Food fall

Story to share... A few days ago I asked Gus if he remembered any funny stories about Danielle. He remembered a story that I told him many years ago. The incident occurred in July of 2001 while visiting New York City... we spent five days walking and photographing Coney Island to Harlem.

Coffee stops were pretty regular and Starbucks seemed to be all that was available. So... Danielle had just purchased some sort of $5 coffee and we were walking around NYU or Cooper Union I can't remember exactly. I do remember the visual of the street - it ran East to West and there was a bicycle with a super heavy chain latched to a lamp post. The bike had no seat or handlebars.

Danielle started to cross the street...J-walking... and somehow snagged her foot on the street and stumbled. The stumble grew into a spin and some kind of a slow jog trying to counter the impending fall to the pavement.

As she fell to the street backwards, butt hitting and rolling her head to the road - while legs flew straight into the air, finally coming to rest flat on her back in the middle of the street.

The coffee drink never lost a drop and remained in her right hand pointing straight to the heavens... saved.

This memory sparked and earlier from 1999 when Dan was pregnant with Gus. It was a rough nine months because she couldn't even stand the smell of boiled rice without throwing up. Every month or so she would have a good day and get to eat what she wanted without worry.

O.K... so we prepared some kick ass meal and plates were full... I was sitting in the living room with plate in lap - as was the custom before children - Danielle walked into the room plate in right hand and drink in the left. She headed for the rocking chair (8 months pregnant).

She couldn't sit to easily so she would back up to the chair and fall backwards. With plate and drink in hand. The chair couldn't take the gravity of the situation and fell completely backwards. It seemed to happen in slow-motion... from across the room I watched helpless as she slowly dropped. Feet flew into the air and I thought for a moment that she would slam her head on the fireplace.

I jumped up and ran to her aid and found an 8th month pregnant woman flat on her back with a full plate of food plus drink un-spilled hovering in the air above her with magic arms.

She could save food like nobody's business.

1990-2010

Sometime between March 3rd, 1990 and August 17, 2010... around 3:30am
Danielle smashed the lock with an old hammer that came from the mountains.

She opened the shed doors and stole it!

It was a necessary crime, kind of like a protest.
I was lucky enough to be an accomplice.

1991

Haven’t posted in a few days… not sure how to keep the blog going. I have Danielle thoughts all day every day and want to tell story after story. I am compelled to keep people interested in her life - she meant so much to so many.

I have many people writing me that they don’t have the words… that they do not exist. I think they do exist. They are hard and confusing… like algebra.

Gus and I could not have made it this far without words, friends and safety.

Our relationship was 50% humor and 50% unexplained phenomenon.

All I can think to do is recall our lives together as it comes.

At the moment I cannot stop thinking about 1991 around 12:30AM down at the Memphis Queen Line River Boats. She showed up around that time to help sell Photos and load up the gear.

We had sold photos to people leaving a late night cruise on the Mississippi river. There were display boards and extension cords to put away. I did the heavy work and Danielle would roll up the power cords.

I was on the dock when she yelled out “ SOME IDIOT PARKED ON THE EXTENSION CORD”… I looked over at her just as she said “NEVERMIND!!!”

It was she that had parked on the cord.

That moment stayed with us for 19 years.

An odd memory

I remembered this story earlier today and wanted to share it.

Back in the late 1990’s Danielle and I were apartment sitting for some friends here in Memphis. While lying in bed one night in someone else’s room we started discussing the TV show “MASH”.

After talking about the characters Winchester and Frank Burns… we got into a friendly argument about which came first and if they ever met one another on screen.

Danielle was adamant that they were on the program at the same time and acted in scenes together. I, on the other hand, was positive that they never met and one replaced the other. I argued that Frank Burns was the original and Winchester replaced him.

The discussion went on for 45 minutes… lying in bed in Mid-town Memphis around 1 in the morning.

Finally I got up and looked it up on the Internet… could not find any answers but did email some web-site that would get back to us the next day.

We received an email the next day that said… Winchester and Frank never met on the show but did talk on the phone in one scene.

I was right about MASH but she was right about everything else.

I have no idea how to extend her words so I’m gonna flop around like a fish out of water. I know Danielle wanted to communicate with all of you during her last nine days or so. August 3rd was her last post and Aug. 7th her last comment. Those last ten days were spent visiting with family and sleeping a lot. We constantly talked with the doctors thinking the meds were causing the fatigue and sleep. Truth was her brain was constantly swelling and creating pressure… we were clueless. Before she and I knew what was happening she could no longer speak or communicate. August 14th was the day communication became very simple and possibly incorrect response at times.

The lesions in the brain just did not respond to the radiation and continued to expand. Despite how the treatment effected the body the brain was not working out.

Danielle remained determined and positive throughout this entire ordeal… to the point that we never had any conversation about… what if ? Sure… we knew this was not going to disappear but had no idea it was so vicious. She never realized what was happening.

In a way it was a blessing… she just fell asleep… but for me it was heartbreaking not to communicate one last time. For twenty years I talked to her about everything… who pissed me off… what I found on the side of the road… daily experiences or adventures… odd conversations… strange hobos or hitch-hikers… artistic collaboration…EVERYTHING.

This summer blurred across time. Doctors offices… treatments, paperwork, crying, dreams of time machines and magic. We left for summer vacation and never returned.

The last 10 days were spent with her mother and Dad, me and the boys when possible. We would trek to the cafeteria and get food she would nibble on. I would lie in the bed with her and try not to move for hours.

Trying not to rant in several directions so bear with me… I was getting pretty frustrated at times but she would still calm me down and teach me to kill with kindness… she became zen.

I miss her so much it does not match a human scale.

Danielle and Jamie

I intend to tell the rest of the story. Soon

I'm gonna attempt to get back to a normal blogging schedule I've missed you guys!

Seems like the past week has been really foggy, time in my brain is moving like a snails pace, but time outside it is flying by. Pretty sure the reason is because of the pain meds. Finally I got to talk to a pain management doctor and nurse last and he;s once again lowered my MScontin (long acting Morphine from 45mg twice a day to 30mg), is keeping me on a dalauidid pump that I can push every 15 minutes, I still have the "break-through" Dalauidid push if needed, and he added a new medicine last night, Neurontin, which is an anti-seizure med, that is also used to control muscle spasms which he believes will help control the muscle area in my back that in intermingling with some nerves back there and causing me pain. It does seem to have worked OK, becuse I woke up at 5 am with pain but not as much. I did ask the nurse about some of the side effects o this new drug, because I didn't have the typical "normal" pain that I normally had, I'm much better, just a little goofy foggy feeling. She said it takes a while to get used to it, but I should have this feeling for about another week or so. Picture eyes rolling back...geeez! Well what's another week right!!

The Radiation Oncologist, Dr. Lee said he's gonna reevaluate the MRI they did of that area and see if hey can also shoot it with radiation beam and that would also help with the pain.

My regular Onclogist has sent my "samples to The little Rock clinic and we have a scheduled appointment on August 13. So I gotta get the hell outta dodge soon and halve some visiting time at HOME with my family, so if you all don't mind sending a little extra push of prayers, love and light my way, that would be wonderful!

Momma and I have been going through her old photos, I’ve posted a lot of them on FaceBook, and now I’m in the the process of adding captions, which has been really funny, because I haven’t heard a lot of the stories, I it’s very interesting to know how the Belgian family was just as hilarious and dysfunctional as every other family!

My BoBonne was a spitfire! SO check them out periodically because it'll take me a little while to add all the captions and I'm also working on a blog and book for the project.

Bon Courage!

great visits and great memories

Yesyerday was a really good day. The doc upped my long acting pain meds, so after they gave the to me a 9pm, and they combined with the pain pump, rally kicked it, I was feeling MUCH better! On the pain scale, probably about a 5, which trust me is very tolerable for me, kind of like a mild headache. I was feeling so good and really present and clear-eyed I decided to blog about the Nurse situation. I’m glad I did it, and now its out there, pretty sure what I’m gonna do with it, but now I’m done with it on the blog…unless it happens again. I need for Bon Courage to be a documenting process for me, but I really want to keep it positive. Hope ya’ll don’t mind!

So around 11ish, I got a surprise visit from our friends Eddie and Gretchen, we had a really great visit and let me tell you all, if you need a patient advocate, or even a great medieval lady-in-waiting and knight and shining armor, look no more, they have been found.

I got lucky when I was in graduate school, because my friend Patricia V. was their Babysitter for their son Richard, the sweetest little guy. Patricia had something to do and she suggested I fill in. Thanks P, because you just don’t know how that changed things for me and Jamie! Jamie and I had been together for 6 years and were already married, but it wasn’t until meeting little Richard that I actually began to contemplate wanting, no needing children. Eddie and Gretchen would always tell these funny stories about their lives as parents, and how life was going while Eddie had been in graduate school, how he and Gretchen were dealing with life as he built his career. Although vastly different careers, everything seemed to be so parallel.

Jamie and I watched Richard together a few times and Jamie was smitten too. But I remember one time where I was gonna take Richard to a petting farm in Millington, but I had a really bad headache, so I asked Gretchen if she though it would be OK if Jamie came to pick him up while I rested a little bit trying to get get rid of the headache. I could tell she was a little hesitant, but she agreed. I remember her telling me later that she’d never sent her baby off with a guy, even if it was Jamie, and she was just being a worried momma. As a momma now, I can totally understand her thoughts! Jamie brought Richard over and he was wearing his Thomas the train engineer cap, and little red sweater. TOO Cute! We all went out to the farm and on the way a then 2-year-old Richard, looked outside at a road construction area, and said Look Jamie, an Excavator. Jamie and I looked at each other and were like…did he just say EXCAVATOR?? I asked him what an excavator was and just looked at me and said, it moves big dirt! But that was Richard, extremely smart, and articulate! We got to the petting zoo and it was a huge success. I need to find out if it is still there, it’d be great to take my boys now!

Probably the funniest memory I have was in early summer of 1998. By that time Eddie and Gretchen had had another sweet baby Jack who was now just over a year old. I had graduated and had sent out about a bazillion applications to find a teaching position, and was in the wait to hear mode. Well it was a Saturday morning and Richard and Jack and I wear playing and the phone rings, I was shocked to hear someone ask to speak to me, and especially discombobulated to hear the voice say that he was a professor at West Texas A&M University calling with a phone interview! Turns out he’d called Jamie’s parents house where we were living, and Jamie’s mom was so excited for me that she passed along the babysitting number! I asked him to hold on a minute and I asked Richard to do me a huge favor and sit in the playroom and read some books to Jack for a few minutes while I spoke to the man on the phone. Richard and Jack kept themselves busy and I got a fifteen minute phone interview, the first of three, and that job became my first “offical” full-time tenure-track teaching job! Just think, had those babies been running around screaming willy-nilly in the background, maybe the turn out would have been very different, or maybe not. But I like to believe that they were my little good luck charms that day!

