Thy name is my healing, O my God, and remembrance of Thee is my remedy. Nearness to Thee is my hope, and love for Thee is my companion. Thy mercy to me is my healing and my succor in both this world and the world to come. Thou, verily, art the All-Bountiful, the All-Knowing, the All-Wise. - Bahai Prayer for healing.
MARCH NEWS AND EVENTS March 31, 12pm- What an E-Ticket ride. I bet most of you are too young to know what I'm talking about! LOL... Well, anyway, we've had a long talk with Bobbi's radiation oncologist, and we're going to complete this course of WBRT (Whole Brain Radiation Therapy). I guess it's just human nature, especially for the layperson, to start second guessing and questioning if we've made the right decisions. Anyway, our doctor told us we're not grading on a curve here- you don't get 80% of the benefit from the first 20% of the treatment (my own analogy). If we stop 66% of the way through then we miss the last 33% of the benefit of the WBRT, and we had good reasons to start with WBRT before chemo anyway. So we changed our mind yet again. How human. We also talked to a number of councilors including people at the American Cancer Society and we're going to go ahead and finish radiation, take a little break and then start the chemo. We also haven't gotten the definitive pathology report yet for her last core biopsy to confirm what chemo therapies Bobbi qualifies for. When we know you'll know. In the mean time I got chores to do! Anyone have a seemless gutter machine???? Bobbi dropped "the P bomb" on me this morning. She said "pleeeaaaassseeeee- don't shave you head!" That's the P bomb. I guess I'm keeping my hair. Maybe I'll get a MULLET! LOL. I got the words to ACHY BREAKY HEART here somewhere.... In the meantime "we" are lossing our hair! March 30, 11pm- What a good day. I don't mean it was pleasant (though it was) or that we had nice visits (though we did) or that we ate well (ditto). It was just a good day- like we've had an epiphany (one of many) and that things are clearer for us. We were blessed with many visitors and with Bobbi being well enough to enjoy them all. Jill and Donna, David, Donna (the sister, not the mother), Jordan, Lewis, Beck, Dick and Becky (another one- I don't repeat myself again) were all a blessing to us, as are all of our loved ones (that's you all). I guess I need to thank Dick most of all. Dick told me the things I needed to hear and comprehend that maybe I'd avoided letting register. It's not easy to do that. Imagine how hard it is to do that in a compassionate and loving manner. Thank you Dick- you're my role model, and when I grow up.... I need a code or signal when I'm being serious- sometimes people can't tell. In case you can't, this is one of those times. Thank you Dick, that was awfully nice of you. March 30, 11am- Happy Day- we're feeling pretty good! (Excuse my grammar). Alas- another rainy day, but I guess I don't have to work in the garden. Bobbi's mom and sister Jill have come over for brunch! Salmon and shrimp quiche anybody? Come on over! Lewis and Becky called earlier. It seems there was a big OA event last night and the dance team all put on pink arm bands and danced in honor of Bobbi. That sort of broke her up- we're both touched and proud of "our boys", even the ones she doesn't know. Lewis was having trouble attaching pictures to an email, so there's a good excuse for a visit. Remember- you don't need an excuse for a visit, just call to be sure it's a "good day." Today is a good day. Sorry- I gotta go. Bobbi is trying to serve the quiche! March 29, 2pm- Bobbi is feeling okay- about medium. She's feeling the effects of the radiation more than ever, but she has stopped taken the oral $$$ chemo. She hopes to feel better. She's very tired, but she was able to sleep last night and took a long nap this morning, so she's feeling better. She's really glad to be nearly done with radiation and I will respect her wishes....but when you hear her say "we decided to stop radiation" remember she's not speaking for me. So, soon we have 2 hour long chemo sessions to look forward to. I'm so upset about what seems to me the absolute senseless (at least nobody has condescended to explain the sense to me) failure to start radiation on her breast and lymph nodes I can hardly speak of it....and when I think of it I tremble with frustration. I know I should trust that the universe unfolds as it should and perhaps some day I will not see this as a golden chance lost forever (but that's how I see it now). Damn- why am I grinding my teeth? March 28, 2pm- What was I saying about Cherokee? Well- our friends had a fundraiser to help us with expenses and they raised over $1,400 from selling hotdogs and nachos. 