walking in the sand, too. We stayed at a nice KOA right on the beach, and she went barefoot the entire weekend. She also become Miss Independent which was just fine with me! Walked everywhere, mostly holding the leash and walking our very overweight 13 year old lab, Maddy, which Faith called My Manny, she just hugged and bonded with Maddy so much which was very cute. She also made Dave very happy by calling every boat she saw "Daddy's boat."
Dave did great, too, although I could tell his normal energy level is not there yet. But I feel it's a real blessing and miracle just to be able to make this trip. And no, Dave didn't wear a bikini, sorry to disappoint anyone looking for Dave in Drag In a Bikini photos - it's ain't happening! Hopefully this evening he'll post a new photo on our avatar, maybe one of him holding Faith on the beach.
God Bless everyone,
Karen C.
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Ok, hopefully moving it to the top.
August 21 works for us. I've penciled it in on our calendar. We are going to Glacier National Park for a big family vacation the week before, returning August 7, so I hope it's not too much traveling for Dave so close together. We're meeting Dave's whole family up there, including our very own BeckyCW, for a little reunion, they lived up there when Dave was a kid.
We'd have to move well into October to avoid the humidity, but that is a real issue we can be flexible I think.
We had an AWESOME time in Hatteras this past weekend. Dave did great (although definitely not his full energy yet) and it was great for Faith, she got sooo independent at the campground, which suited me just fine! She went barefoot the entire time and never clinged or wanted to be carried. She either rode in her red wagon everywhere or walked, usually walking our fat 13 year old dog, Maddy, which she called My Manny as she was clinging to the leash.
Mary Ann - thanks for organizing this!
Karen C.
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Francine,
I'm so sorry to hear this, but it sounds like you've got a great attitude to face the next round with.
Please know the Chapmans will think of you in prayer.
Keep us posted on progress. I'm hoping that fluid resolves itself without surgery. You're going to have enough to deal with, with your back, for the time being.
God bless,
Karen C.
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Ok, Karen mother hen here.
Andrea - talk to Brian - I know you're newlyweds, but your clock is ticking, dear. Take it from someone who's "been there, done that". We got married when I was 34, starting trying about a year later, a year after that went into infertility treatments, found out I had a bunch of little things wrong plus one big thing (fibroid tumors) - had some miscarriages, got bad clinical depression, snapped out of it, then started the adoption process - which, by the way, was what I was MEANT to do all along, I just had to take the path to find the pot of gold . . . but your ability to make babies goes downhill fast after 30 - plummets after 35. I tell people who are putting it off but really want to have babies to at least go get checked out by a decent infertility specialist to make sure the equipment is all in order and your hormones and still pushing eggs out at the correct rate.
Katie - that's a tough one. I always thought when I become a Mom I'd want to stay home with her - but since Dave's diagnoses, I've decided that I have to keep my job skills up and keep employed, if only to keep myself employable - because every woman needs to be able to support herself. Even though he is doing so well our future is still not as set in stone as I thought it was two years ago. Faith is in a wonderful church child care center where they teach her things I'd never even think about working with her. That being said, I'd sorta like to see you stay at home and be able to devote yourself more to those kids and US, ha!
Anyway, thought both of you might benefit a little bit from my perspective.
Andrea - being a mom to an active 2.5 year old at 45 is TOUGH. I wish I had the energy I had at 25 or even 35!
Karen C.
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Don't you worry, Fay - plenty of sunscreen here. I don't know if you remember, but I'm a Stage II melanoma survivor - detected smack dab in the middle of Dave's treatments last year. Our plan is to put on plenty of sunscreen, go out on the beach only in the early morning, etc. I bought one of those expensive sunscreen shirts - looks like thick white mesh, but keeps the bad UV or whatever light out. I'm not even wearing bathing suit (no one would want me to anyway LOL), either capris or some "swim shorts" I found at the beach, with my sunscreen shirt and a t-shirt on under it. Same for Dave - and of course Faith. In fact, I only bought the 45spf for kids for all of us to use!
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Dear Kathy LaTour,
To see how lung cancer affects so many people, check out the family members forum. There is quite a long string from some remarkable young people whose parents have cancer.
I am still mulling over this discussion about your conference, but I think Jack makes alot of really valid points. And if the doctor's demanor and presentation were anywhere near what Jack says they were, I say shame on him, shame on you. When I get a big chunk of time (hard to do, with a two year old child, a full time job, a two hour daily commute, eight acres and a husband who is still recovering from his cancer treatment) I'm going to examine this controversy more closely.
I will say that we have gotten your magazine and I've been a little disappointed in it generally. Nothing too cutting edge in there, and everything seem to be geared toward whatever cancer happens to be the most "popular" with very general articles. Sometimes I feel like I'm reading an article about a cancer in Good Housekeeping or Better Homes and Gardens (not to knock them). It's a nice read, though.
So what if some smokers get lung cancers. Tons of non smokers do, too. People who stupidly get too much sun in their youth get deadly melanomas (like me). All kinds of cancer are caused by all kinds of stupid human activity. But a CURE for lung cancer helps everyone. From the smokers, the nonsmokers, and the innocent family members including children.
Karen C.
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I'm all for it.
camping probably wouldn't work for most folks, but we'll find a place near the get together to stay. We just like to drag our trailer around with us so we can take our beloved labs with us.
We ought to do a weekend to make the trip worthwhile for everyone, but hate for you to go to the trouble of doing it at your house, Mary Ann. But outside might be tough, I agree, the MD/VA summer weather is way to humid for folks having lung troubles.
We'd love to do it at our house, it's small, but we have eight acres on a beautiful little river and have a pontoon boat. But it looks like most folks are coming from PA and NJ so we may be a little too far south.
We're flexible, especially since Dave is doing so well, so whatever works best for everyone works for us!
Karen C.
3 month ck up
in SCLC GROUP
Posted
Rachell, hang in there. Waiting is the hardest part. My prayers are with you for a clean scan!!!!!!
David C