Just before Eddie and Gretchen left the hospital my friends Kathy and Larry peeked their heads in too. The had driven from Asheville, NC to Memphis to visit a relative and had wanted to check in on me. You see I had made plans to visit them in Ashevile about the time the melanoma reared it’s ugly head, so I was unable go visit them.

I met Kathy in graduate school. I can still remember the first time I met her. I had a graduate class with my professor Wayne Simpkins sealing with the computer and combining photos in Photoshop in a provocative way. Kathy had brought some of her of her mother. they were beautiful. I had been working on combining my old NC family photos together to create little narratives. Right there instant connection, not to mention she very funny and sweet natured! She and Larry worked a lot in mixed too so she took me over to their studio in the sculpture lab. Eventually when I presented my thesis to build a bed installation, the sculptor professor Greely Myatt suggested I use a little area right outside Kathy and Larry’s studio to carve the headboard and footboard. It was a great place, because I had lots of people milling around in the woodshop below; I was surrounded by all the folks that could help me, considering I had NO idea how to build or carve anything.

How I came to make this thesis choice is a “whole nother” blog story in the works.

Back to the world

OK, the past few days have been an amazingly eye-opening, and positively frightening experience. I have been in Baptist Hospital from Sunday(?), I was having the worst radiating pain my from my abdomen to my back and they had initially diagnosed me with pancreatitis. I was having the worst radiating pain my from my abdomen to my back and the initial diagnosis was pancreatitis which is according to everyone I’ve talked to is excruciatingly painful. pancreatitis is apparently hard to diagnose and there were lipase tests that weren’t adding up, so the GI doc and Dr. Tian wanted to make sure that it wasn’t something with the cancer or my now lovely steroid induced diabetes which also keeps going up, no matter what type of diet I get here at the hospital.

My daytime nurse hospital experience was no problem. The nurses have for the most part been very positive and supportive. But the night nurse situation is vastly different. The nurse that has caused the main issue’s name is Daphne. From the get go Daphne, I saw that she seemed to have a chip on her shoulder, I ask questions about my pain meds because I want to keep things straight in my mind, but she seemed very irritated that I would even question or double-check her.

I just dealt with it as best I could, trying to remain positive, I was still on the higher dose of MScontin which is a long acting morphine, so my pain was tolerable. And then she told me she had the next night had a night off, and the nurse that evening was Delaine and she was really great, no problem. She answered all my questions and told me whatever she could, and if she didn’t know she found out. The next early morning, Dr. Tian came in with Delaine talked about his plan to ween me of the Dilaudid IV because he wanted me to be able to go home soon, so he was going to switch my meds to oral, and he would get me some Dilaudid pills, or sucker thingies. We were hoping I wouldn’t. but he did say that if the pain got to bad that I needed to make sure to call the Charge nurse or the doc on call at the west clinic and they would get in touch with Dr. Tian and we’d adjust pain meds as I needed them. I was in pain at that point but still very positive.

So that night when I see that Daphne, was back, I tried to make chit chat with her and asked if she’d enjoyed her day off and she was all smiles and said, yes, she got to sleep and she enjoyed it it so much. So since this was the first smile I had seen since meeting her, I had high hopes. Well, I found out quickly I was mislead. As I had dinner that evening with momma, I noticed that my back pain was increasing significantly. so I asked for my regular pain meds, plus I let her know that I was definitely gonna take advantage of any of the breakthrough pain meds I had available to me.

So momma left, and I tried to settle in for the night, got my 9pm meds which included only 1-15 mg (?) MScontin, but I had been being give 3-15mg MScontins at for a total of 45 mgs. I had been taking that for 2 weeks , even at home because that is what Dr. Tian/Dr. Reed had put me on and while I was at Methodist Central. I noticed this pill discrepancy and asked her about it and she said that the doctor had changed my meds and that he what he changed it too, so she couldn’t make any changes. Well in the mean time I noticed that I had ALL the tell tale symptoms of a urinary track/bladder infection, back pain, cloudy urine…blah..blah...blah, so I told her to please let the doctor know, she turned back to me as she reached to door and said, “Well you’ll have to let the doctor know that when he does rounds in the morning, because I can’t diagnose you. Well, I just asked the as my nurse to do her job and relay the message, not diagnose me. So time moves on and the pain was getting really bad. I begged Daphne to please let me speak to a charge nurse if she didn’t feel comfortable calling the doctor on my behalf.
She was not happy I asked about the charge nurse, but she said she’d check. Daphne came back in and told me that earlier in the week she had given me a fast acting morphine, 1-15mg pill, not the same as MScontin which is long-acting, along with a dose of the IV Dilaudid, and Delaine had noticed that and told Daphne that was very dangerous because both those meds together, along with everything else I’m taking, could drop my heart rate to low, and I believe her words were “could do a patient in if their vitals weren’t watched carefully. Well all this was news to me, had I known, I would have complained even earlier! Still, though my pain was up and there was no charge nurse, or change of med orders, and I didn’t know what to do, so I remembered Dr. Tian saying t call the oncologist on call at West clinic. So at 1am I called them, and left a message saying I was over at Baptist east and not getting the help I needed, told them about the urinary symptoms, and lack of pain meds. I was told the Oncologist on call would call me back. Within 5 minutes, Daphne came into my room and asked did I call the West clinic, I told her yes, because Dr. Tian said it was my right as a patient to do that. Apparently, the Oncologist on call was Dr. Cash, whom I met with many times during my stay at Methodist central. She is very caring and compassionate, and she took the time to ask me questions and let me ask her questions when she’d make rounds, so I felt really comfortable with her. Apparently she remembered me. I got my extra pain meds and those got me over until the morning when Dr. Tian made his rounds.

He had heard from Dr. Cash about the medicine issue, and the nurses attitude and he was not pleased at all he said, he would make sure that I would not be put would Daphne again, and told me that I had indeed done the right thing in calling West clinic, although that wasn’t my job, it would have been hers. SO at least I felt a little better about “going over her head”.

So they next morning, Dr. Tian came in during his rounds and the Charge nurse came into the room after she had talked with him to let me know that this type of care was unacceptable, and changes were going to be made. I felt comfortable with this, and told them both that I honestly wasn’t considering a formal complaint at that time.

So the next night I was waiting for my pain meds which I should have gotten at 10pm, the nurse, Lori (I believe that was her first name, but it’ll be in my complaint) said she was coming, but had a couple ahead of me. I said that was fine, but I just didn’t want to get to far behind the pain, so as soon as she could give them to me, that would be great. She left to go get them. I was so weak from the pain that I called the Nurses helper (PCA) to help me to the restroom. She did and she said just pull the call button when you’re done, and I’ll be right back to help you back to bed. OK. I pulled the call button and sat there…for 10 minutes. no nurse or PCA. So I thought, this is ridiculous, I can’t stay in the toilet all night, so I grabbed to rails and pulled myself up, only to loose my balance and luckily catch myself before I fell between the toilet ant bathtub. Well it shocked me so to lose my balance and I pulled the string again, still no one came, it had been at lest 20 minutes since the PCA had walked me to the toilet. I gathered all my strength and pulled myself up, and very carefully grabbed the wall rails and walked myself back to my bed. Also still no nurse, no meds. Pushed the call light on the bed and another PCA came to the door, a guy, I asked him to get my nurse for my pain meds, he said he would tell her to come in. In the hospital they always ask you to rate your pain level, for the last few days I’d been able to say that I was at an 8-10 level, which is BAD, but sitting there in that bed, crying, I can honestly say I was of the chart, I’d say got me at least a 13, and what makes it so bad was that it was so unnecessary, and the extra pain was probably because of frustration.

The nurse finally came in gave me 1-15 MScontin and 1 unit of IV Dilaudid. But the fact that I had to wait for 2 hours from the time I was supposed to receive it is what really bothered me. I basically had to tell this new night nurse that if I needed more meds I was going to call the charge Nurse and West Clinic on my own if she wasn’t willing, because I new my pain level better than she did and that I had called them myself the night before. I somehow think the nurses new what had happened the night before, and perhaps now I have a “reputation” up here as a troublemaker but I guess I’ve ot to be OK with that. I shortly received an additional IV Dilaudid.

That got me thru until morning, when Dr. Tian came back for rounds, and again was not happy with the news of the night before. Again the charge nurse came in as well, and was very apologetic. This time, I told them I was considering a formal complaint, and I believe I need to file one. Maybe it won’t help me but it might help another patient.

Tonight I have had a wonderful night nurse, that has been so nice, and my mom is sleeping up here with me. Gus was worried to be home without one of us, and right now he’s my priority, so my mom and I decided that she would spend nights up here with me and Jamie will stayi at home with Gus. He’ll be coming up here first thing in the am. Momma’s snoozing like a baby. That makes me happy.

On yet another note, Dr. Tian requested an MRI on my lower back pain, and there is a tumor in my muscle to the left of my spine that is where they believe my pain is coming from, it’s not in my spine, but next so he’s gonna see about getting radiation to it, and he said they usually respond well. so we’ll check on that one.

We are also calling a clinic in Little Rock to get into the Ipilimumab (also known as MDX-010 or MDX-101) melanoma trials. I believe they have this trial in Little Rock, Knoxville, and MD Andersen in Houston. I’m happy to be able to focus on this new treatment, and I know that Dr. Tian is as well. We initially chose Little Rock because it is the closest to Memphis, but I keep hearing all these wonderful things about MD Andersen, and I’m thinking that I might have even more options there. I’m gonna check on it. Well now you know why I slipped on the blog for a few days, and I pray it doesn’t happen again, and all has been finally worked out with my pain meds. I’m thinking so because when I woke up at 1:30 am, this morning I can honestly say my pain level is at a 6 with the proper pain meds and this e PCA pump. And I’ve just spent 2 hours writing this all down, without being blurry-eyed. Hopefully my spell-grammar check is working!

Bon Courage!

Let's keep are fingers crossed, I might get to go home tomorrow!

So last night, Dr. Tian took me off clear liquids and Put me on a soft diet, which actually translates up here tto regular food. So I got to eat pretty good, but I watched myself, cause I want outta here. He also ordered a blood transfusion, 2 bags, that "they" said would start at 9:30, well it started at 12:30am and I didn't realize it but at this hospital they put a blood pressure cuff on and don't take it off until they are thru...4.5 hours later. Taking the pressure very 10 minutes for the first 45 minutes, then every 20-30 minutes after that, beyond that I was so so delirious I just didn't care! So what I'm trying to say is that I got NO sleep last night. Makes for a sleepy girl.

