Mommy & Dylan at ORMC after Oba's surgery!Hello All!!!
So, sorry that I have not posted in a while... Things have been real crazy lately! Between my chemo cocktails and every day life I have been so busy. This new round of weekly chemo of the herceptin and taxol 
has made me really tired I think more tired than the other ones, probably due to the fact that I am unable to sleep for the first 3 nights following (last night I did not go to sleep til' 4:45 this a.m. took a 20 minute nap today with Sarah's help (God bless her) and well it is now 1:11 and I am still up , still getting the body aches, stomach problems and the tinglys of the hands (not that bad) and the legs and feet (from just above the knee down to the toes) almost like someone next to is on a vibrating pad and I can just barely feel this shaky tingly feeling... Weird, it is Nueropothy and is not uncommon... What it is - is the meds are affecting my nerves I am taking vitamin b6 and if that does not work or if it does not work I will be prescribed an rx for it - it could have a long term effect on the nerves and this is not what they want if that does not help it then the chemo will be cut down or changed to something else however then I will not be getting what is best for me now... I told them that I can take the tinglys but the oncologist said no it is not a good thing due to the nerves being damaged... So, I am praying that it will stop... On a good note my hair seems to be growing back! I was told however that it will be falling out again but I have faith and a feeling that it will not! I am really enjoying my new look except for the weight gain (still-damn steroids) but with the steroids it helps the nauseasness. My grandmother recently had hip replacement surgery on Saturday and is currently in a rehabilitation center ( I say it is a nice word for a nursing home! ) I hate it, we hate it and she hates it... It has been crazy around here... I feel as if she is and has not been treated right... She fell 2 1/2 weeks ago at home getting out of bed and refused to go to the hospital and/or doctor - she walked on it with a cane at times and the other times with a walker... Then she just started going down hill and would not eat for a coulple of days prior to being admitted last friday... She is a tough ole' bird! She kept saying "I'm ok-and each day she was like "I feel better today" and would get up and move around! Well, she shattered the ball of her hip completely! So, on friday they told us that she would be getting surgery on monday come the next day (saturday) they called and said surgery would be in one hour - we rushed to the hospital (got there 40 minutes later) and she was already in the surgery room... When she came out of surgery she was confused and was fighting the nurses and had to be restrained... They kept her restrained til' Sunday night! The nurse we initially got was horrible too! Could not get the needle in her arm was very unorganized, had to wait forever for things, even had Emily hold one of the needles after getting blood from Oba... Crazy!!!! Big ole mess... (see pic)
has made me really tired I think more tired than the other ones, probably due to the fact that I am unable to sleep for the first 3 nights following (last night I did not go to sleep til' 4:45 this a.m. took a 20 minute nap today with Sarah's help (God bless her) and well it is now 1:11 and I am still up , still getting the body aches, stomach problems and the tinglys of the hands (not that bad) and the legs and feet (from just above the knee down to the toes) almost like someone next to is on a vibrating pad and I can just barely feel this shaky tingly feeling... Weird, it is Nueropothy and is not uncommon... What it is - is the meds are affecting my nerves I am taking vitamin b6 and if that does not work or if it does not work I will be prescribed an rx for it - it could have a long term effect on the nerves and this is not what they want if that does not help it then the chemo will be cut down or changed to something else however then I will not be getting what is best for me now... I told them that I can take the tinglys but the oncologist said no it is not a good thing due to the nerves being damaged... So, I am praying that it will stop... On a good note my hair seems to be growing back! I was told however that it will be falling out again but I have faith and a feeling that it will not! I am really enjoying my new look except for the weight gain (still-damn steroids) but with the steroids it helps the nauseasness. My grandmother recently had hip replacement surgery on Saturday and is currently in a rehabilitation center ( I say it is a nice word for a nursing home! ) I hate it, we hate it and she hates it... It has been crazy around here... I feel as if she is and has not been treated right... She fell 2 1/2 weeks ago at home getting out of bed and refused to go to the hospital and/or doctor - she walked on it with a cane at times and the other times with a walker... Then she just started going down hill and would not eat for a coulple of days prior to being admitted last friday... She is a tough ole' bird! She kept saying "I'm ok-and each day she was like "I feel better today" and would get up and move around! Well, she shattered the ball of her hip completely! So, on friday they told us that she would be getting surgery on monday come the next day (saturday) they called and said surgery would be in one hour - we rushed to the hospital (got there 40 minutes later) and she was already in the surgery room... When she came out of surgery she was confused and was fighting the nurses and had to be restrained... They kept her restrained til' Sunday night! The nurse we initially got was horrible too! Could not get the needle in her arm was very unorganized, had to wait forever for things, even had Emily hold one of the needles after getting blood from Oba... Crazy!!!! Big ole mess... (see pic).JPG)
