It's Time to Roll up your sleeves
I am very excited to share with you that for those of you that will be in the Lima area on January 8th from 8:00-2:30 there will be a Blood Drive dedicated to me at the Allen County Department of Job & Family Services 1501 S. Dixie Hwy.Lima, OH 45804 (in the old Westinghouse building). I believe this will be open to the public (walk-ins welcome), however if anyone knows ahead of time they want to participate please call Tracy Hollar @ 419-999-0297 for possible scheduling. My Aunt Debe has been working real hard with her employer & they have made great strides in making this a very coordinated effort with multiple agencies involved. Unfortunately I will be in the James at the time of the Blood Drive undergoing my 4th & hopefully final round of hospitalized Chemotherapy but I will definitely be there in spirit!
Things have been busy this week. I still have not started taking down Christmas decorations, I may not get to this until after I get out of the hospital. The kids are home & we have been playing Wii a lot as a family which is kinda cool, Zack is almost to the pro status in bowling, Paige is right behind him. I suck, but it's fun. My recovery this round has not went as well as I would have hoped for. I keep expecting that things will go as well as the time before & so far they were. Other than being weaker and the pain being more intense then usual my biggest concern is my low ANC counts, it just takes one little flu bug to wipe me out. I hate living in fear of that, hopefully I will get good news tomorrow with my labs that my counts are back up again & all this worrying will be for nothing.
We ran out to look at paint tonight for Marc to paint over the Fun Yellow color Misty had the entire addition painted, needless to say I picked Ancient Marble which is a much softer tone. I was irritated after Misty moved out & Marc told me we were going to put our bedroom in there because the way Misty designed the room was not my preferred choice when we had the addition built for her last year. But Marc has convinced me with changing the paint color & my diminished capacity with this cancer(not tolerating the stairs well)it will be ok. Marc & Brandon got 2 loads of Misty's stuff moved to her new apartment. I did not realize she had so much stuff & she is unable to move most of herself. When she was ready to move in with us I paid a mover, well a lot has happened since then & I can't afford to have a mover move her out. If everything goes according to plans good friends of ours will be helping us move the rest of Misty's large furniture out on New Year's Day.
Brandon has a 2 day wrestling tournament this weekend & he is trying to cut weight, he was not feeling to good tonight after practice. I told Marc we need to watch him a little closer & make sure he doesn't cut too much weight too fast if he does me & him are going to have words. He is all muscle as it is & I don't think he fully understands how dangerous it is to cut weight. He thinks because the school tests their body fat at the beginning of the season that it is ok to drop down to that lowest point. His lowest class he can drop to is 145 & he easily weighed between 157-160 last week,he doesn't always listen to the voice of reason.
I posted information below about a benefit the London Assembly #208 Rainbow Girls are holding for me. I will continue to post this information along with the Blood Drive information at the bottom of each post until they have occurred. Thank you all for your support.
Benefit Scheduled
Many of you who know me may remember I used to be on the Board & the Treasurer for the London Assembly #208 Rainbow Girls when Katie & Paige were in Rainbow. I was contacted by Mom Wendy Hall, Mother Advisor from The London Assembly #208 Rainbow Girls & they are holding a Spaghetti Dinner Benefit for me on January 24th from 5:00 pm-7:00 pm at the Chandler Lodge located at 65 North Main Street, London Ohio. The Menu will be Spaghetti, sauce with meatballs, bread & butter, salad with dressing & a drink for $5.00. Desserts will be available for a donation & you can dine in or carryout is available. If you would like any information please contact Keith Hall @ 614-302-0431or airforcekeith@sbcglobal.net
Tuesday, December 30, 2008
Monday, December 29, 2008
December 29, 2008
Over the course of 9 days I had 8 infusions with this round of Chemo recovery. Thank you so much to those of you who are out there donating blood & platelets in my honor. Even though I may not receive your donation directly your donations are essential so that others may live myself included.
I could not get over how quite the house was this weekend. There were several moments where I would find myself relaxing on the couch & look over at Marc, he would look at me & it was nice not having any stress. Of course there were moments where I think we were both a little bored as well. But then there was the occasional energy bursts from Zack, we don't call him Zack Attack for nothing. Even Spike was exceptionally mellow, he was on my lap every chance he got. He always sleeps with Paige so I went ahead & put him in our bed, Marc can't wait for Paige to come home because he said Spike is a bed hog.
We rented some movies from Blockbuster Death Race for us, Hancock & Snow Buddies for Zack. After watching Hancock I knew we were in trouble because Zack is a huge movie buff, not only does he memorize entire scenes he tries to reenact them. There was quite a bit of cursing in the movie, so I am a little nervous that he may try to repeat them.
The three of us went out to the Clubhouse Saturday afternoon to get something to eat & hang out for a little bit. Kim called me Sunday night & said she took my purse in the house because I left it out at the clubhouse. I went a whole day & never noticed it was missing & have no memory of taking it out there. This Chemo has to be affecting my brain a little bit because I have never done that before.
I have been having real intense bone pain in the evening for the last 2 nights. I keep blaming it on my bone marrow making all my blood & platelets. I have taken 2 oxy's each night but they really are not phasing it, hopefully it will hurry up & be done soon, it cripples me to where I can't hardly get up.
Today is Katie's 15th Birthday, I talked to here this morning, sounds like she is having a good time at her Father's, she flys back on Friday. Brandon & Paige will be home later today so that should liven up the house a bit. It's hard to believe but it will be nice to have some noise back in the house. I have to say Zack surprised me with how good he has been considering all the older kids were gone this weekend, I think it helped having all his new toys to play with.
Zack went to the Hospital with me this morning for my lab draws & PICC care. He went with me last Friday as well. The first time he had a lot of questions but this time he was just chatting away about all of his toys. I think it may help him understand & cope with my illness a little better by seeing that I am not getting hurt when I go to the hospital.
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
18 Dec-----107---1.3---------90-------8.5-----------2-----1 Unit Platelet
19 Dec-----108---2.6-------1300-------8.6-----------4-----1 Unit Platelet
20 Dec-----109---5.2-------4300-------8.6-----------43----1 Unit Platelet
22 Dec-----111---12.3------10800------8.6-----------23--------------N/A
24 Dec-----113----3.3-------1400------7.3---------45----1 Unit of Blood
26 Dec-----115----32.5-----29600------8.8-----------70--------------N/A
29 Dec-----118----3.6-----1836------9.6-----------121--------------N/A
So these are my labs today, I do not know what is going on with my immune system, I'm down then I am through the roof, it's a yo yo & I don't get it. So far in my treatment once my counts drop & then come back up during recovery they stay up, that is not happening. So I have to go back on my neupogen shots again. When I went to Clinic at the James 2 weeks ago my Dr. told me once my counts hit 5,000 quit taking the shots, if it goes below 5,000 start taking them again. I had 10 shots left when I saw her & she told me they should last through my next chemo treatment because my counts have always bounced back so quickly. At the rate I am going the shots are not going to last me through this round let alone the next phase. So I am going to have to call my Dr. this afternoon & see what she wants me to do, I only have 3 shots left.
I could not get over how quite the house was this weekend. There were several moments where I would find myself relaxing on the couch & look over at Marc, he would look at me & it was nice not having any stress. Of course there were moments where I think we were both a little bored as well. But then there was the occasional energy bursts from Zack, we don't call him Zack Attack for nothing. Even Spike was exceptionally mellow, he was on my lap every chance he got. He always sleeps with Paige so I went ahead & put him in our bed, Marc can't wait for Paige to come home because he said Spike is a bed hog.
We rented some movies from Blockbuster Death Race for us, Hancock & Snow Buddies for Zack. After watching Hancock I knew we were in trouble because Zack is a huge movie buff, not only does he memorize entire scenes he tries to reenact them. There was quite a bit of cursing in the movie, so I am a little nervous that he may try to repeat them.
The three of us went out to the Clubhouse Saturday afternoon to get something to eat & hang out for a little bit. Kim called me Sunday night & said she took my purse in the house because I left it out at the clubhouse. I went a whole day & never noticed it was missing & have no memory of taking it out there. This Chemo has to be affecting my brain a little bit because I have never done that before.
I have been having real intense bone pain in the evening for the last 2 nights. I keep blaming it on my bone marrow making all my blood & platelets. I have taken 2 oxy's each night but they really are not phasing it, hopefully it will hurry up & be done soon, it cripples me to where I can't hardly get up.
