January 31, 2009

I woke up this morning with a pounding headache & it has not went away all day. My night sweats & chills were real bad last night. I keep taking my temperature but it keeps reading normal. I think the broken sleep throughout the nights is starting to catch up with me. I have not been out of bed much at all today.

Paige had her friend Oliva spend the night last night, Zack swears that Olivia is his girlfriend, I don't think he gave them to much peace. Katie spent the night over at her friends house. Brandon did not get home last night until real late, he lost his first match & won his second. Early this morning he lost his match so since it is a double elimination tournament he is out & has to watch everybody else the rest of the day. Marc headed off to Columbus a little bit ago with Benny so for now it is just me & Zack hanging out & he is being a real sweetheart, he is watching Inspector Gadget in my bed now. He is a totally different kid when he is the only one in the house.

My 5th Bone Marrow Biopsy is this Wednesday morning followed by an afternoon appointment with my Dr. I am anticipating since the 4th Bone Marrow Biopsy came back at 1% Blast Cells that this one will be the same or 0% since the chemotherapy has continued non stop. If this confuses anyone what started this all was my first two Bone Marrow Biopsy's came back with 33% Blast cells in my Bone Marrow & 34% Blast Cells in my perepherial blood. My type of Leukemia, AML, is defined by the presence of >30% Blast Cells in the bone marrow. At this stage of the game with my treatment anything over 5% Blast Cells is not good & we have to re-evaluate & possibly start all over again. This is obviously worse case scenario next to me getting sick again. We won't get the results back from the biopsy for a few weeks but I anticipate that they will be 1% or less so we can press forward with the Decitabine, Maintenance Chemotherapy treatment.

Here are some of the pictures from the kids sledding down at the Missing Link Property. Katie although very apprehensive at first about going seemed to genuinely enjoy herself.
This was Zack's first time sledding & he absolutely loved it.
Brandon was not content with the big hill he had to make a ramp at the bottom to get some air with his snow board.
Paige was the first one down a hill & for hot chocolate.
Then there is the biggest kid of them all, Marcus!

I have a lot more pictures but I will try to upload them all into a slide show & post it on the Blog later.



The 445 Aeromedical Evacuation Squadron is hosting a Bl00d Drive in honor of MSgt. Sandi Golden-Vest on Saturday, Feb 7, 2009 from 8:00am-1:00pm.

Site: American Legion Post 526
526 Legion Lane
Fairborn, OH 45324
Site phone: 878-3831

Contact on Arrival: Major Kimm Sandusky (1-513-678-2715 ) MSgt Joseph
Drake (George Copfer, Post Commander )

While you are waiting you can become a Bone Marrow Donor as well, no appointment is necessary for this & there is no cost associated becoming a registered Bone Marrow Donor on this date at this location.

Beginning registration for the blood drive is 8:00am. Appointments are recommended; blood donors are asked to make an appointment by going to our website: www.donortime.com click on Find a Drive and use sponsor code: 986 Last Registration: 12:50pm
***Community Blood Center will provide juice and cookies and a t-shirt to all
blood donors.

January 30, 2009

Today's labs
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
20 Jan---140-----0.2------0----------7.7---------26----2 Units of Blood
21 Jan---141-----0.3------0----------9.5----------17----------------N/A
22 Jan---142-----0.7-----410---------9.0------13/43--1 Unit of Platelets
23 Jan---143-----1.8----1400---------8.5----------38----------------N/A
24 Jan---144-----3.3----2700---------8.4----------34----------------N/A
25 Jan---145-----5.9----4320---------9.0----------28----------------N/A
26 Jan---146-----4.5----3100---------9.1----------37------------N/A
28 Jan---148-----2.7----1100---------10.6----------64------------N/A
30 Jan---150-----2.8----1000-----10.4----------85------------N/A

Marcus is at work today, I know he struggled with leaving me at home but the kids don't have school today again so I will have lots of company. Marc left at 6am & did not get to work until a little after 7am he said the roads are still real bad. Brandon is having a 2 day wrestling tournament at Marion Pleasant I thought with school being cancelled that the tournament would be as well. After many phone calls the tournament is still on but there is no school bus for today so I had to write a release for him to ride with one of the coaches. I stressed coaches because I hear the roads are worse up north & I did not want him riding with a teenage driver.

