October 2, 2008, 4:45pm - Oops! Sorry, I put today's updates on the october page, but haven't made a link to October yet. I'll make one tonight.
October 2, 2008, 6:45am - We're Home!!! Actually, we got home a little before 8pm last night. I gave Bobbi her Percosets and she went out like a light. I started to clean the kitchen, sat down on the couch and went out like a light. I woke up at 4am, staggered to bed and woke up around 6am. Now I'm taking care of Bobbi (her blood sugar was only 142) and now I'm making breakfast. Remember, when we zoomed to Duke two weeks ago I was in the middle of putting up about 36 jars of green beans. All that was just abandoned mid-process to am-scray. Anyway, I'm trying to clean before my mother-in-law gets here! OMG! There's no way.
Anyway, we are home! We're so glad to be here. We miss all the folks in the 6300 unit at Duke who adopted Bobbi- it won't be the same without having them around. They'll never know how much it meant to us to be shown a little kindness (mucho kindness). Bobbi is home but not quite comfortable, so we're asking for no social visiting for the time being. She's got droopy face and bandages and she's a little self conscious. Also, her surgical scar bleeds a tad and she's in pain, so I'm just trying to keep her comfortable. We'll keep you posted.

October 1, 2008, 10:45am - Bobbi just got back from her PET Scan (finally!) and she's looking good to us. We are going ahead with plans to discharge sometime today. Right now we're speaking with a counselor (who is great) about all our stress. We got stress <he says with his eye twitching>? Anyway, the idea of going home is pretty good therapy. All the nurses we've fallen in love with (and they with Bobbi) have been checking in on Bobbi. All her docs and nurses have really taken a shine to her (and we all know why). We're even packing a little bit. Donna and Jill and I are just sitting her hugging our little gals. I'll keep you posted.
October 1, 2008, 6:45am - Well, today is the day we go home! Keep your fingers crossed. Okay, we've had several doctor visits and I'll tell you what's going on. Bobbi had a fair night. She has been in some discomfort from her surgical entry site. They removed the huge dressing from her head a few minutes ago. It looked like a turban and she looked like Gloria Swanson while she had it on (less makeup though ;-). Also, we learned that Bobbi did in fact have a mastoidectomy, and it's not that she has less bone covering. I don't think Dr. Tucci actually said that..maybe she was trying to keep it simple for us. Anyway, I found a video explaining it (mastoidectomy) HERE. Anyway, we go for the PET Scan in an hour, and we'll see what happens. I'll keep you posted.

September 30, 2008, 8:30pm - Bobbi is in a lot of discomfort, but she's already taken all the pain meds she can for now. What she needs is to sleep. She does sleep, but wakes up from time to time. All the nurses are checking on her, even the one's off duty. Everybody loves Bobbi.
Because she's having a PET Scan in the morning she can't eat or drink anything after midnight. Because of the pain from her surgery (she can't chew) she was given broth for supper- not very filing, so I went down and got a bowl of clam chowder and strained out the solids. She loved it. We're keeping a close eye on her blood sugar. It hit 390 last night (that's high). It's a side-effect of steroids.
September 30, 2008, 6:30pm - Bobbi is awake and talking. She is uncomfortable from the surgery (and a tad cranky, but she's allowed to be!). We're trying to arrange some soft or liquid food for her. At 5pm Dr. Jones came by and spoke with us again. She is setting Bobbi up with an appointment with one of the radiation oncologist (I don't know which one, but we trust her judgment). Tomorrow Bobbi has a PET Scan to check on her ear, and then we'll be leaving sometime later. That's the plan. At 6:30 a couple of EN&T doctors came by and explained that it was actually her facial nerve that had become "dehiscent" and not a Cholesteatoma. Thank you all for calling and texting.
September 30, 2008, 2:30pm - SHE'S BACK!!! Oops, shhhhh. She's pretty groggy. She got back about 2pm and she's sleeping now. We told her about what happened to her, and we told her about Dr. Jones' visit. Then I got her organized- helped her out of the gown and into sweat. I got her to the potty and back and then remade her bed. Now she's sleeping. She's very uncomfortable, and sleep will do her good. I'll keep you posted.
September 30, 2008, 12:30pm - We just met and spoke to Dr. Ellen Jones! She is the famous IBC (inflammatory breast cancer) specialist and radiation oncologist here at the Duke cancer clinic. We had a long consultation- she came right to Bobbi's room to speak to us. Actually, she was under the impression that Bobbi had had her surgery yesterday and would be here today. She said she'd come back later to meet Bobbi.
Dr. Jones has reviewed all the records and the notes from last week's meeting with her associate Dr. Horton. She restated her opinion that because IBC involves the skin and not the breast tissue that surgery is not likely beneficial on the whole. She's recommending a six week course of radiation followed by a break and then reassessment. She said she was sure, having reviewed Bobbi's records, that she must be exhausted by all she (Bobbi) has gone though. She would be delighted to keep Bobbi here at Duke for her treatment and talked about a facility where patient's can stay called Caring House. We'd need a referral from a social worker to get in, and I'd need to see if it is in our HMO network. However, it seems unlikely that Bobbi would want to be away from home for six weeks unless I was with her (and I don't have six weeks leave).
Dr. Jones said that she knew two radiation oncologists in Asheville who had been on the faculty here at Duke and were the ones she referred patients to in the western part of our state. Dr. Brian Quaranta also went to school here at Duke, and Dr. Kelly Condra went to U of F (go Gators!), and they coordinate care quite closely with Dr. Jones. Sounds like we found our new radiation oncologist. Dr. Jones also talked about what we can expect to occur during radiation- skin irritation, fatigue, etc. Dr. Jones was very kind in answering countless questions. I think I'd rather Bobbi stayed here at Duke for her radiation. I'd feel better, but I guess Bobbi wouldn't (unless I was here too). Donna has volunteered to be Bobbi's shuttle back and forth to Asheville. Now I guess we need to make sure Dr. Pekal is aware of our decision.
September 30, 2008, 11:30am - We are sitting in Bobbi's room waiting. We hope to have her back by noon or a little later. In the meantime Jill (the sister), Donna (the mother) and I are discussing strategy. It's obvious we're going to have to be more militant in pursuing the care we want for Bobbi. Dr. Pekal seems to continue to resist changing radiation oncologists before we start her breast radiation therapy, but we remain determined. I guess there are a lot of dynamics involved, political, financial, prestige wise and otherwise. Maybe Dr. P just doesn't want to hurt Dave's feelings. Dr. Jones, the radiation oncologist her at Duke is world class, but there are a number of radiation oncologists in the area who could be perfect for her care. We both liked Dr. Smathers (we met her at Memorial Mission just before the brain surgery) and only went to "the other guy" to save gas money and because Dr. P. used to work with him. If we've learned anything it is that if you are not on your toes the medical system can be very disappointing and even bad for your health. Anyway, I've let Dr. Jones' office know Bobbi is in recovery and will be back soon.
September 30, 2008, 10:30am - The surgery is over and we just spoke to Dr. Tucci. There was no cholesteatoma. What appeared to be the remnants of the ear drum was in fact a mass of inflamed tissue. There was no pressure of the bone against the nerve because, for whatever reason, Bobbi's nerve was not encased in bone where it would normally be. It was simply a mass of inflamed tissue and a swollen nerve. So... well, there was no suitable skin or other membrane to reconstruct her eardrum because her radiation burns made them unusable. As an alternative, Dr. Tucci used a material called Alloderm to build an artificial eardrum. This is likely a temporary solution because she (the doctor) is not confident the material will "take". In fact, what she actually said was "it would be a miracle." In the meantime it will at least offer a barrier to further infection. Her hearing will not recover until such time as a viable eardrum is constructed. We don't know when that will be. At least that means we can begin radiation therapy on the chest area (stay away from the head, please).
The external pressure to the nerve has been relieved, but the nerve itself remains inflamed. The doctor advised us that recover could take many months, and during that time her facial muscles would remain paralyzed. This is probably the worst news. The good news is that Bobbi should recover from the surgery quickly and be discharged tomorrow. I should be able to see her in a few hours.
In the meantime Jill (the sister), Donna (the mother) and I are discussing strategy. It's obvious we're going to have to be more militant in pursuing the care we want for Bobbi. Dr. Pekal seems to continue to resist changing radiation oncologists before we start her breast radiation therapy, but we remain determined. I guess there are a lot of dynamics involved, political, financial, prestige wise and otherwise. Maybe Dr. P just doesn't want to hurt Dave's feelings. Dr. Jones, the radiation oncologist her at Duke is world class, but there are a number of radiation oncologists in the area who could be perfect for her care. We both liked Dr. Smathers (we met her at Memorial Mission just before the brain surgery) and only went to "the other guy" to save gas money and because Dr. P. used to work with him. If we've learned anything it is that if you are not on your toes the medical system can be very disappointing and even bad for your health.

