Remembering Dave

Hanging in there. Dave had his chemo yesterday and today. He's now on the "Addie Plan", getting his dose split up over five days instead of one. His platelet count was 119 yesterday, which is awesome, considering it was a measly 78,000 last Tuesday! I'm certainly making plenty of mistakes muddling through this mess, but I haven't gone nuts (yet, almost did on Saturday) and Dave is doing well physically, so what more could I ask for? thanks for checking! Karen

Bill, all I have to add is that the PET scan is read in full color by the radiologist, so at the very least they've got an advantage you don't have in trying to make heads or tails of what you have. I'm sure they've got alot more toys to use as well. Also, about the brain: I remember Dave's most recent PET scan a few months ago, it was right around the time the neurosurgeon was trying to determine whether his pea brain was radiation neucrosis or tumors. The oncologist ordered the PET scan and the radiation oncologist, who got the scan first, hoped it showed uptake in the brain, but apparently there are two different ways of doing the PET scan, one shows uptake in the brain and one doesn't. unfortunately, the uptake one had to be "special requested" which the oncologist didn't do, so it didn't tell them anything new about what as going on in his brain. I sure hope this paragraph makes sense. I would just sit tight and wait for the interpretation and diagnoses. it's hard to do. Karen

Peggy, I am really disappointed to read this and I feel your sadness. I respect you so very much, so will stand back and leave you alone. You got me through one of my rough spots and for that I will be forever grateful. I wish I could help you through this one, but just know I'm thinking about you and we love you. I hope hubby gets some fantastic riding in. Dave is expressing a desire to do his own thing this spring, probably some camping, so I hope they both get to do these things. God Bless, Karen

I've been curious about this ever since I read this post, since Dave has bone and liver mets. He had CBC done yesterday and last week a vial sent off to the lab, mostly to get his sodium level checked (which isn't part of the CBC check) but neither test lists the ALP. This is what we do have listed below. I think I know what each of these values represents but does anyone see anything that's related to the ALP here? It's really not that big a deal, I'm just curious Also - Bill - what's the latest on your wife? WBC LYM MID GRAN RBC HGB HCT MCV MCH MCHC RDW PLT Glucose BUN Creatinine Sodium Potassium Chloride Carbon Dioxide Calcium Thanks,Karen

Lori, it will be fine. they will get her to the hospital and get her comfortable and taken care of. probably some dehydration going on there. everything will be OK. It's just a rough patch in the road I am sure. please keep us posted, and DO NOT give in to the grasp of Satan! You are stronger than that! you CAN do this! Karen

Well wishes from me, too. Karen

here in richmond we have an organization called LINC (www.cancerlinc.org I think) which stands for legal information network cancer, a pro bono legal aid type thing that helps cancer victims solely with the business and legal side of cancer. they would be the perfect folks to help with this. however I think it's only local to Richmond. you might check out their website and see if they have links to other organizations in your area that might help. I've been keeping them in mind in case we have some sort of legal problem like that. one of the members of the board of directors works in my company, just a floor below me. Sarah Jessica Parker's mother's best friend (or something like that) is the founder so SJP is on the board of directors and comes to town every now and then for a fundraiser. good luck. what a mess. Karen

Pat, I need constant Grace for the Moment. I am an anxious wreck. so much to take care of. today Faith let the dog out of the house and he just took off. I went looking for him in the car but couldn't find him so went on in to town with Faith. Had two nasty phone messages from some woman about 1/3 mile away about him wandering their neighborhood. nasty. I felt like calling back and saying, hey, I'm alone with a three year old and my husband has some potentially deadly cancer, can't you be a little nicer? but I just erased the message. this after a very anxious ridden afternoon that I won't go into here. after going into town for Dave' brain MRI. Ginny, no bites on the house yet darn it all, two lookers yesterday and one Thursday. that's almost 40 including the open house. I'm really ready to get it sold and move. I mean I'm about worn out to my limit with this, and the constant running back and forth to town, not even including work. My mom is doing OK. not tolerating chemo well so not getting much of it, therefore, not feeling too bad. To her that's great. to me, that's not so great. but I can see things changing in her, like the CONSTANT worrying over me and Dave, the need to know every single detail about every aspect of my daily life (like I have time to even repeat all of it!) and lots of other controlling type behavior which is making me even more anxious, but I see her needing to control something if she can't control herself. Dave needed to be alone, he swore it's not me, and he went into town and got a hotel room. so I'm all alone dealing with all my demons plus a tired fussy clingy needy three year old who I just thankfully put down to bed. A virtual sleeping angel. Hell on wheels when awake . . . what a blessing. well, I've said way too much here myself. time to take some sort of drug and try to pass out in front of an old law and order rerun. Blessings, Karen

well, I know you're ready to have this pain gone, and I bet you KNOW your heart and lungs can hold up to it (this doc just doesn't know what a tough cookie you are!) but I guess you gotta do what you gotta do. Have a blessed Easter, Fay, and I hope you can manage to keep the shoulder pain to a minimum for the next month. God Bless, Karen