It was snowing this morning when I got up pretty heavy but it stopped & then the sun came out by the time I had to drive to the hospital for my lab draws. It was so bright even with sunglasses on. I must admit even though it was right here in town I was real nervous & not just because the roads were bad. I do not know if it is my vision is off or if it is still my balance that is messing with my vision. So I just took it slow. My last trip out of the house was to drop off Brandon & Dakota at the school & pick up my lab report from the hospital. The roads were much better & the sun was even brighter. I felt a little more comfortable driving but I don't see me driving to Columbus or any other distance any time soon.

I want to say thank you again to Misty, she had a ton of food delivered to our house from Kroger's today. The kids were ecstatic especially when they saw the Smores pop tarts, chips & pop. Zack immediately wanted the Doritos it was too funny.

My labs were not what I had hoped they would be. The James Cancer Hospital called me & per my Dr. I am to go back on the Neupogen shots starting tonight & through the weekend until I get my labs drawn Monday then we will re-evaluate the situation. I noticed my hemoglobin is doing pretty good but my platelets are being very stubborn. They normally bounce back quicker so I do not know if it is because I am still sick or if something else is going on. I feel a little better each day but I am not going to push it I have never been in this position before. It was a major event for me to go out the two times that I did today. Each time I got home I went & laid in bed. I still can't stand for long periods of time I know this will eventually change but in the mean time it frustrates the heck outta me that I have hardly no strength.

You may notice that I have removed the fundraising progress thermometer that has been a permanent fixture on my blog. I chose to do so for a number of reasons.

First, as I have been using the funds for different expenses related to my Chemothearpy treatment, I decided it would be seem negative to see the amount raised appear to decline when in fact it is simply a reflection of your generous donations in action. And let me tell you the panic I feel when I spend a dollar of it! I am particularly aware of how blessed I am to have to have the money as a resource.

Second, after getting sick last week I really don't know anymore how much I am actually going to need, so a specific goal is impossible to determine. While I know there will ultimately be many expenses that I will incur, I do not want to mislead anyone by stating a number I can no longer be sure of.

Humbly, I ask that if you still are ever able to donate, please do so. The "Donate" button will continue to work and the Credit Union, will continue to accept any donations sent. Anything and everything helps.I still am in awe of the incredible support I have received from so many. Thank you for being a part of my success.

January 29, 2009

Nothing new to update tomorrow should prove more interesting with my labs. I am still tired & weak. I am taking the day off from Blogging, the computer screen is really bugging my eyes.

January 28, 2009

Here is how I look today, still holding a lot of weight & tired but compared to January 22, 2009 I look fabulous!
Today's labs
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
19 Jan---139-----0.2------0----------8.2-------2/35-1 Unit of Platelets
20 Jan---140-----0.2------0----------7.7---------26----2 Units of Blood
21 Jan---141-----0.3------0----------9.5----------17----------------N/A
22 Jan---142-----0.7-----410---------9.0------13/43--1 Unit of Platelets
23 Jan---143-----1.8----1400---------8.5----------38----------------N/A
24 Jan---144-----3.3----2700---------8.4----------34----------------N/A
25 Jan---145-----5.9----4320---------9.0----------28----------------N/A
26 Jan---146-----4.5----3100---------9.1----------37------------N/A
28 Jan---148-----2.7----1100-----10.6----------64------------N/A

I should have went & got my labs yesterday but somehow I lost a day so I changed up my routine & went to the New lab today. The new lab is definitely not Sue, they did get me on the first stick though. I asked them to call me with the results & they said they do not do that her if I want them I have to write a letter & then come back in & pick them up. She said since we were in a level 2 snow emergency she would do it today so I would not have to come back up. I thought to myself gee thanks. Man Sue spoiled me . I am going back in on Friday to have her draw my labs again before the weekend. I hope my ANC comes up.it is down quite a bit from what it was when I left the hospital if it drops below 1,000 I go back on the Neupogen shots again. Marc said it is so close I should start them back up tonight. The lab results are supposed to be faxed to my Dr. at the James so I went ahead & called them & they told me to hold off for now my both my platelets are starting to recover & my hemaglobin is doing good so they want to see my ANC & WBC do the same. We will see Friday I guess.

