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.
Sunday, August 1, 2010
Saturday, July 31, 2010
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!
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!
Wednesday, July 28, 2010
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!
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!
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!
Sunday, July 25, 2010
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!
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!
Saturday, July 24, 2010
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!
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!
Friday, July 23, 2010
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
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
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