No infusions the Platelets dropped to 21 which is not to bad & my White Blood Cell Count went from .8 to .9.
I was very tired today, I think the Chemo has started to catch up with me a little bit. I stayed in bed until breakfast came & got back in bed afterwards. I made myself get up & change my bed around 2pm. It took forever, almost an hour, I started to sweat & had to keep sitting down. I got my clothes out for a shower & got my arm wrapped when my mouth started watering & I felt real nauseous. I asked for a pill since my arm was wrapped the nurse wasn't gone a minute & I puked my guts up. I filled up the bottom of the trash can with tomato soup & orange juice. Do you got a nice visual yet...LOL it was soooo nasty.
I was very wore out after that but I felt so nasty I went ahead & brushed my teeth & took a shower. I laid down until 10pm but would not let myself sleep. I knew if I fell asleep during the day I would be up all night & the time goes too slow at night.
Marcus is sick. His nose will not stop running he sounds like Bozo the Clown on the phone :)
I told him DO NOT come see me. He is beating himself up, I told him to get well & get over it, there is nothing he can do & I can get my moral support over the phone. Betsey called & she is sick too so I told her DO NOT come up until she is sure she is over it. She was going to call Katie, since she cannot bring her up now. If Kim brings her girls up this week I will see if Katie can come with them.
Zack & Misty's Birthday is Friday. Can you believe Zack will be 6? How old will Misty be... I'll never tell:)
News Flash, My head was shaved last night. When I got out of the shower there was a bit of hair in the drain, but when I brushed it, the brush was full... I put the clippers on 3 and went to town. The Primary Care Attendant (PCA) stayed in to make sure I did not cut myself & then she cleaned up the back a little. I cleaned up the hair that was in my bed I did not realize how much had fell out before I got the shower. I did not want the shock of huge handfuls falling out at once. It was just better to do it on my terms. Needless to say I am not quite a bald eagle yet but I look a little like GI Jane.
Paula Parker is coming up to see me in the morning plus I get the Post Chemo - Day 14 Bone Marrow Biopsy tomorrow to see if we got it in remission. It should take between 48 & 72 hours to get the results back so keep your fingers crossed. The Doc seems to think it will be gone so I hope so!
Tuesday, September 30, 2008
Monday, September 29, 2008
September 28, 2008
Today was the fantastic, it made my week! The only thing that would have made it better was if the kids could have come up.
I woke up a little more tired than usual and I had a slow start. It seemed to take forever to eat breakfast & I was still a little gassy from the night before. Randy & Becky Conley my neighbors stopped by to see me real quick before they headed back to London from their weekend stay for the game yesterday. They brought me a snakeskin hair cover/bandanna, a card & real flowers but the desk would not let them bring the flowers up so I told them to take them home to Misty for me. No real flowers are allowed in the James Hospital only fake arrangements due to the immune compromised patients. It was good to see them but I had not had my shower yet & I had just got wrapped up & needed a platelet infusion so they went ahead & left.
My Platelets dropped down to 6 again so I got my 13th Platelet infusion which brought me up to 34. If you add up all my blood infusions I am up to 21 total now, so what everyone donated to date that has sent me their Doner ID numbers I have used them all up & I owe for 5 still. Please donate if you can & send me the Doner ID numbers if you are able to. This truly is the gift of life. A person is able to donate every 8 weeks & for those of you who do not know the Red Cross has a card that says thinking of you, that you can fill out & send to me with that Doner ID number when you donate. These cards are what I am using to track & turn into my insurance company. The blood supplies are low so please, please donate if you can.
Dad & Elaine got here around 1:30, they had just finished my infusion. I asked Elaine to have dad stop on the way here to get me & Marcus Kewpee burgers from Lima tehy are the best. Elaine also brought me Clear skin from Avon & many other lotions & cleansers to help decrease the acne. She also left a scrub top with me that she cut the right side out & replaced with velcro. We figured she only has to cut the sleeve all the way to the collar on the other one so she is going to take it home & fix it. She also left me a tub of peppermints to help with the nausea & Hershey kisses :)
As you can see from the slide show above in addition to Dad & Elaine, Missing Link came to cheer me up. You can't tell because I had to keep my mask on but I was smiling from ear to ear the whole time. Oatmeal, Pixi & JD came from Circleville, Pott's the National President & Carl who is a retired member from Columbusas well. Then from London there was Grace, Alan, Wojo, Cooter, Puppies, Berries, Thumper & the Gobbler.
Against my doctors orders I went for a very short ride around the Ross Heart Hospital courtyard with Oatmeal. There were no bumps it was so smooth but than it was not a Harley either. Pott's told me I would have to sanitize myself when I get back to my room LOL. It felt very healing to have my knees in the breeze. I would have loved to went for longer but I think Grace was going to have a heart attack because she was up here with me when the Doc's said no so I did not push it because I know Oatmeal would have took me wherever I wanted to go. He beat Pancreatic Cancer so I have learned a lot from him with what to expect with this. We joked I would have to get a bio-hazard tattoo after this, like his from the Chemo.
Carl got my tear ducts rolling when he gave me his lucky silver dollar that he carried with him in Vietnam, he told me it always brought him good luck & maybe it would do the same for me. He also referenced Midnight Rider I looked up the lyrics & I agree, I got 1 more silver dollar but I am not gonna let them catch me ...
They all went over & got cookies & sweets. I got a big peanut butter cookie that was delicious but dried my mouth something awful so Berries gave me her ice. It got really warm & the sun felt great but it was wearing me out fast so I told them to go enjoy the rest of the day & ride, but I wanted them to make one last sweep of the hospital courtyard with their bikes first & they all had to crack their pipes. They did & it was the coolest thing. I wheeled over to the side by the road & had my hand by my ear like I could not hear them to get them to do it louder. I hated to see them all leave, it was tough but I will be out of here soon.
Dad & Elaine took me back to my room & I was so tired I could not stop yawning. I had 3 bites of the Kewpee burger & could not eat anymore. It was after 5 so Dad & Elaine headed home so I could sleep. I was glad they both came up together, I did not have a picture of them together so I made sure to get a few. They are in the slide show above.
I put the kids homecoming pictures below, I cut Samantha & her friends head off on one somehow I need to fix it I could not believe how beautiful she looked, I mean she has always been cute but she looked absolutely stunning, all the girls did for that matter. I have not been able to meet Brooke yet but hopefully soon. Marcus tells me she is a really nice girl so as long as Brandon is Happy I am Happy.
After I was alone the wonderful day turned into a very rough night. The Gas came back with a vengeance I got an emergency order for GAS-X because my pains were 10 out of 10 some were worse than labor pains it seemed, it was really bad. Then to top that I had blood in my stool so I do not know what is going on yet they are running tests. My mucosa membranes are sloughing away so it is possible that is where the blood is from, hopefully it is nothing major. I will post what we find out. I was given some Oxycoden to decrease the pain which worked & I was able to get some sleep.
I can't stop smiling even through the pain so I want to say thank you again to everyone that came up, you made me so happy & no pain can take that away.
I woke up a little more tired than usual and I had a slow start. It seemed to take forever to eat breakfast & I was still a little gassy from the night before. Randy & Becky Conley my neighbors stopped by to see me real quick before they headed back to London from their weekend stay for the game yesterday. They brought me a snakeskin hair cover/bandanna, a card & real flowers but the desk would not let them bring the flowers up so I told them to take them home to Misty for me. No real flowers are allowed in the James Hospital only fake arrangements due to the immune compromised patients. It was good to see them but I had not had my shower yet & I had just got wrapped up & needed a platelet infusion so they went ahead & left.
My Platelets dropped down to 6 again so I got my 13th Platelet infusion which brought me up to 34. If you add up all my blood infusions I am up to 21 total now, so what everyone donated to date that has sent me their Doner ID numbers I have used them all up & I owe for 5 still. Please donate if you can & send me the Doner ID numbers if you are able to. This truly is the gift of life. A person is able to donate every 8 weeks & for those of you who do not know the Red Cross has a card that says thinking of you, that you can fill out & send to me with that Doner ID number when you donate. These cards are what I am using to track & turn into my insurance company. The blood supplies are low so please, please donate if you can.
Dad & Elaine got here around 1:30, they had just finished my infusion. I asked Elaine to have dad stop on the way here to get me & Marcus Kewpee burgers from Lima tehy are the best. Elaine also brought me Clear skin from Avon & many other lotions & cleansers to help decrease the acne. She also left a scrub top with me that she cut the right side out & replaced with velcro. We figured she only has to cut the sleeve all the way to the collar on the other one so she is going to take it home & fix it. She also left me a tub of peppermints to help with the nausea & Hershey kisses :)
As you can see from the slide show above in addition to Dad & Elaine, Missing Link came to cheer me up. You can't tell because I had to keep my mask on but I was smiling from ear to ear the whole time. Oatmeal, Pixi & JD came from Circleville, Pott's the National President & Carl who is a retired member from Columbusas well. Then from London there was Grace, Alan, Wojo, Cooter, Puppies, Berries, Thumper & the Gobbler.