Today is Katie's 15th Birthday, I talked to here this morning, sounds like she is having a good time at her Father's, she flys back on Friday. Brandon & Paige will be home later today so that should liven up the house a bit. It's hard to believe but it will be nice to have some noise back in the house. I have to say Zack surprised me with how good he has been considering all the older kids were gone this weekend, I think it helped having all his new toys to play with.
Zack went to the Hospital with me this morning for my lab draws & PICC care. He went with me last Friday as well. The first time he had a lot of questions but this time he was just chatting away about all of his toys. I think it may help him understand & cope with my illness a little better by seeing that I am not getting hurt when I go to the hospital.
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
18 Dec-----107---1.3---------90-------8.5-----------2-----1 Unit Platelet
19 Dec-----108---2.6-------1300-------8.6-----------4-----1 Unit Platelet
20 Dec-----109---5.2-------4300-------8.6-----------43----1 Unit Platelet
22 Dec-----111---12.3------10800------8.6-----------23--------------N/A
24 Dec-----113----3.3-------1400------7.3---------45----1 Unit of Blood
26 Dec-----115----32.5-----29600------8.8-----------70--------------N/A
29 Dec-----118----3.6-----1836------9.6-----------121--------------N/A
So these are my labs today, I do not know what is going on with my immune system, I'm down then I am through the roof, it's a yo yo & I don't get it. So far in my treatment once my counts drop & then come back up during recovery they stay up, that is not happening. So I have to go back on my neupogen shots again. When I went to Clinic at the James 2 weeks ago my Dr. told me once my counts hit 5,000 quit taking the shots, if it goes below 5,000 start taking them again. I had 10 shots left when I saw her & she told me they should last through my next chemo treatment because my counts have always bounced back so quickly. At the rate I am going the shots are not going to last me through this round let alone the next phase. So I am going to have to call my Dr. this afternoon & see what she wants me to do, I only have 3 shots left.
Friday, December 26, 2008
December 26, 2008
Marc & I made it to bed about 2am & Zack awoke at 6:50am Christmas morning. I figured Zack would have been up a lot earlier than that, I was grateful for the little bit of sleep we got.
Zack really surprised me this year, he helped pass out the presents & actually looked at what he got before he would move on to the next one. He is at the fun age as Marc calls it. Katie & Paige seemed a little bummed that they did not get as many presents as Zack until they opened their gift cards & the Will. Brandon is easy to please it almost seemed like he was having as more fun playing with Zack's toys. The Wii, our family present this year, has not had a break. Marc & I have had it for months, it was driving him nuts not to give it to the kids early, but I made him wait. Everyone in the house including Zack has made their own Wii person, they have a slight resemblance, mine is short, stocky & bald, LOL. I couldn't believe Brandon was up & had the Wii on at 6:40am while Katie was doing her last minute packing.
This Christmas was extra special for so many reasons. The outpouring of support from my friends & co-workers at ODH was just unbelievable. The kids absolutely loved the presents from "Santa". Everyone that has sent in financial contributions to help out with the medical costs of my leukemia treatment, you all enabled us to not have to tap into the kids Christmas fund that we save up for each year. There is also my prayer warriors, you keep on praying because we still have a long way to go. I am just so thankful for our friends & family & their unwavering support. Marc & I cannot thank you all enough, we truly are so grateful. We made & received so many calls yesterday & even still there are many of you I missed. I hope you all had a wonderful Christmas.
Jill & George, Katie's grandparents, came to pick her up Katie at 7:30. I should have got a picture, she looked real cute. Misty got her a real good hair straightener for Christmas & Paige helped her straighten her natural curls last night(Katie hates her curly hair).I am still real nervous about Katie flying solo this year but she has the cell phone & has been told several times what to do.She has had a few delays already today I won't be relieved until I get that phone call saying she made it to Shreveport, LA. I can't believe my baby girl has grown up so fast, she is as tall as me now if not taller.
Brandon & Paige headed out about 10:00am to their Grandmas for the weekend, so it is just Zack, Marc & I. The house is going to be way too quiet this weekend. Marc took some pictures & taped the kids opening their presents. Once I get them downloaded from his camera I will make a slide show & post it, this might take me a few days. In the mean time for your viewing pleasure I posted the the kids elf dancing video, it is hilarious!
So I went to the hospital at 9am for my labs & Sue wasn't there. I must of got the time wrong, I was blaming that on the chemo brain until Sue called, she ended up sending her other nurse up to draw my labs.
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
15 Dec-----104---0.4----------0-------7.8-----------2-------1 Unit Platelet
16 Dec-----105---0.4----------0-------7.3---------3--1 Blood & 1 Platelet
17 Dec-----106---0.6--------168-------9.0-----------1-----1 Unit Platelet
18 Dec-----107---1.3---------90-------8.5-----------2-----1 Unit Platelet
19 Dec-----108---2.6-------1300-------8.6-----------4-----1 Unit Platelet
20 Dec-----109---5.2-------4300-------8.6-----------43----1 Unit Platelet
22 Dec-----111---12.3------10800------8.6-----------23--------------N/A
24 Dec-----113----3.3-------1400------7.3---------45----1 Unit of Blood
26 Dec-----115----32.5-------29600------8.8-----------70--------------N/A
Yeah, I am back off the Neupogen shots, my hemoglobin level is holding & my platelets appear to be producing on their own again. I go back in on Monday for more labs. My ANC & White Blood Cell counts should drop down significantly, I need to sustain on my own an ANC of 5,000 or higher.
I will not be posting again until Monday more than likely so I hope you all enjoy your weekend!
Zack really surprised me this year, he helped pass out the presents & actually looked at what he got before he would move on to the next one. He is at the fun age as Marc calls it. Katie & Paige seemed a little bummed that they did not get as many presents as Zack until they opened their gift cards & the Will. Brandon is easy to please it almost seemed like he was having as more fun playing with Zack's toys. The Wii, our family present this year, has not had a break. Marc & I have had it for months, it was driving him nuts not to give it to the kids early, but I made him wait. Everyone in the house including Zack has made their own Wii person, they have a slight resemblance, mine is short, stocky & bald, LOL. I couldn't believe Brandon was up & had the Wii on at 6:40am while Katie was doing her last minute packing.
This Christmas was extra special for so many reasons. The outpouring of support from my friends & co-workers at ODH was just unbelievable. The kids absolutely loved the presents from "Santa". Everyone that has sent in financial contributions to help out with the medical costs of my leukemia treatment, you all enabled us to not have to tap into the kids Christmas fund that we save up for each year. There is also my prayer warriors, you keep on praying because we still have a long way to go. I am just so thankful for our friends & family & their unwavering support. Marc & I cannot thank you all enough, we truly are so grateful. We made & received so many calls yesterday & even still there are many of you I missed. I hope you all had a wonderful Christmas.
Jill & George, Katie's grandparents, came to pick her up Katie at 7:30. I should have got a picture, she looked real cute. Misty got her a real good hair straightener for Christmas & Paige helped her straighten her natural curls last night(Katie hates her curly hair).I am still real nervous about Katie flying solo this year but she has the cell phone & has been told several times what to do.She has had a few delays already today I won't be relieved until I get that phone call saying she made it to Shreveport, LA. I can't believe my baby girl has grown up so fast, she is as tall as me now if not taller.
Brandon & Paige headed out about 10:00am to their Grandmas for the weekend, so it is just Zack, Marc & I. The house is going to be way too quiet this weekend. Marc took some pictures & taped the kids opening their presents. Once I get them downloaded from his camera I will make a slide show & post it, this might take me a few days. In the mean time for your viewing pleasure I posted the the kids elf dancing video, it is hilarious!
So I went to the hospital at 9am for my labs & Sue wasn't there. I must of got the time wrong, I was blaming that on the chemo brain until Sue called, she ended up sending her other nurse up to draw my labs.
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
15 Dec-----104---0.4----------0-------7.8-----------2-------1 Unit Platelet
16 Dec-----105---0.4----------0-------7.3---------3--1 Blood & 1 Platelet
17 Dec-----106---0.6--------168-------9.0-----------1-----1 Unit Platelet
18 Dec-----107---1.3---------90-------8.5-----------2-----1 Unit Platelet
19 Dec-----108---2.6-------1300-------8.6-----------4-----1 Unit Platelet
20 Dec-----109---5.2-------4300-------8.6-----------43----1 Unit Platelet
22 Dec-----111---12.3------10800------8.6-----------23--------------N/A
24 Dec-----113----3.3-------1400------7.3---------45----1 Unit of Blood
26 Dec-----115----32.5-------29600------8.8-----------70--------------N/A
Yeah, I am back off the Neupogen shots, my hemoglobin level is holding & my platelets appear to be producing on their own again. I go back in on Monday for more labs. My ANC & White Blood Cell counts should drop down significantly, I need to sustain on my own an ANC of 5,000 or higher.