We had snow then freezing rain & then snow again so there is a layer of ice coating everything in all I think we got about 4-5 inches of snow. I hope that is the end of it. The roads were a mess when Marc took me to the hospital. I am still to weak to drive or do much of anything. I am still resting a lot & will continue to until these infections have completely cleared up so I can recover. I have a slight cough that came on the day we were leaving the hospital. I think it is from whatever is in my lungs. I still am fever free, the sweats & chills continue to taunt me day & night. I just keep telling myself I want to be well, I am really tired of being tired all the time. Slow & steady wins the race I just need to keep my but in bed for now.

The kids of course did not have school today. So it has been video game heaven in the house. Brandon & Paige have been thumb warriors texting all day. Katie hasn't said to much here lately. She has been more quite than normal ever since she came back from her dads. She dropped a bomb on me the day I came home from the hospital about possibly going to live with her dad & she has been acting weird ever since. It usually takes her about 3-4 weeks for her to get back into the swing of things here. So I keep waiting on her to snap out of it. We talked a lot about it this afternoon.

Zack got a splinter in his foot running around without his socks on. So Marc played Dr. & tried to get it out as you can see Zack was not happy when it was over.
Here's Paige always posing for the camera
Brandon with his phone in hand ready for the next text message while watching CMT. He's going country now.
Katie was lounging on the couch watching Zack Play My SIMS's
The Zack Attack!
Of course we can't forget Spike!
Did somebody say Brrrrrrr, Marc was out trying to clear the sidewalk & driveway so we could go to the hospital.

January 27, 2009

How good it feels to be at home. The kids were all happy to see me & I them. Zack gave me a huge hug boy I needed that. Spike was up in my bed at least 3 times last night & once this morning. Marc actually picked him up & put him there when he was whining because our bed is so high he can't jump up.

I am still very sick but no fevers. I had hot & cold spells all night long followed with sever sweating. IT is daytime & I am awake doing the same thing. The sweats are bad & I have yet to get a break from it. Marc is keep a very close eye on my temperatures so far so good. My nose is also so sensitive to smells. I think the anti fungal they have me on is doing this. The anti fungal is Cephalexin, smells strongly of sulfur & I have to take it 4 times a day. I have not figured out what it is but there is something in the house irritating my nose something awful.

Marc wanted me to thank everyone that donated time for him to be able to be with me while I am sick. I have absolutely no energy it is a major effort just to get out of bed. I do not know what I would do if Marc wasn't here I am a mess. I can't think straight, I feel unsteady & dizzy all the time. It was all I could do to sit at the table with Zack last night while he read me his book for homework.

I called my RN Sue at the Chemo Clinic here in London to let her know I would be in Thursday for labs & since I don't have a PICC anymore she will not be taking care of me. I have to go to the Park Ave Building that is part of the Hospital they have a lab there so this should be an interesting adventure. Sue spoiled me with calling & telling me what my counts are & being there if I need something else.

My 5th Bone Marrow Biopsy is next Wednesday in the morning & then I see Dr. Walker in the afternoon so that is going to be a long day she may order a follow on CAT Scan to check to see if the Fungal Infection is still there. I am going to go for now may be a day or two before I update again bad weather is moving in & the kids will more than likely not have school.

Know that I am still fighting the fight & I appreciate everyones support & prayers as we battle though these stumbling blocks on my road to recovery.

January 26, 2008

Here are today's labs
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
15 Jan---135-----0.3------0-------7.9/9.4-----------35--1 Unit of Blood
19 Jan---139-----0.2------0----------8.2-------2/35-1 Unit of Platelets
20 Jan---140-----0.2------0----------7.7---------26----2 Units of Blood
21 Jan---141-----0.3------0----------9.5----------17----------------N/A
22 Jan---142-----0.7-----410---------9.0------13/43--1 Unit of Platelets
23 Jan---143-----1.8----1400---------8.5----------38----------------N/A
24 Jan---144-----3.3----2700---------8.4----------34----------------N/A
25 Jan---145-----5.9----4320---------9.0----------28----------------N/A
26 Jan---146-----4.5----3100------9.1----------37------------N/A

