Welcome to my Blog!

This was originally intended for those who have AML & stumbled across my blog in their search for information or survivors. I also used this to keep in touch with the real world, my support system was vital in my recovery and I also used it to sustain some form of sanity. I am a realist, and I have learned this has been and always will be a fight for my life. The initial leukemia battle is still here in the archives for all my fellow AML Warriors. There is so much information and no one wants to tell you. If you are just starting your treatment you may not even think to ask questions just because you are so sick. Please checkout my archives but start back in September 2008 and work your way towards today. There is a lot to read and a ton of type-o's, but it is all there the good the bad and the ugly. I challenged the Doc's, I always asked questions and pushed them for answers even if I did not like them. The Docs are not used to that so if you can, I encourage you to challenge them. They need to remember that although you are very sick you are not dead! My Blog content has morphed over the years. It's all about my life experiences, definitely my opinions and the lifelong impacts of the disease that pop up from time to time. I am a Gen Xer & I have a lot to say about everything. Rarely do I hold back or turn on a sensitivity sensor. I post regularly on Facebook nowadays just because it is faster. I welcome your comments, questions or feedback.





Saturday, December 6, 2008

December 6, 2008


Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
28 Nov------87----2.2-----1,500-------9.9--------286------------N/A
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

Marc brought up Paige & Zack last night to see me. Katie was not feeling well & did not want to come up. Brandon went to a funeral viewing for one of his wrestling team members grandmother. We went down to the cafeteria here at the James & got dinner, it was ok but not like home cooked meal that's for sure. Zack was wired for sound all night, I think Marc was a little irritated with him, depending on the day he can test the patience of Job. He had my nurses cracking up in the room. Zack had a question about everything, especially when my nurse was hooking up my chemo, does that shot hurt, where is the blood at etc.


My Dr. brought in my letter for disability while we were down at the cafeteria, it was the one from a few months ago so it is all messed up & not current info so I have to get her to fix it this morning before I leave. I was hoping this does not delay my release to much, it is about 10:30am & there is still no sign of her or my Nurse Practitioner. So it is not looking good for an on time release. Typically I have my draft discharge packet & everything the day before. Since I am not on the 10th floor with the their leukemia patients everything has been a little behind.

The nurse yesterday started to change my PICC dressing & I had to walk her through how to do it. She did not have the right kit & was just going to secure it with steri stips & no stat lock. I sent her up to the 10th floor to go get a Stat Lock while I held gauze in place over the insertion site for 15 minutes. If I don't have a Stat Lock in place to secure the lone down it will pull right out of my arm & that would be very bad. Needless to say I was sitting there thinking I hope I do not get a staph infection from this, since the site was fully exposed for so long. When she came back with the stuff she said they know you up on 10 so I did not have a problem. She was just going to put the stat lock on & not clean it again so I had to make her clean it again. At this point I was ready to tell her to give me the kit & I would do it myself. Unfortunately I am not ambidextrous so realistically I know I would need some help, we finally got it done. I took a shower afterwards & my skin is getting so sensitive to the tape, when I took the wrap off some skin came off with the tape. It hurt like hell & has been burning every time I touch it, I am surprised my skin has held up this long tough so I should not complain.

At 8:30am they hung my final dose of HIDAC for this cycle of my chemotherapy. At this rate paperwork pending of course I should realistically get released around noonish. Marc is at Brandon's first wrestling meet in Circleville so Kim is going to come get me once I am cleared. She had to go into work today so that worked out pretty well, so Marc would not have to leave Bubby's tournament. I think Marc loves watching Bubby wrestle just about as much as he loves wrestling.

I am so glad they got the heat issues fixed in my room last night. I turned the dial down to 68 to help me deal with the sweats & for the most part it worked. I can always throw on another blanket to get warm but when it is hot, all you can do is wait it out. So it was a nice change having a few cold chills for once this week instead of the hot flashes, I can't believe I am saying that but after this week as Misty says, "It is what it is". Last night except for the 4 Nurse & PCA mandated wake up calls for my vitals, drawing my labs & completing neruo assessments I slept hard last night. On a side note I am sure you you can tell from the pictures, but I am putting weight on like crazy, this should be the least of my worries I know. This morning they had me at 188 pounds. I was 173 when I came in on Monday so what I put on is this week is mostly water weight but I am going to have a heck of a time trying to get back into my regular clothes. I have been so inactive for the past 3 months I started noticed before I came in for this cycle everything that was loose is starting to get pretty tight. In time I will be able to resume some physical activity but for now I just have to take it easy.