I will not be posting again until Monday more than likely so I hope you all enjoy your weekend!
Thursday, December 25, 2008
December 25, 2008
From our house to yours Merry Christmas! Special thanks to all the Santa's that made this Christmas extra special for our kids.
The Vest's
Wednesday, December 24, 2008
December 24, 2008
Happy Christmas Eve!
Yesterday was so busy I did not have time to post. I had to update the MLMC website with the 2009 Calendar of events, take Brandon to wrestling, than pick him up & take him to the Dr. I am happy to report it is not MERSA on Brandon's wrist, she thinks he may have got something under the skin that caused an infection. From there we went to Walmart to drop of his prescriptions, plus the last minute Santa stuff & get groceries.
When we got home the fun did not stop. I don't know where I got the energy from but I emptied out the refrigerator & cleaned it thoroughly. It seemed to take forever because to get the shelves in & out you have to do it in a certain order & needless to say it took longer than I planned. It does however look brand new on the inside now, Marc came home from work & said "Holy S**t" when he saw it.
Paige & Katie were a great help with Zack, they worked on his Christmas break activity pack with him & he is done with the whole thing. He also has a list of other activities we still have to complete before he goes back to school. Katie leaves the 26th to see her dad in Louisiana. This will be the first year she is flying down there unattended & I am nervous about it. I borrowed a friends Boost cell phone to send with her so she can call us both every step of the way. Hopefully the weather will cooperate & she will not have any trouble making her connections.
I made Marc & the kids sit down & make a menu with me so I know what to cook for the week. Last night I made toasted subs, I can't mess that one up. Marc always teases me because there are very few things that I can cook what he calls real home cooked meals & not something out of a box, but I try. It is going to take a little bit for me to get back in the swing of things, Misty was a really great cook.
I had a real nasty fall on the ice last night except for that I have been feeling pretty good for the most part. Santa was in wrapping mode last night & early this morning.
So today is Christmas Eve & I am mailing our Christmas Cards out today, Katie & Paige were outstanding helpers with the envelopes I could not print the labels from the computer so they hand wrote everything. Were sorry they are so late this year, but better late than never. Thank you so much Aunt Sue & Uncle David, I got your card today with your words of encouragement & another very generous donation for my medical fund.
Zack is super hyper-excited, he can't wait for Santa to come tonight. Zack, Paige, Katie & I are going to make sugar cookies with me this afternoonish, Zack won't stop asking can we make them now, it is too funny. I remember when our 3 teenagers in the house used to get that excited. Later tonight we will all sit down & read Twas the Night Before Christmas & then they can open their presents from Grandma.
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
11 Dec-----100---0.3----------0-------9.1----------31--------------N/A
15 Dec-----104---0.4----------0-------7.8-----------2-------1 Unit Platelet
16 Dec-----105---0.4----------0-------7.3---------3--1 Blood & 1 Platelet
17 Dec-----106---0.6--------168-------9.0-----------1-----1 Unit Platelet
18 Dec-----107---1.3---------90-------8.5-----------2-----1 Unit Platelet
19 Dec-----108---2.6-------1300-------8.6-----------4-----1 Unit Platelet
20 Dec-----109---5.2-------4300-------8.6-----------43----1 Unit Platelet
22 Dec-----111---12.3------10800------8.6-----------23--------------N/A
24 Dec-----113----3.3-------1400------7.3-----------45----1 Unit of Blood
As you can see my hemoglobin dropped so I had to go in & get an infusion today. My ANC is bottoming out so I am back on the Neupogen shots until Friday at a minimum, My RN Sue is going to come in (even though she has the day off) to draw my labs to make sure my labs are good & to give me an infusion if I need another one.
I don't plan to post tomorrow but we'll see, just on case I don't I want to wish you all a Merry Christmas.
Monday, December 22, 2008
December 22,2008
3 days until Christmas!
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1----------31--------------N/A
15 Dec-----104---0.4----------0-------7.8-----------2-------1 Unit Platelet
16 Dec-----105---0.4----------0-------7.3---------3--1 Blood & 1 Platelet
17 Dec-----106---0.6--------168-------9.0-----------1-----1 Unit Platelet
18 Dec-----107---1.3---------90-------8.5-----------2-----1 Unit Platelet
19 Dec-----108---2.6-------1300-------8.6-----------4-----1 Unit Platelet
20 Dec-----109---5.2-------4300-------8.6-----------43----1 Unit Platelet
22 Dec-----111---12.3------10800------8.6-----------23--------------N/A
I was expecting another platelet infusion when I went to the hospital Saturday morning, even my RN Sue was to the point that she pre-ordered the Platelets on Friday afternoon. You can imagine to both of our surprise when my Platelets came back in at 44! This is really good news, my bone marrow must be kicking into overdrive because my counts are coming up. The side effect to this is my bones hurt like hell but I don't care.
Weekend review: Friday night the kids had a great time at the clubhouse for the London MLMC kids Christmas Party. Saterday we went up to Findlay & I think they got the ice storms up there because all of the trees & the back roads were still covered in ice. Sunday, Misty, my mother-in-law, found an apartment & is in the process of moving out.Today my White Blood Cell & ANC counts went through the roof & my platelets came down some. I will take a good ANC count over low Platelets any day, I can get an infusion if I need one but if I get sick & my ANC Count is low my body can't fight it.
This morning it was -20 with the wind chill, Brrrr all day. Spike even went out & took care of business without running around. Paige had Olivia one of her Cheerleading friends spend the night last night, I think Zack is in love & Katie was irritated. To add to the list of what is going on Brandon has what looks like the beginning of MERSA on his forearm from wrestling. I have him scheduled to be seen at his Dr. in the morning if it is what we think it is I will have to take him to Children's Hospital Urgent Care in Dublin to get him treated.
I want to send special thanks out to David Nunley & MLM Digital Stream for their generous donations to my Leukemia Support Fund.
As Christmas draws closer with everything going on & the kids on break my posts will get a little shorter so bear with me, I will post when I can. I am scheduled to go back in the hospital on January 4th for my 3rd & hopefully final round of Consolidated Chemotherapy, this will be my toughest round yet. This unfortunately will not be the end to my Chemo but it should be the end to hospitialized Chemo & that is awesome!
Benefit Scheduled
Many of you who know me may remember I used to be on the Board & the Treasurer for the London Assembly #208 Rainbow Girls when Katie & Paige were in Rainbow. I was contacted by Mom Wendy Hall, Mother Advisor from The London Assembly #208 Rainbow Girls & they are holding a Spaghetti Dinner Benefit for me on January 24th from 5:00 pm-7:00 pm at the Chandler Lodge located at 65 North Main Street, London Ohio. The Menu will be Spaghetti, sauce with meatballs, bread & butter, salad with dressing & a drink for $5.00. Desserts will be available for a donation & you can dine in or carryout is available. If you would like any information please contact Keith Hall @ 614-302-0431or airforcekeith@sbcglobal.net
Friday, December 19, 2008
December 19, 2008
6 Days until Christmas!Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
4 Dec------93----4.4------3,800-------9.2--------196------------N/A
5 Dec------94----3.5------3,400-------9.3--------170------------N/A
6 Dec------95----3.9----Unknown----9.9--------175------------N/A
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1----------31--------------N/A
15 Dec-----104---0.4----------0-------7.8-----------2-------1 Unit Platelet
16 Dec-----105---0.4----------0-------7.3---------3--1 Blood & 1 Platelet
17 Dec-----106---0.6--------168-------9.0-----------1-----1 Unit Platelet
18 Dec-----107---1.3---------90-------8.5-----------2-----1 Unit Platelet
19 Dec-----108---2.6-------1300-------8.6-----------4-----1 Unit Platelet
I awoke this morning to Spike in my Bed. Marc usually takes him to work with him in the morning so it was a pleasant surprise. He laid with me a lot on the couch last night with me so I took him to bed with us, he usually sleeps with Paige. Marc must have figured we needed so time together.