20 years ago Bobbi wondered if our community would accept her- I guess she knows now. Thank you all so much. Words fail me, except of course- thank you all. I've run out of pink bracelets, but I have ordered more. There are a number of online sites where you can make a small donation ($3-$5) and get 3 or 5 bracelets, but I already ordered 50! If you can wait see me in a week. If you can try a google search or click HERE. Hugh March 27, 8pm- Sorry it's a late posting. Bobbi asked Dr. Pekal to Dr. Marcom at Duke to see about ending all radiation and starting chemo. FYI- they wouldn't even do an MRI for at least 4 weeks after that. Next Friday would be the last radiation she would ever be allowed to have on her brain- she'll reach her lifetime limit that day. They told Bobbi at Dr. Thomas's office that we can't speak to Dr. Thomas till next Thursday anyway. Bobbi has announced she doesn't even want to start chest radiation. She's really feeling the cumulative effects of it all and we only started half of it. Bobbi says she loves you all. March 26, 2008, 5pm- Okay, well it seems Dr. Pekal does not think that Bobbi is responding well to "The Duke Plan." It seems her lesions on her breast and lymph nodes continue to grow. Duh- We have STILL NOT STARTED THAT RADIATION!!!! Jumpin Jimmy on a pogo stick- WTF????? sorry. Yeah- here we are two weeks later and nada, zero, zip to the chest wall and armpit. Anyway, Dr. Pekal want's to start Bobbi on a round of regular (way more ugly than what we have now that cost $$$$$) chemo to control the lesions because they are still getting bigger (may I say "duh?" Duh). Anyway Dr. Pekal will call Dr. Marcom at Duke for some consultation. Stand by for news. I guess the real question is would it have also taken the doctors at DUKE two weeks to not get started.... food for thought. I don't really know, but I thought we had a plan.... March 25, 2008, 9pm- Sorry this is a late post. I guess today was just a rough day. Bobbi's mom drove her all over- to radiation, the accountants, wig stores, you name it. Thank you Donna. I guess shopping for wigs after getting I don't know how many rads of radiation and generally feeling the cumulative effects of the treatments would wear anybody down. Today was just a sad day for "our girl". I'm making a nice supper now after getting her to sleep for a while. She hasn't really lost much hair, but she just feels bad I guess, and a person can't stay strong all the time. She does appreciate you all- every thing you've said and all you've done and all you've sent. Thank you from both of us. Hugh March 24, 2008- Well, today Bobbi is off to find a wig she likes (if possible). She's never even happy with her own hair, but maybe she'll have better luck with someone else's... Just kidding hon. This weekend was a good weekend. I got lots of chores done- I even managed to fix the lawnmower, mow the lawn and used the chainsaw to cut up some logs. Bobbi got to see grand young'n lots and that seems to make all the difference. Time will tell what this week brings. Maybe the second supposedly concurrent radiation round will begin. It's possible <stifles a stream of shall we say "colorful metaphors?>. We shall see. Keep your eyes peeled for a wig! March 23, 2008- Easter Sunday. We got up early at the crack of nine and went to Kim's house for the egg thing. While there We somehow decided to frame up a new bathroom in their unfinished upstairs. We framed up a nice 8x9 bathroom and even started hanging sheet rock! Then it was over to the DeWeese family compound for dessert at Johanna and Libby's house with Aunt Lib and Cousin Steve! We celebrated Uncle Phil's birthday together. Then it was home by ten and to bed. March 22, 2008- Dang, I overwrote the file with and old one and lost my last two days of entries! Silly human. Let's see... Oh yes. Saturday Uncle Roy came to visit. We had a great visit as you can see. Dave, Donna and Jordan came by for a bit and then Beck, Johanna and Libby came by with dessert. Mmmmm- sugar-free strawberry angle food cake.It was delicious. We spent the even regaling ourselves with family stories, news of Tommy, etc. Dave, Donna and Jordan came by too! I later stayed up till 3am playing guitars.... finger booboos made that difficult until this weekend. March 21, 2008 6:30pm- NEWS FLASH- The chemo pills finally arrived just now. We have our Xeloda! Now, as soon as I feed her something she can take some. March 20, 2008 7:30am- Progress! Okay, yesterday Bobbi had a "core biopsy" of her breast. Imagine the biggest needle you ever saw (more like a long nail) that's also hollow. That's what they forced into her- not once but four times. The good thing is this will finally clear up the contradictory biopsies we've