I sweat like a freight train through the night then I froze because the bed was soaked. I woke up to Carli's smiling face saying you want to go home today. I sat up & said Hell Yeah! She laughed & said she was going to e-mail Dr. Walker my oversight Dr. & work on my discharge paperwork & new prescriptions. I am so relieved I miss the kids so much. It has been a very long week & one if not the toughest of my life. In talking to Carli my fever broke sometime between Thursday night & Friday Morning, they removed my PICC Friday afternoon, the PICC culture came back negative. The CAT Scan showed whited patches on my lungs so they started me on the anti fungals right away & they are sending me home on a months supply of anti fungals. They are uncertain which was the cause of the fevers because they stopped before the line was out & before the CAT Scan. I have to have a follow up CAT Scan in a couple of weeks to check to make sure the white patches on my lungs which is assumed to be a fungal infection is gone. They cannot confirm it is a fungal infection without doing a bronchoscopy procedure & they are not going to do one. I will be getting my 5th Bone Marrow Biopsy in a couple of weeks as well to see where we are at with my Cancer before we start the maintenance chemotherapy. I asked Carli to make sure Dr. Walker finished my Employer letter to have my disability continued since I cannot go back to work like I had planned to try in a couple of weeks. So it looks like that will get pushed back another month or so which is for the best. It is going to take me a few weeks just to get my strength back from this.

Marc was up here at the hospital first thing this morning he is patiently awaiting my discharge paperwork. I guess when Marc brought Zack home from Misty's yesterday he said "where's my mom?" Marc told him I was still in the hospital he said he did not care I want my mommy. Marc said he didn't seem pressed about it he was more concerned I wasn't home. It will be nice to surprise him & the rest of the kids later on this afternoon.

Dr. Lam Came in & assessed me & she is going to send Dr. Flynn down here to access me one more time before they let me outta here.

The important thing is I'm going home!

January 25, 2009

From what I hear the Benefit was a big success last night. There were people coming in & out the whole time with takeout. Several dined in as well, Marc's Dad & his girlfriend Pat came up, There were about 30 or so Missing Link Members from Columbus that came, Paula & her husband came up for their "date night" I thought that was cool, Misty brought Zack up as well as many members from the London Community. Marc said he thought there was a couple of people there from ODH but he could not remember their names. Paige took some video of it so I can't wait to see it. Mom Drum & the Marysville Rainbow girls came & helped out. Marc said Mom Wendy was in the kitchen all night cooking over a spaghetti pot. Katie & Paige tried to help out & Mom Wendy ran them outta the kitchen & told them to go eat. The Rainbow Girls girls were very busy serving everybody, Marc said all the girls did a really good job. This Benefit means a lot to us I know Wendy & Keith Hall really put a lot of hard work into it along with all the girls & it came from the heart. Thank you so much London Assembly #208 & Marysville Rainbow Girls to, you ladies are awesome!

While everyone was at the Benefit I was taking a much needed rest. It's nice to look over this morning & see my lonely little IV Pole only has 2 bags instead of the 8 bags that it was holding all week long. My C-Diff culture came back negative today so I am off contact per-cautions. We kinda figured the antibiotics was what caused that problem, they had me on so many powerful antibiotics it was a matter of time before they altered my digestive tract.

Here are today's labs
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
12 Jan----132----0.7-------448-------9.5-----------117--------------N/A
15 Jan---135-----0.3------0-------7.9/9.4-----------35--1 Unit of Blood
19 Jan---139-----0.2------0----------8.2-------2/35-1 Unit of Platelets
20 Jan---140-----0.2------0----------7.7---------26----2 Units of Blood
21 Jan---141-----0.3------0----------9.5----------17----------------N/A
22 Jan---142-----0.7-----443---------9.0------13/43--1 Unit of Platelets
23 Jan---143-----1.8----1400---------8.5----------38----------------N/A
24 Jan---144-----3.3----????---------8.4----------34----------------N/A
25 Jan---145-----5.9----????------9.0----------28----------------N/A

They did not come in & draw my Labs until 7am & they stuck my left hand again, she got it on the first try but I am so tired of getting stuck in my hands it is really painful. I was looking at my right bicep where the PICC line used to be, the spot is about the size of my pinkie fingernail. It feels so weird to not have the line in, my right arm mobility & strength has been so diminished since they put it in back in September. My bicep is saying wimpy wimpy wimpy like the old Hefty trash bag commercials. We still do not have the culture back from the line but is it comes back positive it is hard to believe that little hole about took me out. Look at my WBC counts my little soldiers are multiplying like crazy. I don't know my ANC Counts because no one down here knows how to do the calculations but they took me off the Neupogen Shots so I am close if not over 5,000 Earlier this week I was dying & that is no exaggeration but today I am alive & well WOOHOO!

