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.





Monday, September 29, 2008

September 28, 2008

Today was the fantastic, it made my week! The only thing that would have made it better was if the kids could have come up.

I woke up a little more tired than usual and I had a slow start. It seemed to take forever to eat breakfast & I was still a little gassy from the night before. Randy & Becky Conley my neighbors stopped by to see me real quick before they headed back to London from their weekend stay for the game yesterday. They brought me a snakeskin hair cover/bandanna, a card & real flowers but the desk would not let them bring the flowers up so I told them to take them home to Misty for me. No real flowers are allowed in the James Hospital only fake arrangements due to the immune compromised patients. It was good to see them but I had not had my shower yet & I had just got wrapped up & needed a platelet infusion so they went ahead & left.

My Platelets dropped down to 6 again so I got my 13th Platelet infusion which brought me up to 34. If you add up all my blood infusions I am up to 21 total now, so what everyone donated to date that has sent me their Doner ID numbers I have used them all up & I owe for 5 still. Please donate if you can & send me the Doner ID numbers if you are able to. This truly is the gift of life. A person is able to donate every 8 weeks & for those of you who do not know the Red Cross has a card that says thinking of you, that you can fill out & send to me with that Doner ID number when you donate. These cards are what I am using to track & turn into my insurance company. The blood supplies are low so please, please donate if you can.

Dad & Elaine got here around 1:30, they had just finished my infusion. I asked Elaine to have dad stop on the way here to get me & Marcus Kewpee burgers from Lima tehy are the best. Elaine also brought me Clear skin from Avon & many other lotions & cleansers to help decrease the acne. She also left a scrub top with me that she cut the right side out & replaced with velcro. We figured she only has to cut the sleeve all the way to the collar on the other one so she is going to take it home & fix it. She also left me a tub of peppermints to help with the nausea & Hershey kisses :)

As you can see from the slide show above in addition to Dad & Elaine, Missing Link came to cheer me up. You can't tell because I had to keep my mask on but I was smiling from ear to ear the whole time. Oatmeal, Pixi & JD came from Circleville, Pott's the National President & Carl who is a retired member from Columbusas well. Then from London there was Grace, Alan, Wojo, Cooter, Puppies, Berries, Thumper & the Gobbler.

Against my doctors orders I went for a very short ride around the Ross Heart Hospital courtyard with Oatmeal. There were no bumps it was so smooth but than it was not a Harley either. Pott's told me I would have to sanitize myself when I get back to my room LOL. It felt very healing to have my knees in the breeze. I would have loved to went for longer but I think Grace was going to have a heart attack because she was up here with me when the Doc's said no so I did not push it because I know Oatmeal would have took me wherever I wanted to go. He beat Pancreatic Cancer so I have learned a lot from him with what to expect with this. We joked I would have to get a bio-hazard tattoo after this, like his from the Chemo.

Carl got my tear ducts rolling when he gave me his lucky silver dollar that he carried with him in Vietnam, he told me it always brought him good luck & maybe it would do the same for me. He also referenced Midnight Rider I looked up the lyrics & I agree, I got 1 more silver dollar but I am not gonna let them catch me ...

They all went over & got cookies & sweets. I got a big peanut butter cookie that was delicious but dried my mouth something awful so Berries gave me her ice. It got really warm & the sun felt great but it was wearing me out fast so I told them to go enjoy the rest of the day & ride, but I wanted them to make one last sweep of the hospital courtyard with their bikes first & they all had to crack their pipes. They did & it was the coolest thing. I wheeled over to the side by the road & had my hand by my ear like I could not hear them to get them to do it louder. I hated to see them all leave, it was tough but I will be out of here soon.

Dad & Elaine took me back to my room & I was so tired I could not stop yawning. I had 3 bites of the Kewpee burger & could not eat anymore. It was after 5 so Dad & Elaine headed home so I could sleep. I was glad they both came up together, I did not have a picture of them together so I made sure to get a few. They are in the slide show above.

I put the kids homecoming pictures below, I cut Samantha & her friends head off on one somehow I need to fix it I could not believe how beautiful she looked, I mean she has always been cute but she looked absolutely stunning, all the girls did for that matter. I have not been able to meet Brooke yet but hopefully soon. Marcus tells me she is a really nice girl so as long as Brandon is Happy I am Happy.

After I was alone the wonderful day turned into a very rough night. The Gas came back with a vengeance I got an emergency order for GAS-X because my pains were 10 out of 10 some were worse than labor pains it seemed, it was really bad. Then to top that I had blood in my stool so I do not know what is going on yet they are running tests. My mucosa membranes are sloughing away so it is possible that is where the blood is from, hopefully it is nothing major. I will post what we find out. I was given some Oxycoden to decrease the pain which worked & I was able to get some sleep.

I can't stop smiling even through the pain so I want to say thank you again to everyone that came up, you made me so happy & no pain can take that away.

7 comments:

Aunt Lynn said...

Morning Sandi,
So glad you had a great visit with everyone! I can't believe you got so many good pictures of everyone. You might want to put those pics of your parents in a safe somewhere, they may be the only ones in exsistance of them in the same shot....lmao!!! Hope you have had some relife from the painfull gas, I know how that is too. Is all that coming from the chemo or something else (food)? Well, I hope & pray for you to have another wonderful day and a much better night, Love always!
Aunt Lynn

Anonymous said...

