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AUGUST NEWS and EVENTS
September 9, 2008, 9:30am - OH YES!!! In fairness, I should mentioned that last week when I "expressed concern" to Bobbi's doctors and nurses about how much Tylenol she was getting, Dr. Pekal (her oncologist) was not one of those people. It was the "hospitalists" at CJ Harris Hospital.
September 9, 2008, 7:30am - We have settled back down at home again. We were up several times last night taking stinky liver flush juice (who thought of the name MucoMyst??? Sounds like a giant loogie) along with the regular stuff- ear drops and pills (no tylenol!). Bobbi is now on straight Oxycodone with no acetaminophen or advil for that matter. Thanks to Dave and Donna for checking on our lonely little dog. OH YES!!! In fairness, I should mentioned that last week when I "expressed concern" to Bobbi's doctors and nurses about how much Tylenol she was getting, Dr. Pekal (her oncologist) was not one of those people. It was the "hospitalists" at CJ Harris Hospital.
September 9, 2008, 12:01am - Well, that was an emotional roller coaster! Okay, well, what scares a doctor enough to call a patient at home and tell them to hurry to the ER? I don't know either, but I was scared! Good news- Nurse Cousin Becky was already there waiting for us! Okay, the long and the short of it was the did a blood test and her liver enzymes were off....not terribly, but off. She also had some tylenol "onboard", but it wasn't that bad (mostly because her ear was feeling so much better she already cut her dosage in half on her own!). Still, the protocol was the doctor had to call Poison Control. PC said admit her, or do a CT Scan with contrast to make sure her liver was clear. Then it hit me- maybe our doctor was afraid cancer had metastasized to the liver! Anyway, we had the CT Scan and her liver is clear! Because she had abnormal liver numbers they gave here a big dose of a sulphur drug called Mucomyst to cleanse her liver of the effects of Tylenol. The bad thing is the stench. Imagine rotten eggs soaked in sulphur and cooked in the goo they used for old-fashioned do-it-yourself home permanents. Now make it a cocktail. Yummy! She has to drink that every four hours, and the next dose is at 2:30am. Sheesh.
So, we're home and the night of terror ends on a happier note. Right now Bobbi is home and she didn't have to be admitted to the hospital (like we had feared for a long while). Bobbi will go discuss this "adventure" with our oncologist tomorrow, but I can't go with her (I have my own doctor appointment). That means I can't demand an answer to why they don't want us to get a second opinion from a doctor inside their own practice. Bobbi's mom will go and bug her for me. Thanks again Becky for being our "advocate".
Oh yeah- it's our 24th anniversary today!
September 8, 2008, 5:30pm - Good Gosh. Okay, so here's what's happening. Last week, while Bobbi was in the hospital, one of her oncologist's partners visited her in the hospital. He spoke very frankly about the pros and cons of a mastectomy. I missed the visit because I was out buying her medication. When Bobbi told me about the doctor's visit I was impressed and asked to have a consultation with this doctor. So today both Bobbi and I asked her doctor's office to set up a consultation with this doctor. Well, you'd think we made a rude noise in church. Both Bobbi and I were told (not asked) "you want to change doctors". No we don't, %$@#@!!, we just want a consult, but it seems they don't let patients do that. In the words of current gaming parlance- WTF??? So I called our oncologist (who wasn't in) and asked that she call so we can discuss this (and perhaps assure her we don't want to change doctors). Well, she called, but that's not what we talked about.
While Bobbi was in the hospital last week (when everyone decided that finally getting around to treating her ear infection was a pretty good idea) I mentioned to a couple of doctors and several nurses that increasing her dose of pain killers was also increasing her intake of Tylenol. Both Vicodin and Percoset have a lot of Acetaminophen in them. Acetaminophen is awfully hard on your liver, and she's been on these pain killers for five months in ever increasing doses. Anyway, Bobbi's oncologist called this afternoon and happened to mention that several weeks ago she noticed Bobbi's blood work showed abnormal liver enzymes. No shit, Sherlock, I've been trying ti get someone to check them for a week!... sorry..... Anyway, today she mentioned that last week the hospital blood work showed increasingly abnormal liver enzymes. Now our oncologist said Bobbi could come in first thing tomorrow for blood work in her office, but she would rather we go back to the ER at CJ Harris tonight and let them do a liver enzyme test on Bobbi and also check on her system's Tylenol load. I mentioned that we were still waiting on the results of the ear culture from last week, so I am not confident the lab will give us speedy liver results. At the risk of repeating myself, WTF?