By the way- Happy Birthday Uncle Dave!
September 30, 2008, 8:30am - They just called and the surgery is beginning.
September 30, 2008, 7:00am - Okay, she's being prepped for surgery....
September 30, 2008, 5:30am - Soon the little guys in scrubs will come whisk Bobbi to the operating room. She's resting but not sleeping. They're drawing blood, hanging bags of saline and fussin' around. They'll take her before 7am, and it's about a four hour surgery (plus prep and recovery). Maybe we'll know something by noon. It seems yesterday there was a lot of trauma surgeries and that's why everyone in the afternoon got bumped from the schedule.At least she's the first surgery of the day today. I'll keep you posted.

September 29, 2008, 5:30pm - Cholesteatoma- can you say that? Sure you can. Dr. Tucci has diagnosed Bobbi as having a Cholesteatoma. Her brother Chris had one when he was a youngster. What it basically is is a cyst in the ear. When Bobbi's eardrum disintegrated it didn't dissolve- hunks of skin retracted like pieces of a popped balloon. The irritated skin has caused a cyst that is pressing against the nerve. Untreated it can cause "conductive" hearing loss (the permanent kind). The marvelous thing is while they are in there removing the Cholesteatoma (say it with me) they will go ahead and repair her eardrum!
Since she was a kind of emergency they tried to squeeze her into an OR and the procedure was delayed through the day until a surgeon just came in and told her they had a guaranteed slot at 7am tomorrow morning. The alternative was 10:30pm which means midnight to get started. Who wants surgery on the hoot owl shift? Reckon those guys are chugging Red Bull and holding scalpels? Heck no! Tomorrow is fine! She could be discharged by Wednesday! I'll keep you posted.
September 29, 2008, 10:30am - Dr. Tucci took a look at Bobbi this morning and immediately prepped her for surgery. I'll keep you posted. Someone lend me a FuzzBuster.
September 29, 2008, 7:30am - Well, they just woke Bobbi up to get her dressed for her trip to the EN&T clinic. Last night she, her sister and her mom had a grand old time and gossiped and giggled and talk about..you know- girl stuff. They carried on until about 10pm when she convinced them she was fine and they should go to the hotel. She didn't need anyone to stay with her. She's such a liar. You see, I left around 6:30pm and got home around 1am and I feel like I've abandoned her.
I got home and tried to call her several times- no answer. If they give her an Ativan she can sleep through an explosion, but I didn't want her to worry, so I called the nurses station and asked them to tell her I got home okay. At 4:30am I got a collect call- it was Bobbi. She just wanted to check on me since she hadn't heard from me. She said she hasn't had any change in her facial paralysis, and she was cold and lonely.... oh man.
Anyway, she goes to see Dr. Tucci at about 8am. I'll keep you posted if I'm still here....