However on the up side, blood transfusions just happen to give you energy, so at 8am I woke up like a piglet in a pen when When the food tray came up. I ate breakfast, it was good.

Jamie came up and we worked on paperwork for insurance and doctor stuff and house stuff, and busy work, but I was good to go until 2:00. Jamie went to run errands And pick up some some curry chicken and fresh fruit for me and I took a nap. Dr.Tian came back this afternoon And told me that he looked at the CT Scans and saw that after two rounds of chemotherapy the lesions in my abdomen are not growing but also not shrinking, so he want's me to enroll in an alternative therapy. Back in early June, there was all this info on epilumilab alternative therapy, that is supposed to be working good things for melanoma. The closest place to get it is Little Rock. So that is where we are going. Dr. Tian has contacted them about me an is gathering my info to send to them. We're gonna call tomorrow to set up the consult appointment, to get the ball rolling again!

As far as pain goes I'm doing ok, some in my back, but it's about time for my night meds and ambien so hopefully that will help.
So I am gonna try to sleep.

Bon Courage!

Day three of third hospital stay....but I'm ready to go home

Came in with Pancreatitis, which had got to be the worst pain I have ever felt, When the doc asked me to describe it the only way I could explain it was "it hurts so bad it almost doesn't hurt, which sound crazy, but I guess it hurts so much it's off "the chart".

The GI doc convinced me to take delaudid, which I'm glad about because really does help tremendously. He also scheduled me with an ultrasound to double check the pancreas, but he said there was nothing significant, no blockages, so he's thinking that it's cancer related. So basically I'm just gonna have to watch what I eat ant take my insulin.

Dr. Tian, compared my 2 CTscans and said that there is no significant change really in either direction, so he feels it's time to check into the next round of defense. I might have to go to a different city, he mentioned, Knoxville, Little Rock, and MD-Anderson in Houston. He's gonna look at things today, because he'd like to start a reliable systemic therapy as we as an alternative therapy.

Once again a bump in the road, I'm not looking forward to traveling, but I'll figure it out I suppose.

I had hoped to get some good rest last night, because I had to be on the phone doing bills, and medical stuff, as well as visiting with 3 doctors, and a entire host of student nurses. But no such luck.

The highlights of the day, we're seeing Jamie, Gus, and Momma. Family is always a great thing!

After Jamie left they decided that I needed to get a blood transfusion. asked them that they be ninja-stealthy. Obviously they don't have boy children, because, even with my eye cover, and my ear plugs, it was like a barbie party in this room!

So with that said, I'm gonna rest. I'll ad to the post later.

Just another bump in the road.

Bon Courage!

July 25...Back in the hospital..with Pancreatitis

Well it's 12;12 am hre Memphis time, and I'm sitting in my room, waiting on my pain meds so I can just go to sleep. The doc in the ER prescribed dilaudid, which I know is suppose to work but it scares me a bit, because right after Hop was born, I fell down the stairs at the house and hit my head, and in Val-D they gave me morphine, and it wasn't cutting the pain so the ER doc gave me dilaudid to help. Well I don't know if was the fact that I'd knocked myself loopy hitting my head, or maybe it was all the preggo hormones, but it seemed that every time I shut my eyes I saw every creepy crawly monster I'd ever imagined. So you can see why I'm a bit weary. But i've got a bit of a low-grade fever and I'm hurting so maybe it will be fine, and I can use some of these littler monsters to give me some creative ideas! Well thats my plan on it!

I knew this morning when I wasn't feeling real good, that I should probably pack some things....just in case they decided to keep me over night. the last time, it seemed like Jamie was constantly bring my stuff evrey day, and between us both we'd forget things, so Momma and packed a small suitcase, my med list, and evn a really great snack back, which I'm not allowed to use, because noew I'm on a liquid diet. Dangit! I did forget to pack saltines, in that bag, and I swear that pisses me off, because I am SOOO Jonesin' for a saltine. If I had access to one right now..I...WOULD...EAT ....IT..RIGHT ....NOW and not even care that I was a rule breaker! But don't sweat, I don't have one, so I can't even break the rules if I wanted too!

I did have a funny/surreal kinda moment just a while ago with my nurse. I'm in my "official room" on the Oncology floor and she was going over the paperwork asking me the routine questions, and she looked at me with a straight face, and my bald head and said, "so you've never been diagnosed with any type of cancer?" It took me a second to realize what she just asked! I then laughed out loud, it just came out, giggling. Well um yeah, Melanoma...but maybe just kinda sorta melanoma.

Honestly, I do sometimes wonder where they find these folks!!

Well it's now 12:30 Memphis time, still no pain meds, may just have to try to sleep, and pray she doesn't forget I'm in here!!

Ohh..she just came in....but had to go back for the meds...and apparently she forgot to plug in my IV pump. Glad I had to pee or I might not have noticed! OK enough negative sarcasm on my part..folks can have a bad day right!

OK another good thing, the doc in the ER switched the dilaudid back to morphine. HooRAY, no monsters to deal with! And my PCA (nurse's Assistant) just came in and she seems to have it together, I'm tellin ya..it's the little things!

Tomorrow Will be a much better day...can we say it together...a much better day!

Bon Courage!

July 24, 2010 Not a bad day, but I'm starting to understand more of the Chemo Brain analogy.

Today Moonie and I woke up the birds outside around 5:30am. We sat outside for a bit, again it was pleasantly cool outside.

Came back to bed and slept more, got up for breakfast at 7:30, went back to bed, and actually really slept until 11am. Gus woke me up because I told him we'd go to Target for him and Hop a little lego present. SO I got up, although I felt like I could have slept more, but I've been reading that although I do need to sleep, I also should try and make myself get up for a while too, to get my energy going. So we the boys , momma and I went to target. Gus and Hop picked out the loot, keeping it on the cheap, which made me proud, because, like most 11 year olds, the $70 dollar one, seemed much more interesting than the $20 one. Bout that time, Jamie's cousin John, his wife Francis, and their 4 boys arrived at the house, so I asked momma to take the boys back home and just come back to pick me up so she and I could have lunch. She did. we went to Olive garden for soup and salad. It was really so nice to spend the time with her just chatting.

That Target-lunch experience took about 2 hours, and I was pretty wiped out. Jamie had gone to the incredible pizza company with the the other Harmon's and Gus, so they were having a blast, and Hop and Jeri were taking a nap, so I decided to do the same. I think I laid down at 2:30 and Jamie came in and woke me up at 6pm. LONG NAP!

Got up, visited with John and Francis and the're sweet new long hair daschound puppie Jasmine, she is the cutest thing! Don't get me wrong, I'm in total love with my moonie, but she's a big dog, wishes she's a lap dog, but she's not. Jamsine is so tiny, a perfect lap cuddle size!

So Gus's 2 older cousins are staying the night, and depending on how I feel in the am I might go with them to the campground where they are staying and go float in the pool for a little while. I dream about floating in water so I hope I'm up to it.

So maybe you can understand about this chemo brain thing, I know there was a July 24, and I know I did things today, but it just all seems to run together, and fly by. It's like someone say, "Where'd the day go?" Well my thoughts exactly.

Also my phone went dead today, and I didn't have the energy to find the phone cord, not that I had any energy to talk to anyone for than a minute or 2 at a time. I't crazy how just talking, wether on the phone, or in person zaps me so quickly. So if you need to ask, you might wanna call Jamie instead. Believe me, it's not that I don't want to, it's that mentally and physically, I can't for long!

Well I'm gonna, rest for now, keep your fingers crossed I can make it to float in the pool tomorrow. It would be nice, even if that is the one and only thing I do tomorrow!

Bon Courage!

Wow..crazy last post....

Well I just realized that I don't think I posted my last "new blog" on facebook, and when I went to check it out, I was reading it and it was CrAZy!! No spell check, no grammar check, obviously chemo stupor induced. Sorry.

So let me see if I can recap...

On Wednesday, got round 2. Totally over did it, spent 7 hours at the West, clinic. Will never do that again.ever. Next time I'm gonna schedule My Chemo in Southaven, it's like 5 minutes from the house, much easier. I will just schedule Dr. Appointments at the West clinic, because I have just obviously learned my limits here.

Thursday, I pretty much slept all day, if fact it is strange to me how the days all run together. I do remember checking my blood sugar and I suppose since I was not eating much, I didin't have to take insulin, which is good. Jamie said a home care nurse called and will be coming by later to day to make sure I've got everything I need,

I do remember something kinda funny from Wednesday night. I stupidly decided that I deserved a jacuzzi bath after that day from hell, so I had a nice long...not too hot soak, but when I asked Jamie to help me up, I had ZERO strength to help him lift me out. It was pretty funny, and we were both laughing about it, because we knew we'd figure it out, but it is so amazing how your strength will hide from you when you need it most, not to mention the bath tub is ridiculously deep so he's trying to lift some dead weight like 2 feet straight up. We finally figured it out! Jamie immediately went to Facebook, posted for a walker, and a hospital bed roll-a-away table. Initially, I didn't like that idea, but he's right, I gotta make things as easy as I can right now, so I can still be happy and do for myself! SO bring on anything that will help!!!

Our friends Carrie and Jon are loaning us a wheelchair, Uncle David's loaning us a walker, and Sean Jacobson's loaning us a hospital tray. Amazing how fiend's and family come thru! Thank y'all so much!!

I do have a question for those who have to test their blood sugar. The hospital sent me home with a Accu-Check tester, but the little thing that you load up with the needle to prick your finger, sucks, and I can't get the dang thing to load properly..any suggestions on a different brand? I've had to resort to just poking my finger with the needle, and I can see that is gonna wear out my fingers if I do it too much.

Well I can tell from my ability to type slightly more coherently, that maybe if I take it easy today, I might be getting outta the Chemo-stupor. Let's hope so. I'f I have 2 or 3 days of really bad yuck I can handle that.

I'll let y'all know how he day unfolds later! I'm thinking it's almost time for breakfast!

Bon Courage

Day 2 home, major meltdown

Well after sleeping 5 hours, and then eating dinner, I went back to bed. Took an extra pain med. Its strange because although I'n completely thrilled not to be in the hospital, I am a little scared not to be in the hospital, because they :sprta: have a handle on what mess yo take when and where and what time. They don't leave a lot of wiggle room for error. When you have to come home and figure out how to doll out 20 different pills at 4 times a day. It's very stressful to have to try and figure it all out and and 3 other people trying tof it all out and that on top of all ot that trying to figure out have to take blood sugar and when n when to give yourself insulin shots. I feel like i'm bitching hear, but I'm really just overwhelmed. I know I'll get it all worked out eventually. Stuff kninda feel like hacking up a hair ball at this point!