I'm glad we're taking an interest in Bobbi's ear and her liver. I'm not sure why it took five months for the former and three weeks for the latter, but I'm glad "we" are getting around to it. So, calmly, I have to think about what's going on. Does the fact that some people think we might want to change doctors suggest that some people are taking a closer look at the quality of Bobbi's care? Am I wrong in not wanting to change doctors? I never considered it till just this minute. We mentioned repeatedly last week to many "professionals" that we were concerned about the Tylenol, and now Bobbi's doctor has called back and asked us to rush over to the ER for a liver test. I don't know what you think, but I'm starting to think that I'm not the problem. We gotta go to the ER now. I'll keep you posted.
September 7, 2008, 9am - Good Morning! It's a beautiful day on the rez. We didn't get any rain from the storm...in fact we haven't had rain for weeks. Still, it a very nice day. I'll go out and work in the garden.
This morning we got up early and did the medical stuff that starts our day- medications, ear drops, etc. Then I made a nice breakfast of omelets, turkey bacon, toast and fresh OJ. Yesterday afternoon we had to go to the drug store (but it was closed!), so we went over to visit the DeWeese side of the family in Sylva. Dr. Dick was at a Braves game in Atlanta, but we had a great visit with Becky, Jo and Aunt Lib. Jonathon was there, too, but his father (Dr. Steve) was at work. Then it was home for Bobbi's IV meds and a quiet night at home.
I've posted a picture of the IV meds I give Bobbi each evening. She already has a "port" under her skin below her collarbone. This has an IV line coming out of it that stays taped to her chest. I "push" an amp (ampule- pre-a measured dose) of saline to clear the line. Then she gets 10ccs of a very strong antibiotic. It's so strong I can only give her 1cc at a time, and I have to wait 60 seconds between "pushes". Then I push another amp of saline to get all the antibiotic out of the line and into her. Finally, I push an amp of Heparin (an anti-coagulation drug) to keep clots from forming around her port. The whole procedure takes not quite half an hour. Nurse Vickie called yesterday to make sure I did it all correctly, so don't worry- I'm supervised. I've actually had a lot of experience doing this, so don't worry, she's in good hands.
Last night I was up very late. I made home made tomato sauce from my own garden. Everything in it (tomatoes, peppers, onions, some spices) was from my own garden except for the olive oil and the garlic. I then "put up" eight pint jars. I haven't canned anything since I was a kid, but there are lots more tomatoes where those came from. I hope I can coax some more cucumbers- enough to make pickles!
Today it's a quiet day at home I think. We'd hoped to go for some rides and visit folks, but Bobbi is still pretty weak, so we'll just stay here. I had hoped she'd get a little energy back. I've been checking her blood sugar- it's high, but that's from the steroids. I've been giving her Insulin (via syringe) as needed. She's weak, but she looks good, so much better than last week. There is the slightest paralysis of the left side of her muth, but her face and eye seem pretty normal. She has also forgotten to take her pain pills a few time but had no pain! I think it means the treatment is working. For the last five months she was in pain before it was time to take a pain killer, now she forgets to take them and feels okay. That's progress, especially considering how concerned I was last week.
Last week was something. I guess I'm pretty blessed in many ways, many not so obvious. How many people have loved ones who are ill and find themselves at the mercy of the so called healthcare system? How many times must people blindly trust the doctors who treat their family? How many people are savvy enough to stand up and get in the face of those providers and get the treatment they need? I'm lucky. Not only do I have a background as a medic, but I'm surrounded by close freinds and family in the feild including several doctors, a few PAs and dozens of RNs. All I need is the wisdom to know when to ask, when to listen and when to stand up and get in someone's face and demand they care for my wife. That's what happened several times last week, and it's happening again this week. Becky, Jo, Casey, Steve, Dick- I'm proud you're on our side... on Bobbi's side. All our freinds and family (to my mind, I can drop the "freinds" part- you're all our family)- thank you for your support. This road would be impossible to walk with all of you giving us boundless support.
This week we're going to consult a different medical oncologist, and I imagine we're going to schedule a mestectomy for Bobbi. When we get through that we'll start radiation- probably with a different radiation oncologist. We're going to get the care we need from people we trust. By the way, Tuesday is our 24th wedding anniversary.