September 28, 2008, 3:30pm - We just heard from Bobbi's other and sister Jill. They are driving here from Charlotte to take over sitting with Bobbi. I seem to be running low on leave time at work. I know they (work) would work with me, but I'm afraid it's not the last time I'll need leave, so I better go back to work. Jill happened to be in Louisville, KY when Bobbi got sick. Somehow she got to her mom's house, found her mom's car keys and then drove to our other sister Sarah's house in Charlotte where we dropped Donna off...back when we thought this was going to be a two day out-patient trip. I just can't hardly bear to leave even if I know Bobbi will be in good hands. Reckon that makes me codependent? Who knew?
I guess it also means less updates here- I'll be in the same boat as y'all, dependent (dang- that word is back) on the people actually with Bobbi for news. I was just getting good at navigating the area (still haven't found Target yet). I say that sitting here in clean clothes, eating Triscuits and drinking a Diet RC cola. Where'd I put the CheeseWiz????
September 25, 2008, 11:30am - Susan Livengood just called with a funny story about our little dog. She and Bobbi's brother Greg are keeping her for us, and Rikki is developing an artistic streak. Holy cow, she's growing fast. Read about it HERE. We're just sleeping and waiting. I'd like Bobbi to sleep through the whole thing if she could.....
September 25, 2008, 8:30am - We just had the doctors visit (only three today, but what the hey). Our nurse and I think we receive a slight improvement in the left eye. Her mouth remains droopy, but it seems like her eye is moving when she tries to blink. The main attending said he was "slightly encouraged" at this improvement, and he's not in a hurry to put her in the decompression chamber. They'll check on her several times today. I'll keep you posted.
September 28, 2008, 6:00am - Sorry about the no more updates yesterday. There was really nothing to add. Nothing medically happened. I spent about three hours doing laundry..., well, one hour finding the laundry mat, an hour shopping at Kroegers (soap and snacks) and an hour doing laundry. Other than that, all we did was watch The West Wing Season One DVDs on the laptop and try to deal with this limbo. Since the tests have eliminated anything other than a swollen nerve trapped in bone (if that's the right way to describe it) all we can do is wait and see if the steroids will help. If not I guess there's going to be something like brain surgery in the next few days. Bobbi's face show no sign of improvement after 48 hours of steroid treatments. We've already been on IV antibiotics since Tuesday night to we have to hope the steroids work. It's the weekend so the main clinics are closed, and even if they were open nothing would happen till the ear thing is cleared up. That's all that's going to happen medically this weekend. I've been hoping for Dr. Greg House to show up- no such luck, but we did find out it's not Lupus. By Monday we'll have been in the hospital this time longer than for all the other stays combined, and we're not even dealing with cancer care. The staff is still the best- attentive, caring and incredibly competent.
It's nice to have clean clothes again. My biggest challenge right now is to keep Bobbi's spirit's up. It's very hard to have hope when you have zero improvement after nearly a week in one of the best hospitals on the planet, and sometimes Bobbi seems to loose hope. All I can do is hold her while she cries and try to find words that will help... any words. I did remind them she gets steroid-induced diabetes, and when they checked her blood sugar it was 300. High blood sugar certainly effects brain function. Maybe she'll be less sad today. I hope so- it's killing me. By the way, I had an epiphany. I don't know how often I hear people say "oh, we read the web page and we can tell how much you love Bobbi" and stuff like that. It occurs to me you missed it. Whet you see and read is how much Bobbi loves me. You see me giving back (or trying to) what she gives me. I don't have her capacity for love, I simply respond to her's. I'm sorry if you haven't basked in the glow of the love of another person like this. It's staggeringly compelling and you can't help but respond to it. You need it more than food. It's like the need for oxygen- it wouldn't be life without it. You're really seeing the manifestation of Bobbi's love for me. It's like you're complimenting me for breathing. Thanks, but Bobbi gets the credit. It's why people have read this page more than 10,000 times in the last six months. I'm fortunate that way. I love and am loved by the best people- all of you.
We mourn the passing of Richard Wright and Paul Newman.

September 27, 2008, 8:00am - It's Saturday in Durham, but we're in a pretty good news. The news that her bones have neither massive necrosis (none in fact) nor any signs of infecting is good news, but her condition has still not improved. The nerve does appear "enhanced" and slightly swollen, and because it's inside a bone the swelling puts pressure on the nerve. This makes the nerve stop working. A lot of pressure for an extended period could cause permanent damage- we'd like to avoid that. So, she did start steroids yesterday and we'll continue them for the weekend and see how she responds. If she responds well we can go home early in the week. If she doesn't, who can say?
In the mean time we have been up and around a lot and have taken numerous walks around the ward. The staff remains unceasingly attentive and kind. We've had several doctors look in already and we expect "the gang" any minute. This place rocks. Only the eggs in the cafeteria are lousy. I hear the gang outside the door- I'll keep you posted!
They just left. The plan is to see how Bobbi responds to steroids. If she doesn't they have to do surgery to relieve the pressure on the nerve to prevent permanent damage. Keep your fingers crossed.