Goo think about insulin level this morning, 1y was 143 o I didn't have to have a shot. Good thing.

I did take a break-thru med, so I'm starting to see blurry, so I think Ill tank a blg break, until later. I'llj let you know how the rest of the day goe. Love y'all!

Bon Courage!

crazy day

Well I slept OK, and we were out the door by 8:30am. Got to the clinic by 9am, was met with wonderful old man singing 1940's war tunes, beautifully, Jamie never was able to get his name, but I'm hoping we'll run into him again soon, Waited for the Doctor until around 10:30am. We spoke with a woman waiting to see her doctor and she has advanced breast cancer, and she kinda had a pretty fatalistic view of it, which I fond oddly disturbing, especially since her husband was sitting right next to her. She also said she has a 27 year old daughter that was also sick with a degenerative brain disease, that had brought her from a PHD candidate to wearing diapers in a couple of years, and they have no idea what caused it. I guess that miht take the wind out of ones sails, but ya' know me, I like the positive sides of things better.

Thankfully, we ran into our friend Charlie Evano's parents at the West clinic. He has Esophageal (?) cancer, but is a couple of years out and doing great, now that's what I want to hear! It was so nice to see them and reconnect!!

Jamie got me a subway sandwich it was really good.

Right before my chemo finished, an older lady with breast cancer came in and got the "Red Devil chemo, and apparently the nurse got some in the wrong place under the skin, I could tell she was in severe pain. Her daughter didn't say anything to the nurse, but I would have taken an easy bet that see'd a decked that nurse had she gotten the chance. I jut hated to see that lady in so much pain.

I really wanted to go by Fresh Market to get some good food to have around the house so we did, but I'm thinking it pushed me over the to. 7 hours at the clininc is WAY too much. NOT doing that again!!

Momma made it up, and other than really being exhausted and having to remember, that I was just infused with a pile of corrosive poison, maybe today wasn't really as bad as it seemed. I'll let you know, tomorrow, I'm too tired to write

Bon Cuurage!

Kinda feels like I lost a day today...

Yesterday, the doctor upped my long acting morphine from 30 mg, twice a day, to 60 mg, twice a day. I didn't even put 2 and 2 together until this afternoon, but I seriously slept most of the day today. But it dawned on me that maybe that was too big a jump for the pain meds that stay in my system. So when Doctor Reed came in I asked him nicely to please lower the 60 to at most 40-45, and if I need extra pain meds I'll just take a break thru med, like hydrocodone or some other thing like that. I've got to much worker-bee stuff to do, plus I want to finish up my drawings so I'm not needing to be drugged up so much. He agreed, so when the nurse brings my pain meds we'll see what he decided.

I was told this morning that "they" (?) wanted to do a biopsy on my pancreas in the morning, but thankfully Dr. Reed said that because I was about to have another round of chemo, there was no need to do a biopsy, because we know that there are spots all over my body there was no real reason to add insult to injury by cutting on me, so he cancelled it. Good, one less thing for me.

This morning Jamie took Gus to the Southaven middle school, and both of them felt like the school was to huge, and that he would just get lost in the shuffle, so that was kind of a downer, but luckily our wonderful friend Wendy kept Gus at her house today and Gus and her boys, Philip and James worked on a WONDERFUL origami healing ball for me (SEE PIC AT TOP) to keep up in the hospital room. It is so beautiful, I'm tellin' ya it is seriously the little things that make a difference, especially in a hospital situation, but, this goes beyond, that especially because it was made by some serious special young men!

This afternoon, Wendy, took Jamie and Gus down to the Maria Montessori school to get a look at it. We have always thought that MMS would be a good fit for Gus, because of the size and learning style, but also Gus is good friends with Philip and James and they attend it too. It's always easier to transition when you have a connection. If he can get a spot, I'm gonna figure out how to make it work, somehow. But a huge thank you to Wendy for helping us get the ball rolling!

Since they we're downtown anyway, Jamie had me order dinner from Mrs. Cordliea's on Mud Island. I ordered Curry Chicken soup (OMG it was so GOOD), grilled salmon, fresh sauteed green beans, and real homemade gourmet Mac and Cheese, and fruit and a croissant for dessert. HEAVEN I'm telling you! I'm thinking, I'll be taking more lunch and dinner's from there if they don't spring me soon! And, I had Jamie bring me some extra real butter for my croissant, and the nurses just agreed to put it in the fridge so I can have real butter and salt with my grits in the morning. According to my friend Julius, grits without real butter, is sacrilege, so while I'm quite sure the grits are not the cream of the crop, at least I'll get o have REAL butter with them! Again, y'all it's the little things!

I'm happy I'm still awake enough to write all this, so maybe...fingers crossed..tomorrow will be better!

Bon Courage!

Today was a rough one...

I was on such a high from spending time with Jamie, that maybe I just emotionally over-did it, or I just needed more pain meds, Either way I woke up this morning, feeling CRAPPY, my legs huts so bad, more in my upper thighs. I slept most of the day, so there was little or no creative juices flowing like I had hoped. Breakfast and Lunch, were OK, but kind of a blur. I ended up getting an ultrasound of my legs to rule out blood clots. none, which is good. One less thing. Dr. Cash, sweet woman, told me she was gonna up my long acting morphine, to control pain, and because the decadron steroid has giving me the "sugar" for sure, so tomorrow the are gonna show me how to give myself insulin shots at home. And the want to wean me off the IV pain meds so I that will also help me get home. She really wants me outta here by Wednesday morning, to keep my set appointment with my original oncologist, that ironically I haven't seen in 3 weeks. Does't that sound strange. ANyway, I'm suppose to meet with him at 9am and then get my next round of chemo at 11am that day. SO I've now been in here 8 days, and frankly, I'm getting sick of being sick, especially in this hospital. Dr. Cash, did tell me to check to make sure my insurance would pay to have me at Baptist East, which is right by the West Clinic. That way if I had to go to the hospital, I would be ale to see Dr.Tian, because that's where he does rounds. SO tomorrow, I'm hoping to still feel better and resume "worker-bee" mode, and get some offical work and medical stuff under way.

Gonna try to do everything they want, so I can get the heck back to the house and see my family in person. I truly believe home is the best place to be!

Jamie is gonna take Gusto by the middle-school tomorrow to check it out, and maybe get him enrolled in band. I really want him to have some normalcy, so please keep him in your thoughts, I know how hard all this is for him. After all he's only 11 and my best friend. Being away from him him so much is probably the hardest part of my day. I can talk to Jamie on the phone, or text, and Hopper is so little and thankfully oblivious to all this. I know he misses me being there, but luckily, baby mode kicks in, and he he happily lives up to his "Hopper" name! But it's much harder with Gus. I want to spend time with him, so we can talk and I really want o know what he's thinking and feeling, bu I don't want him t be scared. I'm not scared, i'm sick, which sucks out loud, but I know I'm gonna be fine, eventually. But how do you explain that to an 11 year old, who sees his momma in a hospital bed for 8 days, loosing her hair and having to take all this medicine. That is the hardest part.

Anybody out there have any advice on that subject? I am going to check tomorrow with the West clinic, I'm thinking they have someone there to help me explain things to Gus and myself. Lets hope so, but I feel sure they do.

In the mean time, I also want you all yo know how much I enjoy reading your comments on this this blog and on face book, and email. I may not answer ever post or inquiry, but I appreciate each one!

Bon Courage!

Well this night was so great...seriously!

Tonight, Jamie and I get to have a 3 hours of quality time together. He brought me veggies from Soul Fish cafe and for dessert, their caramel pecan pie! Man, was that stuff good. Due to my elevated "steroid induced diabetes" I limited myself o about a half of it, surprisingly I actually gave the last half to Jamie, he liked it but he said it was to rich for him....really, what is wrong with that boy! But I'm working on switching to the fork in the road, that's gonna make me healthier, not sicker, so I'm proud of my own self!

Jamie and I bonded over some high resolution images, of us and the kids, I'worked today on a new pic of hop, and tomorrow I'm working on one of Gus, I know, I know, I've not drawn many of Hop, but I'm compelled, to one of each at this point!

Jamie brought me new fingernail polish. So right after he left, I started painting one hand, which looked pretty good, but then my new nurse Paul T. came in with an IV of morphine, and a butt load of pills, which to effect amazingly quick! I'm thinking the left hand is way prettier than the right hand. It's not so easy to paint neatly while cross-eyed on Morphine. But I'm willing to take bets that I get pretty good at it! My brain stays pretty clear, and since this blog and face book have a great spell checking programs, it's easy for me to write but painting is a little different.

And to top off the evening, Sanford and son, camping episode is on!

Jamie also said that Butch took Gus over to the old house and he got to play with the "old summer" neighborhood crew and had a blast. I hope somehow we can make that happen again soon, it kind of puts a little normalcy back in his little world. I hope he'll get to come up in the am with his dad for another visit with me. I sure do love my boys, and my family, and my friends...


sweet dreams everyone..


Bon Courage

Well it's only 1pm, but I'm feelig pretty good right now!

I woke up this morning, and frankly, it was a bit of a blur. I'm mean I really do believe I woke up, I even made myself walk to the vending machine for some peanut butter crackers, and some exercise. Afterwards I got back in bed, got my meds and went to sleep. So just a minute ago, I woke up after having this very bizarre, dream about Jesicca SImpson, of all people, she was hurt or something, but I'm not super clear on how, or why, ...Jessica Simpson..seriously...I know my brain is getting screwy when she starts sneaking in!

Anyway, al of a sudden, I heard a huge siren, like an ambulance or fire truck horn, and I woke up in a shot! Just had to sit up, and TaDa, lunch had been delivered! Broiled catfish, spanish rice, and carrots, and 2 count them, 2 vanilla puddings! I love my cool food guy, he's always hooking me up with extra dessert!

Well I ate everything but the carrots, and amazingly I feel pretty good. My energy seems to be coming around, even if it is in these short sharp little bolts! I can totally take that. I might actually work on some Hopper drawings today! Wow you guys, I don't wanna jinx it but, Im really happy to be feeling like this, really.

Like my friend Laura helper-Ferris said to me yesterday, sending love and light, well, I can feel every bit of the love and light you guys are sending!! Love y'all so much!!!


I'll probably add to this post a little later!

Bon Courage!

Whoa sucky day....