I had a low grade fever of 99.9 last night around 10ish but I haven't had any fevers today. They are taking me off the IV antibiotic Vancomycin & putting me on something else. They are pushing to get me on all oral antibiotics & mentioned that my counts were doing really good & they may send me home tomorrow, so I am very excited. My longtime best friend from Lima Lisa Benhke, is coming to see me today. I have not seen her in years & I can't wait to see her. Kathy Putt & Momma Morrison are also coming up later on this afternoon I am sure to be smiling all day my face is gonna hurt tonight, so I am so glad I took a break from all visits yesterday. I need this day really to refresh & re-energize. I felt better than I have all week & I haven't even had my shower yet.

It just started snowing outside & it looks like the inside of a snow globe from up here the snow flakes are so big!

January 24, 2009

Spaghetti Dinner Benefit Tonight Saturday, January 24, 2008 5-7:00PM
The Benefit will be held tonight 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.It is my understanding that Kroger donated most of the food for this Benefit & National City has raised money as well. If you would like any information please contact Keith Hall @ 614-302-0431or airforcekeith@sbcglobal.net>

Marcus, Katie, Paige & Zack will be there, I am still admitted at the James but I am there with you all in spirit. I am pretty sure Paige will be running around with the video camera if you all want to put a message on there for me feel free I will be watching it as soon as Marc brings it up to the hospital. I also hope to have pictures to post of it on m blog as well. Both Marc & I used to be on the Advisory Board & I was also the Treasurer for the London Assembly #208 Rainbow Girls when Katie & Paige were active in Rainbow.

Here are today's labs
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
12 Jan----132----0.7-------448-------9.5-----------117--------------N/A
15 Jan---135-----0.3------0-------7.9/9.4-----------35--1 Unit of Blood
19 Jan---139-----0.2------0----------8.2-------2/35-1 Unit of Platelets
20 Jan---140-----0.2------0----------7.7---------26----2 Units of Blood
21 Jan---141-----0.3------0----------9.5----------17----------------N/A
22 Jan---142-----0.7-----443---------9.0------13/43--1 Unit of Platelets
23 Jan---143-----1.8----1400---------8.5----------38----------------N/A
24 Jan---144-----3.3----????------8.4----------34----------N/A

Dr Flynn & Dr. Lam came in to see me early this morning. I have been able to finally make it 24 hours without a fever & my counts are on the rise. Dr Flynn said that the spots on the lungs that they found from the CAT Scan he thinks may have been there before but he cannot discount them, the radiologist said they are a fungal infection. I asked him if they were going to do another test to find out for sure & he said no. They are going to take me off of the Caspofungin & the Tobramycim IV antibiotics, then put me on a pill form anti fungal Voriconzole, something about insurance costs & the medication being very expensive & leave me on the Vancomycin IV antibiotic.They are changing my meds so fast I cannot keep up with what I am on & what I am not on.I also asked Dr Flynn about the Blood Infection gran positive cocci I was positive for, he said that was the only Blood Culture that came back positive & it was taken from the ER & since then all the rest have been negative. They have not got the results back from the PICC to see if it was the source yet so we will have to wait. They want to continue to see my counts rise over the next few days & me to stay fever free. IF that happens we will start talking discharge somewhere around the first part of next week so keep praying!

I slept a lot better last night which was long over due. My PCA "Nick at Night" woke me up at 4am to draw my am labs, I was nervous about him sticking me in my hand but he got it the first time.My PCA this afternoon Wendy had to draw a lab again in the same hand so I got real nervous again but she did real good, I had so much bad luck getting stuck the day before so it has been a nice break getting stuck & landing it on the first attempt, I am so grateful.

January 23, 2009

Here are today's labs
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
12 Jan----132----0.7-------448-------9.5-----------117--------------N/A
15 Jan---135-----0.3------0-------7.9/9.4-----------35--1 Unit of Blood
19 Jan---139-----0.2------0----------8.2-------2/35-1 Unit of Platelets
20 Jan---140-----0.2------0----------7.7---------26----2 Units of Blood
21 Jan---141-----0.3------0----------9.5----------17----------------N/A
22 Jan---142-----0.7-----443---------9.0------13/43--1 Unit of Platelets
23 Jan--143-----1.8----1400---------8.5----------38----------------N/A