September 26, 2008, 5:00pm - while Bobbi was sleeping some flowers were delivered and they are gorgeous! It seems Bobbi's mother and sisters ignored the "No Flowers" thing, and they were right. When Bobbi woke up she was just overjoyed. We just had a visit from the Patient Resource Manager and she wanted to make sure we had access to some home health nursing organization. Do we ever. I gave her the contact info for Cathy and our pals in Cherokee. This gives us hope that someone here is thinking about sending us home sometime. No word on the scans yes, but this is a very hopeful bit of news. As much as we've ....well, not enjoyed exactly, but we've been impressed by the care and attention Bobbi and myself even have received. Still, we've been in these clothes for more than once dance and we love our new washer and drier at our house. I told the patient resource manager that we were pretty impressed with our Duke experience. I might have to join Elnora and get a bunch of Blue Devil memorabilia. I'll keep you posted.
September 26, 2008, 4:00pm - Bobbi is back! Actually, it was pretty funny. Since I haven't slept much since I got here we decided I'd take a nap in her bed while she was gone. It took a while but I finally dozed off. I was awaken by a nurse who I had not seen before who announced "I'm here to start your IV". I tried to dissuade her but she seemed intent. Finally I produced ID thus proving I was the wrong person and not just a reluctant patient (though clearly I was reluctant!). Anyway, Bobbi just got back. She announced she'd like some ice cream, and as luck would have it I discovered that the stairs across the hall from our room end up at the actual cafeteria! Cool! I wish I'd learned that Tuesday- my tubby butt would be all skinny by now. Six flights od stairs- sheesh! Now I really have to find a laundry mat!
Anyway, both procedures were performed concurrently, so now all we have to do is wait...and wait...and.., well, you know the rest. I'll keep you posted. Bobbi asks me to tell y'all "I am hopeful we have some changes coming soon, and I thank you so much for keep me in your thoughts. I love you all."
September 26, 2008, 11:00am - Okay, we met Dr. Tucci the otorhinolaryngologists we're going to see this morning even before she was admitted Tuesday night. One of the other doctors removed quite a bit of old flaked skin and earwax from her right ear. They looked at the left ear (the problem one) for quite a long time. Dr. Tucci says there appears to have been quite a bit of infection deep within the ear canals. The MRI show some moderate "enhancement" (sounds good, but means bad) of the nerve that runs through the bone and connects to the muscles of the face. She ordered another procedure besides the abs ese scan. My impression from her is we're going to be here at Duke another week.
Bobbi is going down now to be prepped for a bone scan. This is in addition to the Indium leukocyte test. She'll have both of those this afternoon. They have started her on steroid Prednisone again since there is no evidence of any remaining infection. I just got off of the phone (as I am typing this) with her neurosurgeon Dr. Rhoton. He just read her MRI from last thursday and it shows a lot of fluid in the inner ear. I told him what's been happening and he agreed we were in the best place for Bobbi to be treated.
So that's it. Today's two procedures should show exactly where the problem is and what we'll do to treat it. Bobbi's spirits are not good, but she's a fighter. She is afraid, I think, that the paralysis will not clear up. She jokes about looking like Quasimodo, but I can tell she's afraid it might be true. Only some improvement in her symptoms will reassure her, and so far there has been none. In the meantime she doesn't want anyone to see her looking like this... I guess we'll try to set it up so her mom stays with her next week. I had six weeks of leave when we started, but this has used it all up. Thank God Donna can help.
September 26, 2008, 7:00am - We just had the gang of doctors and interns come visit. We've also had visits from some individual doctors, and this morning we go see Dr. Tucci at the EN&T clinic. Meanwhile, Bobbi has not improved and she's getting pretty frustrated. Yesterday I mentioned to "the gang" that the last time Bobbi had these symptoms steroids were given as well as antibiotics. The attending doctor said they had been discussing starting Bobbi on Prednisone. I asked if the thought it was Lupus.... that got a few to loosen up.
This is our fourth day. This is longer than we've ever been in a hospital. "We" had a brain tumor surgery and were home in only four days. I think this is why Bobbi is upset. For myself, we've had a lot more diagnostic procedures and about ten times more communication with her doctors, so I am feeling good about the care she's getting. Bobbi's freaking out about the bill, and I'm keeping her talked down (even if I'm a tad concerned myself). I'll keep ya posted.

September 25, 2008, 12:00pm - Bobbi's back from her MRI and we're waiting on the folks from nuclear medicine to come inject Bobbi with her radioactive white blood cells (see earlier posts). We're also waiting to hear when she's going to go into the hyperbaric chamber! Duke has the largest one in the southeast. Her nurses have checked on her frequently and are very attentive. She has forbidden me to post any more pictures of her.
You can call the room direct at 919 681-6315, but it's hard for her to speak and she's self conscious of her slurred speech, so please ask yes or no questions and don't talk too long. We're going to be here a while.
September 25, 2008, 9:00am- Okay, we've had the procedure to draw blood for Bobbi's Indium leukocyte test.They drew about 55ccs of blood, separate out the white cells, soak them in Indium, rinse them off and put them in the plasma from her blood and them inject it back into her. Then, in about 24 hours, they put her in an imaging machine and scan her whole body. This tells us if the white blood cells are concentrating in an area- usually a sign of an active infection. So we know now we'll be here through tomorrow at least... maybe well into next week. I'll keep you posted.
September 25, 2008, 7:00am- Good morning. We had a rough night emotionally, but not medically. Fortunately the gang of doctors came in and reassured Bobbi that if her face is worse, it's only slightly worse, but we have a lot of procedures scheduled for today. We're going to have an MRI (the super duper one) to check her brain for any tumor activity. This will also help diagnose the ear pain. We're also waiting to hear about the "abscess scan". It's a pretty rare procedure and the special cesium tags are not stocked in large quantities, so there wasn't enough on hand to do it yesterday. If they get enough today we'll do it today.
We've had several visits from doctors this morning. Here's what they're saying to us. The ear cultures came back negative- there is no infection left. The fact that the antibiotics are not helping with the symptoms confirms this. The scans of the bone are clean so were leaning towards something called Otitis Externa or Otitis Media. It could still be the radiation induced neuropathy, a side effect of the whole brain radiation. We are, I think, planning on putting Bobbi in a "hyperbaric oxygen chamber".
We're resting comfortably. Bobbi finally talked the folks her to stop poking her for IVs and to access her chemo "port" (portacath). They just finished doing that. Bobbi calls it her Borg Implants, but it's much simpler and causes way less discomfort to her.