September 6, 2008, 2pm - Happy Saturday to y'all. We're having a quiet day home. I mowed and raked the lawn and tended the garden. Bobbi is resting. We're giving her ear drops every six hours along with her other meds, and then by 6pm today I need to give her the IV antibiotics. I guess we'll stay near home today, though we still have to pick up her new meds before the pharmacy closes.... I think I'll just let her sleep a little longer. Maybe I'll get more jars while we're out and can some of these tomatoes...
The pain management is working, and the IVs are working, too. Her face is pretty symmetrical now.
By the way, I put a few photos up from last weekend. Look how big that doggie is. In fact, that doggie asks almost grown up. We all got a full night's sleep last night, and she's proved pretty trustworthy and is now allowed in the house freely. No "accidents" so far. I gotta get a doggie door...
September 5, 2008, 6pm - I am one of Bobbi's care providers. I just finished administering her daily dose of IV Rocephin. To do that I access her "portacath", flush her port with saline, push 10ccs of Rocephin 1cc per minute (so it takes ten minute to push the ampule), push another amp of saline and then push an ampule of Heparin (to prevent clotting). We have to do this every day for at least two weeks. I did this first administration under the watchful eye of Virginia from Cherokee Tribal Home Health Nursing. We had a great time if that's an appropriate description for administering IV antibiotics.
Her EN&T doctor called and said he's changing her steroid from Decadron to Prednisone. I suspect this is because he got the results back from the culture the did on her ears, but we don't know what the results of the culture were.
Earlier today Bobbi's radiation oncologist called and told her he'd consulted with his partner and they agree that Bobbi would not benefit from a mastectomy. This is the same guy who refrained from suggesting whether or not to have a mastectomy two months ago. He is a highly respected radiation oncologist, but Bobbi's mother says he treats Bobbi without respect when I'm not there ("he talks down to her"). We've told her medical oncologist we wanted to change back to the doctor who did Bobbi's radiation work at Mission in Asheville.
So that's the news from today. We're staying home this weekend. We had to cancel a Boy Scout camping trip to Tennessee, but Bobbi comes first. And by the way, the Fusswagon is home and she's happy to see us! Donna (Bobbi's mom) brought her home for us. Bobbi's brother said she slept all night and never peed in the house. What's up with that?
September 5, 2008, 12pm -
We're Home!!! Well, Bobbi is home and I'm at work. We have so much to tell y'all. First of all we (yeah- WE) are not starting chemo on Monday. I guess we're going to go ahead and have surgery. Yes- THAT surgery. Probably the best thing about the hospital stay, besides actually improving Bobbi's condition, is we go to consult with a number of other doctors and medical professionals and we have a bunch of insights we didn't have before. I know there are a lot of folks who think we should be somewhere else to get treated- so do I. I think we're going back to Asheville.
Anyway, I walked into work this morning and it's slammed! I need to do stuff. I'll post more updates later. In the meantime Bobbi is home and resting well.The Beast is coming home soon and we'll have a nice weekend and plan the next few months as best as we can. Thank you all.
September 4, 2008, 3pm - We just spoke to the discharge coordinator. He's still trying to make it happen, so we shall see.
In the mean time everyone agrees that Bobbi is much improved and looking great! Her color is back and her face is only about 50% as droopy as it was.
I tell y'all honestly, Monday night I thought she was having a stroke, but Dick got me calmed down. We shall see if we get out tonight.
OH!!! The Phantom Lawnmower mystery is solved! Casey and Ro came up and used a push mower on our whole big yard.... and THEN discovered the
new 52" garden tractor behind the shed. Thank you Casey and Ro!
September 4, 2008, 2pm - Well, we seem to have movement. Earlier the hospitalist told us it might be tomorrow before we went home. We were waiting
on the culture (from her ear) to come back from the lab. Then we spoke again and the hospitalist decided that having a home health nursing service
was a better option than getting a daily IV at the hospital as an out-patient....but the WESTCARE home health service could not admit her as a patient until next
Monday (meaning staying in the hospital until then). Cherokee to the rescue! Cherokee Home Health can take us today! We're are now told we're going home maybe at 6pm
today! Of course it's not official yet, but we're very hopeful. Bobbi is going to be on these IV antibiotics for at least two more weeks. In the mean time I think
radiation is on hold. We're also up in the air about who and where to get the radiation. There is a wonderful cancer/paliative care coordinator who has been very
understanding and supportive of us. She's offered some new insights and suggestions as far as how to proceed with Bobbi's cancer treatments. I think we're going to
make some changes, but they may not include trips to Duke (or even Houston).