Well today I did get the transfusions, 2 baggies, don't feel any different yet, but they say it should get better. The doc just came in and said that since I'm not as "regular" as a normal person, I might have blockage i my abdomen, yeah...(sarcasm) I've been saying that a few days now..they're not listening to me I think. I've pretty much slept all day, Will probably be sleeping agin shortly. On a great note Jamie, and Gus came to visit me for a few minutes this evening, although it was a very short visit because I was so tired, it really did perk me uo mentally. I do so love my boys! I can tell how hard this is on both Jamie and Gus that's probably the worst part of all of this, watching them have to deal with it too! So if y'all can send some extra love and prayers to Jamie and Gus, I'd really apreciate it. I'm actually going through the easier part, they've got the hard job! Visitors will be limited because of my extreme fatigue, so If you don't mind just try to Facebook or email me, and I'll get back as soon as I can. Love y'all!

So until I know more, I hope everyone has a good night,
Bon Courage!

D

Sorry everyone but I'm gonna limit my visitors to only immediate family today.

Do't know how I'll be feeling today, with the transfusion, and goodness know what else they'll have to do for me, o I'm thinking visitors should wait a bit. Last night was really hard and very painful. I'l try to post more later.


bon courage!

added some more to this mornings post..

Just got back to the room from the GI test and had a very nice visit with my personal angel Ms. Sarah Blackburn, who brought me tons of magazines and a really wonderful cancer survivor art book. I truly love you Sarah, TONS!

The test this morning was so strange, The took me down there, sprayed some nasty lidocaine stuff in my throat, gave me some versed and demerol and oxygen. I vaguely remember having to swallow this blocky thing, then it was all over, and now I'm in my room. Unfortunately I am very hungry, o I asked the nurse to bring me some food, but now it turns out they are going to run another test at 1 so I still can't eat yet, so I asked for all the rest of my meds, pain and otherwise, and I have decided to just try to sleep until this afternoon. So hopefully that's what I'll be able to do, sleep, next best thing to eating I guess. I'll let y'all know how it all went a little later this evening. Again, Im hopeful to get sprung from this joint today, one can continue to hope, but since the next test is around 1pm and the docs and not super punctual around here, we'll see. Keep your fingers crossed!

On a Valdosta note, Jamie said the Red-Neck Budget Dog the Bounty Hunter crew, dropped the ball on his rental truck and car dolly, but us Usual Al "the great" Harris helped Jamie find a 28 foot Penske truck and U-hual car dolly to hook to it, and it was cheaper than the budget set up! THANK YOU AL! LOve Love Love YOU for helping out my Jamie!


Just got back from the lower GI test, I call it the "egg" test. I didn't know exactly what to expect because no body else could tell meeither. So I went down there starving and expecting the worst, but happily, I found out they were gonna scramble me some eggs, gave me some salt and pepper and some ice cold water. All I had to do was eat it, then I got to lay on a table under x-ray machine and they apparently watch the "eggs" pass through me. Thankfully..not ALL the way, but you get the picture.

My nurse saw them wheeling me around the corner, and she had the food folks up here bring me a sandwich pronto. Turkey on white bread, not bad but actually the eggs were way better!!

Aunt Sheri is bringing me some soup, salad, and breadsticks from Olive Garden, so although I'm very tired, I'm am looking forward to some yummy stuff.

I also just found out that the screw up wit the Lovenox was what it was, I haven't had it, don't really understand why the nurses and docs would think so, but I guess at least I'm on the same page with my "Chart" now. I've also requested a complete chart copy and copies of all my CTscans and MRIscans.

The Oncologist that came by this afternoon, said that my red blood cell count was at 26, and they like to "infuse" when the count gets to 25, so that might be the next experience for me. Don't particularly like the idea, but again it is what it is and she said, they like to have the RBC count before they give more chemo, because otherwise, It will wipe me out. That's probably why I've been getting more and more tired each day. Actually it does make sense, but still it's pretty yucky. Having a blood transfusion probably will keep me from donating blood in the future, which sucks, because I've donated at VSU a couple of times. SO in the event I can't donate anymore, maybe some of you guys might be willing to step up and donate for me. Who knows, maybe I'll get lucky and get some of your blood in the future. That would be kinda cool if you think about it, me running around with some of my own good friends blood! You never know!

Butch told me that it's 110 heat index today at the riverboats. That is way too hot! I've got the temp down to 68 in my room, so I feel kinda like I'm living in the 'Fall" version of Memphis, or the "now" version of Newland, North Carolina. I'm lucky!




Bon Courage!

Hopefully I'm going home tomorrow...

Well today was a pretty good day. Started off with a premium scrambled egg, bacon, biscuit, grits, coffee, and OJ breakfast. It was all good, but like usual, I wrinkled my nose at the Grits, because frankly the thought of eating something named loosely after dirt just has never been appetizing to me. But Jamie loves grits, so perhaps in a moment of my weakness in missing him terribly while he's busy packing up our stuff in Valdosta, I decided to add a little 2% milk and three packs of sugar, stirred it up really good and ate every bite. Oddly enough it wasn't that bad. Now were I to make them at home, they would be much warmer, and I think I would make them with brown sugar and cinnamon and maybe some raisins. I would definitely doctor them up but I think my Jamie would be proud of his non-Grit eating girl!

I also started a colored pencil on Black paper of my Hopper, It's from a photo Jamie took at our family reunion in North Carolina in May, it's only about 25% done, so maybe tomorrow I'll post an in-progress pic along with the photo so you guys can see what I'm working towards. I still can't believe I haven't drawn any pics of Hop yet. By the time Gus was 2 I had drawn a bunch of him. But he was a much more "still" child, he would actually snuggle up next to me when I would draw him, an he seemed to go to sleep earlier than Hop. Hopper just doesn't sit still until you lay his little butt in his bed, then he's out like a like, but man he doesn't sit still until the last second possible!

So my good friend Paige dropped in to see me today, I love that she just drops in, she is so spontaneous like that, she once showed up at our house at 10pm in Valdosta and I was in bed, when I heard a knock on the door and she peeked in, it took me a minute to figure out if I was dreaming, but there she was! I love that! She brought me a little watercolor postcard book and an Alice in Wonderland Dream Journal. I also am a huge Alice in Wonderland fan, so that's just an extra plus. Love you Paige!!

The lunch today was kinda gross, Pulled pork and a cornbread pancake, some ridiculously over-sweetened sweet potato casserole, a small bowl of baked potato salad, and a small bowl of peaches in a really thick jelly/sauce. I couldn't muster the pulled pork, too yucky, the sweet potato stuff was not working for me either, but oddly enough the baked potato salad, and peaches were pretty good.


So after that culinary experience, I decided to cancel my dinner because Jeri and Butch said they were going to visit me and bring me whatever I wanted for dinner, so I decided I needed a Spud-Max and fruit bowl and large sweet tea from McAlister's Deli. And man-o-man was it good! And since I'm getting a GI test at 7:30 am, I can't eat after midnight, so at least I had a dinner!

When we were visiting tonight it occurred to me how much Hopper is really talking now, not just words, but actual sentences, it amazes me because, I guess, since I'm not around him all day every day, I notice it more. That just reinforces the fact I need to get home, so I do't miss another second!

And as the family left, I noticed that there was smoke coming from the intersection right outside my window. I saw a car turn the corner onto union, stop in the middle of the intersection and the hood burst into flames. The driver got out , made a call, and I KID YOU NOT 10 minutes later the first police car shows up, then another 5 after that the fire truck rolls in. I suppose since the driver got out and called it wasn't an emergency, but since it all happened right outside the Methodist Central Hospital, and there were large orange flames coming from the hood and interior of the car, seems like a little more urgency might have been warranted. hmmmm...Memphis...crazy...just sayin'! 

Today when I was in the shower I noticed a small bump on my right abdomen, similar to the place I noticed on the left side when we were in North Carolina, the same thing that set all this crap in motion. So I immediately asked the nurse to look into it and she said, oh that's where they gave you lovenox, a blood thinner. But strangely I don't ever remember getting a shot there. But assured me yes I had gotten one, so when the Oncologist came in I told him too, but he said oh yes, that must be the lovenox, so OK I think maybe the nurses are just ninja-stealthy and gave me shot in my stomach with out me knowing it. I have been getting the occasional insulin shot because now due to the steroids, I have steroid induced diabetes, and honest the needle is so small that when they give me the shot in the back of the arm I honestly don't feel it at all! Well my favorite nurses Becca and Heather are on tonight, and for some reason I was compelled again to tell them about the spot, Heather happened to have my chart with her, but before she even looked at the chart she said, but you haven't had lovenox, you aren't on a blood thinner, that's why your wearing the squeezer things on your legs, to prevent blood clots. Not to mention that the shot for the lovenox would be given in the love handle areas or close to the belly button area. Hmmm I think....she double checks the chart, and confirms, nope on the lovenox. So she's gone to try to see if the doc is still here, unlikely, or to at least leave a note with the next doctor. She did seemed a bit perturbed too, but she maintained a completely professional composure thru the whole conversation, while I was starting to see a little red. I mean how hard is it for folks to check on a chart for something. SO now I have to wait and see if I wake up to another angry bruise that will turn into something some worse...uggghhh. Hopefully it's just another side effect of this cancer crap, but I'm starting to think that some people need to get on the same page!! So if y'all don't mind, a little extra love, prayers, mantras, dances, and well-wishes would be greatly appreciated!!

Remember this is just another little bump in the road, but just a bump nothing more. I am going to be OK, I'm positive of this!

Bon Courage!

Good Morning rainy Memphis....

Well today is Tuesday so I've been in the hospital since Saturday morning and I'm pretty much ready to go home. Finally got an MRI last night at 7ish. Maybe I'll get the results this morning. The oncologist said that if everything looks good I should be able to go home today. I have been having a lot more pain in my upper stomach and chest area, sometimes where it is getting hard to catch my breath sometimes. But maybe the pain meds will help that out a bit. I'm ready to get on with the next round of chemo some we can shrink these tumors. It kinda sucks feeling like you got a brick sitting on your chest all day.

I have to say that the room I was put in this time has this really great double window, which I had the nurses open both blinds completely so I could get the full panoramic experience. My friend Virginia from Arkansas gave me this really great eye pillow that I wear when I sleep, so I can just peek out when I want to. So night before last I heard..through my ear plugs..some pretty big thunder, so I peeked out to see the most beautiful lightning storm, lots and lots of orange and yellow an bright white lightning strikes. I wish I would have had the energy to take some pictures, but since it was dark-thirty outside I didn't figure my iPhone would do it justice, so these images will remain my own little memories. It rained again last night, and this morning I woke up to a really wonderful rainy super fog. Once again, something that I am currently really enjoying!