It is raining today, what was ice ice turned into a nice slush & then everything was just wet. The temperature was 34 when I dropped the kids off at school & headed to the hospital for my lab draws. I was amazed to see the sun come out for a brief smile before the rains came back this afternoon.
Our other child in the house, his name is I don't know or I didn't do it has been playing pranks on me. The latest one involves a load of whites I put in the washer. When I got home from the hospital & was putting them in the dryer low & behold there was a red hand towel in there that wasn't there when I started the washing machine. Thank god the bleach must have already ran through because nothing turned pink or I would have blown up for sure.
Sue, my RN, was scheduled off today but she came in for me. The rash & all the bruises are still there the only new ones that I can tell are on the sides of my head. Speaking of my head, in spots my hair is growing. It looks like peach fuzz only a little longer in patches. I think for every hair that grows another one falls out. I am constantly finding these little hairs in my head caps. Anyway, Sue used the Highway Patrol to get my Platelets again today, they are 4 so at least they came up a little bit. I am loving my ANC number increase, once I hit 5,000 I can quit taking the Neupogen shots, I am running out of places to shoot it because everything is so bruised up not to mention here lately they have been stinging & hurting like heck when I shoot it.
Dorene Burkhart & Viola Webber from the Ohio Department of Health, Office of Public Health Preparedness came out to the house today bearing all kinds of gifts for our family from my friends & colleagues. Everyone up at ODH has been so supportive through phone calls, prayers, visits, gifts & Finical donations. It feels so good to know that we are cared about so much. Thank you so much to everyone up at ODH & especially to Dorene & Viola for making the trip to our home, I miss all of you!
I was talking to Dorene & Viola before they left, I have to say I was having a real hard time at first even asking for help, I almost felt guilty about it because Marc & I have always taken care of ourselves. In the past we have been through some really hard times between my Iraq War deployments , Brandon & Paige's Mothers death, it was really tough on everyone but somehow we always got through it together. After many conversations with others (My sister Sharon, Aunt Lynn, Dorene & Viola, etc) It has taken awhile but I am finally understanding that it is not placing a burden on other people, that people genuinely want to help us & they will not put themselves out to do it. My sister told me yesterday "it's not like you put yourself in this situation Sandi, people want to help you & it makes them feel good doing it so quit beating yourself up about it". I have to say it can be very overwhelming at moments just how much people really do care & want to see me make it through this. I never really knew how much until now & it makes me feel so warm on the inside & I am fighting that much harder each day.
I take my ANC count increase as a sign that things are on the up & up for next week. I can't think of a better way to end this week because this week has been a rough week for me physically & mentally. I hope all of you enjoy your weekend, I plan to make the most of mine. Happy Holidays everybody!
Thursday, December 18, 2008
December 18, 2008
7 Days until Christmas!
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
3 Dec------92----5.0------4,400-------9.5--------183------------N/A
4 Dec------93----4.4------3,800-------9.2--------196------------N/A
5 Dec------94----3.5------3,400-------9.3--------170------------N/A
6 Dec------95----3.9----Unknown----9.9--------175------------N/A
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1----------31--------------N/A
15 Dec-----104---0.4----------0-------7.8-----------2-------1 Unit Platelet
16 Dec-----105---0.4----------0-------7.3---------3--1 Blood & 1 Platelet
17 Dec-----106---0.6--------168-------9.0-----------1-----1 Unit Platelet
18 Dec-----107---1.3---------90-------8.5-----------2-----1 Unit Platelet
When I updated the Blog yesterday I was so tired I did not see the comment from Jenny Goldberg at OCSEA Headquarters that posted under the Dec 16th Blog. I went to my Blog Dashboard to start writing today's blog when I noticed that her comment was added. I was so surprised when I read it, This past week I have been so out of it, its a wonder I get anything posted on my Blog. I apologise now for all the spelling & grammatical errors. I reread my Blog sometimes & catch them but they are already posted & read so its to late to fix them.
Jenny I don't know what to say other than it is amazing that OCSEA is willing to do a Blood drive in my honor, I will try to get a hold of you today. We got rid of our house phone a few months back & we only use our cellphone now. I am sending a letter to Aetna with my donor numbers attached to it to see if they will apply a discount for 23 of the infusions. I still need Blood & Platelet infusions, this week it has been daily, I am up to 39 total if you count today's infusion. I am a firm believer that you never take more than you need & when you can give back do it. I have 23 people that have sent me their Donor ID Numbers since I have been diagnosed and several other people have told me they have donated blood as well. I still want people to donate in my honor when possible because I cannot donate myself. It is important to me that for every unit I can say that someone replaced it for me & if we could double or triple the amount I use it is even better. When I was a flight medic with the Air Force & an avid Blood Donor before I got sick I knew it was important to donate blood but I never really realized just how important these blood products are until my life was literally hanging on by a thread with a hemoglobin of 4 & my Platelets at 14 back on September 3, 2008. Those 6 units of blood & platelets I received kept me alive, today it's the infusions & treatment coupled with everyones prayers & support.
I go in this morning to see Sue,my RN at Madison County Hospital, before she even drew my labs this morning she ordered the platelets ASAP, both of my legs & feet are now covered in petechiae rash, along with all the other bruises & sores. She was very concerned when I told her my Platelets were less than 2 yesterday, she said what would happen if I didn't have any. So far the only place I have blood oozing from that I know of is my mouth & my nose only does it if I sneeze or blow it. She had the Highway Patrol called to go & pick up the Platelets & bring them back, I asked her why & she said otherwise we have to wait on the Red Cross to bring it out in their van & that takes a lot longer, the Highway Patrol can drive a lot faster. I did not know that they did this.Here are the pictures of the petechiae rash on my legs & feet. Don't be making fun of my toe nails. I haven't painted them since I was admitted to the James the first go round back in September.
There was an anonymous comment left on the Blog about contacting the Credit Union with regard to my Leukemia Fund account, I did contact them today & they said there was no problems, the way I have it posted on this Blog is correct. If you choose to send in a donation for me through the State of Ohio Credit Union please follow the directions listed under Donate, they said they spoke with a caller about this today & that the most important part is ensuring you have my name spelled correctly on the check. I have recognised everyone under contributors that has donated so if you do not see your name there please let me know so I can correct this & contact the Credit Union. My e-mail is sandittie1@yahoo.com if you need to get a hold of me.
Zack woke up happy this morning but was being kinda rotten before he left for school so I was hoping that he got a white day today & thank goodness he was all smiles when he got of the bus (he had a white day)! He has been ornery as heck tonight singing love stinks into a basting brush. 
Marc helped Misty out in the kitchen & later during dinner a laundry conversation went all bad.I was finally able to make it out to pick up the parent's night photo we had taken a couple of months ago.
All of the kids start their Christmas Break Friday night! We are taking them out to the Clubhouse for a Christmas Party, I think they will have a real good time.
Wednesday, December 17, 2008
December 17, 2008
8 Days until Christmas!
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
3 Dec------92----5.0------4,400-------9.5--------183------------N/A
4 Dec------93----4.4------3,800-------9.2--------196------------N/A
5 Dec------94----3.5------3,400-------9.3--------170------------N/A
6 Dec------95----3.9----Unknown----9.9--------175------------N/A
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1----------31--------------N/A
15 Dec-----104---0.4----------0-------7.8-----------2-------1 Unit Platelet
16 Dec-----105---0.4----------0-------7.3---------3--1 Blood & 1 Platelet
17 Dec-----106---0.6--------168-------9.0-----------1-----1 Unit Platelet
Last night I took 2 more oxys for pain & tried to get Zack from Misty's room, he was watching the Polar Express. Needless to say it was not over so he did not want to go to bed. By 9 it still was not over but I made him go to bed so I could. I think I was passed out by 9:10 at the latest.
There was a winter storm advisory all night & we awoke this morning to everything coated in ice outside. It was very pretty but also quite dangerous. Marc took off work to take me to the hospital & I am so grateful, I would of had a really hard time driving that far with the weather & my fatigue after infusion issues. We left for my Dr. appointment at 7:45am & Marc was grumpy because he wanted some McDonald's & said we didn't have time to get any. I told him the weather was bad, go through the drive through if were late were late. I wanted McDonald's so bad it smelled so good but my mouth hurt so bad I knew I couldn't eat it plus I did not want to have any food stuck in my teeth when the Dr. looked at my mouth.