UNBELIEVABLE & RIDICULOUS!She did not realize that she had surgery! She had no clue what had happened thought she was going for another xray!!! She has a hard time hearing, even though she has been in the US for like 37 years as she gets older she seems to not be able to understand as much could be due to her hearing problem though... Anyway, it took her til' Monday to start coming out of the Anesthesia and today seems like she is much better... She only weighs 75lbs! And is 83 years old on July 29th! Anyway, on Sunday they told us that she would be needing to go to a rehab/nursing home soon (no day given), by Monday @ 6:30 they told us that we needed to find a place for her... They gave us a list of NURSING HOMES even though they said that a rehab center would be fine also, the ones on the list and the one they wanted to send her to only received one star an the AHCA web site... We were stressing... It was crazy we called places and was however we wanted to send her to Lucerne a sister company of ORMC but it was not on the list and the case worker said just the ones on the list, we called the places and researched the places some had no night time visitors, no tv's must bring your own, some were really like a nursing home, so then we found what we thought would be a good one (the place she is in now), so we made arrangements for her to go there, then the therapist came in and well she was from Lucerne Rehab Center and said Yes she could go there, after I already spoke to the lady from East Orange Medical and Rehab Center on Chickasaw and Lake Underhill... We were told that she would get a private room, that they were putting in flat screen tv's and that she would benefit more there due to the fact that they did not rush the physical therapy like Lucerne does (3 days a week 2-3 hours -vs- 6 days a week 3-4 hours a day) so, we picked East Orange...Well before she left and was transported we were told that the room that they had for her was not available at that time and that she would be sharing a room just for the night, we reluctantly said ok and thought that it would not be that bad NOT we got there and well, for starters NO TV, NO PHONE, the nurse tugged hard on the sheets beneath her NOT reading the chart seeing that she just had hip replacement (Oba was put on the Dialysis side of the center) she thought she was there for dialysis... We were like "Whoa -she just had hip replacement surgery!!!) she apologized... (*%&U)#$)!!! I immediatly called the case worker who I had spoke to and left her a message! She called back but not to us she spoke with the nurse at the front desk and said that she promised that Oba would be put in a private room tomorrow (Wednesday)... She did get a private room! HAS NO TV... Finally they brought one in it is like a 9" tv no remote... She beeped them early this morning to let them know that she needed to use the bed pan they never showed - she messed the bed - she was very embarrassed and upset... We Are IRRATE! I am going there tomorrow and taking out all my frustrations!!! She will get her remote or a new tv! They will give her her meds when she wants them and not have her wait 2 hours (RIDICULOUS) I will be speaking with that MS. MARCIA and showing her a lil' chemo / steroid rage!!! This is ridiculous!!! Breathe Deanna... OK venting is good...
It always seems as if we are given one thing after another... Lets see there has been more, Mom had a flood in her house, they took forever replacing the tile just 3 weeks ago they finished! Movers never came back to empty the PODS, my mothers car engine shot she had to get a new car, ARGH but it is nice her first real new car it is a 2007 see pic...
But we conquered!SO anyway I am ready for whatever! But I wish things would slow down!!! Really I do but I am a fighter but getting really tired... I still do not quite understand why these things seem to happen... Are we just too nice to I need to be more of a bitch! I just always feel as if I am like that things could go more wrong however it does not seem to have worked as of yet. TO DO: try to be a bitch! LOL, give the lady at the rehab center a piece of my mind! PHEW I feel better already... You know it is terrible... We were told after her surgery that about 30% of senior hip replacement patients pass within the first year - we were like "wow-no way" now we understand why! It is due to our healthcare system and don't get me started on our school system!!! Anyway we refuse to let them do that to her... We will camp out there if we have too... This is ridiculous... Oh and get this the case worker at the center spoke with my mother and Emily today and was like "Ms. Lewis (OBA) has dimensia and we need some papers signed and a power of attorney" NOT for one thing she is sooo much better today so much! She is hard of hearing, Japanese and hurts... She was well aware of what was/is going on now... And the case worker/social service lady could barely be understood (very strong hispanic accent) Emily had a hard time understanding her and she speaks with people all the time in Miami with work anyway the lady said that Oba did not pass the test and that means she has dimensia!!! We refused to sign anything... They can kiss our butts!!! We will pay to have her transported somewhere else if this continues! This is ridiculous... Like I said before no wonder 30% of the seniors pass away... ARGH...