Benefit Scheduled for Tomorrow Saturday, January 24, 2008
Marcus & I used to be on the Advisory Board & I was also the Treasurer for the London Assembly #208 Rainbow Girls when Katie & Paige were active in Rainbow. Mom Wendy Hall, Mother Advisor from The London Assembly #208 Rainbow Girls contacted me a few months ago & expressed that they wanted to do this 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.It is my understanding that Kroger donated most of the food for this Benefit & National City has raised money as well. If you would like any information please contact Keith Hall @ 614-302-0431or airforcekeith@sbcglobal.net

I talked with Mom Wendy this morning I am so excited about the Benefit & yet I am so bummed I cannot be there in person. I will be there in spirit. Marcus & all the kids will be there but Brandon he has another wrestling tournament. He told me he would miss it if I wanted him to but I told him no the Benefit is only 2 hours the tournament is an all day event & he should go to that it would be more fun for him. I am making Marc take the video camera so I can see it & me & Brandon can watch it together later.
This is Aunt Bonnie & I before she left yesterday I miss her so much already!

Yesterday I was here all day with no tests performed. Carli was not here & I got a conflicting lab report from her replacement that said one of the cultures showed Strep but when they cultured it, it was negative. My RN that was treating me was in my face most of the morning doing my blood draws & meds. By lunch time she had a nasty little cough & did not put a mask on, I asked her to & she said it was just a little tickle in the back of her throat & she would never jeopardise her patients, I told Marc to get me a mask. She would come to my room without it on or it hanging on her chin more than once so I had to tell her about it. Well I have her again today & she still has that cough but she is wearing her mask all day.

Dr Flynn came in & asked where my Aunt was, he wanted to know if he made her upset talking about her niece, I told him yes, he said & you looked like you wanted to hit me & I told him I did he said you are not supposed to agree with me Sandi & I told him look I am really sick & I don't need that from him his supposed to treat me medically not make me his joke & that I was tired of it from him. He did not have much to say when I told him that hopefully he will be a little more respectful now & just do his job.

I had minimal sleep again last night, I sleep in 10-15 minute intervals & wake up throughout the night. Last night they came in & drew a viral specimen & sent it to the lab, the day shift is saying the lab never got it. Marcus was up here first thing again today. I am so grateful because today held so much pain & drama that I don't think I would be holding up as well as I am without him.

I am still receiving the same 3 antibiotics & fighting the fevers. Carli was back today YES! I told her the latest news flash I have diarrhea today so I could possibly have C-Dif or VRE or it could be from the antibiotics were not sure they cultured that. I also expressed to her all my concerns from the nurses not wearing masks & gloves to Dr. Flynn's arrogance with me, my missed appointments for tests from the nurses not paying attention to my orders, the fact that I have been here 5 days & no one knows what is wrong with me & I am still having these high grade fevers etc. Carli had already talked to the Charge nurse on this floor Wed & she went & talked to her again. Carli is trying to get me moved up to the 10th floor where they are used to really sick patients & they follow the precautions because they know how dangerous it is first hand. She is also ordering me a CAT Scan of the Chest & talking with Dr. Flynn because he has not ordered anymore tests & it appears he is no longer looking for what is wrong with me. Carli told me that every single Blood Culture they have done so far has come back negative. Obviously something is causing these fevers & they need to find out what that something is. So I should get to talk with her later this evening to see what she found out.

In the mean time I had a real rough afternoon today at the hospital. Dr. Flynn ordered my PICC to be removed & tested to see if it was the source of the infection. I did not realize how huge the line was. The specimen for the lab is 6 inches. So that left me with only the peripheral line they put in the other day & My 2 PICC lines have been continuously in use since Monday 24/7 with fluids & therapy drugs. Speaking of which I got 4 grams of magnesium today via IV. So the nurse that coughs got to take out my PICC, she has never done one from the arm before only the chest so they brought in the float nurse to watch her & make sure she does it right. She actually did pretty good except she got blood all over the bed because she did not have the specimen container close by.
.After that was done the float nurse had to put in 2 more peripheral IV lines. I really do have a hard time with needles. I tolerated the first one pretty good. He had a real hard time finding another good vein & when he did he could not get a good flashback so he looked around for another one & tried for a second time & could not get it, he dug only a little but it hurt so bad I was starting to tear up & he stopped. They are using the old peripheral line I got 3 days ago in the mean time. I am still going to have to get stuck daily every time they need labs drawn & since I only have 2 lines odds are they will be back to put the third one in. The only bad thing is these lines are only good for a few days & they have to be moved. The meds that I am getting are so powerful I hope they do not infiltrate or I will be in a lot more pain.