We made it to my appointment on time. The Highway was clear & we managed to avoid all traffic delays.
My Dr. ordered a platelet infusion & took a look at my mouth & ordered me some more magic mouth wash to help numb the pain of it. I thought one the hematomas in my mouth was starting to look infected but she said it is just mucosa. I also expressed my concerns to her about my neutraphil counts this past week & she said some people Nader for 10-14 days & not to worry about my counts being so low for 5 days in a row, I was fortunate to bounce back so quickly the first few times. She gave some new prescriptions for pain among other things & told me I need to keep being careful especially avoiding sick people & wait it out my counts should start coming up soon.
My Platelets came back in at less than 2, I asked so I have 1 then & they all kept saying less than 2. I found it a little humorous, because they would not say 1 or 0 because according to the nurse I couldn't possibly have 0 platelets. My ANC was 168 which is up from 0, so I got a little excited about this until the nurse said anything under 500 is like having 0 because you are severely neutrapenic. Now that I look back at my results for the past 4 days I probably did have a neutraphil count but it was so low they just told me 0, the ANC is calculated as a percentage of your white blood cell count & your band & segmented neutraphils.
They moved us to an infusion room after my Dr. saw me. The nurse asked me if I got pre-medicated & I told her yes so she gave me 2 Tylenol & 1 Benadryl. Marc said what do you need that for & the nurse told him it helps prevent reactions to the infusion. Marc can be real sarcastic when he wants to be, he said yeah right cetametaphin & Benadryl what does that prevent. I said rigors the nurse said also fever & hives & that it can get even worse. That shut him up for a minute. I got real tired real quick from the Benadryl, my Platelets take a little over 30 minutes to infusion at the James because they run them through with a pump. I was real out of it when Marc woke me up.
Because the weather was so bad last night I told MSgt Bill Larue not to come out, I did not want him to get in an accident, so we met at Rooster's in Columbus for lunch. We had such a nice visit. My ability to taste food has been off & on, I was happy because I could actually taste the food today & it was good. It was so good I took Bill's last cheese stick, he said some things never change, it was real funny. Bill got both Marc & I Harley Davidson T-Shirts from Frankfurt, he gave me a sweatshirt from the Alps, he got Zack a cool Ausfart T shirt & the kids Kinder eggs (Chocolate eggs with toys inside, they are really neat). He brought back 2 cases of wine from Germany & gave us a bottle of Muhlmichel Schlosshof Kirchheim Cuvee, it is supposed to be a fruity red wine that is low in nitrates so you don't get a hangover headache. So I am looking forward to having a glass of that with Misty, she like wine. As usual Bill outdid himself, he is such a good friend & a real sweet heart when he wants to be, now if I could just find him a good woman...
My Dr. told me earlier today that I need to quit waiting so long to take my pain meds. By the time we got home I was starting to have some healthy bone pain so I took an Oxy. Katie was home & got her chores done, out of all the kids she does her chores the best, its weird because she is real good about cleaning everything, but when it comes to taking care of herself she does not put the effort in. I keep waiting for her to snap out of the phase she is in. I notice if Paige helps her do her hair & pick out her outfit she is really into it but if she has to do it on her own she does something quick & simple.
As soon as Zack walked in the door I knew he did not have a white day, it was written all over his bottom lip that was sticking out. He said he got on yellow ( the middle of the color chart). He said he laughed at a kid during the concert. Marc took his computer time away & I was just happy he didn't kick or hit someone. He has been doing really well since his incident at the beginning of the month. Since I have talked about Zack & his color chart so much I thought you all might like to see what we are talking about.
Misty is cooking a Spam concoction tonight for dinner it actually sounds pretty good. Paige has cheerleading & Brandon has wresting practice tonight. I plan to just sit back & relax. Hopefully my counts will start going up soon so I won't be stressing over them so much.
Lynn you are awesome, I know we talked earlier today on the phone but I just thought I would tell ya again I love you. You always post a comment for me on the Blog & you have been so supportive through all of this. The Alpaca Hat is going to be awesome I know it, I would have never thought of that & I think it is so cool that she is going to put some Mojo into it.
Aunt Bonnie, I tried to call Aunt Eileen a few months ago when I first got sick & I left a message but never heard back. I have a feeling now maybe that was not her phone. If you could please e-mail me her phone # I would appreciate it.
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
3 Dec------92----5.0------4,400-------9.5--------183------------N/A
4 Dec------93----4.4------3,800-------9.2--------196------------N/A
5 Dec------94----3.5------3,400-------9.3--------170------------N/A
6 Dec------95----3.9----Unknown----9.9--------175------------N/A
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1----------31--------------N/A
15 Dec-----104---0.4----------0-------7.8-----------2-------1 Unit Platelet
16 Dec-----105---0.4----------0-------7.3---------3--1 Blood & 1 Platelet
17 Dec-----106---0.6--------168-------9.0-----------1-----1 Unit Platelet
Last night I took 2 more oxys for pain & tried to get Zack from Misty's room, he was watching the Polar Express. Needless to say it was not over so he did not want to go to bed. By 9 it still was not over but I made him go to bed so I could. I think I was passed out by 9:10 at the latest.
There was a winter storm advisory all night & we awoke this morning to everything coated in ice outside. It was very pretty but also quite dangerous. Marc took off work to take me to the hospital & I am so grateful, I would of had a really hard time driving that far with the weather & my fatigue after infusion issues. We left for my Dr. appointment at 7:45am & Marc was grumpy because he wanted some McDonald's & said we didn't have time to get any. I told him the weather was bad, go through the drive through if were late were late. I wanted McDonald's so bad it smelled so good but my mouth hurt so bad I knew I couldn't eat it plus I did not want to have any food stuck in my teeth when the Dr. looked at my mouth.
We made it to my appointment on time. The Highway was clear & we managed to avoid all traffic delays.
My Dr. ordered a platelet infusion & took a look at my mouth & ordered me some more magic mouth wash to help numb the pain of it. I thought one the hematomas in my mouth was starting to look infected but she said it is just mucosa. I also expressed my concerns to her about my neutraphil counts this past week & she said some people Nader for 10-14 days & not to worry about my counts being so low for 5 days in a row, I was fortunate to bounce back so quickly the first few times. She gave some new prescriptions for pain among other things & told me I need to keep being careful especially avoiding sick people & wait it out my counts should start coming up soon.
My Platelets came back in at less than 2, I asked so I have 1 then & they all kept saying less than 2. I found it a little humorous, because they would not say 1 or 0 because according to the nurse I couldn't possibly have 0 platelets. My ANC was 168 which is up from 0, so I got a little excited about this until the nurse said anything under 500 is like having 0 because you are severely neutrapenic. Now that I look back at my results for the past 4 days I probably did have a neutraphil count but it was so low they just told me 0, the ANC is calculated as a percentage of your white blood cell count & your band & segmented neutraphils.
They moved us to an infusion room after my Dr. saw me. The nurse asked me if I got pre-medicated & I told her yes so she gave me 2 Tylenol & 1 Benadryl. Marc said what do you need that for & the nurse told him it helps prevent reactions to the infusion. Marc can be real sarcastic when he wants to be, he said yeah right cetametaphin & Benadryl what does that prevent. I said rigors the nurse said also fever & hives & that it can get even worse. That shut him up for a minute. I got real tired real quick from the Benadryl, my Platelets take a little over 30 minutes to infusion at the James because they run them through with a pump. I was real out of it when Marc woke me up.
Because the weather was so bad last night I told MSgt Bill Larue not to come out, I did not want him to get in an accident, so we met at Rooster's in Columbus for lunch. We had such a nice visit. My ability to taste food has been off & on, I was happy because I could actually taste the food today & it was good. It was so good I took Bill's last cheese stick, he said some things never change, it was real funny. Bill got both Marc & I Harley Davidson T-Shirts from Frankfurt, he gave me a sweatshirt from the Alps, he got Zack a cool Ausfart T shirt & the kids Kinder eggs (Chocolate eggs with toys inside, they are really neat). He brought back 2 cases of wine from Germany & gave us a bottle of Muhlmichel Schlosshof Kirchheim Cuvee, it is supposed to be a fruity red wine that is low in nitrates so you don't get a hangover headache. So I am looking forward to having a glass of that with Misty, she like wine. As usual Bill outdid himself, he is such a good friend & a real sweet heart when he wants to be, now if I could just find him a good woman...
