Update

On behalf of Gail’s family and friends, we would like to thank you for your continued support of Gail through her battle with advanced stage 4 breast cancer for over a year. Gail passed away on Monday, October 12, 2009 in Akron, OH. Her funeral service will be held on Saturday, October 31st in St. Thomas, Virgin Islands at Bethel Baptist Church. The viewing will be at 9am and the service begins at 10am.

The family and friends will make every effort to include your tributes in the program.

God Bless,

Gail's Family & Friends

Dell is the Devil...in case you forgot

I have said this before but I wanted to reiterate that Dell is the devil!! Why do I have about 4 dells with maybe 2 are operable?? So the first dell's LCD display decided to stop working...of course one month after the warranty expired...coincidence? I don't think so! Its a plot!! And the cost to repair that is the cost for another computer!! So far the desktop seems to be maintaining. The next laptop decides to shut down whenever it feels the need too. Doesn't matter if you are in the middle of work or sending an email or doing anything of importance because when that computer feels like shutting down it will. And then you put it back on as if nothing happened. I mean do you know how paranoid you get in pressing that save button? And then the LCD display just decides to loose some screws and refuse to close. Dell why must you be like this? Where is your quality? Am I going to have to start my savings account now and hold out for...dare I say it...a MAC? I am so tired of Dells acting up. Roarrrrrrrrrr!!!!

So I am keeping hope alive that this current laptop stays loyal and working because I can't get high blood pressure on top of everything else I have due to the aggravation!!! Let me press save right now!

To those that saved my life

This is for all the people in my life that have been there for me throughout what I have been going through. I was just thinking back to last year when I was diagnosed with all this and back to my friend Darlene having to get me off the bathroom floor in my old condo and get me to the hospital. Because of my hypercalcimia (I think that is what's its called..when your calcium is to high...my bones where stealing it from my body) that I was experiencing, had I not gotten to the hospital at that time I could have died. Of course no one realized thats what I had at the time but that was the initial prognosis. Then it was all about removing the lump then all the pieces started to fall into place but by that point the big C already decided that it was going to take residence in the liver and bones. To all my DE residents please double check your doctor's prognosis as I had more than one tell me that my back pain was due to back strain and "over doing it" at the gym. Yeah I don't think so!!! But again here is an example of God's perfect timing in that I was at the right place at the right time and that was the time I was suppose to get the right diagnosis finally!

Similarly my recent hospital rendezvous started because my aunt was so aware of what was going on with me. When she noticed that I was "sleeping" a bit to long and then unresponsive when she tried to wake me up she knew something wasn't right. Thanks to her efforts she got my dear loyal brother and they got me to the hospital again just in time because it seems that I was in a diabetic coma with an 800 blood sugar level!!! And I don't remember anything about this incident other than waking up in the hospital. This one took me out for a month and left me with a nice case of diabetes to add to my list of illnesses. But once again an example of Gods timing...had it been any longer I probably wouldn't be here writing this blog! So thank you thank you for all of you that helped save my life: literally and through prayer and support!!

I'm still here for some reason :) So here is a link to a song that says just that. Everyone knows I'm critical about songs and stuff but out of this song I just want to emphasize that its by the Grace of God that I am still here.

Work those hips

I get physical therapy about 3x a week and they sent me over the hardest PT person they have I was told. Which is great for me because that means the sooner I can get back to regular walking minus the walker! So lets see what the worse exercise is, could it be the lying down leg lifts with leg weights? Maybe it is the calf lifts. No no I think the worse are the squats!! The down and up with the legs....ughhhh. It hurts me right now thinking about it. But the hip flexors are weak and they need to get stronger so this is the way to do it. And of course to round it all up is to get that daily walk:it pulls all the exercises together. For all of you all gym heads you know about all these exercises and more and know that I so miss doing all this stuff at the actually gym and doing real workouts but all in time. Soon enough I will be back in spinning class sweating like I'm in the shower (yeah that's gross...but its intense!)


SQUATS done right:

Back in the crib

Well its great to be back home. Now its time to get it together and make it work from the house. That means at home Physical Therapy and new treatment. So far so good and the weakness is getting stronger. We are looking forward to walking without a walker sooner rather than later...at least the PT guys think so. So its time to strap on those leg weights and get to some leg lifts (something I couldn't do just a few weeks ago!) Hopefully by the time I get my legs back I have this diabetes under control as well and figure out how to manage that blood sugar (bye bye Bryers Strawberry cheesecake ice cream!) But its all good and I am still soo sooo BLESSED! Every day I can get up and take a breath is another day where I can serve the Lord and make some impact here.

Oh and as you can see I am bald again...I had the reverse Mohawk going before (because of radiation no hair in the middle of my head!) ...trust me it was very scary looking. So now back to a clean head. Maybe it will grow back at some point!! I miss the hair!!! It would help to cover the mega chipmunk cheeks...yes I am still talking about the cheeks!! And don't let me get started about the double chin and the big gutts (stomach). These stink steriods!!!!

Life behind the bedpan

With these recent hospitalizations there are alot of things that have come to my attention that must be normal in hospitals but can be really annoying. Here are some examples: You have to hear "Ms Douglas I am here to check your blood sugar" like 6 times a day or "I am here to check your vitals" I mean seriously, did my blood pressure really change from like the 2 hours that you just checked it? And why must nurses stare at you as you take your pills...to ensure i am not hiding that oxy to sell them later? And then they have the ones that give you the fake smiles...and the ones that don't smile at all! And why does it take so long sometimes for them to answer the call light...by the time they come to help you to the bathroom the deal is done!! At least the nurses are much nicer once you hit off a conversation with them. But also be ready to discuss stories about kids and grand kids because those are the main topics of conversation. And be ready to explain your life story and all the reasons why you would leave living in the islands and end up living in the cold!

the Man Up Clinic

Let me tell you folks this Therapy Center is not like the other place where I was. This should be called the "Man Up" hospital. Example: these people took my catheter out and said heifer you are going to muscle on over to that bedside commode...even though you can't walk!! And you need to wash up, here is your basin with some water and soap have at it...well could you help me with my back at least? So lets just say they are more hands off than the other hospital lets put it that way. But I guess that is the point of therapy. To make you strong and stand up on your own so if that is the case then they are definitely doing it.