had. We'll soon know exactly which kind of melanoma Bobbi actually has and whether or not some of the new hormone based chemotherapy drugs can help her. By the way, we are STILL waiting on the chemo drug she has been prescribed to show up. Now- her's a surprise for you- I have a guest to contribute some web "content." Bobbi- take it away! March 19, 2008 2:00pm- I called Bobbi. She's at the radiation center with her mom. She's feeling much better this week. I think we've figured out the right dose of steroids- it keeps the swelling in her brain down but doesn't make her feel too weird. She's sleeping very well now- I know 'cause I watch her all night! March 18, 2008 12:00pm- Okay- we had a fairly good night last night. Today is CT Scan day. Bobbi will have a CT Scan to pinpoint the locations of tumors and lesions in her breast and lymph nodes. Then she'll get some special tattoos to help aim the radiation she get on her chest wall and arm pit. By tomorrow or Thursday she'll be getting 2 courses of radiation a day. We still don't have her chemo in hand yet. I don't know what the hold up is and I'm trying to not "show my butt" (a fine old mountain term meaning act like a jerk) about it.but I want the stuff delivered now! $#!@$#@! Okay, sorry- there's my butt. I forgot to thank everyone who offered us a place to stay in Durham so we could stay at Duke. Bobbi and I both appreciate it. Maybe I was wrong to let her come back here for treatment, but I don't want to fall into the "second guessing game." Also, Cody Long is helping me write an application to let y'all post messages here for Bobbi to read. Thank you Cody! Keep you eyes here- I hope to have it working by the end of the week. March 17, 2008 12:00pm- Well- it's a new day, and a full one at that. Today Bobbi starts her first full week of radiation- 2 doses a day in fact, plus the chemo as soon as the drugs are delivered. It was medium rough few days after one treatment- three a day may get kind of tough. One of my co-workers passed this weekend, and that makes it tough to. We know this journey has an ending, but it's hard to think the ride will end before we want it to. Godspeed Joe. March 16, 2008 7:00pm- We had a pretty good day, which means we got a lot done (thanks Sam). We pruned some trees, cleaned the yard, worked on the kitchen. I even installed a GFI outlet out on the deck to feed some low-volage lighting. Now it's time to relax.... we must have some shrimp leftover here somewhere..... The surprise is there at the top on the right. We'll see what the response is- I hope you like it. March 15, 2008 10:00pm- We had a great afternoon and a great night! "We" did chores of course, but I had help. Donna, Greg and Susan came over and Greg helped me put up crown mould and trim in the dining room. Sam came over and we hung some nice light fixtures over the new granite countertop where Bobbi had me take down the track lights. We supervised David for his birthday and had a wonderful "Frogmore Stew", NYC cheesecake and a movie (The Ghost and the Darkness). March 14, 2008 8:00pm- WOOHOOOO. Okay- stuff is happening. Our failure to communicate is over. Maybe it's just me calming down. Not only did we see both oncologists today, but we started everything! Not only have we gotten our Xeloda kit (no drugs yet- they get shipped overnight) but Bobbi has already been fitted with her full brain face mask. The mask helps alight her skull for whole-brain radiation. Here's the real news- she had her first radiation treatment already! She needs a CT Scan of her chest wall to start radiation on her breast and arm pit (lymph nodes) and that's scheduled for next week. Let me start over. When we met with Dr. Pekal she explained one of the Drs. we are dealing with (Dr. Smathers, the CyberKnife person) is out of town- that's why no call-back. Everyone else was keenly aware that the treatment plan Duke proposed is controversial. When someone has breast cancer they almost always have a mastectomy first. The only reason to delay is to start chemo to shrink the tumor before surgery.... but Bobbi does not have a tumor in her breast and the cancer has already metastasized several times (to the lymph nodes and brain). The cat's out of the bag already and ironically her breast has the least defined cancer. This is some of the many reasons Bobbi's cancer is "atypical". Anyway, we knew the PT Scan was 3 or 4 to 1 likely to show more cancer besides the brain or lymph nodes. It didn't, but "micro tumors" are still likely to be present. That's why radiation first and chemo at the same time. Once the radiation oncologist was sure we were well aware of the risks (too numerous to mention here) and that we were still willing to begin he said "how about today?" So Bobbi has already had her first treatment. We'll probably do another MRI to see if the CyberKnife procedure is called for. We should get our first batch of Xeloda which costs $1,000 per bottle here ($625 in Canada), or about $24 a day starting next week assuming our insurance will pay for it- cancel that. We'll get it on our credit card if we need to. The doctors also want another biopsy. We've gotten different results from different labs on the same cancerous material. These are what make Bobbi a "triplet" (also called triple-negative). If she's not a triple negative then she could be a candidate for the newer (safer, more effective) chemo treatments. So by the middle of next week she should be having both kinds of radiation AND be started on chemo. I can't tell you how relieved I am- it was like I had to beg the doctors to start treating her (these things take time but you understand I was not exactly emotionally detached from the process). Ironically, it means that my wife being exposed to radioactive cesium isotope nearly one hundred times and having poison coursing through her veins for the next several months means I might sleep better. How did we come to this? Anyway, except for some general fatigue (could be 2 hours sleep each night for the last several weeks) she feels pretty good right now. She is going to loose all her hair. March 14, 2008 12:00pm- More Keystone Cops antics. That's a little harsh I guess, but Wednesday we had a plan, and now we have to talk about it some more. I am becoming "excited."It seems that our local radiation oncologists may have some resistance to the treatment recommended by the doctors from Duke. It is unusual to start with radiation instead of chemo, but Bobbi's case is "atypical" anyway. Maybe there's an apartment in Durham in our future after all. Stand by for news! We're leaving now. March 13, 2008 6:00am- We're getting ready to hit the road. Today is a busy day. We have to call all of our area doctors involved in Bobbi's care and coordinate our plans based on the recommendations of Drs. Marcom and Prosnitz. Tomorrow we start chemo! At least, that was the plan. We'll see what Dr. Pekal gets put together for us. March 12, 2008 6:00pm- Okay, we're at Bobbi's sister Sarah's house now and I have a chance to think. So, here it is with the bark off. Bobbi's cancer is very advanced- it has metastasized already, so the doctors (Dr. Marcom and Dr Prosnitz) don't see the benefit of a mastectomy at this time, especially since the lesion in her breast is so diffuse. That sounds to me like there's not enough benefit to make it worth the discomfort. On the other hand we got a plan! We're going to attack the tumor remnants right away with both whole brain and "sterostatic" radiation. We'll do radiation to the breast and lymph nodes at the same time and start chemo at the same time. If the lesion in her breast becomes better defined (after radiation and chemo) we may have a mastectomy at some later time. So far everybody consistantly remarks on how incredibly health Bobbi is (except for the cancer things)- no BP, diabetes, cardiac, arthritis, etc etc. That means that with some aggresive initial treatment we might be able to get her and keep her healthy a long, long time. March 12, 2008 9:00am- We're Here! Okay, we're through "intake" and we're waiting to see the doctors. This place is packed! There's at least 3 dozen people waiting to be seen by someone...That's a good sign, isn't it?Anyway, the girls are reading, but I'm watching Regis and Kelly! LOL- just kidding. I'm working on the web page! March 11, 2008 8:00pm- We're in Cornelius, NC and we're in bed early (maybe we can even sleep). Tomorrow is a busy day, and I guess we're both pretty nervous about it (and everything else). At least we got all our xrays, sonograms, mamograms and scans pretty easily. Thank you staffers! I've uploaded the pictures from last week before she had her staples removed. Makes it seem pretty real.... March 10, 2008 5:00pm- We're Going To Duke! It's all set up and we're leaving tomorrow to go to Duke University Medical Center and consult with Dr. P. Kelly Marcom! I've also started a team to walk in Atlanta in October for the Breast Cancer 3 Day walk. The team is called The Knocka Walkas and we're going to raise $25k to beat this terrible disease. Forget the whales- save the hooters!!!! Please consider joining our team! March 8, 2008 10:00am- Well, life goes on and today is another day. We're still waiting to hear if we can get Bobbi into the study at Duke. I've also reached out to our friend Dr. Ralph Loomis for advice. Ralph is the neurosurgeon who fixed Billy Graham's brain. He's also a fellow Scouter and a really good guy. Last