Against my doctors orders I went for a very short ride around the Ross Heart Hospital courtyard with Oatmeal. There were no bumps it was so smooth but than it was not a Harley either. Pott's told me I would have to sanitize myself when I get back to my room LOL. It felt very healing to have my knees in the breeze. I would have loved to went for longer but I think Grace was going to have a heart attack because she was up here with me when the Doc's said no so I did not push it because I know Oatmeal would have took me wherever I wanted to go. He beat Pancreatic Cancer so I have learned a lot from him with what to expect with this. We joked I would have to get a bio-hazard tattoo after this, like his from the Chemo.
Carl got my tear ducts rolling when he gave me his lucky silver dollar that he carried with him in Vietnam, he told me it always brought him good luck & maybe it would do the same for me. He also referenced Midnight Rider I looked up the lyrics & I agree, I got 1 more silver dollar but I am not gonna let them catch me ...
They all went over & got cookies & sweets. I got a big peanut butter cookie that was delicious but dried my mouth something awful so Berries gave me her ice. It got really warm & the sun felt great but it was wearing me out fast so I told them to go enjoy the rest of the day & ride, but I wanted them to make one last sweep of the hospital courtyard with their bikes first & they all had to crack their pipes. They did & it was the coolest thing. I wheeled over to the side by the road & had my hand by my ear like I could not hear them to get them to do it louder. I hated to see them all leave, it was tough but I will be out of here soon.
Dad & Elaine took me back to my room & I was so tired I could not stop yawning. I had 3 bites of the Kewpee burger & could not eat anymore. It was after 5 so Dad & Elaine headed home so I could sleep. I was glad they both came up together, I did not have a picture of them together so I made sure to get a few. They are in the slide show above.
I put the kids homecoming pictures below, I cut Samantha & her friends head off on one somehow I need to fix it I could not believe how beautiful she looked, I mean she has always been cute but she looked absolutely stunning, all the girls did for that matter. I have not been able to meet Brooke yet but hopefully soon. Marcus tells me she is a really nice girl so as long as Brandon is Happy I am Happy.
After I was alone the wonderful day turned into a very rough night. The Gas came back with a vengeance I got an emergency order for GAS-X because my pains were 10 out of 10 some were worse than labor pains it seemed, it was really bad. Then to top that I had blood in my stool so I do not know what is going on yet they are running tests. My mucosa membranes are sloughing away so it is possible that is where the blood is from, hopefully it is nothing major. I will post what we find out. I was given some Oxycoden to decrease the pain which worked & I was able to get some sleep.
I can't stop smiling even through the pain so I want to say thank you again to everyone that came up, you made me so happy & no pain can take that away.
Sunday, September 28, 2008
September 27, 2008
Dorothy McLaughlin came to visit me today today, I can't believe she braved the traffic. She made decent time getting up here after the game started but she left after 3:30ish when the game was over so I have no idea how long it took her to get home. She took me to Wendy's in the basement for lunch, it was good but I am going to have to cut back on all the grease it is tearing me up. We had a great visit I have not seen her in years & she looks great & I could not believe how much weight she had lost. She looks good! We talked about the kids, she brought her camera & I cannot get over how much they have all grown, Gabe & Zack are about a year apart & Zack is so much bigger than Gabe. Justine is more beautiful then ever but she always has been a pretty girl & her other 2 boys Jordan & Jared are getting all grown up quick. Between her 4 kids & mine it was always a major adventure & involved pizza or a cookout when we had them all together. When I get out of the hospital we will have to do it again.I am down to 164 pounds today & very gassy :( I just want the misery to hurry up & be done they will give me some Maalox or something I am sure in a little bit) I try to put what is going on with my labs for my sister and all the other medical folks following me, I know it is all Greek to most of you so I listed my labs for today & what the ranges are for a normal person that does not have cancer. If I have any other labs that are below normal in the future that I did not post the ranges I will list their normal ranges for you there are about 17 different areas they test my blood for each day. I only post the problem areas that the Doc's are watching.
So for today my labs were as follows; Hemoglobin dropped from 10.9 to 10.1 (Normal ranges are 11.7 to 15.5) so this is not to bad.
Hct dropped from 31.3 to 28.9 (Normal Ranges are 35 to 45).
White Blood Cell count dropped from .9 to .7 (Normal ranges are 4.5 to 11.0).
Platelet count after the last infusion went to 14 but has now dropped down to 6 again (Normal ranges are 150-500)
Sodium Level went up to 133 from 132 (Normal ranges are between 136 to 145).
Creatinine dropped from .65 to .55 (Normal ranges are from .6to1.1).
Calcium dropped from 9.2 to 8.4 (Normal Ranges are from 8.6 to 10).
I am definitely keeping up & possibly increasing my medical knowledge during this stay. Today is also the 11th day since they did the first Chemo treatment. On day 14 I get another Bone Marrow Biopsy to see if the Chemo worked & put the Leukemia in remission. I still have not hit my Nader & I am nervous about this for some reason. I did start getting the mouth sores today, they are lovely. I get this magic mouth wash that is awful tasting but is chalked full of Ladocaine so for a good half hour I can't feel my teeth, tongue or lips. 4 times a day I get to drool on my self & I feel like my mouth is swollen like a baboon until it wears off. On the positive note, my hair is still in this morning.
Oh yeah and the docs put me on Norethindrone, a female hormone they are using it to stop my periods so I do not bleed to death. My gynecologist was wrong in June it was not normal for me to be bleeding like a stuck hog so if you have that problem get a second opinion before you consider the Novasure procedure. I did not have it done & I am so glad because it would have been unnecessary & I may have bleed to death during the procedure with my condition. Now let me tell you no period is a good thing for most women but this medicine has a nasty side effect it gives you acne real bad not pimples, acne so I feel like I look like a leper right now & there is nothing I can do about it.
Dad & Elaine are supposed to come see me today & I think the whole Missing Link Motorcycle Club may be coming up as well. If they do I am going to try to sneak a ride around the parking lot... we'll see. I am really looking forward to seeing everybody.
I took a nap from 3:30 to 7:00pm, that is a first. It is sooooo good to be able to sleep for more than an hour! Thank you Betsey again. I put a lot of updates on the Missing Link website yesterday so check it out if you have time I added picture slide shows to Circleville & Northwest's pages & Columbus sent me their schedule & a flyer so I updated that info & I added Wojo & Alan along with some other pictures in the London slide show.
At home there was major drama last night with homecoming, I do not have the pictures yet but will post them all when I get them. They would not let the kids in to the dance that go to London Academy. After a very heated argument with the parents, I can't believe Marcus kept his cool, I guess the cops were a foot behind him the whole time & the High School Principal refusing to budge & threw the kids out in front of all the other students. The London Academy principal came up after talking with the School District Superintendent & the kid's got to go in & that is what was important. Needless to say there is going to be a ton of parents that are going to the next school board meeting. It all ended good for the kids but unfortunately the Principal embarrassed them all in front of their peers & that is unacceptable.
Enough negativity I am going to have a good day tomorrow!
Saturday, September 27, 2008
September 26, 2008
I felt better today then I have all week. I got platelets first thing this morning that brought me up from 6 to 14 woohoo, I didn't make any over the night but I retained some from the infusion today. I weighed in at 167 & given how much I have been going to the bathroom I will probably be less tomorrow. The Doc's agreed to pull me off all IV fluids unless I need any antibiotics or an infusion so this frees me up to be more mobile. I can leave the room much easier without carting around 3 IV Lines plus as long as I keep drinking enough this will reduce me waking up to pee every hour at night so it will help with the sleep. I must say all my Doctors are very happy with how well I am tolerating the Chemo & rumor has it I am their star patient on the ward right now. Between the Chromosomes & bouncing back from my low blood levels they are expecting good things.
My boss from ODH & my First Sergeant, Jim called me yesterday to let me know because I am in the hospital & will be for so long it may be possible for me to get 100% disability from work. There is no guarantee but if it happens that would ease my mind & Marc's. I am going to have to use 360 hours to supplement for 6 months if it does not go through & that will leave me with no time off when I go back to work (this is best case scenario that I am in remission within 6 months & able to go back) I knew I was saving my time for a reason but I also know there will be times even with remission that I will be sick & have to have treatments or tests so I do not want to burn all my time if I don't have to. Again there is no guarantee but a possibility so more potential good news.
Betsey came up & busted me out of my room
Alan always good for a laugh as you see here brought me Chipolte - a Carnita bowl. I loved every bite but paid for it later on, it was worth it though. Alan also brought along a grumpy Donnie they put too much rice on his burrito & it just ruined his lunch, Kim I do not know how you do it woman he is so spoiled. There is talk that Donnie & Alan are going to redo my shower for when I come home since Marcus has a lot on his plate. I am so grateful to have such good friends that are willing to help us.
My boss from ODH & my First Sergeant, Jim called me yesterday to let me know because I am in the hospital & will be for so long it may be possible for me to get 100% disability from work. There is no guarantee but if it happens that would ease my mind & Marc's. I am going to have to use 360 hours to supplement for 6 months if it does not go through & that will leave me with no time off when I go back to work (this is best case scenario that I am in remission within 6 months & able to go back) I knew I was saving my time for a reason but I also know there will be times even with remission that I will be sick & have to have treatments or tests so I do not want to burn all my time if I don't have to. Again there is no guarantee but a possibility so more potential good news.
Betsey came up & busted me out of my room we met up with Paula Parker & went for a walk later on we went shopping at CVS it felt great to not be hooked up to an IV Pole for the first time in over a week. Betsey also brought me a egg crate type of mattress pad It is making a huge difference already just when I am sitting in bed I can tell it will be better I can't wait to try it out tonight.