Yesterday, I actually organized my big set of colored penciled into color fields, and a portrait bunch, so hopefully today I'll feel up to some sketching. If so I'll try to post some pics.

I hope ya'll have a great day!

Bon Courage!!

trying to keep my chin up here, but....

Last night I didn't sleep at all, between the upped steroids and the "squeezer" thingys on my legs repeatedly squeezing. Now don't get me wrong, I liked the way it felt for the first 45 minutes, but enough is enough especially after 4 hours, then 6 then 8...

So then the oncologist for the West clinic came by and announced that she wanted to do an MRI to watch for any other brain bleeds...yada yada yada.... But when I said, ya know I'm thinking my head is good, headaches are gone, but he main source of pain now is the area where my ribs come together and down from there towards my back. Hmmm she said, so when did this pain come up she asks, Well I say that it;s pretty much been with me since I've been in Memphis, she was totally shocked, she had no idea that I had cancer anywhere else than my brain. I told her that Dr. Tian, had the MRI/CTSCAN that was taken at the West clininc. I told her about the multiple spots and lymph nodes that popped up on the MRI, so then she decided to look at Dr. Tians notes on that MRI. That seems to clear up some stuff for her, She does say that she still wants to get the MRI of the brain, and even though the pain is localized to the chest/abdomen, she's not going to order an MRI of that area, because it hasn't been enough time for the one round of chemo to have done much, so instead she's upping the pain meds to a more tolerable level. Now that we have everyone on the same page (((insert a small bit of sarcasm here))))

I did ask her how the DTIC chemo worked, how many times I have to have it, She said that it is one of the most hardcore chemo for melanoma, and ideally, they'll do a couple of rounds, then check after two or three weeks for progress, if it shows progress then they would continue, until the cancer is in remission, or stops changing, If it doesn't continue working then we're off to clinical trial options, and frankly I hope we do those anyway, I mean really it's just one more thing right!

The brightest highlight of the day was Butch, Jeri, and Hopper coming to bring me dinner and my new colored pencil set. Hopper was having a blast dancing around and looking out the window onto Union Ave 6 stories up! He's gonna be fearless I think. Maybe tomorrow I'll try some drawings of Hopper, I still can't believe I don't have one drawing of him that I have done myself.

After they left I decided to take a shower, I thought it might actually perk me up a bit, but it actually did the opposite. I knocked me out. I'm beyond ready to go to bed, but now the nurse says I have to wait until 9pm to get my sleeping pill. She said, when they give me a sleeping pill, they have to actually let me sleep....hmmm.we'll see about that. I told her I want everything I can get...the big pain guns, sleeping pill, what ever she can slip me, I'll take it.

So it's 8:40 pm here, I've written about all I can, so I'm gonna try to patiently wait my last 20 minutes...can she do it??? I promise I'll try.

Hopefully tomorrow I'll be in better spirits, I'm not apologizing for being tired and grumpy, just trying to get back on an even keel here. Cause I really don't like "crabby' people, especially when I'm the crabby people!

Thanks again for all the sweet well wishes and prayer, and mantras and love, you guys are really helping me and my lovely boys get through this crazy stuff!

Bon Courage!

it's been a while...

Well it's ben a while since I've last posted...that kinda sounds like a confessional. Who knows, maybe that's what this is. This morning I woke up with a killer headache, AND for the first time since the Montezuma's revenge, when Shane and Casey were here, throwing up. That has to be the absolute worst! Not to mention that they have plenty of meds to help curb it, but sometimes they just don't seem to work.Uggghh! So came into the ER around 7:30am and they finally gave me enough meds to knock me out...I woke up around 6:30pm. No more throwing up, still nauseous but that I can handle. It's funny what you remember in the throws of sickness, but when I was was signing in to the ER there was a younger woman signing in next to me, she was wearing thin long leggings and a thin black tank top, a wee bit small, and not a stitch of underwear. My first and only question...why? I mean, I did have my PJ's on, but maybe it's just me, or Memphis, but underwear might have been a good choice...just sayin'. I also have random memories, of an older woman and older man yelling at some doctors for their shots, and then I remember someone hollering "Chill Out" to one of them. Not sure if this was a narcotics induced dream or for real, I'll check with Jamie i the morning about it.

Either way, I really am getting very good care here in Memphis, no matter what hallucinations I'm having.

So I did have a really great dinner visit with my wonderful friends Blake and Barbara. I've always known there was a divine reason that I found the job in Valdosta, and had the smarts to jump on it when it was offered to me. Valdosta, and VSU have been the best to our family, not only through this crap, but from the second we got there. Val-D and it's people rocks, and I promise that's not the drugs talkin'!

Speaking of Val-D, Jamie and Gus are heading back via flight in the morning...thanks Mark W! I believe my sweet Al is gonna pick them up in ATL and they'll be in town with momma and a bunch of other folks, packing up our stuff to bring back to Memphis. SO looks like we'll be selling or renting, for a while. Selling is OK with me, cause we've already decided that we'll probably just rent for a while when we get back. We're thinking we'll buy somewhere towards Hahira, or in the country some place.

SO give Jamie a call if you wanna catch up with him. his new number is 1-901-606-2041. Wish I could be there to see you all too! Soon! Very Soon!

Bon Courage!

Sorry I've been slack in posting....

July 3, 4, and 5th were super sleepy days for me. Don't know if it was the medicine, or the chemo, but every time my head hit the pillow, I just went to sleep.

I'm trying to work through this today, because I don't like sleeping so much. I'm gonna try to take care of boring stuff like my bills today, and I think our friends Virginia and Daren are coming out here for dinner at Wiseguys here in southaven. I've heard really great things about it, so hopefully it'll be good.

Just ordered the 132 set of prisma colored pencils and a sketchbook each for Gus and Hop. I love to see them doodling, Gus has always been a great drawer with a wonderful imagination. I think Hop will be similar, but he's probably gonna be drawing more trucks and balls and guitars. Which is good, he'll have his own thing going!

So Butch and Jeri are taking Gusto and Sheri to the casino tonight and tomorrow to swim at the pool and go to kid quest. I'll be good to get Gus outta the house, and I know he'll have a great time. Momma, me, and Jamie will watch Hop, he's been really god through all this, such a little funny man, always laughing and cutting up, a real joy to be around actually! Both boys have been really great, especially since I've been so tired.

Well I'm gonna rest a while, will try to add more later.

Bon Courage!

OK so I'm thinking yesterday and the day before we're not so hot, but I'm hoping better for today!

So on Thursday, CHemo 1 day, felt fine until I about spontaneously combusted in the parking lot on the way to the car. No worries on that,, Momma took me back to West clinic yesterday, apparently it was the hydrocortisone cream, just washed it off when I got home and started taking benadryl, which also helps me rest better, so there's a win-win. Still have the rash, but I'll probably keep it until they ween me off the steroids.

Friday, I started noticing that i get really irritated with myself and even family. Had several big crying jags yesterday, which I'm not happy about, but can't seem to control, which irritates me, cause, I don't like crying at all, Maybe I'm just starting the roller coaster ride that is cancer, or maybe, it's time to up the happy pills, I don't know. I got to thinking about how I feel about my illness and how everyone else in the house feels about it too. I know in my heart that each and every one in this house is willing to sacrifice everything and anything for me to be comfortable, But I feel like an atom bomb that is sitting hit waiting to go off, I know they don't see me like that at all, but that's how I see myself. Everyone wants too help with everything, making dinner, cleaning, watching the kids, but in this process, they are trying to help me maintain too, so they are starting to trip over each other, not really in a bad way, but I seem to be acutely aware of all facial expressions and attitudes at this point. (Like I said,...time for more happy pills perhaps). SO I talked with Jeri, Momma, and Jamie, and after a few days, and I see how long my chemo after effects last, if they only last a couple of days, like the nurse said they would, I'm gonna move back into the upstairs guest room, It has everything I need, and a bathroom attached, a bg ol' bed and lots of space for my all my stuff. After all I am a guest in this house, and right now that word seems very important to me. OK, enough of that...

After the clininc yesterday Momma and I had a great lunch of seafood gumbo and a salad at Jason's Deli. I love that place! Then we went to Michael's to check prices on colored pencils, the set I want is the one with 132 pencils, but they want 229.00 for it, I've found one on ebay, for $70, I'm ordering it today. Michael's is such a joke of a store! Then we went to Sally's beauty supply and bought some stuff to make my own "fancy" fingernails. Kinda like my power up toenails, but I want to stripe my toenails this time and figure, since I'm "technically" an artist, I should be able to do it myself. And I want to do all my toes, not just the big ones! We also bought some file folders and such to help us organize hospital bills, insurance forms, drug forms, and general house bills, can't really say I'm looking forward to that, but it is what it is, better to be organized than not.

Jamie, Gus, and I went to Applebee's (Thanks Tyra!) and to see the Last Airbender. ( Spoiler Alert! ) I really love that story as a cartoon, but the movie was interesting, great effects, didn't see the 3D version, but it was a little slow moving, I had hoped for some sort of obvious finish, but it's been left open for another movie I guess.

Jamie said that he and Gus are gonna go down to Valdosta in the next week or so to pack up some stuff to bring up here. Gus really want's to go, because, I think he's missing his stuff. Being able to bring back his toys and his beloved trampoline, will probably make him feel better, cause I have also noticed that he's entering the "tween" moody stages, and I really don't want him to get lost in this shuffle. I might be sick, but I'm still his momma, and I told him, his Momma, can still whoop him if necessary. Not that he's that bad, but just in case he gets a little crazy!! So that also means, we've got to decide whether to rent or try to sell the Valdosta house. I fully plan on being back in Val-D sooner, rather than later, but to not have to worry about a house note while were doing treatment up here would be nice. Besides, I think when we do come back, we might try to buy or rent out towards Hahira anyway.

So plans for today...rest, paint me some striped toenails, shave my hair off, it's coming out in brush fulls, and I am reminding myself of our old German shepard Newton, who's hair would just fly off her back as she glided through the house, that used to drive me crazy! It's just a real mess, so it's gotta go. I told Jamie, maybe he can run to walmart and buy my a "Rocks, Flags, and Eagles Bandana to wear over to the Christenson's 4th celebration...just kidding...I'm not that goofy....yet!

Well that's all for mow, gonna nap, big day ahead.

Bon Courage!

funny how things work out...