Anyway, keep your fingers crossed. We may be going home tonight. Thank you all!
September 4, 2008, 10am - Of course, I may be being over optimistic. It may be that we don't get out today... we'll have to see.
It's up tp the hospitalists, not our "real" doctors. In the meantime we continue her rotation of IVs. She's getting
Cipro, amoxicillin with augments and steroids. She's also getting oral steroids and Vicodin. We're waiting to meet with our hospitalist sometime
this morning I hope. In the meantime Bobbi looks a little better, she's still as sweet as ever and I've been in these clothes for more than one dance.
September 4, 2008, 8am - Live From CJ Harris Hospital- It's the Bobbi and Hugh Show!!!! September 2, 2008, 8am - We have issues. One of the issues we have is Bobbi has reached the point where she wants me to limit what she says here about her condition.
She is a very private person and some of the issues "we" have embarrass her. She has specifically asked me to not relay what's going on right now.
I think all I can say is that I wish the ear ache issues would or could have been cleared up long ago. Now we're dealing with
some side effects. I'm pretty disappointed with how a lot of this all has been handled. One problem I see is that every single doctor we've seen "professionally"
in the last six months has had an agenda. Surgeons cut, oncologists push potions and radiation folks... well, they burn. It's what they are trained to do.
September 1, 11pm - Hiya! We're back. We had a great time and I'll post some pictures as soon as I get a chance to.
It was a nice getaway and it's nice to be home, too. On the way home we stopped at Steve and Susan's house and found Donna and Dave there!
When we got home we found that brother Sam has mowed our
lawn and also weedeated! Whata guy.
August 30 - September 1, GONE FISHING
August 29, 2008, 8:00am - I'm sorry I didn't get to post anything yesterday, but I was simply slammed. I haven't talked much about "the beast" lately, but it's been pretty much business as usual....untill last night. Last night either she slept till 7am or Bobbi and I did- either way it's the first full night of sleep we've gotten in months. At least it was for me. Between the ear and the dog it's been about three or four hours a night for me. It's like I've turned my brain off and been running on autopilot. Lloyd Arneach (mini me) and I were talking about it yesterday. I'm glad I have work I love doing. The administrative bits I've let slip, but the actual nerd stuff (build server, install server, repair server, create a server from bisquick and spare parts) just comes natural ...except for the DNS stuff. I'm also lucky to have the crew I work with. They are the best. Usually I keep them laughing, but last week I got frustrated and blurted out "dang, you all are high maintenance!" There all just stopped and starred at me. Reckon they were trying to tell me something? <shrugs shoulders> August 27, 2008 , 12:00pm - Well, Bobbi is at chemo right now. I hope it goes well.....and I also hope she doesn't get any so she can enjoy the weekend at the beach. What kind of choice am I willing to make- wellness vs enjoyment? Anyway, the Vicodin mostly works. Sometimes she still has a lot of pain, and she's still sleeping a lot, but she seems much better rested than she had been. I made her a big pot of chicken gumbo last night with lots of diced spinach. We loved it. We sat on the couch and ate it while watching a great documentary called David Suzuki Speaks Out. We loved it. Now she's getting her chemo. I'll keep you posted.
August 25, 2008 , 7:00am - Home again! Sheesh, it was a fun but tough camping trip. When I got home Bobbi and I relaxed in front of the TV..... Maybe ON THE BEACH wasn't the best choice of things to view. While I was camping and rafting Bobbi spent the weekend at he mom's. Anyway, someone sent me a picture they took of Bobbi and I last month. Here it is! I gotta go to work so I can rest.