OK, EVERYONE, ANOTHER ONE OF THOSE "EVERYDAY" MIRACLES! When Dave went in for his zometa (IV for bone growth) on Thursday they did a CBC and his platelet count was 103,000! And why am I JUST now posting this? well, because he didn't tell me!! He was on the phone this morning with my mother and told her! then I got on the phone with her and she told me! Sometimes he is just so out of it . . . crazy guy. and last night he got muscle cramps and was up for four hours, so today he's a real wreck........ but his platelet count came up from 78,000 on tuesday to 103,000 on Thursday! thank you God for that little miracle! tomorrow, Saturday, we go to our big cancer center for a brain MRI for him. now, he just had one two weeks ago where the neurosurgeon declared his peas to be radiation damage, not mets, but now he's having some other strange symptoms, numbness in chin, fingers and toes, and he fell going up the steps the other day, so the onco doc wants another brain MRI this time to look at the bottom of his brain, instead of the top where the peas are? I didn't know you could get different brain MRIs, I thought they all did the whole brain. so here we go. I feel certain it's nothing, he's barely mentioned the symptoms to me, and I sure hope I'm right. On another, nice note, we have a dear family friend, mother of one of Dave's coworkers, she's in her 50's I think, anyway, she is a kidney cancer survivor of some years. she gets scans every six months, and her most recent scan showed nodules in both lungs, so she had needle biopsy, and the bedside pathology showed cancer. we were all upset and numbed by this news, but then their doc called today and said the full pathology came up, NOT CANCER. whoppee, another miracle, and one she said she prayed hard for! anyway, have a good Easter! God Bless, Karen

Summer - how's it going? Just thinking it's been a week since this post, am wondering how your partner is doing. God Bless, Karen

wow, I am really glad to hear you are feeling so much better. this might have been going on for a long long time, and now, well, it might take you a while to get to know yourself again! Karen

I think you are really on top of things. I think you and Brian, and your whole family, including that wonderful granddaughter, have an awesome attitude. You are one of my new heros. God Bless, Karen

Well wishes going out to John's Mom. I know this is hard, I pray she can hang tough and do well with the treatment. God Bless her, I know she's got to be a wonderful woman. Karen

what happened with the bronch? am wondering why they just couldn't do a chest CT scan? I hope she's doing better still. nothing like a good transfusion to get a person feeling better. Karen

ok, JUST got a call from onco doc's nurse. I know she is sick of my faxing missives to her but oh well, at least I got a plan going. The plan is: 1. IF Dave's platelett count is 85,000 or more on Monday, he gets his chemo (topotecan) once a day five days in a row starting Monday. 2. On Day 7 he gets a shot of neulasta. Since Day 7 will be Sunday we will probably be doing that at home (awww, sweet revenge. for many months I endured the torture of my husband sticking a needle in my backside daily to try to get some eggs cooking to make a baby. Now I get to stick him, except I'm told it's a subcutaneous shot which means the short needle, darn it all!). The nurse says they don't much like the neumega stuff, they haven't seen it actually boost anyone's platelets. I didn't argue with her since they are trying to do something. The neulasta is to boost Dave's white blood cells since the chemo is bound to bring them down. PRAY PRAY PRAY FOR AN 85,000 PLATELET COUNT ON MONDAY. He goes in tomorrow for his zometa IV, the stuff to build his bone growth. I hope it doesn't cause him the pain it did the first time he got it! Man, I wish there was something you could eat to build up platelets, like big juicy steaks. Maybe we should just try that anyway? THANK YOU EVERYONE FOR YOUR INPUT. Berisa - I'm going to check out those herbs. God Bless, Karen

I can't believe I am just seeing this, but to be honest with you, we've been hit with such bad stuff lately I haven't ventured on this forum. anyway, YIPEE!!! that is just awesome! I'm so glad. God Bless to a wonderful couple, Karen