Alan always good for a laugh as you see here brought me Chipolte - a Carnita bowl. I loved every bite but paid for it later on, it was worth it though. Alan also brought along a grumpy Donnie they put too much rice on his burrito & it just ruined his lunch, Kim I do not know how you do it woman he is so spoiled. There is talk that Donnie & Alan are going to redo my shower for when I come home since Marcus has a lot on his plate. I am so grateful to have such good friends that are willing to help us.Marcus came up later in the afternoon he brought me in 2 cards one from David & Sue Bruno, I also got one from the entire Bureau of Public Health Preparedness at ODH. I can't believe how many people are pulling for me each day I realize how lucky I am to have such a great support system. Marc took me down to the gift shop where he got me a Chicken Webkinz (he thought it was a Rooster) & a little Ohio State bear for my room. We walked down to the Season's Cafe & I was getting pretty tired & out of breath so we had to turn around & come back up to the room. I was worried I had pushed myself to much. I sent Marcus home so I could go to sleep.
They changed my PICC dressing it was looking pretty rough with dried blood all over it, she scrubbed the heck out of it & my arm was nice & tender afterwards it is supposed to get changed every Friday night from now on. I asked for 2 Oxycodones & started watching the debates after that I was still not tired so I watched Sweet Home Alabama. Normally the Oxy's knock me out. I finally shut my eyes about 1:30 AM & slept until 5:20am this is very good, I have not slept that long since I have been here. It is usually no more than 2 hour increments.
Brandon has a date for Homecoming tomorrow so I should have some pictures of that to post in a couple of days. Katie is doing well in school I talked to them on Thursday they said she is starting to come out of her quiet shell & she really seems to enjoy taking the classes at the Academy. Zack was watching Zanthura & is just as talkative as ever. Paige went to the Homecoming game with Bubby & Misty sounded good on the phone. I think Spike has her wrapped around his paw he is so darn cute, I do not know why I was so worried about that but everything is running smooth at home & away. Tomorrow is a home game against Minnesota so I advise against anyone coming to see me the roads get shut down early & parking is next to impossible unless you park at the Ross garage. I say OH-IO & see y'all on Sunday don't brave the traffic it is not worth it. Marc did it last Saturday & it was terrible. I can go a day without visits it is OK I got a phone & internet.
I should be hitting my Nader in the next few days ( the Nader is my lowest point-lowest blood counts, very vulnerable to infection with no immune system & overall fatigue for 3 to 5 days)
It hasn't hit me yet so maybe it won't be as bad as they are telling me well have to see. My hair has not fell out yet either so who knows we are at day 9 since they strated the Chemo.
Friday, September 26, 2008
September 25, 2008
My day started off real bad, I have had major trouble sleeping & I think it finally caught up with me. I felt miserable, my back was so sore & I was up about every hour to pee or move positions. Needless to say it was a very restless night & I was drained when the sun came up.
My hemoglobin is holding pretty steady it went from 11.8 to 11.4 & my White Blood Cell count was still 1.1 but we are anticipating it is going to drop even more. Even after the Platelet infusion my platelets went from 12 to 14 but then dropped all the way down to 8 so I should be getting more on the 26th, they want to hold off on giving them to me tonight so they can see if my body will make any at all. It is not uncommon but if my body is not making them they are going to send my blood to the Red Cross & have it typed even further for specific platelets. I had no idea they could do that. My Phosphorus went from 6.0 to 4.5 which is good & my Creatinine went from .57 to .58 & my sodium dropped from 134 to 133. There was a lot more labs but those are the important changes they have been watching me for.
My hands were getting really dry & my left middle finger was hurting like I burnt it & looking like it was blistering so I tried the Silky Hands from Mary Kay that Paula Parker gave me & I noticed already that it does not hurt as much & it is not near as swollen either. So I am now a believer in Mary Kay, thank you Paula!
My post was short yesterday because I felt so bad, I must say though that 2 oxycodones later & a 2 hour nap & I felt like a brand new woman. I am trying not to take the oxycodones too much because they have an addictive trait to them but I also know that if I need them I need to take them. It is a fine line.
My First Sergeant came by this afternoon, Jim Felton. He is so good to me. He picked up my FMLA & Disability paperwork to turn into ODH on Friday & was also finally able to meet Marcus for the first time. I also sent home a piece of Humming Bird cake with him from Misty. He was teasing me that he was taking applications for a new undershirt just to get me going, was supposed to be moving over to the AMXS Squadron with him after October this year & cross training to a nonflying position. There is a lot that is still up in the air with my Military career & this Leukemia is a huge inconvenience. We will sort through it all, my plan is to kick this in the but with the best case scenario & get back to normal life in about 6 months or so.
Misty made Philly steak & cheese subs, Marcus brought 2 with him last night, they were so good, no tomato soup for me. I am sure I will pay for the grease later on but it was well worth it. We hung up some more cards that I got with donation numbers from donating blood, I am up to 16 donations in my name which is wonderful & more than I ever expected. I got more cards in general as well Thank you Ruth Gerding, Beverly Larue, Sally Hunter, Katie Miller, Jeanne Stillings, Elaine Walters, Dennie & Melinda Richmond, Randy & Becky Conley & Betsy Johnson. Marcus stayed with me until about 9 last night I didn't want him to leave but I kept falling asleep on him. Thank you everyone for everything!
My hemoglobin is holding pretty steady it went from 11.8 to 11.4 & my White Blood Cell count was still 1.1 but we are anticipating it is going to drop even more. Even after the Platelet infusion my platelets went from 12 to 14 but then dropped all the way down to 8 so I should be getting more on the 26th, they want to hold off on giving them to me tonight so they can see if my body will make any at all. It is not uncommon but if my body is not making them they are going to send my blood to the Red Cross & have it typed even further for specific platelets. I had no idea they could do that. My Phosphorus went from 6.0 to 4.5 which is good & my Creatinine went from .57 to .58 & my sodium dropped from 134 to 133. There was a lot more labs but those are the important changes they have been watching me for.
My hands were getting really dry & my left middle finger was hurting like I burnt it & looking like it was blistering so I tried the Silky Hands from Mary Kay that Paula Parker gave me & I noticed already that it does not hurt as much & it is not near as swollen either. So I am now a believer in Mary Kay, thank you Paula!
My post was short yesterday because I felt so bad, I must say though that 2 oxycodones later & a 2 hour nap & I felt like a brand new woman. I am trying not to take the oxycodones too much because they have an addictive trait to them but I also know that if I need them I need to take them. It is a fine line.
My First Sergeant came by this afternoon, Jim Felton. He is so good to me. He picked up my FMLA & Disability paperwork to turn into ODH on Friday & was also finally able to meet Marcus for the first time. I also sent home a piece of Humming Bird cake with him from Misty. He was teasing me that he was taking applications for a new undershirt just to get me going, was supposed to be moving over to the AMXS Squadron with him after October this year & cross training to a nonflying position. There is a lot that is still up in the air with my Military career & this Leukemia is a huge inconvenience. We will sort through it all, my plan is to kick this in the but with the best case scenario & get back to normal life in about 6 months or so.
Misty made Philly steak & cheese subs, Marcus brought 2 with him last night, they were so good, no tomato soup for me. I am sure I will pay for the grease later on but it was well worth it. We hung up some more cards that I got with donation numbers from donating blood, I am up to 16 donations in my name which is wonderful & more than I ever expected. I got more cards in general as well Thank you Ruth Gerding, Beverly Larue, Sally Hunter, Katie Miller, Jeanne Stillings, Elaine Walters, Dennie & Melinda Richmond, Randy & Becky Conley & Betsy Johnson. Marcus stayed with me until about 9 last night I didn't want him to leave but I kept falling asleep on him. Thank you everyone for everything!
Thursday, September 25, 2008
September 24, 2008
Chanie came to see me last night, she looks great, you can see all the red cross donation cards behind her on the door. She brought me 3 pairs of sweatpants & the shirts are in the works. We visited for hours it was like old times. She had to work the next day I felt bad she stayed until 11:00 I could have talked all night.
Paige Cheering
My bald headed boys! Look how chunky Zack is getting, he is definitely not missing any meals!
Everyone meet Spike, the newest addition to the Vest Family! He is the absolute cutest Boxer I think I have ever seen.I weighed in at 167 pounds & ended up having to get platelets after all. They went from 17 to 12 so I got another infusion. Niki & Ann from OSU came to see me, we had a really good visit, I miss them both so much since they are not at ODH anymore. (Niki I think I will take your advice, my capsule is a pearl color). I am realizing more each day just how unimportant work really is in the scheme of things. There is a a time & a place, for now its just not the time. Nothing new from the Doc's the last bag of Chemo is in & should come out around 11:30 tonight.
Wednesday, September 24, 2008
September 23, 2008
The Lasix was a success from yesterday they weighed me in at 173 pounds, I lost over 10 pounds during the night in water weight alone. I needed that even though it was a royal pain to be peeing every 15 minutes.