August 23, 2008 , 7:00am - Vicodin, oh how I know we love ya, Vicodiiiinnnnnnn...... Yes, Vicodin, the wonder drug that lets you sleep through all the pain. It's not just for breakfast anymore. August 22, 2008 , 7:00am - She says her ear hurts more than ever. Her mom is taking her to the EN&T guy today. I really hope good comes of it. August 21, 2008, 1:30pm - Yeah- pm. I took the day off. It's been a little rough here this week, and I need a day with my baby. When we got home Sunday night it had been an emotional weekend. Then Monday we learned a nephew who had been at the gathering was rushed to the hospital with what was diagnosed as Meningitis. What wasn't known was did he have the viral or bacterial form. Both are contagious, but the bacterial is highly so and can be fatal. Since we had been around "the little rascals" all weekend we were concerned for him, Bobbi in her weakened state and for the new baby. Yesterday we learned it was viral- not the sniffles but way better than it could have been. We're thinking of the little guy and wishing him a speedy recovery ....we're thinking of his whole family (our family). August 19, 2008, 9:30am - Well, here we are almost five months into chemotherapy. Bobbi was too week for chemo last week and this is an off week, so no chemo. This means she ought to be feeling pretty good by this weekend. I hope she does. We had a nice family gathering at her mom's house. It was the memorial for her father, and while often very emotional it was also quite therapeutic. I also promised y'all some pictures of Bobbi's new hair, so here they are! The one of Bobbi, baby and dog is a little fuzzy where Rikki was moving and I confess I did a dirty photoshop removal of a big pile of extension cords- I hope you can't tell. The Livengood reunion photos can be viewed at http://www.thelivengoods.org/
August 17, 2008, 10:30am - This has been a pretty good weekend! Bobbi's been tired, but not as much as if she would have had chemo, and in spite of the subject of the gathering we have had a wonderful time. I'll load some pictures as soon as I bring the laptop in!
August 16, 2008, 9:30am - Yesterday was a good day! We got up early and ran around doing medical things- another EN&T appointment, we took a fungus swab to the hospital for examination and "we" got a Neupagen shot. Then we ran on out to WindSong and finished setting up the big tent. After that a whole bunch of Livengoods, In-Laws and Outlaws arrived! More are coming today! Bobbi handled it. She had to rest a lot, but she made it till 9pm and then we came on home. Rikki was wiped out and slept till 6am! Whoohoo! August 14, 2008, 5:30pm - Well, it's a mixed bag. Bobbi got a new wig- it's different, but she likes having hair. I always thought of her as a "Hot Lips Hoolihan" kinda gal, but this wig is more Florence Henderson. Wohoo! Today we start setting up for her family's memorial service for her father. It should be a big gathering of Livengoods. I have to run now. After Boy Scouts I need to set up my 20x40 tent.
August 13, 2008, 7:30am - Good News! We actually have some relief from earaches! Bobbi saw a different doctor yesterday who discovered she had a fungus in the effected ear! She was drained and given a fungicide and it helped! She felt better and actually ate a large supper (for her) of London Broil, sweet potatoes and salad. She ate almost her whole plate and then was able to sleep! She slept till about 3am when her earache came back, but it's the most sleep she's had in a long time. She has another appointment with the same doctor this Friday. Yahoo! Today is chemo day, so she ought to feel pretty good till Friday when the effects kick in. So it goes.
August 12, 2008, 7:30am - Well, it was a sleepless night at our house, and only partly due to "the beast". Mostly it was the earache. I have to say I'm sorry for fussing so much about the ear nose and throat folks....the reality is as long as Bobbi is taking chemo there's not really much anyone can do. Her depressed white cell count makes her prone to every infection she'll come across, especially the one she may have already had. That's the reality, and it does not depend on how good (or otherwise) the EN&T people are. Anyway, it was a rough night for us. We're going to try some old-time remedies since any real drug might conflict with the drugs she's already taking- Sweet-oil, Witch hazel and peroxide may do the trick. At least I got the email working. August 11, 2008, 9:30am - Okay, everybody fly
American Airlines from now on! Inflammatory Breast Cancer is what Bobbi has. August 10, 2008, 10:30am - It's been a tough week. Anyway, sorry I forgot to update the HERE link on the main page. Anyway, we've been considering our treatment options. We have a good idea what we want to do, we're just completely at ease with it all. Bobbi and I are pretty concerned about the side-effects of chest radiation. A year ago we were all at Seabrook for her parent's 60th anniversary. A lot can happen in a year. Now we're dealing with our own issues. Bobbi's pretty frustrated with this disease right now. She seems to be responding pretty well medically to the chemo, but it is very tough physically and emotionally for her (and me too). The lack of energy, hearing loss, the #@@#$!!! incurable earache, her hair loss, the wig that doesn't fit.... it's taking a toll, and it's a burden I can not bear for her. Good thing she's so tough... tougher than she thinks she is. August 7, 2008, 8:50pm - Well, we have a lot to think about. We met with Dr. Thomas of course, and then Bobbi met with Dr.