My Dr. told me earlier today that I need to quit waiting so long to take my pain meds. By the time we got home I was starting to have some healthy bone pain so I took an Oxy. Katie was home & got her chores done, out of all the kids she does her chores the best, its weird because she is real good about cleaning everything, but when it comes to taking care of herself she does not put the effort in. I keep waiting for her to snap out of the phase she is in. I notice if Paige helps her do her hair & pick out her outfit she is really into it but if she has to do it on her own she does something quick & simple.
As soon as Zack walked in the door I knew he did not have a white day, it was written all over his bottom lip that was sticking out. He said he got on yellow ( the middle of the color chart). He said he laughed at a kid during the concert. Marc took his computer time away & I was just happy he didn't kick or hit someone. He has been doing really well since his incident at the beginning of the month. Since I have talked about Zack & his color chart so much I thought you all might like to see what we are talking about.
Misty is cooking a Spam concoction tonight for dinner it actually sounds pretty good. Paige has cheerleading & Brandon has wresting practice tonight. I plan to just sit back & relax. Hopefully my counts will start going up soon so I won't be stressing over them so much.
Lynn you are awesome, I know we talked earlier today on the phone but I just thought I would tell ya again I love you. You always post a comment for me on the Blog & you have been so supportive through all of this. The Alpaca Hat is going to be awesome I know it, I would have never thought of that & I think it is so cool that she is going to put some Mojo into it.
Aunt Bonnie, I tried to call Aunt Eileen a few months ago when I first got sick & I left a message but never heard back. I have a feeling now maybe that was not her phone. If you could please e-mail me her phone # I would appreciate it.
Tuesday, December 16, 2008
December 16, 2008
9 Days until Christmas!
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
3 Dec------92----5.0------4,400-------9.5--------183------------N/A
4 Dec------93----4.4------3,800-------9.2--------196------------N/A
5 Dec------94----3.5------3,400-------9.3--------170------------N/A
6 Dec------95----3.9----Unknown----9.9--------175------------N/A
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1----------31--------------N/A
15 Dec-----104---0.4----------0-------7.8-----------2-----------1 Unit Platelets
16 Dec-----105---0.4----------0-------7.3-----------3-1 Unit Blood & 1 Unit Platelets
On the 9th day of Christmas my cancer gave to me a crappy lab report & a whole day at the hospital!
I really need to vent a little so I don't hold all this in. I was so bummed to see this mornings lab report, I only gained 1 Platelet from my entire infusion yesterday. I should have known this though. When I got home all of the signs were there... My petechiae rash got much worse on my hands & my right ankle looks like it was tied up or something. My stomach look terrible from my injection site bruises, one of which is about the size of a softball. When you add this to the red petechiae where there was once white skin, it looks like the rest of my stomach went many years as a bar room dart board. I have multiple bruises on the rest of my body to, there are just to many to mention, so I am highlighting the newest ones. My mouth is a mess. I have 7 at last count hematomas in my mouth that keep busting & bleeding. I am sure there are more than that in my GI tract. it is so hard to feel like a woman right now. Every time I look in the mirror with this bald head it just pisses me off. I hate this, I just hate the whole thing. This is the ugly side of cancer that your not supposed to talk about, or that no one really wants to hear about. I am hoping someday I am going to look back at this moment & say I was such a whiner today but, today I don't care I think I have earned the right to whine every now & then. I do try to be positive I really do, but I looked in the mirror when I got home after being at the hospital for over 7 hours just to get 2 infusions & the person looking back at me I didn't even recognise, so part of it made me cry & the other part just pissed me off.
I am going to blame my outburst on being nuts because I literally did not sleep at all last night, that is a good an excuse as any I suppose. I took to oxycodones last night because the bone pain got so bad, I figured for sure they would knock me out. I was so tired but I just couldn't fall asleep.
Zack just walked in & told me he got on White today & gave me a big kiss. That kid can brighten anyone's day. How can I keep wallowing in self pity & gripe when he is such a huge motivational factor.
I have to go to the James tomorrow for Clinic, I am a little nervous that they are going to admit me because my Neutraphils have been at zero for so long & the neupogen shots are not working. I have to be there at 8:30am, I hope I am able to get some sleep tonight.
For some reason my camera card reader is not working on Marc's computer so I can't upload any of my photo's from today!
Monday, December 15, 2008
December 15, 2008
10 Days until Christmas!
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
3 Dec------92----5.0------4,400-------9.5--------183------------N/A
4 Dec------93----4.4------3,800-------9.2--------196------------N/A
5 Dec------94----3.5------3,400-------9.3--------170------------N/A
6 Dec------95----3.9----Unknown----9.9--------175------------N/A
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1----------31--------------N/A
15 Dec-----104---0.4----------0-------7.8-----------2-----------1 Unit Platelets
Well my counts are pretty much as I expected, real low. I am really surprised that the Neupogen shots are not giving me any boost to my ANC counts. I take them to give me some what of an immune system, unfortunately they are not working because I still have virtually no immune system. It is making me a little nervous that I am going so long without without one this time. The last round my systems bounced back really quick, I am having no such luck this time. On the upside my RN at Madison County hospital was amazed that I am up & walking around & functioning so well with my counts so low.
I started bruising late Saturday night & it continued over the weekend. I have real nasty looking bruises on my belly at the Neupogen injection sites.
When I went in this morning for my lab draws I noticed a petechiae rash all over both my hands that was not there this morning. By the time I got home I looked and the petechiae is now starting to show up all over the rest of my body. My mouth sores came back & my gums are oozing blood but I figure I will not gross you out with those pictures.
Sue rushed my labs while I was at the hospital & when they came back she ordered me some platelets. I am scheduled to get those around noon today, they have to go to the Red Cross & pick them up. Sue also told me tomorrow I am going to get an infusion of blood first thing. My parameters are if my hemoglobin is below 8 I get a infusion.
I got a phone call last night from my friend MSgt Larue that was deployed for quite awhile, he said they all made it back to the States safely, but they were having a few problems that caused some delays but they had made it to DC when he called me. He is planning to come over to our house Tuesday night if all goes as planned, can't wait to see him. Welcome home guys!
We went to the MLMC Circleville chapters Christmas Party & had a really good time. I won $44 from the 50/50 drawing which was great! They had a huge monkey there that they auctioned off, it was so big it would take a flatbed truck to haul the thing. I am going to try to get pictures from Pixi or Oatmeal for the Missing link Website. I usually take my camera with me everywhere, but here lately I would forget my head if it wasn't attached. We ended up leaving party early, I got tired quick & my bones started aching. I wanted to stay but my body was not up for it.
Sunday we received a wonderful gift of sundry items, staples & a toy for each of the kids from the Organized Labor of Central Ohio. Bill Davies, a very dear friend & fellow motorcycle enthusiast, who also happens to be in the International Brotherhood of Electrical Workers (IBEW) put our family in for this. They provide this to Union workers that have fallen under hard times as well as the community every year. Marc & I are both in Union, OCSEA but we had no idea that this program even existed. The set up they had at the UAW was unbelievable & very streamlined. The people were all very friendly as well. The whole thing was just amazing. I want to send a huge thank you out Bill Davies (who was right there out front smiling real big when we pulled in) and to everyone that was out there volunteering, to all the unions, companies & organizations that made it possible.
While I am thanking people I want to include Ruth Gerding for her donation & for diligently keeping me in her prayers. I have only known Ruth for a short time in the whole scheme of life but the impact she has had on me has been tremendously motivational & encouraging. I know I have a lot of Prayer warriors out there so I don't want anyone to feel left out, thank you all so much. Keep doing what your doing because it is working!
When we got home Sunday Misty told us that Paige was giving her a pretty hard time & a lot of attitude while we were gone. So we ended up sitting all 3 of the teenagers down & had a talk. About attitudes & helping out. it is nothing we have not told them before, but a refresher was in order. Well see if it gets better, I hope so for everyones sake. Katie said she had a good time at her Grandma Jill's, Zack was his typical self all weekend wired for sound & full of questions (mostly how do you spell this, how do you spell that). He keeps saying he wants 100 things for Christmas. Paige actually sat down with him last weekend & made a list of 100 toys from the adds, I told her she is nuts & I keep having to explain to Zack he is not going to get 100 toys from Santa, he has to give toys to the other kids as well. I tell you what I must admit for as rotten as Zack is he is very smart & he does not forget a thing you tell him. Lets see what about the other kids, Paige went to her dance Friday night & cheered Saturday afternoon, both girls cleaned their room Sunday & even straightened up their clothes in the dressers (I am shocked) Brandon on the other hand moved his piles around to different locations in his room & said his room is "picked up"... The smell of a 16 year old's room during wrestling season... you cannot imagine, I refuse to go in there, I will admit it, I am scared LOL.