No blood products are needed today! My White Blood Cell Count is down to 1.6, but my hemoglobin is 11.1 & my platelets are 17 so I do not need an infusion yet, I don't get it unless it drops below 10. They are watching my Phosphorous levels now, they went from 3.4 to 6.1 so I am on 2 new horse pills 3x per day. They don't want my kidneys to shut down. My peripheral line was really hurting in my wrist last night, so I finally asked them to take it out. As much as I hate being stuck it was just to painful. Hopefully the PICC Line will do the job & they will not need to put in anymore lines or stick me. Sharon my Creatinine is .58, I get a copy of my labs every morning.
The Docs got our FMLA paperwork & my disability paperwork completed today. Marcus will turn his in tomorrow, I will need to get mine up to ODH. I still have not talked to Doc Ellis with the Med Squadron at the base yet to see what this does to me with the military. I guess I am nervous to know the answer still.
Kim came up last night, My head was hurting a little so I chickened out of shaving it, as much as I don't want it to fall out I don't want to shave it either, a crappy catch 22, either way it is coming off. Kim & I ate Misty's Humming Bird cake, those of you who have never had it, your missing out, it is really good. Marcus is supposed to be picking up our puppy tomorrow, I know Donnie is probably ready to give them all away. It should be interesting in the house, it has been so long since we have had a dog, but I thought it would be a good distraction for the kids & we have all been missing Coral for way to long.
They gave me an oxycodone in the afternoon for my back pain, it is the bed I think the middle is just wore out or something & I am not used to sleeping like this. Not to mention I get woke up about every other hour for blood draws & vitals or to hang a new bag. My Bastard IV machine is the loudest on the floor I swear.
Paige has a game Wednesday so Marcus won't be back up until Thursday I think. I guess Misty has not been feeling well & Zack was a grumpy butt. I am going to call the London Academy today to see how Brandon & Katie are doing on their school work since I have not seen their grades yet. Other than that there is not to much happening.
No blood products are needed today! My White Blood Cell Count is down to 1.6, but my hemoglobin is 11.1 & my platelets are 17 so I do not need an infusion yet, I don't get it unless it drops below 10. They are watching my Phosphorous levels now, they went from 3.4 to 6.1 so I am on 2 new horse pills 3x per day. They don't want my kidneys to shut down. My peripheral line was really hurting in my wrist last night, so I finally asked them to take it out. As much as I hate being stuck it was just to painful. Hopefully the PICC Line will do the job & they will not need to put in anymore lines or stick me. Sharon my Creatinine is .58, I get a copy of my labs every morning.
The Docs got our FMLA paperwork & my disability paperwork completed today. Marcus will turn his in tomorrow, I will need to get mine up to ODH. I still have not talked to Doc Ellis with the Med Squadron at the base yet to see what this does to me with the military. I guess I am nervous to know the answer still.
Kim came up last night, My head was hurting a little so I chickened out of shaving it, as much as I don't want it to fall out I don't want to shave it either, a crappy catch 22, either way it is coming off. Kim & I ate Misty's Humming Bird cake, those of you who have never had it, your missing out, it is really good. Marcus is supposed to be picking up our puppy tomorrow, I know Donnie is probably ready to give them all away. It should be interesting in the house, it has been so long since we have had a dog, but I thought it would be a good distraction for the kids & we have all been missing Coral for way to long.
They gave me an oxycodone in the afternoon for my back pain, it is the bed I think the middle is just wore out or something & I am not used to sleeping like this. Not to mention I get woke up about every other hour for blood draws & vitals or to hang a new bag. My Bastard IV machine is the loudest on the floor I swear.
Paige has a game Wednesday so Marcus won't be back up until Thursday I think. I guess Misty has not been feeling well & Zack was a grumpy butt. I am going to call the London Academy today to see how Brandon & Katie are doing on their school work since I have not seen their grades yet. Other than that there is not to much happening.
Tuesday, September 23, 2008
September 22, 2008
From the Kids visit last Sunday
We got real good news today from the Doc's my preliminary chromagenial results came in & there is a good link between my chromosomes 8 & 21. So what that means is there is a chance that the 3 rounds of Chemo alone may work to put the Leukemia in remission. Of course this is very preliminary but still it is very good news, it makes my prognosis a lot better. They said out of all the cases they get every year they maybe only see this 4 times per year. They still want to type my sister Sharon to see if she is a match for a Bone Marrow Transplant but this is more for insurance in case the Chemo does not work. We will know more about this at the 4 week mark.Today I was so puffy with water retention & was up to 183 pounds, the Doc put me on Lasix, needless to say about every 15-20 minutes I was going to the bathroom. I feel like I lost about 10 pounds in water weight alone. I filled up the pee hat at least 12 times I think.
Donnie & Alan (Krome & Gump) came to see me today, they looked so cute in their papa smurf outfits don't ya think, they put the gowns on backwards. I went outside with them for a little bit, it was so nice out & warm but it really wore me out so I came back up & laid down for a little while.
They had the blood drive at ORW today, Beverly McKinley said they had about 30 people show up but not all could donate, I still think that is a good turn out. They sent up cards from the red cross with their donation numbers I had Marc help me tape them up all over my door.
I did not have to get any blood products today so with the donation numbers I am actually 5 bags in the bank, I have only used 8 bags of blood total so far, but if you count the platelets I am even up since I have had 5 bags of platelets total I think, it is all kinda sorta running together.
Chanie called me & is working on getting me some scrubs with Velcro on them so I do not have to fight the IV lines as much. Elaine said she would make some to. Chaine may come up Wednesday night & Elaine is going to come up with Dad Sunday I think.
I cannot express enough how thankful I am for the outpouring of support from everyone. It just amazes me everyday & I ma lucky to have such good friends & a loving family, there are so many people that do not have a good support system & I truly believe it will get me through this.
Marc came up to see me last night, he brought me clean clothes & took home my dirty ones, man they smelled bad. If he leaves them in the car he will know it in the morning. He also got a fan for under my laptop so it will not over heat. He put my clean clothes away... I just don't know how I would get through this without him, he has really been my rock & now more then ever even me little miss independent must admit I would be lost without him. I love him so much.
Brandon went to the Dr. he does not have strep but some type of virus so he cannot come see me for awhile. Misty made me a hummingbird cake, I had Marc put in in my fridge for tomorrow, the plan is to shave my head tomorrow so the cake should be good soul food for afterwards. Kim is going to come do it for me. I just can't do it myself. I am going to try to take some pictures, and make some fun out of it, might give myself a a big mohawk or something first.
I am having a real hard time concentrating on typing I got some oxycodone for my back this bed is tearing me up I can't get comfortable in it, only 2 more nights of Chemo to go, I cannot wait to get off the IV's!!! Maybe I will sleep better then.
Monday, September 22, 2008
September 21, 2008
My hemoglobin got down to 7.9 so I got 2 units of blood today along with another bag of platelets since they were around 7 also. I guess that means the Chemo is doing what it is supposed to. Marc got to go ride with the club today down to Ohio Caverns, I am sure it was a much needed retreat. Donnie rode my bike since his forward controls broke, I told Marc to make sure Donnie blows my carbs out.
Dad made it up for a visit, it was good to see him, I know he was not comfortable seeing me like this though. MSgt Drake & his wife Desiree also came up to see me. Among other things Joe gave me his Air Force Marathon Medal which got my tear ducts rolling, I didn't want to take it from him, but I knew he wouldn't let me refuse it either. Maybe next year I can do the 5k with them, well see. I was able to go outside for about 20 minutes before everyone left, the weather was so warm, I would not have known that from looking out the window.
I have been real restless & having a hard time getting comfortable in the bed, they gave me an oxycodone for pain & an ambien later to help me sleep & needless to say I woke up because I had to pee but it was already to late, now that sucked!!! I won't be doing that cocktail anymore.
Tomorrow is the Blood Drive at ORW, I am so happy they are doing one. I hope there is a good turn out the blood banks are all running real low.
I love reading every one's comments on the blog it gives me something to check during the day. So please keep them coming, I don't feel so alone in this fight with all your support.
Dad made it up for a visit, it was good to see him, I know he was not comfortable seeing me like this though. MSgt Drake & his wife Desiree also came up to see me. Among other things Joe gave me his Air Force Marathon Medal which got my tear ducts rolling, I didn't want to take it from him, but I knew he wouldn't let me refuse it either. Maybe next year I can do the 5k with them, well see. I was able to go outside for about 20 minutes before everyone left, the weather was so warm, I would not have known that from looking out the window.
I have been real restless & having a hard time getting comfortable in the bed, they gave me an oxycodone for pain & an ambien later to help me sleep & needless to say I woke up because I had to pee but it was already to late, now that sucked!!! I won't be doing that cocktail anymore.
Tomorrow is the Blood Drive at ORW, I am so happy they are doing one. I hope there is a good turn out the blood banks are all running real low.
I love reading every one's comments on the blog it gives me something to check during the day. So please keep them coming, I don't feel so alone in this fight with all your support.
Sunday, September 21, 2008
September 20, 2008
Marcus braved the traffic for the first OSU home game of the season to come see me today. They already had the streets closed off at 9:00 AM but he made it through somehow. He keeps spoiling me too by stopping down in the Lobby at the Cheryl Cookie store on his way up to my room. This morning it was raspberry muffins & a pumpkin spice cake with cream cheese icing. As if my swelling from all the fluids is not enough I am going to be big as a house.
We had a good visit but the game had started so I sent him to the clubhouse to watch it. I know he would of sat with me but he needs to get away & take some time for himself too.