Pekal yesterday after she had chemo. It pretty much comes down to this- we have three choices of treatment. One- the chemo is working okay, just stay on chemo forever
(or until it stops working). Two- interrupt chemo and have an aggressive course of radiation on the breast and lymph nodes, then when Bobbi recovers from that continue chemo
until it stops working. Three- interrupt chemo and have an aggressive course of radiation on the breast and lymph nodes and then have
surgery to remove the lymph nodes and breast, then when Bobbi recovers from that continue chemo. At this stage, surgery adds what may be between 10% - 20% of the effectiveness
of the radiation (maybe- it's pretty hard to know for sure or even approximately). Radiation has some potentially nasty side effects (you nuked her heart????), plus you get the
added bonus of not knowing how soon if ever the nasty will show up. Anyway, that's what we've been thinking about (and talking about a little).
August 5, 2008, 6am - Well, I'm rearranging the web page some (as you may have noticed). Actually, it's a hopeful thing. I think we're going to have a lot of news of a lot of months, so I need to organize navigation better. I'm doing it by seasons and years. I think we're going to need a lot of years of news pages, so that's how I'll arrange the navigation bars. "HERE" will still take you to the current month's news, but you'll also be able to use the navigation buttons at the top to find your way through "old" news. August 4, 2008, 6pm - Happy Monday. Tomorrow we meet with Dr. Thomas, the radiation oncologist. We will, I think, set the schedule for radiation treatments of Bobbi's chest area. The chemo has shrunk, but not eliminated the tumors in her lymph nodes or the lesion in her breast, so let's get the radioactive cesium out of the bottle and put it to work! Today was an easy day for Bobbi. She doesn't have a lot of energy. She did a little paperwork and played with the beast a little, then spent the rest of the day trying to think of a "real" name for the beast. The beast's AKC papers need to be filled out. I suggested Beelzebub Amusing Joke (30 character limit), but Bobbi was not amused. If you have ideas please let Bobbi know. How about Bobbi's Aussie Trick? Hey Mikey, I think she likes it!
August 3, 2008, 10am - Wow- yesterday was a busy day. Up at 6am, at the Trout Derby by 7am and
cleaning trout by 8am for me. Between 8am and 12pm I cleaned 267 trout- my new record. Then it was home to try to wash the fish smell off of my hands (I have so far failed!) and then Bobbi and I went to Greenville to fix computers and the network at
Stephens recording studio Malibu Mobile Productions.
A whirlwind of OS patches, wireless network configuration, memory upgraded, software installation and WEP wireless security configuration and we left after 9pm and were home a little after midnight. Bobbi was awake for a lot of it though resting for most of it. Today I had the luxury of sleeping in..... till 6am. Thank you Rikki. August 1, 2008, 7pm - So, the coward who killed our friend Bob has killed himself. Sorry for what may appear to be a lack of sympathy. Bob Stevens was the first person known to die from the 2001 anthrax attacks. He was a nice guy who loved his family, fishing and soccer. Well, maybe the man was innocent, and maybe now we'll never be sure. Maureen is still missing a husband and his kids are missing their dad, and I have always known how tenuous this life can be. We miss you Bob.
July 31, 5:00am - That darned dog. Second time since midnight.
Page updated September 9, 2008. For more information or to send us photos
please contact the webmaster
We've been here two nights and three days. Bobbi is getting a rotation of IV antibiotics, wide spectrum antibiotics and steroids.
It seems to be working. Her face is still paralyzed, but not as much. They may even let us go home sooner than we though and continue
treatment on an out-patient basis. This hospital as a new policy of care using "Hospitalists" (Google it). That means that, like
Dr. Kildare (young people are going "doctor who???"), the hospital doc owns Bobbi's care and controls it until she's discharged. This can be a good thing.... still, the doctors
more aware of Bobbi's history can't see her unless invited. I had to invite Bobbi's oncologist to visit her "socially", and even that we had to keep
under the radar. Maybe we didn't- you know how I blow things out of proportion ;-)
It wasn't just me- we've had a lot of help. Everyone at my office has been incredibly supportive during this crisis, especially Lloyd and Cherie.
Dick and Becky Olson continue to give good advice and are always there when we need a medical ear (or any kind of ear for that matter).
David and Donna took care of our little doggie when we abandoned her. Greg and Susan then went and got her and took her home with them last night (the doggie that is). Bobbi's mom has come and helped me watch over "our girl". David and/or Sam (I can't get a straight answer who) even mowed the lawn
and weed-eated (weed-ate?) for us. Even Terry the cell phone guy kept me communication when texting was all I had.
Anyway, thanks to everybody we may go home as early as this afternoon. We hope. Thank you all. For the first time in five months Bobbi is pain free.