This is Katie & Brandon this morning before I took them to school.
So for the next few days I am not planning on doing to much of anything until I get "juiced" back up & my ANC starts coming back up. Aunt Lynn, I hope you are not snowed in to much, Aunt Bonnie good luck with the move. I love all of you,thank you for being there for me & the family we could never do this as well as we are without all of your prayers & support.
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
3 Dec------92----5.0------4,400-------9.5--------183------------N/A
4 Dec------93----4.4------3,800-------9.2--------196------------N/A
5 Dec------94----3.5------3,400-------9.3--------170------------N/A
6 Dec------95----3.9----Unknown----9.9--------175------------N/A
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1----------31--------------N/A
15 Dec-----104---0.4----------0-------7.8-----------2-----------1 Unit Platelets
Well my counts are pretty much as I expected, real low. I am really surprised that the Neupogen shots are not giving me any boost to my ANC counts. I take them to give me some what of an immune system, unfortunately they are not working because I still have virtually no immune system. It is making me a little nervous that I am going so long without without one this time. The last round my systems bounced back really quick, I am having no such luck this time. On the upside my RN at Madison County hospital was amazed that I am up & walking around & functioning so well with my counts so low.
I started bruising late Saturday night & it continued over the weekend. I have real nasty looking bruises on my belly at the Neupogen injection sites.
When I went in this morning for my lab draws I noticed a petechiae rash all over both my hands that was not there this morning. By the time I got home I looked and the petechiae is now starting to show up all over the rest of my body. My mouth sores came back & my gums are oozing blood but I figure I will not gross you out with those pictures.Sue rushed my labs while I was at the hospital & when they came back she ordered me some platelets. I am scheduled to get those around noon today, they have to go to the Red Cross & pick them up. Sue also told me tomorrow I am going to get an infusion of blood first thing. My parameters are if my hemoglobin is below 8 I get a infusion.
I got a phone call last night from my friend MSgt Larue that was deployed for quite awhile, he said they all made it back to the States safely, but they were having a few problems that caused some delays but they had made it to DC when he called me. He is planning to come over to our house Tuesday night if all goes as planned, can't wait to see him. Welcome home guys!
We went to the MLMC Circleville chapters Christmas Party & had a really good time. I won $44 from the 50/50 drawing which was great! They had a huge monkey there that they auctioned off, it was so big it would take a flatbed truck to haul the thing. I am going to try to get pictures from Pixi or Oatmeal for the Missing link Website. I usually take my camera with me everywhere, but here lately I would forget my head if it wasn't attached. We ended up leaving party early, I got tired quick & my bones started aching. I wanted to stay but my body was not up for it.
Sunday we received a wonderful gift of sundry items, staples & a toy for each of the kids from the Organized Labor of Central Ohio. Bill Davies, a very dear friend & fellow motorcycle enthusiast, who also happens to be in the International Brotherhood of Electrical Workers (IBEW) put our family in for this. They provide this to Union workers that have fallen under hard times as well as the community every year. Marc & I are both in Union, OCSEA but we had no idea that this program even existed. The set up they had at the UAW was unbelievable & very streamlined. The people were all very friendly as well. The whole thing was just amazing. I want to send a huge thank you out Bill Davies (who was right there out front smiling real big when we pulled in) and to everyone that was out there volunteering, to all the unions, companies & organizations that made it possible.
While I am thanking people I want to include Ruth Gerding for her donation & for diligently keeping me in her prayers. I have only known Ruth for a short time in the whole scheme of life but the impact she has had on me has been tremendously motivational & encouraging. I know I have a lot of Prayer warriors out there so I don't want anyone to feel left out, thank you all so much. Keep doing what your doing because it is working!
When we got home Sunday Misty told us that Paige was giving her a pretty hard time & a lot of attitude while we were gone. So we ended up sitting all 3 of the teenagers down & had a talk. About attitudes & helping out. it is nothing we have not told them before, but a refresher was in order. Well see if it gets better, I hope so for everyones sake. Katie said she had a good time at her Grandma Jill's, Zack was his typical self all weekend wired for sound & full of questions (mostly how do you spell this, how do you spell that). He keeps saying he wants 100 things for Christmas. Paige actually sat down with him last weekend & made a list of 100 toys from the adds, I told her she is nuts & I keep having to explain to Zack he is not going to get 100 toys from Santa, he has to give toys to the other kids as well. I tell you what I must admit for as rotten as Zack is he is very smart & he does not forget a thing you tell him. Lets see what about the other kids, Paige went to her dance Friday night & cheered Saturday afternoon, both girls cleaned their room Sunday & even straightened up their clothes in the dressers (I am shocked) Brandon on the other hand moved his piles around to different locations in his room & said his room is "picked up"... The smell of a 16 year old's room during wrestling season... you cannot imagine, I refuse to go in there, I will admit it, I am scared LOL.
This is Katie & Brandon this morning before I took them to school. So for the next few days I am not planning on doing to much of anything until I get "juiced" back up & my ANC starts coming back up. Aunt Lynn, I hope you are not snowed in to much, Aunt Bonnie good luck with the move. I love all of you,thank you for being there for me & the family we could never do this as well as we are without all of your prayers & support.
Saturday, December 13, 2008
December 13, 2008
12 days until Christmas!
I am still holding up pretty good for my counts being so low. I notice as the day runs its course so goes my energy levels. Typically by the end of the night I am usually moving around like an old woman with osteoporosis. I often ponder what my life is going to be like when I get done with all of the Chemo treatments. Is it the Chemo, is it the Cancer or is it a little of both that is wearing my body down so much. When this is all over am I going to wake up one day & be "normal again" Me & normal have never been in the same sentence so I guess that is a bad analogy. Call it Chemo Brain but I was looking at my Labs the other day & I did not realize it but on my last post it was my 100th day fighting this cancer. WOHOO! When I was first diagnosed with the Leukemia the outlook was very grim, they have since looked at my cytogenetics & given me a 50 to 60% chance of 5 year survivability, which may not sound good to some but for the type of Leukemia I have this is a very good prognosis. Marc is not happy with this, I call it a crap shoot & break it down to it's a fifty fifty shot, I would take that bet in Vegas...
I have noticed that I am starting to get more followers to the Blog & the site hits are nearing 5,000 & I did not start counting those until I was about a month into my cancer treatment. I want to thank all of you for walking down this path with us & being so positive & supportive. There have been more good days than bad & the bad days don't seem so bad knowing that I am not going through this alone.
Marc got a message from Coach Gibson yesterday, his wife Jenifer works for ACCOR, all of the employees there gave our family a very nice gift for Christmas. I also want to thank Alice Chapin for her donation as well.
I have been trying to keep up with the news everyday you hear more & more people are being laid off & everyday life in general is becoming more strained for most families. It is really getting ugly out there & I have a feeling it is going to get a lot worse before it gets better. It is times like these that everyone sick or healthy needs to have a strong support system in place. The outpouring of support has not only been for me but for Marc & the kids as well. This is so important to them. I think in times like this it is not uncommon to have a tendency to focus so much on the person who is ill that the rest of the family can easily become a part of the shadow. You all have been so wonderful & positive keeping me motivated in this fight & always asking about the kids & Marc, they have good days & bad days to. I just want everyone to know that your prayers & support are helping them get through this as well.
Brandon had another wrestling meet against Jonathan Alder last Thursday night. He wrestled 160 again & pinned the first kid real fast his second match he won in overtime 12 to 10. Paige has a Basketball game against Fairbanks that she is cheering at today, Katie's Grandma Jill came & picked her up for the weekend, Brandon is going to Columbus for Chipolte with friends & Zack is stuck with us. Misty has been sick for about a week so she has pretty much been staying in her room.