September 24, 2008, 11:00pm- Bobbi's sleeping. I'm waiting for the nurse to come by. Her facial paralysis continues to worsens, and now she's aware of how much. She's pretty upset again.
September 24, 2008, 5:00pm - Whew- what a day. Okay, we got to see the surgeon Dr. Scheri. He was very nice and tremendously helpful. He agrees we need to evaluate the ear thing before deciding anything. He agrees that a mastectomy is of questionable benefit with the cancer Bobbi has (inflammatory) and that we should start radiation as soon as possible once the ear is cleared up. They have ordered the super duper MRI of her head to make sure the tumor hasn't recurred.
We also talked to Dr. Lee, Bobbi's attending physician here in the EN&T ward. We had some good news. The CT and CT with contrast scans showed that the bone is intact- there is no big loss of bone density from the infection like we had feared. We will have the abscess scan tomorrow (see earlier post) to verify this.Were now back in Bobbi's room- 6315. She is not in as much pain as the episode three weeks ago, but her facial paralysis is more pronounced. This concerns her, but she feels good about the medical reports we've had. Her fear is that the paralysis won't clear up. We shall see. In the meantime her speech is a little slurred but her spirits are improving. It's hard for her to drink anything with a cup or a straw, but physically she feels good. Her feet continue to regain the feeling she lost as a result of chemo, but her face thing prevents her from wearing here contacts. Her appetite is good and she's perking up. I thing the best thing is we might get to sleep before midnight tonight- that's gotta help. Call my cell phone if you want to talk to her, but not after 9pm, okay?

September 24, 2008, 1:00pm - Okay, well, we've seen the doctor, just not the one we thought we were going to see. Dr. Ellen Jones was in a meeting, so she sent her associate Dr. Horton (also a radiation oncologist). Don't be disappointed, Bobbi likes her very much. Anyway, after her our long story she went for a consultation with a number of other doctors. When she came back we talked. Here's the deal- "they" recommend we continue with the plan to start radiation and probably not have a mastectomy, but there are several caveats. We have to be sure that the problems Bobbi is having with her ear and head are not related to a reoccurrence of her brain tumor or a similar metastasis. So we're going to have super dooper MRI (I'm almost sure that's not the exactly correct name) that is very high resolution and capable of very fine "slices". We also need to have the consultation with the surgeon.... it was scheduled for 12:40pm, but we're pushing way back (this place is always packed). They also shared our frustration that Bobbi's former radiation oncologist failed to follow the course of care agreed upon by everyone (he included) after our last visit to Duke in March. They agreed that we could get care as good as we'd get her at Duke from any over several other radiation practices in the Asheville area.
Okay, mastectomy- both of the breast cancer specialists (hooray!) we saw confirmed that IBC is not statistically benefited by breast removal. Yes, it's not a big deal (especially compared to brain surgery), but the skin is the main conductor of IBC metastasis, so tissue removal is of not great benefit and introduces the additional risks associated with any major surgery. That and the fact that she (Bobbi) has responded so remarkably well to chemo and is effectively symptom free except for the ear thing. Still, we'll discuss it al with "the gang" whenever we have our next consultation (sometime in the next hour or so we hope). We're not sure when the MRI will be- I'll keep you posted.
I am ashamed to mention any difficulty I am experiencing when compared to all Bobbi has gone through and has yet to go through, but the rage has built up in me. If my chest were a cannon I would shoot my heart at the people who have failed (in my mind and yes- I'm ripping off Herman Melville) to show Bobbi the care and diligence I think she has every right to expect. I know this may be neither a logical or perhaps reasonable reaction and it also serves no rational purpose as far as furthering Bobbi's care. I just don't want anyone to be deluded on how great I'm dealing with all this. I'm simply internalizing it (like I always do). I just don't see any choice but to learn to deal with it, release it and move on. I think I'll by a bottle, get drunk, then find an AA meeting and learn to offer it up to my higher power. Dang- I already no that. No bottle for me.