In the meantime now that we have a way to I will keep the web page updated. I still have photos from Seabrook Island... that seems like so long ago.
We still have this "cancer thang" to deal with- "take here to Duke". "Take her to Houston". "Take her to Johns Hopkins". How come nobody ever says
"Take her to Tahiti"????
By The Way- I typed this mess and posted it, and now I'm going thru looking for typos. I have to look at the keyboard to type, so I make a mess.
Anyway, hit refresh every now and then and things may keep getting better!
What we've been doing is the management (or mismanagement) of Bobbi's health care..... and my degree is in marketing
(or would have been if I hadn't dropped out). So, we're getting Bobbi's "real" doctor back involved. We're either going to the ER or we're camping
out in her primary care physician's office until we talk to someone who's only concern is Bobbi's overall wellbeing.
Somehow Dr. Manthorn (a great name for a woman, eh?) has been left out of the picture and I'm getting her back involved. Why didn't it occur to me sooner?
I'll keep you posted (as much as Bobbi will let me).
Last night was the worst as far as ear pain goes. Bobbi practically vibrated all night until around midnight when I dropped off (we were in bed by 9:30pm). This morning I gave her the "earache boilermaker"- Vicodin and Tylenol. That did the trick... the pain has subsided although she has a lot of jaw discomfort. She was sure she had jaw cancer, but I have told her I'm sure it's just swelling from the infection. In spite of all that today has started very well. We are in great spirits! We're looking forward to a long weekend at the beach. Also, I took today off of work and there's something wonderful about not working on a work day. I don't know... it's a kind of Ferris Beuler kind of feeling (even though I have to unload the van, clean the van, load the van, catch the mutt, imprison the mutt in her travel cage, cajole the wife to pack, load the wife, drive for 6 hours.....). What a great day!
Bobbi and Donna went and met with Dr. Thomas to plan radiation of her breasts and surrounding tissue. "We" are pretty anxious about the radiation. As Bobbi recovers from her brain radiation she is becoming more and more aware of how much her brain function has "been altered". Now do we have to look forward to the same effects to the heart and lungs and other important bits? Still- here is is the end of August- practically September and we are still alive and kicking. We are blessed. I have to have a September page ready to go for when we get home next week! That's wonderful! We also remember our brother (extended family concept-wise) who is going in for a prostate biopsy. Our thoughts are with you. I know the phones will ring- don't bother. Them that knows won't tell, and them that tells don't know. When we can we will tell you. In the meantime our sister's breast biopsy was blessedly negative (which is incredibly positive).
Anyway, we'll be gone until late Monday, and there's no Internet access down there. I guess there will be no updates till Tuesday. In the meantime I'll get some photos of Bobbi and Beast. A couple of Vicodins and she's very amenable. ;-)
There- that ought to be enough web text to keep y'all busy a few days. Have a great weekend! If the phone doesn't ring it was me!
1:30pm - OKAY!!! Well heck, I got my wish- Bobbi just called and they cancelled her chemo... I'm not sure why, but the plan is to start radiation right away.
Yes, the drug worked and Bobbi slept through the night (mostly- thanks alot, dog). I love that stuff, and I ain' t even taking it. Today, while I go camping with "the boys" Bobbi's mom will kidnap her and keep an eye on her while I'm gone. So, I have to run (gotta pack the truck!).
4pm - Okay, here's the cure for an earache- Vicodin! Ah well, it seems her eardrum is now perforated (or they just now noticed it) so they gave her a pain killer (and a tasty one at that). People write songs about that stuff, but it's compatible with the other drugs she's on, so at least she/we can sleep now.
I found the cure to the dog waking up every 45 minutes- DRUGS! Bobbi's Vicodin you ask? No, Zen Puppy Peace treats. Two of those and she sleeps till 5am (hey- that's a big improvement!). I might eat a few myself!
So, it's been a rough week. The ear thing is still ongoing. Bobbi does not sleep well because the pain wakes her often. She gets the pains ("it's like I'm being electrocuted inside my head") all the time and nothing much helps. She has another appointment with the EN&T folks tomorrow. At this point I'd be glad to interrupt chemo long enough to cure the ear, but it would be weeks before the chemo wore off enough to actually fight the thing, and then what would the cancer do during the break? I am well and truly impotent to do anything except bring hot pads and offer soothing words.... I'm feeling pretty useless about this.... It's like Dr. Dick said- nobody should find themselves in this situation but here we are. Dick (and Don Henly) were right, the wolf is always at the door.