Misty told me the color I picked out for the foyer & stairwell is turning out beautiful, Jan Wolverton & her crew are paining it for me, I had it planned before all this happened so I cannot wait to see what it looks like when its finished. I will finally be able to hang the pictures up in the stairwell.
I fell asleep halfway through the OSU game & woke up to see they won it but it sure wasn't pretty. It is going to be a long season this year I think. The rest of my night didn't go much better. I had a had time getting comfortable, I am so bloated from the fluids That it makes my upper abdomen hurt real bad no matter how I sit or lay. The Dr.s did cut back some of the fluids in half except the Chemo. Tonight we have Cytarabine 24/7 only for Chemo so that may help with this bloating & pain since the other 2 chemo drugs are done until the next go round, we will see.
My Dad is supposed to come up & see me from Lima tomorrow, he hates hospitals, understandably so - my mother died in one a long time ago so I do not know how he is going to handle seeing me like this. MSgt Drake & his wife are also planning on coming up sometime tomorrow afternoon as well. I am looking forward to both of these visits.
My hemoglobin has started to drop so they are watching that, I may have to get some infused later tonight or tomorrow we shall see. They said my levels would start dropping with the Chemo.
We had a good visit but the game had started so I sent him to the clubhouse to watch it. I know he would of sat with me but he needs to get away & take some time for himself too.
Misty told me the color I picked out for the foyer & stairwell is turning out beautiful, Jan Wolverton & her crew are paining it for me, I had it planned before all this happened so I cannot wait to see what it looks like when its finished. I will finally be able to hang the pictures up in the stairwell.
I fell asleep halfway through the OSU game & woke up to see they won it but it sure wasn't pretty. It is going to be a long season this year I think. The rest of my night didn't go much better. I had a had time getting comfortable, I am so bloated from the fluids That it makes my upper abdomen hurt real bad no matter how I sit or lay. The Dr.s did cut back some of the fluids in half except the Chemo. Tonight we have Cytarabine 24/7 only for Chemo so that may help with this bloating & pain since the other 2 chemo drugs are done until the next go round, we will see.
My Dad is supposed to come up & see me from Lima tomorrow, he hates hospitals, understandably so - my mother died in one a long time ago so I do not know how he is going to handle seeing me like this. MSgt Drake & his wife are also planning on coming up sometime tomorrow afternoon as well. I am looking forward to both of these visits.
My hemoglobin has started to drop so they are watching that, I may have to get some infused later tonight or tomorrow we shall see. They said my levels would start dropping with the Chemo.
Saturday, September 20, 2008
September 19,2008
What a busy day, I woke up in a good mood with some mild chest pain or indigestion I am not sure which. Chaplin Kollmann came to see me we had a very good visit, I not the most religious person in the world but I really like the Chaplin, he is down to earth & really cool. Plus he rides a motorcycle LOL. After he left I got cleaned up & went on a search for Tressell & the Buckeye players they said they were in the hospital but I never did find them. I ended up getting paged back to my room for a chest x-ray. That took about an hour or so I think my transporter forgot to come pick me up. When I got back to the room they told me my Platelet count was 35, which is pretty good for me here lately.
I talked to Kim Davies & then my Dad called he wants to come down tomorrow but with this being the first home game of the season I told him that traffic would be a nightmare he would be better to come on Sunday.
Angie Hunsinger & Paula Parker from ORW came up to visit for a little bit, they also brought up some more cards. I really miss the people at ORW. I can't believe it has been almost 2 years since I left.
Marc brought all 4 of the kids up at once what a surprise, They stopped & got cookies & candy down stairs, he also brought me more cards from the house, some speakers for my laptop & an arm band for my I Pod for when I am walking, he also brought back my clean laundry & the paint samples for the stairwell to get painted tomorrow, my Missing Link vest too & hung it in my window. He has been so sweet to me through this. It was cute to watch them all get dressed up in their gowns & gloves. Zack had a little Dr. Bag with him & had t0 practice playing Dr. on me, it was to funny. The nurse drew my Platelets while everyone was there & they had dropped down to 9 so I had to get 2 bags of Platelets infused.
Katie seemed kinda in shock to see me like this & wouldn't say to much, Brandon was busy trying to keep Zack from getting into stuff & Paige was just real quiet. I could tell Marc was stressed & I started not feeling to well & Zack was getting restless so Marc rounded them all up to go home. I had a hard time when they were all leaving & didn't want them to go, so Marc sent the kids out in the hallway after they said goodbye & I just couldn't hardly bear to see them leave. Paige started crying & well I just couldn't hold it together anymore. Marc put me to bed & they all left.
My night was rough after that I had a lot of upper abdomen pain & nausea & just felt horrible, hopefully I will get it out of my system so I do better tomorrow.
Sandi
I talked to Kim Davies & then my Dad called he wants to come down tomorrow but with this being the first home game of the season I told him that traffic would be a nightmare he would be better to come on Sunday.
Angie Hunsinger & Paula Parker from ORW came up to visit for a little bit, they also brought up some more cards. I really miss the people at ORW. I can't believe it has been almost 2 years since I left.
Marc brought all 4 of the kids up at once what a surprise, They stopped & got cookies & candy down stairs, he also brought me more cards from the house, some speakers for my laptop & an arm band for my I Pod for when I am walking, he also brought back my clean laundry & the paint samples for the stairwell to get painted tomorrow, my Missing Link vest too & hung it in my window. He has been so sweet to me through this. It was cute to watch them all get dressed up in their gowns & gloves. Zack had a little Dr. Bag with him & had t0 practice playing Dr. on me, it was to funny. The nurse drew my Platelets while everyone was there & they had dropped down to 9 so I had to get 2 bags of Platelets infused.
Katie seemed kinda in shock to see me like this & wouldn't say to much, Brandon was busy trying to keep Zack from getting into stuff & Paige was just real quiet. I could tell Marc was stressed & I started not feeling to well & Zack was getting restless so Marc rounded them all up to go home. I had a hard time when they were all leaving & didn't want them to go, so Marc sent the kids out in the hallway after they said goodbye & I just couldn't hardly bear to see them leave. Paige started crying & well I just couldn't hold it together anymore. Marc put me to bed & they all left.
My night was rough after that I had a lot of upper abdomen pain & nausea & just felt horrible, hopefully I will get it out of my system so I do better tomorrow.
Sandi
Friday, September 19, 2008
September 18,2008
Today was interesting, another researcher came in & put me on Valtrex...no I do not have Herpes, they are using it for some pulmonary clinical trial along with 2 other medicines, I can't remember the names at the moment but one is a white chalky mix that tastes liked a mix of the white powder on donuts & plain chap stick in a liquid form, it's kinda wild. So I am basically a guinea pig for that trail. My PICC line has been oozing since they changed it 2 days ago so I had to put a sand bag on it. My Platelets got down to 10 so I got another platelet infusion.
Chaplin Kollmann from the 445th has been wonderful, he is bringing me some paperwork I requested from the JAG & going to see if some of the squadron member want to ride up with him to see me tomorrow.
MSgt Drake called as well he is running in the Air Force Marathon with his wife on the 5k & then going to continue on, I wish him the best of luck, same to Major Sandusky to. MSgt Larue got ahol of me all the way from Germany too.
Kim Davies came to see me, we walked down to Wendy's & she bought my dinner, we took it out to the courtyard in front if the James now that was an adventure with my IV cart. (they call my cart Baxter, I call him Bastard now)I almost knocked him over 3 times on uneven parts of the side walk, you know me I get moving to fast. Marcus also came up & brought Brandon (Bubby) with him so it really made me feel good to have all the company. After Kim left I went down with Marcus & Bubby to the conference room & played a few rounds of Guitar Hero, Of course Brandon spanked us all, it was fun though.
Marcus brought me up a lot of cards from people. I cannot say thank you enough for the outpouring of support. ORW sent a beautiful card & Bev McKinley is coordinating the details to hold a Blood Drive in my name there & C. Rhinehart is trying to get the stitching post to make me some shirts that can be unbuttoned or Velcro on the side for my IV access so I don't have to keep wearing theses hospital gowns. It took me 20minutes to get out of my shirt for my shower the other day & I had to get my big but through the right sleeve, it was sight to behold I am sure NOT! The 445th AES sentanother card with a Kroger gift card to help out that is so appreciated, the kids sent me a card & so did Misty & my neighbors. This is not counting all the cards that I got the first go round when I was admitted at Mount Carmel. I just appreciate all my family, my extended families & friends. You all are keeping me in high spirits & we will get through this.
Tomorrow takes us to day 3 of Chemo treatment hopefully one more day or say of the orange cool aid pee then we have 4 more days of the Cytarabine 24/7 .
Sandi
Chaplin Kollmann from the 445th has been wonderful, he is bringing me some paperwork I requested from the JAG & going to see if some of the squadron member want to ride up with him to see me tomorrow.
MSgt Drake called as well he is running in the Air Force Marathon with his wife on the 5k & then going to continue on, I wish him the best of luck, same to Major Sandusky to. MSgt Larue got ahol of me all the way from Germany too.