There really is no way around any of this. I just hated to lose my PICC as inconvenient as it was to have & I lost a lot of right arm strength over the past 5 months it has saved me hundreds if not a thousand needle sticks seriously.


So I got my CAT Scan done & hopefully Carli will have some good news for me later!

January 22, 2009

Here are today's labs
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
9 Jan-----129----3.9------3800-------8.7-----------163--------------N/A
12 Jan----132----0.7-------448-------9.5-----------117--------------N/A
15 Jan---135-----0.3------0-------7.9/9.4-----------35--1 Unit of Blood
19 Jan---139-----0.2------0----------8.2-------2/35-1 Unit of Platelets
20 Jan---140-----0.2------0----------7.7---------26----2 Units of Blood
21 Jan---141-----0.3------0----------9.5----------17----------------N/A
22 Jan--142---0.7----443-----9.0----13/43---1 Unit of Platelets


The top left picture is my IV pole today, I call it my Christmas tree. The top right one is one of many PICC Blood Culture draws, they really had a hard time getting blood to draw out of it. The is a picture of the Blood Culture Bottles that they have to draw on me every 24 hours. Speaking of Blood Cultures did I mention that yesterday they blew 2 of my veins in my left hand trying to draw one of the Blood Culture tests. They had to bring another PCA in because I would not let my PCA touch me again after he started digging & blew the 2 veins. Third time is the Charm because she did get the butterfly her first try, I told here where were you 20 minutes ago when I needed you:) The 2 pictures with green scrubs & needle to skin are of the 3rd/successful draw for a Blood Culture. The other picture is the peripheral line they had to put in me to accommodate all of the antibiotics & blood products I keep getting. My IV medication list has increased daily. They are still trying to figure it out, they only know I have the blood infection, the specific type is still unknown so they cannot tailor my treatment yet.

Marc came back up again today we are still not out of the woods the stress is really waring him down. Don't get me wrong I am glad he is here by my side & I would not have been able to get out if bed for the toilet or a shower yesterday without him. I know he is up here on FMLA leave without pay right now because he ran out of leave a long time ago. Some people in the past have been very generous & donated some time to him but he has exhausted that as well. I think he is too scared not to be here right now, that there are no assurances coming from the Dr.s at this point. Until they get theses fevers under control I don't know what to do. I am starting to get even more nervous because how long can my brain keep tolerating temperatures over 103 every day, several times a day with out being damaged by it.

As you all know I have always pushed myself when I have been up to it. Well yesterday remember I said I could not get out of bed with out Marcus. Up until yesterday at 9am I have been able to move around for the most part without difficulty, maybe a little slower than normal. At 9am I tried to get up to go to the bathroom & it was like a lightning rod shot through my neck & spike when I leaned forward to start to get out of bed, because of that pain my reflex was jerking my knees in towards my chest was automatic, the pain was instantaneous in both of my calf's. I yelped & laid back because it took my breath away & started sweating profusely immediately. I had tears running down my face the pain was more severe than Labor pain. Marc kept telling me it was from not getting up & moving around enough that I need to try to get out of bed. I told him no I don't. The Nurse came & gave me some morphine for the pain & paged Carli. In the mean time it took about 7 minutes, a lot of pain & a ton of motivation from Marcus plus bore most of my weight to get me to the side of the bead & on the toilet which is about 10 feet from my bed. I was bawling like a baby.It took about the same amount of time to get me back in bed. Carli ordered an ultrasound & Doppler of my leg veins & arteries & wrote an order for the Dilaudied, because the Morphine makes me nauseous. We found that the Dilauded does not do a thing for me which from what I hear is stronger then anything I have taken to date. We had to go through all that pain again to get a shower, only to have my fever break when I got out & I instantly soaked my clean bed clothes, you could actually wring he water out. So I had to get back up & get dry clothes on. I was so wore out by the time Bonnie got here but I was so happy to see her. Bonnie was able to spend the night, she went with me down to my ultrasound to make sure I did not have blood clots causing the pain.




Bonnie & I stayed up talking until a little after 11pm when I had to take my Benadryl & I was out by 11:30pm. I woke up at 2am from a fever spike up to 103 again. They gave me 3 more Tylenol to bring my fever down. So about 4am my fever broke &my bed was soaked literally. Bonnie slept in the recliner she looked so comfy. I am so glad she came down.


Benefit Scheduled for Saturday, January 24, 2008
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