So the for plan tonight is as long as I don't bottom out on energy Marc will go with me to my squadrons Christmas party for an hour or two. he has never been to one so I am anxious for him to meet my military family not to mention I am really looking forward to seeing everyone as well, I do miss my unit very much. Zack heard us talking about it last night & said he wants to go, SMSgt Fowle's has 4 kids & a couple of them are always there to babysit, so we may take him with us I am sure he would have fun to. Speaking of my unit I did call the AMDS & Doc Ellis is supposed to be reviewing my packet this weekend, I hope to hear something positive out of it, I do not know how long it is going to take to get my profile reduced so I can at least participate in light administrative duties, but I am hoping it is not to long. At the rate I am going I will be back to part time employment at ODH by February if all follows the time line my Dr. has projected for me. We shall see...

4 comments:

Aunt Lynn said...

Hi Sandi,
I'm glad you have enough sense & background to make the nurse do what she needed to do & do it right. I'm glad Zack got to see his Mommy also. I'm also praying you get released when you're supposed to, I know how frustrating that can be....waiting!! Please take all precautions when you go to the Christmas party tonight & don't wear yourself out. There are plenty of nasty litle bugs floating around this time of year & you don't need 1 of them. Anyway have fun!! Take care, I love you!!
Aunt Lynn

Ronni Gordon said...

Hi Sandi,

I know what you mean about getting the temperature right in hospitals. It doesn't seem like it should be that hard. I remember it either heated me or cooled me too much. I had night sweats too and I'd wake up drenched. I was so relieved when I slept all night without sweating. I kept the temp really cold at night, but I'm not sure how much influence it had on whether I sweated or not. I think it was just something my body was doing.
Sending you good luck with everything!

Unknown said...

hi sweetheart,i am glad you are knowledgeable enough to catch all that nurses mistakes and slip ups.a person that did not know what you do could really be in trouble.zach sure looked happy to see you and i bet he did give the nurses a run for their money asking questions.lol i hope by now you are dismissed and on your way home.i hope you and marcus will be able to go tonight and have a wonderful time. remember to take care of yourself ,pace yourself and stay away from bugs.everyone will understand if you get tired . they all love you, too and want only what is best for you.i love you enjoy your day."this is the day the lord hath made i will rejoice and be glad in it".love, aunt bonnie. p.s. i loved the message you sent steve it sure makes you think.i think i need more golf ball time!

Unknown said...

I will be praying for you. I noticed you were on the Shwachman-Diamond Syndrome blog.... and decided to check out your blog. I have two boys with Shwachman-Diamond Syndrome (bone marrow failure/pre-leukemic) so I can relate to many of the things you are going through. We spent the 2 days before Thanksgiving in the hospital with one of my boys...and then several days later landed there with the other.......far from home and not fun having to tell the docs what to do! I read your post here and could so relate! sigh. You can *meet* my family on our family website: www.shwachman.50megs.com I will continue to check in on you and lift you up in prayer.

Sentimental Journey

2010 Family Pics

Moments in Time

Quotes

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Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body but, rather, to skid in sideways, chocolate in one hand, martini in the other, body thoroughly used up, totally worn out and screaming, "WOoHOo! What a ride!!"
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Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable.
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Take risks: if you win, you will be happy; if you lose, you will be wiser.
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If you are never scared or embarrassed or hurt, it means you never take any chances.
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Ask yourself: "What have I missed out on simply because I was too afraid of what others would think?"
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Be kinder than necessary, for everyone you meet is fighting some kind of battle.
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I'd rather have 30 seconds of wonderful than a lifetime of nothing special.
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And in the end, it's not the years in your life that count; it's the life in your years.
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They call me Rooster

They call me Rooster
& Leukemia did not snuff this one!