Kim Davies came to see me, we walked down to Wendy's & she bought my dinner, we took it out to the courtyard in front if the James now that was an adventure with my IV cart. (they call my cart Baxter, I call him Bastard now)I almost knocked him over 3 times on uneven parts of the side walk, you know me I get moving to fast. Marcus also came up & brought Brandon (Bubby) with him so it really made me feel good to have all the company. After Kim left I went down with Marcus & Bubby to the conference room & played a few rounds of Guitar Hero, Of course Brandon spanked us all, it was fun though.
Marcus brought me up a lot of cards from people. I cannot say thank you enough for the outpouring of support. ORW sent a beautiful card & Bev McKinley is coordinating the details to hold a Blood Drive in my name there & C. Rhinehart is trying to get the stitching post to make me some shirts that can be unbuttoned or Velcro on the side for my IV access so I don't have to keep wearing theses hospital gowns. It took me 20minutes to get out of my shirt for my shower the other day & I had to get my big but through the right sleeve, it was sight to behold I am sure NOT! The 445th AES sentanother card with a Kroger gift card to help out that is so appreciated, the kids sent me a card & so did Misty & my neighbors. This is not counting all the cards that I got the first go round when I was admitted at Mount Carmel. I just appreciate all my family, my extended families & friends. You all are keeping me in high spirits & we will get through this.
Tomorrow takes us to day 3 of Chemo treatment hopefully one more day or say of the orange cool aid pee then we have 4 more days of the Cytarabine 24/7 .
Sandi
Thursday, September 18, 2008
September 17, 2008
News Flash: I have moved, my new room is on the 10th Floor yea the kids can come up & tomorrow night they have guitar hero in the lounge, My Room # is 1053 The new room phone number is (614) 293-5903.
My Hemoglobin is 10.4 & my Platelet Count 25. Weighed in at 168lbs, don't know how that happened I was 174 when I signed in. I am still a big girl at the moment but thought I might start keeping an eye on my weight also.
Dr. John my Floor Doc came to see me before lunch today & let me know all my visitors get to dress up like Easter Eggs - yellow gowns & purple gloves. I am currently on contact precautions. They tested me (mouths & buts every Monday on the 3rd floor whoopee) & I am a carrier of VRE - Vancomycin-Resistant Enterococcus. Enterococcus are bacteria that live in the digestive and genital tracts. They are normally benign and don't cause any problems in healthy people. Vancomycin is a powerful antibiotic that is often the antibiotic of last resort. It is generally limited to use against bacteria that are already resistant to penicillin and other antibiotics. VRE is a mutant strain of Enterococcus that originally developed in individuals who were exposed to the antibiotic. Although VRE generally doesn't affect healthy people, anyone who comes in contact with the bacteria can become a carrier. Once you become a carrier (I am a carrier at the moment they are trying to clear me this week), you can easily spread the bacteria to friends and family. In addition, if you become a chronic carrier of VRE, you could easily become infected when you are older or in declining health. It's particular important to avoid becoming a carrier if you share a home with those at risk - the very young, the very old or the very ill. OK enough of that.
Even though I am on the contact precautions in my room, I am allowed to go out side of it with the only precaution of washing my hands when I return, go figure so I did a jail break today & went out on Campus for about a mile walk. There is a nice little spot called Mirror lake that is not to far away & the gyro stand right outside the James smells delicious at lunch time. My Doc said I do need to get out & walk when I am up to it. On my way back to the room I got a call from Molly Fitzpatrick my friend in London their electric is still out & is not expected to be back on until this Saturday! Angie Hunsinger one of my old bosses & friend also called me this afternoon she is bringing up Paula Parker & Mrs. Roush on Friday after work I think.And my Katy Putt called, man how I do miss the old days in ARN 4 between Kitchen.Chestnut & Hunter there was never a dull day. I hope to see you soon Kathy but take care of yourself first.
I know this post is long I got a lot of information tonight. Some of the results are in. They confirmed what I already know AML - M2, They were able to determine that I am FLIP 3 negative-this is a good thing they said. About the 10th day into my Chemo treatment we will have all of the chromogenyal results that will impact my prognosis.
Here is my current chemo cocktail they started at 9pm. I got a nice cup full of 7 medications at 8:30 to prep me- Ativan, Decadron & Zofron
Treatment------1234567
Cytarabine----- xxxxxxx 24/7 via IV
Daunorubicin ---xxx via IV
Etoposide -------xxx via IV
My First Sergent, Master Sergeant James Felton came up to see me last night. After a brief navigation tutiorial, I was able to talk him in to the 12th street garage parging lot, (It has parking for $2.00 if you as for the green ticket at the reception desk. He brought me a few things I really wanted in my room from my desk at work (pictures of the family). We walked down to Wendy's it is litterraly on the ground floor rightg outside the James elevator doors. He keeps me on my toes, no negativity. I got a little week a coupl of times but I blamed it on the Chemo Drugs. I think he left around midnight I could not remember I got tired so fast & could not stay awake any longer. It was a great visist.
My Hemoglobin is 10.4 & my Platelet Count 25. Weighed in at 168lbs, don't know how that happened I was 174 when I signed in. I am still a big girl at the moment but thought I might start keeping an eye on my weight also.
Dr. John my Floor Doc came to see me before lunch today & let me know all my visitors get to dress up like Easter Eggs - yellow gowns & purple gloves. I am currently on contact precautions. They tested me (mouths & buts every Monday on the 3rd floor whoopee) & I am a carrier of VRE - Vancomycin-Resistant Enterococcus. Enterococcus are bacteria that live in the digestive and genital tracts. They are normally benign and don't cause any problems in healthy people. Vancomycin is a powerful antibiotic that is often the antibiotic of last resort. It is generally limited to use against bacteria that are already resistant to penicillin and other antibiotics. VRE is a mutant strain of Enterococcus that originally developed in individuals who were exposed to the antibiotic. Although VRE generally doesn't affect healthy people, anyone who comes in contact with the bacteria can become a carrier. Once you become a carrier (I am a carrier at the moment they are trying to clear me this week), you can easily spread the bacteria to friends and family. In addition, if you become a chronic carrier of VRE, you could easily become infected when you are older or in declining health. It's particular important to avoid becoming a carrier if you share a home with those at risk - the very young, the very old or the very ill. OK enough of that.
Even though I am on the contact precautions in my room, I am allowed to go out side of it with the only precaution of washing my hands when I return, go figure so I did a jail break today & went out on Campus for about a mile walk. There is a nice little spot called Mirror lake that is not to far away & the gyro stand right outside the James smells delicious at lunch time. My Doc said I do need to get out & walk when I am up to it. On my way back to the room I got a call from Molly Fitzpatrick my friend in London their electric is still out & is not expected to be back on until this Saturday! Angie Hunsinger one of my old bosses & friend also called me this afternoon she is bringing up Paula Parker & Mrs. Roush on Friday after work I think.And my Katy Putt called, man how I do miss the old days in ARN 4 between Kitchen.Chestnut & Hunter there was never a dull day. I hope to see you soon Kathy but take care of yourself first.
I know this post is long I got a lot of information tonight. Some of the results are in. They confirmed what I already know AML - M2, They were able to determine that I am FLIP 3 negative-this is a good thing they said. About the 10th day into my Chemo treatment we will have all of the chromogenyal results that will impact my prognosis.
Here is my current chemo cocktail they started at 9pm. I got a nice cup full of 7 medications at 8:30 to prep me- Ativan, Decadron & Zofron
Treatment------1234567
Cytarabine----- xxxxxxx 24/7 via IV
Daunorubicin ---xxx via IV
Etoposide -------xxx via IV
My First Sergent, Master Sergeant James Felton came up to see me last night. After a brief navigation tutiorial, I was able to talk him in to the 12th street garage parging lot, (It has parking for $2.00 if you as for the green ticket at the reception desk. He brought me a few things I really wanted in my room from my desk at work (pictures of the family). We walked down to Wendy's it is litterraly on the ground floor rightg outside the James elevator doors. He keeps me on my toes, no negativity. I got a little week a coupl of times but I blamed it on the Chemo Drugs. I think he left around midnight I could not remember I got tired so fast & could not stay awake any longer. It was a great visist.
Tuesday, September 16, 2008
September 16, 2008
I received 2 platelet transfusions today bringing my count up to 42. I also had an EKG & a resting heart stress test (they called it something that starts with an M) to establish my baseline, I will have another one after the chemo treatments to see if it alters my heart. They said my heart looks good & my chest X ray was good also. All in all it was a pretty boring day, I am currently on Oxycodone to help reduce the pain from the Bone Marrow Biopsy. Tomorrow should be interesting, I should get the results from the Biopsy, find out what Clinical Trial I will be in & start Chemotherapy. We will see if this happens, everything is subject to change.
Cody Linder came to visit me tonight, we had a good visit. I was not sure how I would feel about visits but I must admit it really lifted my spirits & took my mind off of things. I had Marc stay home tonight & be with the kids. The lack of sleep is catching up with him so hopefully he will go to bed early. Paige has her first home cheer leading game tomorrow as long as the schools open back up, I told Marcus to go to the game & take some pictures for me. I hope for Misty's sake they open the schools back up, I am sure the kids are driving her crazy by now. Marcus said the Internet is still down oat the house so I am glad I have the Wifi in my room.
