They tried to make me go to rehab...

After two centers rejecting me, I am now on my way to the Barbeton rehabilitation center. The did over the paperwork and assessment one day and then I was told next day I am out of here. So I really should go get my nursing assistant friends so I can carefully raid my room and make sure I don't forget anything...hey every single thing in here has been paid for (or i will be getting billed for) so it shouldn't matter. Don't worry I am leaving their bedpan!

I haven't visited this rehab location so just hoping that its not just a souped up nursing home, where my conversations will be about hip replacements, backed up colons and great grand kids! Hey but you never know, might find a husband...heyyyyyyyyyyyyyy. LOL

Bottoms UP

This is a neighborhood advisory to everyone that is reading this blog. If you had not had a bowel movement in more than 2 days please take notice of this and work on alleviating this problem immediately. Please do not wait for it to "pass". If not, then look forward to serious stomach pain and the worse case of "bubble guts" ever!!

Just a word of advice from your friendly cancer patient friend!!

Its Pouring!!

So everyone knows I have been saying if its not one thing its another. Well of course this post is not an exception of that! I've been out of touch for a while because I was...still am, in the hospital. It seems that I couldn't just leave cancer alone, I had to through in some diabetes in there to mix up the game a little! Now I don't really recollect how I ended up in the hospital, but legend has it that my sugar was at EXTREMELY high levels hence at the house I was in an unconscious state. So to the ER and and then had to monitor me in ICU for a while to get that all under control (now this is all heresy because I don't remember any of it!!)

So now I am here in a private room in the palliative floor (pain control floor) getting all better. So of course I came in with like two infections (one was an ear infectioin and who knows what the other one was) but those are now cleaned up so next steps.

And is there anyone else that has had to be exposed to Heprin shots every day...its a blood thinner shot that feels as if they have radiated poison throughout your body. And its like the nurses come in "am sorry Ms. Douglas...blahblah balh Ms. Douglas" unless you are taking these burning shots I don't want to hear I'm sorry...and what are you sorry for? Sorry that you don't have to take them? What I'm saying is there are some very caring and competent nurses out there for sure but my golly can they be ANNOYING. But don't worry, I don't cuss them when they wake me up every 2 hours!

Hit the Ground

Well as I always say that if it isn't' one thing its another and again that has not changed. I have recently come to find out another great side effect of the steroids that I am on: extensive lower body weakness!! So basically I would say I have lost about 50% of my strength of my lower body strength..all my leg strength. I physically have to move my legs to get them started now and make sure I grease them up to keep them going. I have also had the wonderful experience of having my knees just give away and end up on the floor. The worse part is that once I am on the ground I can't get back up at all...its as if the legs totally turn to lead at that point and don't want to move. So I need assistance to get all the way back up in order to walk again.

So Dexamethasone strikes again with its effects. I am just hoping at some point I can start to ween off the drugs and gain back some strength.

What needs to happen is CANCER OUT THE BRAIN!! So lets keep praying and focusing on God's will to see what happens. He has and will always be in control and his will be done! Maybe this Telador will be the drug that makes it happen.

In the interim lets see what physical therapy and Wii fitness can do to help regain strength!! Go Yoga and Strength Training!! You actually get a good work out from it!

Lets go Temodar Lets go!

I will be starting the new drug this week. Time for some Temodar! So as I stated before this is a brain tumor chemo that I'm trying to see if it can improve the brain situation. But we know its all in God's hands and what best hands can we be in!!! Thanks for all the prayers from everyone as well.

Even though I don't want to, I will add a picture just so you all can see the ever expanding cheek bones. I didn't' realize that they had gotten so big. I guess you don't realize unless you take a picture and really have a look. Its one thing when you are sick and you know how you feel inside, but when its right there in front your face it takes on a whole new meaning. I try not to focus on the outside appearance because what are we but dust to the earth right? But human nature takes over and its like man what can I do to make it better. I have to stay on the steroids so I have to deal with these side effects the best I know how, but doesn't make it any easier. So if anyone has the bomb makeup suggestions to reduce my double chin and cheeks send it my way!! And also for the gutt as well because the steriods increase appetite and apparently fat as well!! So I will try on my part to try and stay active but again it is difficult when your entire body has just metamorpized into something Shrek like! I am now princess Fiona.



By the way...any one need a 3 month supply of Tykerb and Xeloda chemo drugs contact me for clearance sale! LOL I have like 2 months of this stuff and it will just go to waste. Such a shame and waste of product and money!!

NO Clinical Trial For me!

Always exciting news from Akron Oh! So turns out that I coudn't do the clinical trial after all. Apparently my platelets are way to low and I would have to get transfusions like each time to bring them up just so they are up to standards for me to even take the treatment. So given that and that this is a powerful drug we decided that we will not be moving forward with that. So whats next you might ask? Who knows! I will continue to get Herceptin and Zomeda so that should help keep the other organs stable and Zomeda is the bone strengthner.

There is this one brain tumor drug called Temodar that we plan to try...pending on insurance because it is very expensive. The kicker about this drug is that it is a brain cancer drug, it is not a drug for breast cancer that has gone in the brain. So its different than the drugs before hence insurance will look at it a little closer. But it has shown to cross the blood/brain barrier so there is hope that it might do something. And also it is not as toxic as the clinical trial drug so that gives some comfort. The big side effect for this one is constipation...so the oppsoite effect of what the clinical trial side effects would have been. It is 5 pills...take 1 each day for 5 days then like 3 weeks off...so dosage is good too. So we will see if I get on this chemo drug. But for now its status quo with just a daily dose of prayers to the Lord as the medicine of the day!

Last Options: Clinical Trials

As you guys know I recently had my last set of scans and it showed regression in the brain and spinal cord area. Basically mean that I have gotten worse in the brain and this latest chemo option that I was on: Tykerb/Xeloda did not work to cross the Blood/Brain barrier and reduce the number of tumors and other brain metastasis that I have going on in there. So its been about 3 weeks since I have been on no treatment at all. At this point there is no chemo treatments that are working to cover the barrier so now its back to the fundamentals: God's treatment! I mean it's been his work all this time, but this is truly when we will see what he has in store.

I am also utilizing one more option to try: clinical trials. I start phase 2 of a clinical trial on July 2nd here at the Cleveland Clinic. It is a new drug I believe that they are hoping crosses this blood/brain barrier and can provide proof of PROGRESSION for the participants...and I sure hope I can be one of those participants that sees some improvement! The drug is called patupilone and it is administered as a single intravenous infusion over 20 minutes every 3 weeks. So for those that have or are getting IV chemo you know the deal...get in you infusion room with the TV and magazines and wifi access (praise GOD for the Internet access!!) and you sit and wait for pharmacy to bring up your meds...they call the secondary nurse for a chemo check, they make you say your name and birthday for the 50th time and hook up that drug in my case to your handy dandy power port in your chest and off you go. I think this drug might be a tad more toxic than the last IV chemo drugs I had but we will see. I guess once again gotta take the side effects with what real effects that you want to achieve! And at this point, this is my only option here! So lets see what we can get out of it! And again keep in mind the big picture that no matter how this ends up it was all God's plan bottom line.

Even more important...please pray for me as they are making me take tests again...that means me verses the MRI machine...again...for HOURS!!! Roarrrrrrrrrrrr

And I have written about this clinical trial now for like 3 postings and keep on forgetting that I wrote about it....Brain please MAN UP and stop having me repeat myself!!! I promise to change the subject next time!!!