Well today started out pretty good, got out of the hospital, Jamie took me for pancakes and then on to the West clinic for chemo. round 1. However, while in the hospital I developed this crazy rash on my neck and chest, that I was told late this afternoon was probably from the steroids. Well, the hospital said that hydro cortisone would fix it right up, so I lathered up in it for two day. I guess for all intents and purposes this should be true, but apparently, the DTIC, aka Dacarbazine apparently doesn't get along with hydrocortisone cream. So after the treatment, Jamie and I walked out to the car, probably 50 feet, and as soon as the Memphis sun hit my exposed skin where the cream had been applied, I seriously thought I was going to spontaneously combust right there in the parking lot. I have never run so fast for the car in my life! Of course I was crying by the time I got in the car, mainly because it scared the shit out of me, but also, because it was kinda like adding insult to injury at this point...you see I am not always super happy about all this stuff. Once in the car with the air conditioner on the pain went away very quickly, but Jamie made sure my blanket was securely fastened in the window and window blind, so no other sun touched me anywhere. And when we got home, he even lifted Hopper's kiddee pool up above my head to make sure I wasn't scorched again. I wasn't. I laid down for a while and decided to google this DTIC and really figure out how beastly it's gonna get. It looks like it's gonna be beastly for sure, First thing I saw was that it didn't get along at all with the hydrocortisone cream and basically I'm poisoning myself to kill these cancer cells, and I'm probably gonna get pretty sickly and nauseous within a few days. Well I called the on-call doc at the West clinic and he said to take a bath and wash off what I could and make an appointment to come in tomorrow and let on of the nurse-practitioners look at it 'just to double-check. So although I thought I was done with the doctor offices today, I guess not. I'm gonna have to let a lot of my preconceived notions go about what to and not to expect.

On a happier note, I did get to have dinner at a local mexican restaurant here in southaven. I had hoped to take Gus to india palace, but he and Jamie decided that was too far to go for me, so we'll do it another day. The food was OK, but it was definitely not Las Banderas or Cafe Ole. I like me some real mexican food! It was a little pricey, too, so we'll go "in search of" the next new mexican restaurant at a later date, And don't think I won't make it to India Palace with Gusto, he and I love Indian food, so we're going for sure soon!!

Wel it's now 9:20 and that's actually pretty late for me, so I'm gonna try to rest or even sleep now. Wish me luck, cause they gave me 20 mgs of decadron in my IV today before the chemo, and I've actually only been getting 12 mgs a day, and that level keeps me from sleeping soundly. Tomorrow I get to go back to the taper down dose. So I do have that to look forward to.

Bon Courage!

Getting outta here this morning!!

Well I got my last whole brain radiation this morning, it was full of hugs and laughter, and I even got to ring the radiation bell AND I got a certifcate, which was really pretty sweet. I also got to take my radiation collander mask, don;t know if I'll do anything with it, but I'm sure I can figure out something!

They came and got me for the port-o-cath at 11am and i's now 2:30, so that was also very easy! So all in all today has been a REALLY GREAT DAY!!

They ended up not knocking me out totally for the port-a-cath, because of the brain bleed situation, I still didn't feel anything at all which was fine with me! I did over estimate my energy levels at 2:30. I pretty much crashed at 4pm. Ate dinner, took meds, and went to sleep. Jamie hung around until 9pm waiting on the Cancer Doc to come talk. She came by around 10. Good thing though, she's already got the discharge papers ready to go, do when Jamie gets up here around 9am I should get Sprung, which is going to be SO great. I'm ready to be back home with my boys and family!

If I'm not mistaken, my chemo goes from today until Wednesday, Then I think I'll have some "off' days. Not sure how sick if any I'll get, But I think that on my "off" days I might be up to visitors and going some places, I'll let ya'll know as soon as I know anything.!

Well my nurses here have been taking great care of me, brought me really good hot coffee and cherrios at 6am this morning. They've been super nice and although I'll be more than hapy to go home, it makes me glad that they're here to make the next patients stay a bit more pleasant. I'm really understanding AND appreciating ALL that my caregivers are doing, and with a smile no less! You guys are awesome, and I really love that you love what you do. I'm sure not everyone says thanks, so I'll thank you all for all those who don't!!

THANK YOU!!

Bon Courage!!!

Last brain Radiation Done, Port-a-cath done, Chemo starts today!

Well I got my last whole brain radiation this morning, it was full of hugs and laughter, and I even got to ring the radiation bell AND I got a certifcate, which was really pretty sweet. I also got to take my radiation collander mask, don;t know if I'll do anything with it, but I'm sure I can figure out something!

They came and got me for the port-o-cath at 11am and i's now 2:30, so that was also very easy! So all in all today has been a REALLY GREAT DAY!! (yesterday)

They ended up not knocking me out totally for the port-a-cath, because of the brain bleed situation, I still didn't feel anything at all which was fine with me! I did over estimate my energy levels at 2:30. I pretty much crashed at 4pm. Ate dinner, took meds, and went to sleep. Jamie hung around until 9pm waiting on the Cancer Doc to come talk. She came by around 10. Good thing though, she's already got the discharge papers ready to go, do when Jamie gets up here around 9am I should get Sprung, which is going to be SO great. I'm ready to be back home with my boys and family!

If I'm not mistaken, I get Chemo from today until Wednesday, and then wait a while, I'll find out specifics later. Not sure about how sick I'll get if any, but I'm thinking that maybe on my off days I'll be well enough for visitors and going some places. Let Ya'll know!

ALready thinking about Pancakes! at least I still have an appetite, better enjoy it while I can!

Bon Courage!

FInally in my own room..

Well finally today at 2:30 I got into my own room at the hospital! Thank goodness!! Actually took a miraculous HOT shower, in a very pretty celadon green bathroom..I'm being serious, it is actually pretty. OH yeah, I think my hair is beginning to let go, was able to pull a little out when I tugged on it. I've developed some crazy rash on my neck and chest, but I'm not gonna worry about it until tomorrow when I finish radiation. In the scheme of things, it's not itching, so it's not a big deal.

I did have a great surprise at the hospital today. As soon as I got in the room, a nurse came in to talk to me about the anesthesia. It was my old friend from MCA Pam Gurley. We were both in the textile area. It was so nice to see her face again, especially since I had just thought about her two days ago when Jamie brought me in for treatment.

Daddy and Bo came by for a visit before they left to go back to NC this afternoon. I hated to see them go, but I understand wanting to get back to the balmy 70-75 degrees of the NC Mountains. Memphis is just not for the faint of heart! Besides, I've been in the hospital most of the time they've been here. Next time they come, hopefully I'll just be resting at home and they can pamper me all they want then.

Momma came up and spent a couple of hours visiting, it was really really nice to just hang out with her, we even got to talk to my Aunt Josie in Belguim.

So tomorrow my port-a-cath is scheduled for 11am, I'll probably get the radiation treatment about 9-10ish, then maybe I'll get sprung from this joint tomorrow evening. Then Chemo starts Thursday.

Jamie and the family took the boys down to the water fountains downtown, he then brought me a vegetarian burrito with chili gravy and guacamole and chips. I love some Cafe Ole'. He's at the movies with Gus, but I think I might have him bring
me some ice cream after the movies. You see I can eat anything I want until midnight, then nada. SO I'm gonna make it count!

Today has been a really good day!
Bon Courage!

2nd night in hospital

Well got to spend yet another evening in the Neuro ICU. The doctor who was supposed to move me to the'floor, didn't show up until 8'30 p.m., and then he said that because I was stable, he' figured he'd just let me stay here in the ICU, Which, is silly to me, cause, I'm stable, sable is good right? doh! Any whoo, got him to give me some pain meds and something to help me sleep, just get going on some pretty good sleep with ear plugs in and everything, and at 3:30 the lab teach bursts in with her happy self announcing she needed to get my blood. I figured that since i have a port in my arm already, she could just get it there....nope honey, gotta stick ya. OH JOY!..at 3 am. I did have the wear-with-all to ask her if she planned her rounds that way, she just smiled and said Nope! AHH the ignorance is bliss age, meets the grumpy woman in a ICU bed age. Could be trouble!!

Well then after she left I tried for a little more sleep, but the nurses were right at my door, which is right at the nurses station, bring so loud, laughing and cutting up. I'm serious, I figured ICU meant Intensive care unit, not It's crazy up in here! Sorry, Crabbiness is setting in!

Supposedly the neurosurgeon is supposed to come round between 5:30 and 6:30am, so maybe they'll move me, or send me home at his point. Don't know, but I would really love a nice hot shower about now!

Jamie's bringing me some La Baguette for breakfast so that should be yummy!
Food, Food, Glorious Food. Any of you Memphis folks, know how wonderful La Baguette is!!

I'll try to be a little less crabby next go round...

Bon Courage!

First hospital stay

Well this weekend, was not quite what I had planned, sickly Saturday night, slept most of Sunday. Highlight of Sunday was watching Clear and Present Danger with Daddy and Harrison Ford. I really Like Harrison Ford! Handsome, upstanding, to bad all our government officials can't follow his lead!

SO anywhoo, headache came n round 7:30, and decided it wasn't gonna let go, so Jamie called my fabulous Dr. Dubal on his cell phone, to ask advice, he told me that it might be an indication of a brain bleed, so he recommended I come in for a CT scan, just to rule it out. So daddy and I trekked of to Methodist Central in search of a CTScan. I had completely forgotten that you had to jump through the weapons possession hoops, BEFORE you can even get into the ER. But actually, it wasn't too bad. I think it shocked Jamie and Daddy more than me. Luckily, I told them who my Doctor was and what he had said about the brain bleed, and they wisked me immediately to the CTScan machine, and then put me in a Neuro-ICU room. They gave med some good meds and I slept most of the night. I was able to get wheeled directly to my radiation treatments and then to another CT scan, so that made things so much better.

ATe some OK meatloaf...hospital food....blegh....and ow I'm getting a little sleepy.

Hopefully they'll get my in a real room soon, I'd really love a shower about now, and just a smidge of privacy.

Hopefully when I get a real room, I'll be able to visit with Daddy, Momma, Jamie, and Gusto, and BO. Jeri and Sheri have Hopper out shopping with them, and Everyone else is just patiently waiting to wait. I just want to say thanks for ALL the well wishes, prayers, and love, Ya'll really re the best family and friends a girl could ask for!!

Bon Courage!!

time for moderation...

OK had my first officially rough night. Woke up wih my knees on fire..??? WHo knows what that's about, then my stomach and back were in major pain. Jamie'c convinced it was the donuts, deviled eggs, and homemde chicken pot pie. But it was all so good!! I guess it's time for moderation.