My dinner was horrible tonight mushroom soup, peas & some nasty looking noodle crap, Marc did not want to tell me Misty cooked a ham & mashed potatoes I am so jealous, my primary care attendant felt so bad I wasn't eating he went & made me a grilled cheese & tomato soup, it was good just like grandma used to make I know if nothing else I could eat that every day. OK I am outta stuff to say so I will let you all know what's happening tomorrow.
Sandi
Cody Linder came to visit me tonight, we had a good visit. I was not sure how I would feel about visits but I must admit it really lifted my spirits & took my mind off of things. I had Marc stay home tonight & be with the kids. The lack of sleep is catching up with him so hopefully he will go to bed early. Paige has her first home cheer leading game tomorrow as long as the schools open back up, I told Marcus to go to the game & take some pictures for me. I hope for Misty's sake they open the schools back up, I am sure the kids are driving her crazy by now. Marcus said the Internet is still down oat the house so I am glad I have the Wifi in my room.
My dinner was horrible tonight mushroom soup, peas & some nasty looking noodle crap, Marc did not want to tell me Misty cooked a ham & mashed potatoes I am so jealous, my primary care attendant felt so bad I wasn't eating he went & made me a grilled cheese & tomato soup, it was good just like grandma used to make I know if nothing else I could eat that every day. OK I am outta stuff to say so I will let you all know what's happening tomorrow.
Sandi
Monday, September 15, 2008
September 15, 2008
I am admitted at OSU James Cancer Hospital, I am on the 3rd floor room # 358 currently but they plan to move me up to the 10th floor when they get an open bed. The room phone number is (614) 293-3414. My cell is currently working up here as well & I have Wifi so I can update this unless I am really out of it.
Today I got a very lengthy Bone Marrow Biopsy, they took 4 pieces of bone & I think 7 samples of the actual bone marrow. The Lab stuck me 4 times, they drew 19 tubes of blood for my admission & clinical trials. My Platelet count is 11 & my WBC count was 22 so I should be getting some platelets tonight.
I am getting a PICC (Peripherally inserted central catheter) tonight, this should reduce the amount of times they have to stick me, unless I get a fever or need a special test. My Chemotherapy is being held off until Wednesday the Dr.s are waiting on my Chromosome analysis results to determine which clinical trial I will participate in.
Marcus is drained he did not sleep well last night so I sent him home & there is no sense in him sitting up here staring at me. The kids all kissed me goodbye this morning & were sad but holding it together. I am so upset they cannot come see me on this floor however once I get up on the 10th floor they should be able to come see me.
They are checking into designated blood donations for me, there are so many factors that go into if I can have someones blood so I strongly encourage you to donate at you closest red cross or Blood Donation facility, I will be getting so much blood & platelets there is a very good chance I could get yours if you donate.
Thank you everyone for your prayers & support,
Sandi
Today I got a very lengthy Bone Marrow Biopsy, they took 4 pieces of bone & I think 7 samples of the actual bone marrow. The Lab stuck me 4 times, they drew 19 tubes of blood for my admission & clinical trials. My Platelet count is 11 & my WBC count was 22 so I should be getting some platelets tonight.
I am getting a PICC (Peripherally inserted central catheter) tonight, this should reduce the amount of times they have to stick me, unless I get a fever or need a special test. My Chemotherapy is being held off until Wednesday the Dr.s are waiting on my Chromosome analysis results to determine which clinical trial I will participate in.
Marcus is drained he did not sleep well last night so I sent him home & there is no sense in him sitting up here staring at me. The kids all kissed me goodbye this morning & were sad but holding it together. I am so upset they cannot come see me on this floor however once I get up on the 10th floor they should be able to come see me.
They are checking into designated blood donations for me, there are so many factors that go into if I can have someones blood so I strongly encourage you to donate at you closest red cross or Blood Donation facility, I will be getting so much blood & platelets there is a very good chance I could get yours if you donate.
Thank you everyone for your prayers & support,
Sandi
September 14, 2008
I could not have asked for a better weekend.
Saturday I got to ride 90 miles on my bike during the Columbus Big Bucks Poker Run, of course I didn't win the big bucks & no one wanted me to ride but I did anyway without incident. Later that night the kids got to come out to the London MLMC Clubhouse to watch the OSU game. WE all had a good time & the food was great the game sucked!!!
Sunday Marc & I did some last minute shopping for the house since I will not be home for a month. Later the storm blew in & took out the electric. We had cold cuts for dinner, I was reallying looking forward to Misty's cooking but the weather did not cooperate & everyone went to bed early. Tomorrow we go to OSU at 10:00am I will update you later.
Sandi
Saturday I got to ride 90 miles on my bike during the Columbus Big Bucks Poker Run, of course I didn't win the big bucks & no one wanted me to ride but I did anyway without incident. Later that night the kids got to come out to the London MLMC Clubhouse to watch the OSU game. WE all had a good time & the food was great the game sucked!!!
Sunday Marc & I did some last minute shopping for the house since I will not be home for a month. Later the storm blew in & took out the electric. We had cold cuts for dinner, I was reallying looking forward to Misty's cooking but the weather did not cooperate & everyone went to bed early. Tomorrow we go to OSU at 10:00am I will update you later.
Sandi
Thursday, September 11, 2008
September 11, 2008
Sandi's Blood Type is O Positive
Thank you all so much for the overwhelming support. Things are changing each day. The James Cancer Hospital called today & now I am going to the Clinic on the 11th floor at 10am on Monday the 15th & willl be admitted after seeing my new Dr. Allison Walker. I have been forewarned there will be a whirlwind of activities to follow. They are going to put me under & insert my chest port. I also have to get another Bone Marrow Biopsy.... they said they want to do their own, I am really not happy about this I asked them to do it while I was knocked out for the chest port but they said they cannot do it like that. Later on that day they are going to start the first Chemotherapy treatment & another Blood Transfusion.
I am adding the Link to James Cancer Hospital. I am allowed visitors 24 hours a day 7 days a week, there is no restriction on the number of visitors. So don't be a stranger, they encourage visitors to come up & support people through this difficult process. They say no visitors under 18 (but I can & will negotiate this once I get up on the floor) a lot depends on how sick I am.
I will end up in a private room on the 10th floor of the James, The room is supposed to have a TV, DVD player & mini fridge along with a recliner for overnight guests. Marcus will update the Blog the morning of the 16th before he goes back to work with my room information & telephone number. Odds are my cell phone is not going to work in the room due to the telemetry equipment. I am hoping for WiFi so I can update this blog myself but this is all still up in the air for now, so plan for Marcus to update it the first few days I am in the hospital. For those of you who know Marcus I don't know what he will put but I am sure it will be interesting...
Parking sucks your best & cheapest bet if you come to visit me is use the Valet service $5.00 they park it & bring it back weather it is 5 minutes or 24 hours it is still $5.00. There is no free parking anywhere sorry.
Other than that I got my 4 pack of platelet's transfused today through my hand. The nurse went fishing in my left forearm first & I have one heck of a bruise that is really swollen, I think all the platelets I got went straight to it.
My e-mail is filling up fast so if you could please leave comments here unless it is something really personal. Thanks for the support, Sandi
Thank you all so much for the overwhelming support. Things are changing each day. The James Cancer Hospital called today & now I am going to the Clinic on the 11th floor at 10am on Monday the 15th & willl be admitted after seeing my new Dr. Allison Walker. I have been forewarned there will be a whirlwind of activities to follow. They are going to put me under & insert my chest port. I also have to get another Bone Marrow Biopsy.... they said they want to do their own, I am really not happy about this I asked them to do it while I was knocked out for the chest port but they said they cannot do it like that. Later on that day they are going to start the first Chemotherapy treatment & another Blood Transfusion.
I am adding the Link to James Cancer Hospital. I am allowed visitors 24 hours a day 7 days a week, there is no restriction on the number of visitors. So don't be a stranger, they encourage visitors to come up & support people through this difficult process. They say no visitors under 18 (but I can & will negotiate this once I get up on the floor) a lot depends on how sick I am.
I will end up in a private room on the 10th floor of the James, The room is supposed to have a TV, DVD player & mini fridge along with a recliner for overnight guests. Marcus will update the Blog the morning of the 16th before he goes back to work with my room information & telephone number. Odds are my cell phone is not going to work in the room due to the telemetry equipment. I am hoping for WiFi so I can update this blog myself but this is all still up in the air for now, so plan for Marcus to update it the first few days I am in the hospital. For those of you who know Marcus I don't know what he will put but I am sure it will be interesting...
Parking sucks your best & cheapest bet if you come to visit me is use the Valet service $5.00 they park it & bring it back weather it is 5 minutes or 24 hours it is still $5.00. There is no free parking anywhere sorry.
Other than that I got my 4 pack of platelet's transfused today through my hand. The nurse went fishing in my left forearm first & I have one heck of a bruise that is really swollen, I think all the platelets I got went straight to it.
My e-mail is filling up fast so if you could please leave comments here unless it is something really personal. Thanks for the support, Sandi
Wednesday, September 10, 2008
September 10, 2008
So we went to see Dr. Rhodes today at the Zangmeister center in Columbus after several days of not knowing anything specific. Vitals were 149/96 BP, 98.6 T. Labs were Hemoglobin 10.4 & Platelet Count 10.
We got the Bone Marrow Biopsy results back & the Official Diagnosis is Acute Myelogenous Leukemia (AML) Subtype myeloblastic leukemia (M2). That is a mouthful. After we were told the treatment Marc said that our bump in the road has changed to a large pot hole.