Hi babe, I got the kids off to school so this is MY time to send you your daily update !!! I will say one thing, if that crowd could not cheer you up no one could. They are really great people with such good hearts...I'm very happy that you were happy...I absolutely loved your "outfit" for the ride kiddo, you looked like a reject from a scary movie !!! ha ha. Sorry your night was not good but I guess they come and go and you will more of them than not. Just look on the sunny side, you will not have to endure this forever. I'm sure that come next spring me and the kids will hardly see you and Marcus, you will both be " in the wind" like you were this summer. Well, we had a small problem this morning...Brandon was ready to blow a gasket...I don't think Paige left the Spike out long enough last night....anyway she took him to Brandon's room where the puppy decided to do his "business" in Brandons bed....during the night Brandon rolled in it and did not come up smelling like a rose. So I have bed clothes to wash this morning. The kids looked darling before the dance. i was very proud of the way Marcus handled the entire situation with the idiot that runs that school. Like I told Brandon there will always be obstacles in your way in some way shape or form , so learn to deal with them early in life. No drama here this morning except for the puppy issue will try and blog you again later today, I'm sure something will come along....ha Take care and do what the doctors tell you....DO NOT FIND A STRAY MOTORCYCLE IN THE PARKING LOT AND DECIDED TO GO FOR A RIDE !!!!!! Much Love, Misty

Pixie said...

Rooster,
We loved the visit yesterday! I'm sorry u had a rough night. U and Robbie looked so good on the bike. Even though u had ur Aflac face on I could see that big beautiful smile of urs. I think that made Robbies day as much as urs. That is all he talked about. The folks around the court yard really looked at us pretty strange when we made our "see ya later luv ya circle". It was awesome! If ya need something specific just call or e mail me. The kids pictures looked great! Well, except for the headless pair of legs. LOL! Hope u have a good day today. Robbie said to let him know when its time to ride again!
Luv U Sis! Pixie & Oatmeal

Anonymous said...

Ok, I just got finished with your enty, I know how you and Marcus love the 'masks" that you got from Mexico, I have them showcasked in the enty below the grnadfather clock, I don't know if you will like it or not, but if you don't we can move them. I need something to do during the day besides laundry, cleaning, cooking and taking the puppy out. I love it, but you may not !!!! If you don't, it's ok.....Becky was here this morning and brought me a "purple heart" candle....I swear that girl is off the wall....I hope you are doing ok today....let me know when you want your mashed potatoes. I still have not heard from Eric, it concerns me a lot but it is what it is. The kids will be home in a little bit so I must go and get the reat of the kitchen cleaned up....I think I may take a little nap....hopefully you do to!!!! Much love, Misty

Grace/Betsey said...

Hi Sandi.....
I just got off the phone with you but wanted to drop you note about the blog. I love the pics of the kids...they were all so beautiful!!
The slide show of the MLMC visit is awesome. You're right, I was about to have a hissy when you were on the bike with Oatmeal...but it made you so happy, that makes me happy, and besides, I decided that God was happy to so nothing bad will happen as a result of you rebellious ride!!!
Well, I hope I'm not sick for long so I can come up and see you...
Talk to ya later,
Love ya
B

Unknown said...

hi sweetie, it was so good to talk to you today.i know the days are long,but you are just about thru the first month. think of it as one down two to go .you sound great tired ,but great.i love all the pictures.you looked happy on the bike. i did not think that little ride was dr. ordered.lol.thank you for keeping all of us informed,sometimes even when you do not feel like doing it.it makes us feel better and closer to you.love aunt bonnie

ben&tam said...

SANDI,
hope your evening is well.. i have showed everyone that came here today your blog. and everyone said you look great.. they love the pix of us up there visiting you and they love the pix of the kids.. (how could they now.. they are our kids..lol hehehe and georgous at that!!!!!) craigs dad came to pick him up this evening and he said that when the kids showed up at the dance craig got out the passenger side and opened katrinas door with hand out he helped her out of the car and the huge!! mob of kids that were out there just went nuts .. screaming and shouting (WOW !! LOOK AND KATRINA AND CRAIG!!!) he said he was so proud that his heart could have exploded.. he said it was like a movie premier when the stars get out of the cars and the crowd goes wild.. (and i missed it)
but it did however make me very proud....

well gal gonna go for now..
love ya
tam

Sentimental Journey

2010 Family Pics

Moments in Time

Quotes

~~~~~~~
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!!"
~~~~~~~
Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable.
~~~~~~~
Take risks: if you win, you will be happy; if you lose, you will be wiser.
~~~~~~~
If you are never scared or embarrassed or hurt, it means you never take any chances.
~~~~~~~
Ask yourself: "What have I missed out on simply because I was too afraid of what others would think?"
~ ~ ~ ~ ~ ~ ~
Be kinder than necessary, for everyone you meet is fighting some kind of battle.
~ ~ ~ ~ ~ ~ ~
I'd rather have 30 seconds of wonderful than a lifetime of nothing special.
~ ~ ~ ~ ~ ~ ~
And in the end, it's not the years in your life that count; it's the life in your years.
~ ~ ~ ~ ~ ~ ~

They call me Rooster

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