Woke up with a major headache, so I decided to take a whole steroid, instead of a half, just in case something in there is swelling. It's pretty much gone now, so that does make mr feel better.I even had to take a nausea pill. Yuk. I've slept most of the morning away, but I guess I need that too. It's funny how hard it is too try and make yourself wake up from a super-duper stupor. Lots of Ice water seems to be helping. We'll see.

Jamie's taken the boys out of the house to get me a bed desk at bed bath and beyond. Daddy's staying at home today, watching the race on TV. I like that he's just in the other room watching something familiar. Yesterday afternoon, he and Jeri put up the bird feeders in her back yard. They really are so pretty, 2 hummingbird ones, and one to attract goldfinches. But ya'll know me, I'm a birdy lover too.You can never have too many. I'd rather have songbirds, but even like the occasional mocking bird.

SO when Jamie get's back today we're gonna, organize dome pictures on his jump drive so we can have them printed and put in the albums I bought yesterday for Momma and daddy. It'll be nice for them to have a album to hold and actually look at. Momma likes the computer pics, but she has always preferred the old school albums!

Sorry this post is so random, but I just feel like I need to keep typing random stuff, until I officially WAKE UP...not sure that is gonna happen though.

Maybe I'll try again later. I promise I'll do better with my food intake today, DO NOT want a repeat of last night!

Bon Courage!

hair short....check!

Well daddy took mr to get my hair chopped off, it's good, much cooler, kind of like Pinks's white pixie cut, but mines not white yet. Im gonna bleach it but I gotta OK it with the doc first.

We also made the trek to Wal-mart...to buy Butch and Jeri some bird feeders. My daddy is an avid birder, and I really like them too, so I think this will be a nice addition to the back yard, especially on those o so occasional "cool" evenings here in Memphis.

I had really high hopes for taking Gusto to the skating rink, but I am too tired to go, which makes me a little sad, cause I really wanted to go. I think those kind of disappointments are gonna be the worst, for me because I really want to be able to be present and accounted for when it comes to the boys. Gusto is always so sweet, and says he'd rater me get the rest I need, but I still want to go!

Just wanted to say thanks to Mike and Hillary Davie for the great package they sent, loaded with fingernail polish, bunches of candy, and brownies, and doggy treats! Ya'll re too sweet!! Those brownies are yummy!

And my sweet Aunt's FranSue and BettyJo and Uncle David brought DONUT's!!! and the most wonderful Banana Blueberry muffins, and even homemade chicken pot pie! I'm gonna get spoiled if ya'll keep this up!

So at the moment, I'm lying here in bed typing this, and little Hop is taking a nap in his port-a-crib, next to my bed. There really is something nice about having your babies all sleep in the same room with you. Last night, I had Jamie next to me, Hopper and Gus in here too, it was perfect. Really Perfect. Butch and Jeri take great care of all of us, but I do love being surrounded by my men! Kind of feels like I'm surrounded by my own mini-army.

Bon Courage!

temporary tattoos...whoohooo!

Well today Jamie and I went in for a radiation treatment, and ended up having to get a extra CTScan, cause I had this little place o my jaw bone, miraculously appear..sort of over night. Nothing obvious to the eye, but in two days, it went from feeling "squishy" to hard, and Dr. Dubal, decided that was too fast for him, so since we're already zapping, we'd just zap a focused zap at it in hopes that it would go back to bed until Monday. We'll continue the extra zaps on Mon-Wed, of next week, just in addition to the WBRT we had planned. Nothing to wory about really, as the Chemo starts Thursday anyway, and that should send the little critters scrambling. But the funny thing is that my radiation girls, had to draw on my jaw with green and silver paint-pen to "mark the spot." Initially they thought that they would be able to erase it, but the Dc said it would be really great if I could try to leave it on there until Monday...sooo I get to walk around with a semi-cool doodle-drawing on my jaw all weekend. I'll try o post a pic tomorrow, ad maybe I'll even embellish it with Photoshop a bit!

On a wonderful note, Jamie was a doll....as you all know...and he bought us knew iPhones today. I didn't want the new fangled one, just the old school iPhone and I LOVE IT!! I have this penchant for all things hot Pink and shiny, so now I have a beautiful hot pink shiny new iPhone. I must have been a crow in a previous life, because they also have a desire to have shiny things too. SO Barbara P Ward, once again, there's proof of my Crow Totem.

Daddy and Bo made it to Memphis, and I'm so glad they got here safe, I think they'll stay til Wednesday. I really do enjoy having them here. Nice to have family around. My mom's coming up on Monday or Tuesday, she was coming up today, but with the threat of a tropical depression worsening in the in florida panhandle, she decided to stay and batten down al the hatches just in case. First BP, now the weather. Could someone, please tell our government that we need help from far and wide here..just sayin!

SO on my agenda tomorrow, rest, enjoy the day, rest, take Gus skating....did I mention he got new quad skates...very cool! ANd then rest some more, but I also plan to have lots of fun. I stopped by the Art Center this morning and bought some black paper, so I can start working on some drawings of Hop. I was looking around at the art I've done that now lives here in Memphis, and I realized that I have not ever drawn Hopper! Crazy! I also bought a bunch of Origami paper, and Gus and I are gonna start making 1000 cranes. I've always wanted to actually do that, so I figured it is something that he and I can enjoy doing together.

We'll getting sleepy, so I'm gonna hit the hay.

Bon Courage Everyone!!

OK back to the awake...

Well the past two days have been an eye-opener. I have not slept so much in years, and not necessarily because I've wanted to but because I had too. Apparently all this radiation and the steroids, pain meds and sleep meds have done a number on me. Today the doc told me to lower my steroid pill and I told him I was also going to not take the ambien, since I believe I've caught up. He also told me not to take my blood pressure meds, cause it was getting too low, and that could also make me tired. So with all that maybe I'll be getting back on track soon. On a lighter note, I get to have a port-a-cath installed on Monday, so when my radiation is done on Wednesday, I'll be able to start Chemo on Thursday. Don't really no what to expect with that, but I'm not gonna think about it until Thursday.

On another note, Jamie and I have cancelled or Verizon account, because, we we're not happy with the new phones, and couldn't justify paying for phones, we couldn't use. So I'm not sure exactly what we'll do. Ideally we'll go the iPhone route, but again, that's for another day. In the mean time just FaceBook or email me at dharmon1968@gmail.com.

Sorry for the short post, maybe more a little later.

Bon Courage!

Well I lit up like a jar of fireflies....

Well this morning Jamie and I went to see Dr. Tian to discuss the PET/CT results, and it was pretty much as I had figured, I lit up like a jar of alabama fireflies. Granted, the contrast they give you is like a sugar, and it glows like crazy in organs that metabolize sugars and junk like that..if you know me at all I love me some sugar! He did say that there is some activity in the adrenal glad, and spleen I think, an a bunch of lymph nodes, but there really good news is that they are all still very small, less than a centimeter, and they don't seem to be causing any "extra" issues at this point. So the current course of action is to finish the WHole Brain Radiation on Wednesday. I'm going to schedule myself to have a port-a-cath placed in my chest next Monday, so as soon as I'm done with the brain stuff, I'll be ready for the first batch of chemo that will hopefully star Thursday or Friday, or maybe sooner. We're still learning the lingo around here, gotta figure out, what a course is, is it one treatment, or several, a line...same question.. This is definitely a learning curve, but Im sure it'll all get itself worked out. Once adain, Dr, Tian and Dr. Dubal are on the same page with the chemo, and they have been really wonderful doctors to have in my corner. They are so positive, and all smiles, even when confronted with the occasional mini-meltdown from they're usually positive patient!! So they are both coming highly recommended from me, not that I'd actually ever hope any of you will have to use them, but highly recommended they come!! Well I might try to post some more later. But for now, I'm gonna rest a bit.

Bon Conrage eveyone!!

Had a little talk....

Well I have been thinking about this for some time now, and I've decided to let ya'll in.

If you're following my facebook, or even this blog, you can all see the amazing outpouring of love, life, spirituality and religion of many facets that are so wonderfully urging and praying us through this crazy journey. Now most of you who know me personally know that i don't go to any church regularly, I never have, but you see I've never had any problem with this, because I have always had the insight to be able to look at this beautiful world and all the wonderful, colorful, spiritual people and know, without a seconds doubt that I am not the one in charge here. The day I gave birth to Gus, looked into his beautiful face I absolutely knew he was the most amazing gift, and he was given to me and Jamie. Then 9 years later came our sweet Hopper, once again no proof needed that I was on the receiving end, of some pretty fine blessings in my life!

So the reason for posting this particular blog entry, is just to let anyone who might be curious about where I stand know.

The other morning, I got up early, and decided that I needed to talk to my maker, about this path I'm on. You see I talk regularly to anyone who will listen and luckily we get to talk quite often. I pretty much said that while I knew I was very blessed to have Jamie, Gus, and Hopper in my life, I am just not ready to let hem or anybody else in it go at the moment. I can appreciate the seriousness of this disease but I just wanted to make it clear that I have way too much to live for, and I am not going to check out any time soon. I have so many things I'm still going to do with all 3 of my boys. I want us all to go to Belgium in the summer, I want to take Gus back to NYC, and even take Hop there when he's about 6 or 7. I've been eyeing this really cool teardrop shaped pull behind camper, that would be great to go camping across the states in. I mean those are just a few things. Gus is so smart, and I can totally see him as an archaeologist or scientist of some sort. Creative, handsome, and smart! Trifecta!!

I'm pretty sure Hopper will be into music, because he's a guitar man, but he also has a strong attachment to anything with wheel, very much like his daddy on that one. There will be sports games, recitals, dirt-bike races, sleepovers, pizza nights, and just the general lovely daily things that families do. And well I'm not giving any of that up. Maybe some of you might find it selfish for me to argue on my behalf, but I just don't give up, I never have. I mean seriously with a life like mine why would anyone even entertain the thought!

I am positive and will remain so. I will not entertain any negative thoughts, from myself or any of you. Please believe what ever you like, and please feel free to send love thoughts, prayers, chants, mantras, poems, in what ever forms you choose, because, I can honestly say that a diverse spiritual world is what we live in and I know that all these powerful emotions coming together to work for one good, is not gonna offend me or my maker one bit!

OH yeah, tomorrow morning we talk to Dr. Tian my oncologist about the PET/CT results for any other stuff floating around in here. I did tell Jamie, that we are probably gonna be doing the two-step a while, but that's OK, my attitude isn't gonna change, and often when there is a real challenge, you have to back-up before you go forward.

SO maybe this will help some of you understand where we're coming from at least a little.

Just rememeber...Everyone needs a little Bon Courage now and then.

We'll talk tomorrow!!!