The standard treatment consists of combined chemotherapy in the hospital - 3 days by IV - 1hour each day & an additional 7 days by IV for 24 hours. I will also have a surgery for a chest port to be inserted for this due to the large number of blood draws & transfusions. The 7 day IV chemo treatment will kill all of the white blood cells among other things & my body will drop to a zero immune capability. I will be on continuous blood transfusions throughout the hospital stay. Because of all this I cannot go home afterwards and will have to spend an additional 3 weeks give or take in the hospital to rebuild my immune system. If all is well after that I get to go home for 2 months give or take. This treatment is a series of three so we get to do it all over again 1 month in the hospital maybe 2 months at home, and again one last time supposedly then I will get a get out of jail free card I hope. If this does not work the next option for treatment is a Bone Marrow transplant, it is very difficult to find a match for this & success rates are about 60%. Lastly if neither work the Dr. said 2 years max (which is not an option for the record).
Obviously we were not expecting this, I did not take it so well. I do not know what I was thinking maybe a few days treatment, be sick then back to work of course long term series of this but I had no idea it would be this extreme.
Dr. Rhodes referred us to the James Cancer Hospital at OSU, I have an appointment to see a Dr. Walker next Wednesday the 17th. He wanted me to go to the James tomorrow but also stated when you go they want to admit you that day & start treatment right away so I said NO, so Wednesday it is. I have to go to Mount Carmel West for a 4 pack of platelets tomorrow morning. The treatment may change depending on what the James Cancer Hospital wants to do.
Marcus is very stressed & trying not to show it, I am a basket case crying one minute & a zombie the next. Misty is vigorously cleaning everything in the house she is so upset. But it could be worse in all honesty. The kids are going to be OK, we have talked to them obviously Zack is too little to understand. I will update you all later through the blog.
On a positive note if anyone would like to donate blood in my name they can do so through the dedicated doner program at the Red Cross you have to give them my name when you do it & they will see if it is a match, if it is not please still donate, the blood & platelet transfusions are what is keeping me alive along with all of your Love & support.
Sandi
We got the Bone Marrow Biopsy results back & the Official Diagnosis is Acute Myelogenous Leukemia (AML) Subtype myeloblastic leukemia (M2). That is a mouthful. After we were told the treatment Marc said that our bump in the road has changed to a large pot hole.
The standard treatment consists of combined chemotherapy in the hospital - 3 days by IV - 1hour each day & an additional 7 days by IV for 24 hours. I will also have a surgery for a chest port to be inserted for this due to the large number of blood draws & transfusions. The 7 day IV chemo treatment will kill all of the white blood cells among other things & my body will drop to a zero immune capability. I will be on continuous blood transfusions throughout the hospital stay. Because of all this I cannot go home afterwards and will have to spend an additional 3 weeks give or take in the hospital to rebuild my immune system. If all is well after that I get to go home for 2 months give or take. This treatment is a series of three so we get to do it all over again 1 month in the hospital maybe 2 months at home, and again one last time supposedly then I will get a get out of jail free card I hope. If this does not work the next option for treatment is a Bone Marrow transplant, it is very difficult to find a match for this & success rates are about 60%. Lastly if neither work the Dr. said 2 years max (which is not an option for the record).
Obviously we were not expecting this, I did not take it so well. I do not know what I was thinking maybe a few days treatment, be sick then back to work of course long term series of this but I had no idea it would be this extreme.
Dr. Rhodes referred us to the James Cancer Hospital at OSU, I have an appointment to see a Dr. Walker next Wednesday the 17th. He wanted me to go to the James tomorrow but also stated when you go they want to admit you that day & start treatment right away so I said NO, so Wednesday it is. I have to go to Mount Carmel West for a 4 pack of platelets tomorrow morning. The treatment may change depending on what the James Cancer Hospital wants to do.
Marcus is very stressed & trying not to show it, I am a basket case crying one minute & a zombie the next. Misty is vigorously cleaning everything in the house she is so upset. But it could be worse in all honesty. The kids are going to be OK, we have talked to them obviously Zack is too little to understand. I will update you all later through the blog.
On a positive note if anyone would like to donate blood in my name they can do so through the dedicated doner program at the Red Cross you have to give them my name when you do it & they will see if it is a match, if it is not please still donate, the blood & platelet transfusions are what is keeping me alive along with all of your Love & support.
Sandi
September 8, 2008
Hi Everyone,
Happy birthday to me, I am 34 today! I have contacted most of you or asked others to contact you for me but in case anyone was missed I will give a little background & the current update:
After several months of not feeling well, I made an appointment for a physical. My chest kept hurting, I was getting palpitations & short of breath upon any physical activity. Marcus threatened to take me to the ER so I broke down and made an appointment with a Cardiologist last Wed, I received a stress test & was on a 24 hour heart monitor.After working that afternoon from 1-9 at the base I went to Madison County Hospital to have my blood work drawn at 10:30pm.
Long story short after and urgent call from the cardiologist to every Vest in London at 1:00 AM he got Marc's dad to come over & wake us up & call him. When I did he told me to report to the Emergency Room (my hemoglobin was 4 & my platelet level was 1400- this is very very low, so after several hours waiting in the ER I was admitted to the Mount Carmel West that night 7 into early Thursday morning. After several tests (my arms look like a heroin drug user from all the blood draws & transfusions) , the preliminary diagnosis from a Oncologist/Hematologist is Leukemia.
Wow we were not expecting that!
I got out of the hospital around midnight on Friday. I planned to go back to work today but I am going to try to go in tomorrow instead. (I wanted to give my body one more day to recover & in reality I may have been pushing myself to much) regardless I am feeling a lot better now . The doc said I was running on 1/3 of the blood my body needed & my body was overcompensating for it but it got to that point where it could not keep up. The final tally was 6 units of blood & 3 units of platelets.
Wed is going to be a difficult day for the family, we will receive the results of the bone marrow biopsy ( I strongly recommend if you never have to get one do not volunteer for it, it is extremely painful) , the specific type, prognosis, treatment plan and possibly another blood transfusion.
I know that no matter what I am going to have good days & bad days through this but I plan for the good to out way the bad. I have never laid down & took anything so this will be no different. We are being very positive & hoping for the best. I still want to work when I can ( I need to for may sanity, it would drive me nuts to lay around & do nothing & everything I do at work can be done from my desk & phone for the most part) , so I do not want to go off on disability if I do not have to. Thank you for all of the cards & prayers, we will need continued support through this difficult time. As my husband Marcus said I am, very sick but I am not dead, this is a bump in the road pushing us down a path most people do not have to travel but we will get through it. Marcus has been wonderful through this & I know he will need lots of support as well.
If you want updates I will send one out this Friday since we will know a lot more by then & more than likely monthly after that unless there is something major between now & then
Thank you,
Sandi
Happy birthday to me, I am 34 today! I have contacted most of you or asked others to contact you for me but in case anyone was missed I will give a little background & the current update:
After several months of not feeling well, I made an appointment for a physical. My chest kept hurting, I was getting palpitations & short of breath upon any physical activity. Marcus threatened to take me to the ER so I broke down and made an appointment with a Cardiologist last Wed, I received a stress test & was on a 24 hour heart monitor.After working that afternoon from 1-9 at the base I went to Madison County Hospital to have my blood work drawn at 10:30pm.
Long story short after and urgent call from the cardiologist to every Vest in London at 1:00 AM he got Marc's dad to come over & wake us up & call him. When I did he told me to report to the Emergency Room (my hemoglobin was 4 & my platelet level was 1400- this is very very low, so after several hours waiting in the ER I was admitted to the Mount Carmel West that night 7 into early Thursday morning. After several tests (my arms look like a heroin drug user from all the blood draws & transfusions) , the preliminary diagnosis from a Oncologist/Hematologist is Leukemia.
Wow we were not expecting that!
I got out of the hospital around midnight on Friday. I planned to go back to work today but I am going to try to go in tomorrow instead. (I wanted to give my body one more day to recover & in reality I may have been pushing myself to much) regardless I am feeling a lot better now . The doc said I was running on 1/3 of the blood my body needed & my body was overcompensating for it but it got to that point where it could not keep up. The final tally was 6 units of blood & 3 units of platelets.
Wed is going to be a difficult day for the family, we will receive the results of the bone marrow biopsy ( I strongly recommend if you never have to get one do not volunteer for it, it is extremely painful) , the specific type, prognosis, treatment plan and possibly another blood transfusion.
I know that no matter what I am going to have good days & bad days through this but I plan for the good to out way the bad. I have never laid down & took anything so this will be no different. We are being very positive & hoping for the best. I still want to work when I can ( I need to for may sanity, it would drive me nuts to lay around & do nothing & everything I do at work can be done from my desk & phone for the most part) , so I do not want to go off on disability if I do not have to. Thank you for all of the cards & prayers, we will need continued support through this difficult time. As my husband Marcus said I am, very sick but I am not dead, this is a bump in the road pushing us down a path most people do not have to travel but we will get through it. Marcus has been wonderful through this & I know he will need lots of support as well.
If you want updates I will send one out this Friday since we will know a lot more by then & more than likely monthly after that unless there is something major between now & then
Thank you,
Sandi
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They call me Rooster
& Leukemia did not snuff this one!
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