On Feb. 6, a Sunday and my birthday, Dave, Faith and I were driving to a small town about 20 minutes away for breakfast. The speed limit went from 60 mph to 45 mph as you came within a few miles from town. Dave got pulled just inside the 45 mph limit, doing 61 mph. An obvious speed trap, and the officer was very nice, almost apologetic, and told Dave if he had a good driving record it was well worth his while to go to court for it. Fast forward to last week, his court date was Thursday. Our plan was to go to court and then head to the Outer Banks. On Tuesday I pulled out Dave's ticket, got the officer's name, and called that county's sheriff's dept and sure enough he was in. I explained the situation to him - that at the time Dave had just finished chemo and we THOUGHT he was doing well, but since then his cancer had returned to his bones and liver and his doc gave him six months to live without a miracle (all true, just things we would rather not think about or think along those lines). I asked him what the judge could do for Dave - he said the best thing the judge would do is driving school but in Dave's condition he didn't think driving school was appropriate. He said he would ask the prosecuting attorney to dismiss it. Long story short, we went to court, and he did ask the attorney to dismiss it. Just as court was starting, Officer Holmes came over to where we were sitting, knelt down, shook Dave's hand and told him he was praying for him every day. He was a beautiful, wonderful, kind man who obviously has a deep faith and uses it in every aspect of his life. They called Dave up front and the judge and attorney both shook his hand and wished him well. It was one of those times in life where you really know that there are real angels that pop up in the most unexpected of places. I plan on writing him a nice thank you with a photo of Faith and Dave, and send a copy to his boss (the sheriff) because he deserves, at the very least, appreciation for what he does. Karen

OK, Betty, you're so right on about Neumega. I just found some info on it, I think it was from FDA website. looks like good stuff. Given weekly AFTER chemo to keep platelet production up. So here's the fax I'm about to send to onco doc: Dear Dr. S.: Neumega? What about platelet transfusion, followed by chemo, followed by neumega? thank you, Karen

thanks everyone. beth - you are way too much with the Marlon Brando avatar, way too much! I KNOW you and I don't think you look a bit like him, you silly girl! but you made me chuckle which I desperately need. love the idea of just putting him in the hospital. the thing is, you have to do what's "reasonable, necessary and expected" or whatever for ins. to pay, you know? Betty - I'm going to look into that shot. Maybe another fax to the oncologist is in order with this suggestion. they're going to cut their fax machine off LOL. I don't care. this is my husband's LIFE we're talking about here! and yes, I am putting it all in the hands of God. With Easter upon us I think quite often, really just about constantly, about our relationship with Christ and how this is all fits in. how Dave's situation fits in with God's plan, and I am putting it all in His hands, but I also know that God wants me to fight for my husband. Thank you thank you, everyone. Karen

thanks, gals. Not hitting the panic button yet, but at this point in Dave's illness we can't afford to sit and wait out ANYTHING. Anyway - Fay, this last link is pretty cool, I like a nice simple "how to read your lab report" thing like this but it's obviously for HIV patients which is OK, would be nice to find one like this geared to cancer patients but this one works really well and I did bookmark it. Anyway, I faxed a note to the doctor saying "platelet transfusion? any reason why not" sort of thing. we'll see what he says. Dave is supposed to go in tomorrow for his zometa (the bone building IV) so hopefully we'll have some answers. Karen

Karen - THANK YOU. Dee - nothing you can do for plateletts except a bone marrow transplant if it gets really low. the shot is for your red blood count. that's either procrit or aransep. sure wish there was a shot. I talked to the onco doc. I begged him to try to think of something, if we just sat and waited week after week for Dave's plateletts to come back up he was going to die and I was not going to sit back and wait for him to die. He promised to sit down with Dave's chart tonight and try to come up with a plan. maybe he'll look at the list of clinical trials I faxed him two weeks ago. but he said it was the first he'd heard of today's failed chemo attempt, he's working in another office today. so at least I brought this to the forefront of his attention. otherwise, he might not know about it until later in the week at best. Karen

CPT-11 didn't work for Dave, either. He had the Japanese cocktail, CPT-11 and cisplatin - and he got lots of new growth while on this combination. It seems to work for the Japanese but the genetics in race are just different enough it doesnt' work as well for other races, I read that somewhere on the internet in my flurry of trying to figure out what's going on with Dave. He's now TRYING to get topotecan but never gets its because of low plateletts. but you might consider that, Addie is on it as well - Karen

I'm really disappointed and worried. Dave went for in for chemo today and his plateletts were only 78,000 so they didn't give him treatment. he didn't have chemo last week because they were 70,000. This was supposed to be the fifth week of chemo and so far he's only had two treatments. I have a call in to the oncologist because we have to do SOMETHING. Just sitting around and waiting is not going to kill this beast. I did some research and you have to be down to 20,000 to get a bone marrow transplant, from what I read, but I wonder what else we can do? I have a call into the oncologist. his nurse just called - I told her, I want to talk to the doc - I cannot just sit around and watch my husband die while we wait for his plateletts to come up. so she's going to have him call me. Karen

YIPEE! YOU GO GIRL!! I'm so so happy for you! Karen