September 24, 2008, 9:00am - Good Grief! Okay, well, what we have here is a failure to communicate. When we were admitted last night we stated that if it would delay or interfere with keeping our appointment at the breast cancer clinic we would not consent to being admitted till afterwards. The PA thought he had it worked out, but it broke down somewhere. We asked the charge nurse to check on our clinic appointments and Dr. Markum's office never heard about that and wondered why we missed our appointment. Sigh. Anyway, our nurse is trying to get Dr. Markum's intern to meet us at one of the other appointments. Ashley (our nurse from Ohio) is having "transport" come fetch us and wheel us over to the clinics. Bobbi was freakin pissed, but she calmed down as Ashley worked on correcting the situation. We're going to keep the main appointment with Dr. Ellen Jones.
In the meantime we have a nuclear procedure scheduled called an "abscess scan". It's a pretty rare proceedure- our nurse had never heard of it. They draw some blood, separate the white cells, tag them with a radioactive isotope, and then inject it back into her and scan her. The white cells (if they're behaving) concentrate in areas of infection. This will verify if her bones have an infection (and every other place at the same time). This will happen tomorrow. Right now Bobbi is enjoying a tastey breakfast! The bacon here is delicious! I'm eatting oatmeal. Sigh.
September 24, 2008, 7:00am - Good Morning! We've already been up to our armpits in doctors! Holy moly. Okay- here's the news. Bobbi had two CT Scans last night including one with radioactive markers. We have the results already! It seems that the bone scan looks pretty good. There is no gross bone infection and we are probably looking at a "radiation induced neuropathy" (actually it was some longer words but I can't take notes that fast). It may be a not-uncommon side effect from whole-brain radiation. There's actually bone damage and they are talking about putting her in a hyperbaric oxygen chamber (Hello Calypso). Hyperbaric Oxygen Treatments
for Complications of Radiation Therapy is a new and promising treatment for this kind of side effect to cancer treatment. Read about it HERE. Bobbi is feeling huge relief about what has happened in the 12 hours since she was admitted and so am I. The fact we're talking about oxygen therapy instead of surgery to remove bone is great! What a different experience than out last adventure at the "other" hospital. Last time we only saw the attending physician twice in there days. Here we've seen one doctor four times, four doctors three times and we just had no lie eight doctors in here having Bobbi puff out her lips (or try to anyway), blink her eyes and all the diagnostic stuff (I'll try to get more details for you medical professionals). Bobbi is really perking up which is saying something. This time her Bells Palsy symptoms came on in 12 hours instead of three days and they got much worse. Also, her sense of balance got a lot worse than it did three weeks ago. It's one of the reasons she was so upset.
Now, it ain't all a bed of roses. We missed HOUSE! Anybody got a Tivo? Bobbi says to you all "Thanks for all your support and helping out with the puppy, the Boy Scouts and all the other thing you all have done for us. I tend to feel guilty when I don't do what I think I should, but right now I need to spend all my energy trying to feel positive and get better if I can." I went back to the hotel after midnight (once Bobbi went to sleep) and took a shower then checked out. Now I'm back in her room (same show, different station). Memorial Mission still has the best chair by the way. I don't know how long we're going to be here. On the way down the elevator last night I talked to a lady who said her mom had been here two weeks. Coming back up I talked to two ladies who's mother has been her a month. Gulp. I'll keep you posted.

September 23, 2008, 11:00pm - Well, we just came back from CT. Bobbi had two CTs, one normal and one "with contrast". They've hung a bag of antibiotics on her and we're watching TV and holding hands. When she goes to sleep I'll go get her some clothes from the hotel room. I guess I'll go ahead and check out and just sleep here. It's not like I'm going to sleep anyway. Good night y'all.
September 23, 2008, 8:30pm - Bobbi is sleeping right now. In a minute they're going to start an IV on her. They've taken her medical history and they're going to send her for several CT Scans tonight. One will tag her white blood cells with a radioactive isotope to check where the infection is. We're hoping the infection is not in the bones. I'm watching SILVERADO on the TV and updating the web page. At least Duke doesn't block the network "port" I need to upload web pages. I have no idea how long we'll be here. I'll keep you posted. Oh yes- I have a new cell phone and it doesn't have your cell phone number in it. I left in such a hurry I didn't bring the old one with me to transfer numbers, so please call it with your cell phone if you want me to be able to send you text message updates and such. Remember to hit the refresh button on your web browser often as I am adding entries pretty often. "Rejoice! Rejoice! We have no choice but to carry on." Stephen Stills
September 23, 2008, 7:00pm - Okay! We're in room 6315 at Duke University Medical Center. Things are looking up! The chair reclines and it's NOT made out of cinder blocks! Bobbi perked up there for a little while. She even went by herself and bought some Starbucks! She's pretty fatigued, but I think all the doctors showing her a little attention gave her some hope. Now we're up in her room and she's having a nap.
By the way- thank you all. Thank you David for watching the house. Thank you Susan and Greg for watching that danged dog. Thank you Sara and Paul and Donna and Sam and Lloyd and Lloyd (the other one) and everyone at work and all of our family and all of our friends (same thing) for your care and prayer and support of "our girl".
September 23, 2008, 5:30pm - Well, she's admitted, but her room isn't ready yet, so we're eating at the cafeteria. Talk about swanky- they even have a sushi bar, and they're open 24hours! I reckon we' de settle for a fry bread bar at our little hospital! Where was I? Oh yeah- you should have seen it- the PA (he was awesome by the way) made a phone call and there were four EN&T specialists and a couple of PAs in the room in five minutes! Holy Smokes- remember, at our little hospital when we didn't see a doctor for days? Anyway- good news bad news. It's bad, but not too late. Were hearing words like conductive hearing loss and Osteomyelitis (I'm using notepad so spell check will wait till later). We may be looking at surgery to remove some bone. We'll see. Anyway, stuff is happening and it's happening pretty quick. I'm still tied up in knots, but grateful to the EN&T doctor in Sylva who made a good call and got Bobbi an appointment right away.
The main EN&T doctor in the clinic is in Chicago at a conference, so we won't see her till Friday. In the meantime I think Bobbi is in good hands with the other docs on the EN&T team. The awesome PA Josh got all of Bobbi's cancer consultations moved from the clinic to her hospitals rooms. Bobbi doesn't even have to leave her bed to see all three doctors. I told you the PA was awesome! Okay- signing off for now. I'll keep y'all posted.
September 23, 2008, 4:30pm - They took one look in her ear and now Bobbi is being admitted to the hospital here at Duke. I'll keep you posted.
September 23, 2008, 2:30pm - We are at Duke. We're in the Otolaryngology (head and neck surgery) clinic. Bobbi is having a hearing test before her consultation. We're not doing very well. Her "Bells Palsy" symptoms are back and she's very very depressed..... I think she feels a sense of foreboding. We had an easy trip down and checked into the hotel already, but I wouldn't be supervised if they admit her to the hospital. I'll keep you posted. I gotta do paperwork.