In the meantime Bobbi is also feeling incredibly guilty about not being able to work with "her" cub scouts. I'm pretty useless here too advising her not to feel guilty about that. I must have zero credibility these days- nothing I say seems to help. She and I are somewhat well trained in working with the little guys, so I'll start helping the cub pack out too. What we need is a bunch of volunteers- our troop (like most troops I suppose) is spread pretty thin. I think the worst thing for Bobbi is feeling guilty about letting the little guys down. What do you say to that that isn't obvious?
Today we're running a little slow, but we're ready now! I'll get some photos for the page. Bobbi loves her new hair!
The hardest part now is keeping Bobbi eating. Making foods she'll enjoy- that's getting tough. Tonight I'll make a nice roast, she likes roast beef. She likes the eggplant and chicken parmesans I made..... maybe shepherds pie. Any ideas?
August 11, 2008, 5:30am - I guess this is the fourth or fifth time up with "the beast", but she's so cute- right? had a nice night at home last night, but her ears kept Bobbi awake. Now it's Monday- back to work. There's a very odd email problem at work and I can't figure it out. On Friday "we" got about 180k emails, but a couple of dozen people say they sent messages and we never got them. If you know what SMTP error State 18 is let me know ;-)
Anyway, we've had a busy week. On a whim we all (Bobbi, David, Donna and myself) loaded up and cruised to Steve's after work on Friday. We karaoke till the wee hours and drove home (got home at 3am). Yesterday Steve, Susan, Sam and Ian came up and we cooked out at Dave and Donna's, but Bobbi felt too whiped out to join us (which made her feel bad which made me feel guilty about going which made.... you get the idea). I did make a wicked eggplant parmesan with all my own garden-grown ingredients (except the cheese)- fresh eggplant and sliced beefsteak tomatoes in lieu of sauce. It was excellent. I also made a gazpacho which might be my best ever- all fresh ingredients. The garden is doing well in spots... but the green peppers stopped blooming (and therefore setting fruit), the pumpkins are suddenly blighted and the lettuce all bolted, but the cukes, tomatoes and eggplant are growing like mad. The okra is finally coming in- also like mad. So is "the beast" for that matter.
Today we might drive over to Knoxville and visit Sam...and get my pressure washer. We have projects that need it, and getting projects done seems to be the only thing that makes Bobbi feel better... except for visiting the kids. This week we have the family memorial service for her dad to work on. It's going to be great to have all the extended family together. We are blessed.
I've been thinking about Bob Stevens and Dr. Ivins. I've gone from being 90% sure he was "the guy" to about 50% sure... maybe even less. It's not like "the feds" would ever frame anybody or even accuse someone falsely knowingly or otherwise... oh wait, fantasy world is over- of course they would- especially this government. Now we're even cheated out of whatever closure we'd have if we knew who mailed the anthrax letters. Way to go, FBI. I'm sorry, Maureen.
Now- the news. Today we meet with Dr. Thomas, the radiation oncologist. Here's the deal. The chemo has reduced the size of the tumors in Bobbi's lymph nodes. I seems to have slightly reduced the breast lesion. The CT Scan was very good- the cancer does not appear to have spread anywhere else. We will probably start a course of radiation focused on her chest and right arm If this is effective then Bobbi's survival chances improve to the point where it may make sense to go ahead with a mastectomy. That bad news is actually good news. As fond as I am of the thing, if it improves her survivability chances the it's outta here!
Bobbi is well. She has chemo sickness- the malaise that follows treatment. Today we will take it easy as I do the chores I promised her. I might even get a little garden time. The pumpkins have a blight of some kind.... dang the perils of organic farming ....which reminds me- my nephews (well, two of them) made a very funny short film of the same name. Watch it HERE. I regret the stole my name- Hughbris Productions.
This has been a very good week for us here. Bobbi had chemo on Wednesday, but it's only lately she's felt the effects. Wednesday and Thursday she was still pretty active. Now she's feeling it, but now as bad as months past. Tonight we're having "cook everything from the garden for supper" supper. I've made calico salad (diced tomatoes and cukes), gazpacho (cold cucumber and tomatoe soup), way fresh green beans, sliced cukes, cherry tomatoes.... I'd make Ratatouille if I had any zuccini (got plenty of eggplant!). Dave's here and we'll have a refreshing feed. We've even thawed some shrimp from Seabrook! Y'all come on over (but hurry!).