night I cooked Bobbi a nice meal (pork loin stuffed with bacon and mushrooms), and this morning I made omlettes. I can not believe a self-reliant person like myself is reduced to cooking and chauffeuring. I must give my precious angel over to the care of others. At least I'm not alone- we are so blessed with loved ones (that's you all). March 7, 2008 4:00pm- Well, we saw Dr. Pekal. Where to begin? I guess it comes down to the fact that this is a stage 4 cancer, so words like "incurable" should not be surprising. Still, it's pretty devastating... So- what to do? Steven Stills said it best- "Rejoice, rejoice, we have no choice but to carry on." One of our dilemmas- the breast cancer is growing slow and the brain tumor is dangerous, even if most of it is gone... do we start chemo for the breast or delay the chemo and go for radiation therapy for the brain? Well, what we're trying to do is get an appointment at Duke University Medical Center with Dr. P. Kelly Marcom. Duke has a number of studies for therapy of breast cancer patients who are "triple negative". Hopefully we'll go there Tuesday and Wednesday and meet with their "multi discipline" care group. To do this we are postponing starting Bobbi's chemo from Monday to next Friday. If Duke tells us Bobbi is a good candidate for the study then she can start right away. If not a pretty aggressive chemo regiment can then proceed on Friday. We reckon the potential benefits outweigh the risk of a four day delay. That's probably all I can say right now except I still think Dr. Pekal is great. She's proven time and again she's willing to step on more than a few toes to get the best care for Bobbi. March 6, 2008 4:30pm- We got the staples out. Dr. Rhoton says Bobbi is healing well, but he doesn't want to schedule CyberKnife until next week. Tomorrow we'll get our initial chemo schedule- keep your fingers crossed. March 5th, 2008- A not-so rainy day I hope. Soon Kim will be here to take her mom shopping. "Our" blood sugar was a little high today, so out came the insulin. Maybe that's because we just took our one steroid of the day, but we're down to one pain killer (1/2 twice a day) and the pain is manageable so that's progress. Tomorrow the staples come out and we have some quality time with "The Tumor Terminator". Soon we'll begin CyberKnife removal of the remaining tumor. By the way- thank you to all who sent checks to the CIHA mamogram fund. Let's make our mantra "have you had a mamogram lately?" (even the men!) Casey called me and asked why I didn't put a place on the page for people to post somments to Bobbi. Good idea- I'll put my thinking cap on. March 4th, 2008- A rainy day. So now we have a plan. We see the neurosurgeon on Thursday and the medical oncologist of Friday. Bobbi is healing well. She's reduced both the steroids and the pain killers (and also has needed less insulin). Last night our nephews helped us bring home and put in her grandmother's china cabinet. It's beautiful, and it looks like it was made to go with the dining room table my aunt gave us. Donna (Bobbi's mom) should be there to spend the afternoon with Bobbi. For right now- these few days all is right with the world. March 3rd, 10am- Bobbi continues to improve. We've adjusted her medications as we follow a rigid regiment. The steroids she took to define the tumor are also the ones she is taking to keep her brain from swelling following the surgery. The down side is that they cause her blood sugar to skyrocket (it hit 291 once). The good news is that as we have lowered her dosage her blood sugar has got down accordingly. This morning was the first morning in weeks I haven't had to give her a shot of insulin. To celebrate I took her picture. She hates it, but I think she's gorgeous! March 2nd, 2008 9:00pm- The end of a good but long weekend. Bobbi's kept me busy! I've taken two truckloads of my precious treasure (I don't know why she thinks it's all junk) to the dumpsters. I then drove her (she us not allowed to drive or be alone for a while) to Asheville to go shopping at Michael's Crafts. Lucky for me they close at 6pm. We then went for a decadent buffalo burger at Fuddruckers (mui romantico) and then came home. March 1, 2008- A day at home! How do women who've had brain surgery spend their weekend? They make their do projects! Kim came over to help us and she was able to give Bobbi a new haircut! Bobbi now sports a "pixie cut" and she looks fabu! The swelling gives her a slight double chin and she's self conscious of it, and an 8" long 4" wide bandage on the back of her skull doesn't help, but I'd think she looked good in the was a big bolt holding on her head! Page updated March 31, 2008. For more information please contact the webmaster |