September 22, 2008, 11:00pm - We have arrived at Sarah and Paul's safely. We're down by Davidson College in Cornelius, NC. Tomorrow morning we have about a 2.5 hour drive to Duke. We'll check in at the hotel and then go right to the ear clinic. Then, at 8am we'll be at the breast cancer clinic for the day. I have no idea if they might take one look at her ear and admit her to the hospital. I'll keep you posted.
September 22, 2008, 3:00pm - We wanted some action- we got some. Bobbi just saw the senior EN&T doctor who was concerned enough to call Duke himself and have them make an appointment to see Bobbi tomorrow! So, I'm home packing and loading the van while Bobbi and her mom drive home. We're going to Duke! I'll keep you posted.
September 22, 2008, 7:00am - Okay, Bobbi's looking for someone to talk to about her ear/head pain. I don't know who she'll find, but I'll try to keep you posted. We're off now to spend the night at Sarah and Paul's.

September 21, 2008, 9:00pm - I guess the conehead thing wasn't funny, or I'm just obtuse. Anyway, what a good day. Bobbi doesn't feel better, but we got a lot done today. We moved some things in the yard, Casey helped me get rid of an old charcoal grill and I did a little canning. Bobbi and I spent about four hours peeling the tiny green apples in our yard and then I canned 7 pins of them as apple sauce. Sheesh- we gotta grow bigger apples.
I booked our rooms at Durham for this week's trip to Duke and generally just sat with Bobbi when she was up. She thinks the infection is back- at least the pain it. I've no idea what it is- it could be anything, but I don't see how it could be an infection when we just finished these massive doses of IV antibiotics.

September 20, 2008, 3:00pm - Well, we're hosed. We're trying to find someone to read Bobbi's MRI. The neurosurgeon went ob vacation and never read it. Nobody from his practice read it. Bobbi has developed some symptoms. They are news. Bobbi's medical oncologist is very concerned and asked us to get the MRI read. We've been making calls ever since. Nobody is available, and the neurosurgeon's office was mildly sympathetic but less than helpful. She just left a pretty upset and angry message with her EN&T doctor. Bobbi did??? Our Bobbi? Heck yes she did, and slammed the phone down when she was done. By my reckoning we've seen or been treated or consulted over fourteen different doctors now, and nearly half have been.... "disappointing". Now it's nearly 4pm on a Saturday and Dr. Pekal (medical oncologist) wants us to find a way to get the MRI read.... I'm open to suggestions. It looks like the only way that will happen is if we admit her to Memorial Mission Hospital.... or wait till Monday. I guess we're going to drive around with her medical records in case someone condescends to call us back.

September 19, 2008, 5:00am - Here's the latest. Bobbi feels GREAT! The home health nurse came by, removed her "Borg implants" and topped off her insulin (it was 190- not that bad). Then her mom came over and they've been cleaning windows all day. Still no reading on her MRI from yesterday. It seems our neurosurgeon is on vacation. Sheesh. Anyway, it you have any kind of medical background please take a look at the MRI and see what you think....
September 19, 2008, 7:00am - I guess I forgot to finish filling y'all in. Last night I "pushed" the last "amp" of medication for her ears. Today a nurse will come and remove the IV adjunct that is plugged into her "port" (she calls this all her Borg implants). On her own she increased her steroid does as well as the pain killers she is taking. This morning she'll try to track down someone to read her MRI- I hope it's good news. We are still dealing with elevated blood glucose levels. Other couple go on cruises, trips to Europe, things like that. Bobbi and I lay in bed and take insulin together. Different strokes, right?
Oh yes, I didn't finish uploading her MRI. Well, you can see the thumbnail over on the right side of the web page. It's cool- that's really Bobbi's head. I'd know that skull anywhere! (I told her it was pointy!). LOL
September 19, 2008, 6:00am - Bobbi had another MRI yesterday (the one postponed from Tuesday), but she didn't get to talk to the neurosurgeon about it. That's too bad, because we're pretty anxious. It seems the pain is back- not the ear ache pain, but a new pain. She says it feels like it's in her bones inside her head. To say she is concerned about it would be a huge understatement. The pain started around Monday and has gotten quickly worse. Before she had cut her earache Percosets to almost nothing. Now she's taking the full dose (two every four hours) just to deal with the new pain. I hope we get to speak to the neurosurgeon right away.

September 17, 2008, 6:30am - Well, yesterday was a mild mess. "We" had an MRI and a consultation with the neurosurgeon, but both got cancelled (one at a time) while Bobbi and her mom were actually on the way to those appointments. Bobbi feels a lot better these days, especially if I watch her blood sugar levels like a hawk. The steroids are really hard on glucose levels. Friday is the last day of IV antibiotics! Hooray! Her ear seems completely healed ....except, you know, for the missing ear drum. Next week is Duke! We have appointments on Wednesday and Friday (the ear doctors on Friday). Otherwise we're just a little down. Probably it's a seasonal thing.

September 14, 2008, 8:30am - Jim Claymore, husband, father, teacher, long time Scouting volunteer and beloved elder of the American Indian Scouting Association has made his "transition". He passed away in his sleep Friday, September 12 at his home in Mt. Juliet, TN. He leaves behind a wife, children and friends who will miss him deeply. Bobbi and myself extend our heartfelt sympathy to Jim's family. In the eight short years I knew Jim he had a profound influence on my life. His passionate advocacy for all children and his dedication to Scouting served me as an example I wish to emulate. I am honored to have served with him and to now count myself as an elder in AISA. I am in good company. Though it's not likely they ever met, he and my father were stationed near each other in England during WWII where they both served in the Eighth Air Force.
While we are all devastated by his loss, we are also heartened and strengthen by the feelings we have for him and by the chance to pick up the burden he has at long last laid down. It is fitting that we do this, and I know that we do this with pride. My life is better for Jim having been in the world. My friend John Martin and I went to visit Jim last year as his health was failing (he was then 86). We discussed many concerns and troubles we had in how to best serve the youth in our care. I take comfort now in the words he shared with John. He said "I can do more from the other side". Thank you, Jim, we know you will.
View the Jim Claymore interview HERE.