On a good note my lil' Miss Sarah is on the Conway AllStar Team 
as well as her team being undefeated and was the first team in Conway Lil' League history of being so (YOU GO GIRL)!!! YEY her first game is this Friday night in St. Cloud at 7:00 if anyone is interested in coming it is in of course St. Cloud on 17th street, coming from Narcoosee road turn right on 192 turn, turn left by the KFC on one corner and the McDonalds on the other (Budinger Street), take a right at the 4 way stop on 17th street and it is up about 1 block on the left... Coming from the turnpike well left on 192, right on Budinger and right on 17th street... She attended a two day intensive softball camp at UCF 
to prepare for it and boy was it intensive see pic! She was exhausted the pic of her is of I think the most she has ever sweated she did the camp from 1-4 and then went to regular practice m-f 5-7!!! She is a tough one! Get's it from Oba and her mommy! She will be turning 13 on July 5th! I am so proud of her and she is a fabulous daughter and with Michael bless him for working like 60 hours a week, and Taylor and Kyle at there momma's, Mom staying with Oba---without her help with Dylan and helping around the house I do not know what I would do... Thank you Sarah!!!Something else wonderful for the month of June!!! I had one wonderful night and 2 days as part of my mothers day / birthday present on June 6th with my 3 blessings. Emily took Sarah, Dylan and I to stay in Kissimmee at the Clarion Misty O' Waterpark Resort! It was wonderful and I had a blast... Even getting lost on the way there was kind of fun (sorry Em LOL) I did not want to leave!!! I highly recommend it there!!! I want to go back real soon and would love to make it my home away from home!!! It is great!!! Here is a pic of my blessings in the room!!! THANK YOU EMILY you are a wonderful daughter you make me feel relaxed and calm me when I need to be, helping me, Nana, Papa, Oba, lending me your ear and just for being you!
I returned to the hotel on the 18th (week nights are cheaper) for one night and took Sarah, Dylan and our best girl Shelley... The kids had a blast... And so did I! Both times have been the best times I have had in like forever... Here are some pics that I took!!! I want to live there!!! LOL... No really I really enjoy myself and can relax there... It is a wonderful place!
Well I better try to get some sleep!!! Love you all and thank you for letting me vent/blog/post!!! I will post again soon... As not to overload you all like this time...
I love and miss all of you! And please all of you pray for Pat Marazzo at work she is having some medical issues and my thoughts and prayers are with her!!! (I am here for you Pat call me if you need me!!!)
XOXOXOOXOXOXO,
Deanna
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P.S. Once again thank you to my NTO family for the wonderful camera without you all the beautiful pics of my memories would not have been captured above!!! I love you all!!!
I returned to the hotel on the 18th (week nights are cheaper) for one night and took Sarah, Dylan and our best girl Shelley... The kids had a blast... And so did I! Both times have been the best times I have had in like forever... Here are some pics that I took!!! I want to live there!!! LOL... No really I really enjoy myself and can relax there... It is a wonderful place!
Dylan chillin' by pool side!
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Sarah & Shelley bein' silly & havin' fun!
Relaxin' in the room!
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Sarah & Shelley bein' silly & havin' fun!
Relaxin' in the room!Well I better try to get some sleep!!! Love you all and thank you for letting me vent/blog/post!!! I will post again soon... As not to overload you all like this time...
I love and miss all of you! And please all of you pray for Pat Marazzo at work she is having some medical issues and my thoughts and prayers are with her!!! (I am here for you Pat call me if you need me!!!)
XOXOXOOXOXOXO,
Deanna
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P.S. Once again thank you to my NTO family for the wonderful camera without you all the beautiful pics of my memories would not have been captured above!!! I love you all!!!
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