Marc & I pretty much have all our Christmas shopping done. This is a huge relief. Normally Christmas sneaks up on us & we put it off until the last minute & hit all the stores in a mad dash. This year I had the time but I just did not have the energy to go out plus my counts have been to unreliable to be around crowds of people. In the past Marc & I, have always dotted to an excess on the kids & in all honesty we are probably guilty of materializing Christmas too much for them. As much as we both love Christmas somewhere along the lines we got away from the true meaning of it. So this year we downsized tremendously what we are getting for the kids. We sat down & talked to our 3 teenagers about it, I know they were bummed a little by their facial expressions but they said they understood. I think many families this year are facing the same predicament in one form or another. Don't get me wrong our kids are going to have a good Christmas, we set a budget this year that was a bit smaller than usual & the big difference being we actually stuck to it for once. Zack still believes in Santa Clause so we have really been having fun with that this year! (I am trying to get Marc to dress up like Santa, but he is not taking the bait).
Marc is not typically with me when I write these, he is usually at work & reads them when he gets home. I find this comical for some reason. When he is here & I am updating this I always ask him if he has anything to add, his answer is usually nope. It's not that he has nothing to add, he is just more of a private person. I know one of these days he is going to throw me off & say yeah.
Thursday, December 11, 2008
December 11, 2008
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
1 Dec------90----3.4------2,270------10.0--------255------------N/A
2 Dec------91----4.0------3,500------10.5--------250------------N/A
3 Dec------92----5.0------4,400-------9.5--------183------------N/A
4 Dec------93----4.4------3,800-------9.2--------196------------N/A
5 Dec------94----3.5------3,400-------9.3--------170------------N/A
6 Dec------95----3.9----Unknown----9.9--------175------------N/A
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1---------31------------N/A
My counts are in and as you can see they are dropping, except my Hemoglobin, it is holding pretty steady on its own. My neutraphils are nonexistent at the moment, so I am on "extra super safe mode". I can't believe I hit my Nader so fast again this time. It surprises me that the neupogen shots are not giving me a boost I need, I can only imagine how fast it would have happened if I was not taking them.
My Platelets as you can see are dropping as well, it is only Thursday & I do not get labs drawn again until Monday. It is questionable if I am going to be able to make it through the weekend without a platelet infusion but I am going to try. I suspect if I can make it, by Monday they should be practically non existent. It sounds weird but I am comfortable enough with this cancer & my body that I can tell when they get to low without the lab report. There are the obvious physical signs between the bruising, the petechiae rash & bleeding gums, when it is coming I can just tell even without that, all I can say is its weird.
So I know Aunt Lynn is probably reading this & saying so why not get the infusion now if you know you are going to get that low.... Well part of me beating this cancer, is me beating this cancer. I am trying to push my body to do what it is supposed to even though it does not want to. I know I can't control these things down at the cellular level in my body, but it is my body & like me it is very stubborn. I don't want to give it more than what it needs to get the job done. For example my Hemaglobin, since I have started my consolidated chemo I have been within the parameters to receive a blood infusions & told them no I wanted to try & make it on my own & oddly enough my body complied. I never push it to a dangerous level, not to mention my Dr.s would not let me. So I am going to wait this one out & see what happens.
My vision is actually doing better this time, I was worried because I have soft white auras around everything I look at but it is not drastic like the last time.
Last night we went to Brandon's wrestling match here in London. He wrestled the 160 weight class. He was tech faulted the first match against Hillsboro & won his second match against Clinton Massi. Brandon looked real tired though, he is not in as good of shape as he used to be & it showed. Don't get me wrong there is not any fat on that kid & he is in a hell of a lot better shape than most but you can tell a difference from his 8th & 9th grade wrestling days. He wrestles tonight at Jonathan Alder & then they have a big break.
I got a phone call with wonderful news from Maj Mulhorn at my Unit yesterday. " HQ AFRC/SG has approved MSgt Golden-Vest for a "Participation Profile 4" while her treatment and worldwide duty waiver are being processed." So all you non-military people are asking so what does that mean. In it's simplest form I can start going to Drill & complete my annual tour days. My waiver expires at the end of March 2009 so they will have to re access me then. Up to this point since I was diagnosed I have not been allowed to participate even if my counts were up & I was feeling good. Maj Mulhorn said the unit is going to work with me to schedule my drill periods around my treatments & recovery periods, so this is wonderful news to me. My military career has been weighing heavily on my mind since the whole cancer thing happened so this is a big stress that has been lifted for the moment.
The other night the doorbell rang & it was a box of Cheryl Cookies from my Aunt Sue & Uncle David, Thank you! Zack was quite the little gentleman. He carried the box around to everyone (he went to Grandma/Misty first). Once everyone got a cookie only then did he get one for himself. It was too cute! So far this week has had all white days at school, no trouble, Whew!Each day after school he has his routine of taking off his coat & shoes then telling me who in his class had color changes on their chart & who got red & then he smiles real big with his big dimples showing & says I got white! He loves to show off his school papers & reads me his daily book. To be that young again, the older kids don't get excited to show us their homework, or tell us what kind of day they had.
I was able to get our Christmas cards figured out, we still have not done a family portrait so I had to get a little creative this year. With my Chemo Brain this was a major task.
I found out this morning MSgt Bill Larue from my Unit is coming home, he is a good friend & has been deployed since this summer for Operation Iraq Freedom/Operation Enduring Freedom, I am looking forward to welcoming him home.
With my Nader being in full effect I am not certain how my weekend is going to go. Marc & I still have Christmas shopping to do, there are holiday parties for Missing Link & ORW so I think we are just going to have to take it day by day & play it by ear.
So to calm all your fears because I can hear it in the comments now, I will not push myself to hard, I will take it nice & easy.
Tuesday, December 9, 2008
December 9, 2008
The weather has went from one extreme to another here. Where it was cold & icy last Saturday, today it is unseasonably warm in the high 40's & very wet.
I woke up this morning to the beginning stages of white out/tunnel vision. I was hoping that it was a one time freak occurrence with the last round. I suspect at the rate I am going, by tomorrow or Thursday I will not be able to see at all again. I did go in & see my Opthamologist . He still believes that I have Cornea dystrophy but that the vision problems I am currently having are unrelated to the dystrophy & it was a fluke that he caught it. He said the dystrophy may be an issue when I reach 50. He believes the tunnel vision/white out is directly related to my Chemo treatments, it is affecting my ability to lubricate my eyes, he said this should not cause any long term damage but they are keeping a close eye on it LOL.
This week should get real interesting, I won't be able to see & I am much weaker than last time, I have been hobbling around like an old woman. Literally every move I make you can hear my bones & joints cracking. It's pretty loud Marc thought it was the floor making the noise last night.
I look at my Blog everyday for the comments & to see the different locations people from around the world are checking up on me from. I am so encouraged by the number of visits my site has received. There are days this all still seems surreal to me, usually its the good days. The not so good days there really is no way to deny it.
Sending a huge thank you out to Sharon White for her very generous donation to my Leukemia Fund. Each time we get a donation whether it is large or small it never ceases to amaze me. Times are tough, people are being laid off from their jobs, the cost of gas is down but the cost of milk is up.
Marc & I sat down tonight to look at where we are at financially with treating my cancer. Once I was diagnosed the original plan was to try & raise $2500 this year. We based this amount on what we each had in both of our savings accounts. We assumed that would be enough for the medical deductibles & copy's so we tapped those instantly, thank god we had something put back. I think I said this in a previous post but when this bomb dropped we had no idea what we were going to have to foot upfront, what would be covered by my insurance, what would not be covered by insurance & the prescription costs. We have just started to complete the 3rd phase of my inpatient chemotherapy treatment.
Realistically best I can tell, it is costing us a little over $2500 upfront as I go through each phase of treatment (& this is with, in my opinion, pretty good insurance). I have not had any major complications (knock on wood). So at this point I am adjusting our fundraising goal to $5,000. Everyone who knows me, knows that I am a realist first so when I set the original goal I did not want to set one that was unrealistic. Now I must say that everyone who knows me, would tell ya in the past I have also been an adamant pessimist. So I can't believe that we have almost surpassed the original fundraising goal I set. Among other things I have since had to change my way of looking at life, being a pessimist is one thing I will not miss.
As we continue to fight this cancer, we really have no idea what that dollar amount is going to be when we start the 42 weeks of outpatient chemotherapy. No matter how much that amount may be, it really does not matter much because I know I am worth it. All of you are responsible in one form or another for me being here now through your prayers, your support, the donations you all are saving my life & I just want you all to know that we really do appreciate everything that everyone is doing for us.
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They call me Rooster
& Leukemia did not snuff this one!
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