September 13, 2008, 8:30am - I'm almost afraid to say it, but we are doing pretty well today. In fact, Bobbi's mother and I agree that Bobbi is suddenly very much improved. She's gone from sleeping 23 hours a day to sleep a more normal nine or ten. Her color is good and she is pain free. She's missing an ear drum, but heh- nobody's perfect. We have appointments Sept. 24th with three different doctors at Duke U including (for the first time) a surgeon, and we will be speaking with the new IBC specialist Dr. Jones. We're trying to add a fourth appointment with an ear specialist to see about what we can do about Bobbi's eardrum (or lack of one).
I'm sorry if I didn't keep the faith. We have a big Scouting banquet tonight and I was just so sure we'd not be able to go that I didn't even plan on it. Now she's more like her old self she's quizzing me about what projects I'm going to be working on! LOL, she's back! I hope it's for a long while. Either way, I am grateful for the grace that gives us our time together.

September 12, 2008, 4:30am - Okay, Bobbi saw her EN&T doctor today and found out a plain old Staff infection ate her ear drum. Dang, she had one when we started IV antibiotics, but it was gone within 6 days....what might have been the outcome if we'd started sooner? Who can say? Bobbi specifically asked if it was the ear drops that caused it and the doctor said no....but failed to speculate what might have happened had he gotten serious sooner.... and people wonder why some people "go postal".
I talked to Duke University and we have an appointment to talk to the celebrated Dr. Jones! We'll also visit our old pal Dr. Marcum plus consult a surgeon we haven't met before- Dr. Sheri. Unfortunately, this isn't until Sept. 24th, but at least it's steps forward! Right now Bobbi and Donna are talking to Bobbi's medical oncologist. I'll keep you posted.
September 12, 2008, 6:30am - Today Bobbi meets with her medical oncologist. I'm not going with her, but her mother is. I'm afraid I might say something unfortunate (man's got to know his limitations). Donna is as much Bobbi's advocate as I am, and they already know my mind.

September 11, 2008, 9:30pm - Well, we're having another adventure. The Pharmaceutical company was supposed to deliver Bobbi's IV antibiotics today, but we didn't get it before 4:45pm which is when we BOTH went to Cub Scouts. On the way we called the company and they said UPS delivered it at 3:30pm. Oh contraire, we assured them. They said they'd check. When we got home we looked everywhere- no cooler. In case the confused Bobbi Lambert with David Lambert (on a different road at a different address) we checked there- nothing. Then I recalled UPS often delivers to my office instead of taking stuff all the way to my house...so we packed up and drove all the way down there. No package. On the way home we were low on gas- and OMG, every station had long lines! What the heck?
Anyway, we both went to Scouts. Bobbi even walked a couple of miles on a hike with the cubs! At Boy Scouts she kind of pooped out, but she was awesome!

September 10, 2008, 6:00pm - OMG. Here's a news flash- Bobbi has no ear drum in her left ear. The infection ate it. Can you believe it? I can't. They may be able to reconstruct it surgically....but "we" farted around so long Bobbi is now missing her left ear drum and is totally deaf in her left ear. Maybe the eardrum is with the missing cultures. I can't believe this. Maybe it's a dream.

At this time my aunt (one of them) is recovering from a double mastectomy at Memorial Mission hospital in Asheville. I'm sorry we can't be there with her. Our thoughts, hopes and prayers go out for her swift recovery. We love aunt Betty wish we were there with her family- with our family.

September 10, 2008, 4:30pm - HOORAY!!!! Let me catch my breath. You know (if you've been reading the blog) that we've been having trouble getting all Bobbi's doctor's to agree on a course of treatment. Also, I remarked last week that I had tried to contact Dr. Jones at Duke University who had recently set up an Inflammatory Breast Cancer center there (at Duke). I just got off the phone with Dr. Jones. I told her a brief version of the whole tale and she was very sympathetic. I was weeping by the time I finished the story. She stated that she thought a mastectomy was NOT likely beneficial in most cases of IBC, but agreed that we (Bobbi and I) should come back to Duke for another consultation (see March 12 web page to review) with the same doctors and herself. That will probably happen next Wednesday (Sept. 17) Stand by for news!!! By the way, Bobbi's ear continues to improve as does her facial paralysis. She's just very tired all the time.
September 10, 2008, 4:00pm - OMG. Okay.... so Poison Control calls us at home last night and wants to know why nobody called them with the results of the day's liver screen. Bobbi told them it was because none was done. When asked why Bobbi told them the doctor postponed it until Friday. This seemed to really upset them. They insisted Bobbi go back to the ER for blood tests. Bobbi called the oncologist and another doctor called her back and said "don't worry about it" or words to that effect. Poison Control was not pleased. Today Bobbi called her doctor who suggested Cherokee Home Health do the blood test. Home Health came this morning and did the test while they were changing her IV line.
This afternoon (2pm) Bobbi went to the EN&T guy. After sitting in the "freezing" room for two hours the doctor came in and drained the puss from her ear. He said it was a very virulent infection. Bobbi asked what the results of the culture were and the doctor remarked that he had in fact never been given a pathology report, so he called the hospital. There was no report- they lost the cultures. They lost the cultures and never mentioned it. I feel yet another tiny decrease in my confidence in these people. All these people. Anyway, Bobbi is at the hospital giving the lab yet another culture of her ear infection. Murphy was an optimist.