But whatever they do, the goal is to get back some strength in these muscles so I can get around again so whatever I gotta do to make that happen that is what its going to take.

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!!!

Skin update--No Bubonic Plague!

Staphylococcus Aureus Impetigo. That is the skin bacteria that I have so no worries I wont infect you! So right now I hold the record of staying the least time in the hospital...I only had an overnight visit...yeah! So its good to know that it is NOT shingles and it is nothing really serious and after this 30 day dose of antibiotics and skin wash I should be as good as before. One of the biggest effects was the fatigue and lack of energy and it seems that it has gotten better day by day so that is a plus. Getting rid of these sores will be good too...time for clear skin again!

So lets do a synopsis:
-Bacterial infection of the skin...will be cleared up pretty soon!

-Latest scans/ tests...not good: lesions/tumors in central nervous system/spinal cord/cerebellum all show increase and getting worse. The tykerb/xeloda treatment was the latest option that we thought would cross the blood brain barrier to stop the growth in the brain but it has not worked so that treatment is done.

Right now I am not on any treatment but on the lookout for clinical trials and other options that may be floating around. Will keep you posted on a possible clinical trial that is out there that I might take.. I think I talked about it in a previous post.

One thing after another...after another...

You remember a few blog postings ago I discuss these these skin lesions that have come up on me lately and I am just not sure what they are or where they came from. So after talking to the doctor they elected to keep me in the "cooties" room at the hospital so there I sat from my hospital bed typing out this posting. So they kept me overnight in the hospital to try and figure out what is going on. So they continued to keep me at the Cleveland Clinic "cooties" room in the ER just waiting on results from some biopsies and cultures that they pulled so they can say whether its bacteria or something else. I think they have ruled out things like shingles and chicken pox and herpes syntrex because of how the lesions are sporadic and one of them oozed alot of stuff so one doctor was thinking staph bacteria? Not sure what it is I just hope they figure it out and fix it! They have already started giving me some antibiotics so they are also playing roulette trying to figure out what this is.

As I always say if it isn't one thing its another...I couldn't just get the news that chemo isn't working..I had to get like a full body fungal infection to just kick it into gear! Maybe one of these days I will just have ONE thing happen to me at a time.

When you back hits the wall...again!

Hey Everyone! So lets get straight to the dirt: the new chemo treatment plan: Tykerb and Xeloda is NOT working. The spot in my thoratic spine T9 has increased from 4mm to 7mm and other than one spot in the brain that has actually went down slightly, the rest have shown some progression. So right now we are just looking at it as one: cancer in the central nervous system because its in the spinal cord fluid and in that lining of the brain all around in the back there (ha great usage of grammar right there in that sentence) I have to read the new report and get it straight in my head so I can explain it better but this is how I understand it so far. As of yesterday I have been informed to stop the Tykerb and Xeloda so I am officially on NOTHING. So I have to see if they will put me back on good ole Herceptin or not. Now, lets celebrate the things we can...my liver, chest, lung the lower back (with all its collapsed discs and stuff) are all stable so no new changes there which is GREAT! Its just of course one of the more important organs that need to stop acting up: the BRAIN!

The stop of chemo is of course because its not working and also because I am now looking at this clinical trial that is in phase 2 of the trial period. Its for candidates where they have brain mets and radiation and other chemo was attempted but no good response. So I guess that is my next option! You have to have been off treatment for a few weeks so I guess this will give me a break from the big pills that I have come to get use to swallowing every morning! The trial is by IV infusion I think once every 3 weeks and the biggest SE is diarrhea so Imodium apparently will be my best friend! I have to read through the material and see if this will actually be a good fit but you know when you are down to limited options you have to see whats out there.

Test Scans and Shingles!

I had my 3rd session scans...you know the scans you have to take each time to ensure that your counts are high enough to continue the chemo. This last scan my platelets and potassium levels were low so I was "assigned" to take some of those wonderful potassium pills to try and build up my levels and then retest this week. I was still allowed to continue chemo so at least I didnt have to posptone any treatment. Normally I don't just not take my meds but just the thought of those pottasium pills was just to much so I just endulged in bananas and gataroade and that seemed to do the job. Got back my retest and my levels are back up to a level where they feel comfortable..so if they are good with it then I am too!

But something new I have noticed are these open sores that I have mostly on the right side of my body. I explained them to the doctor and she says that it may be shingles so I have to monitor them and make sure that they don't get any worse. Well so far they don't seem to be expanding but they sure can hurt...open sores will do that I guess! But really, is it just me or am I the only one that thought that Shingles was like an ancient disease that didn't even exist anymore!! Like scurvy or something. LOL Well I was wrong!

Next set of Scans to see progress: JUNE 16!! Lets pray for some GOOD NEWS!

The Birthday Celebration--Not so Great Parts

So I am not a journalist but I wanted to present an accurate portrayal of the birthday weekend so i had to throw in some of the parts that weren't that fun during the trip.

On Monday evening we got word that my Aunt's potassium was somewhat low and that we needed to get to the ER just to bring them back up to normal levels with a bag or two of that stuff in the IV. Now that doesn't sound like a big deal up front, but when they assign you a room you know its a wrap. So here we go with another hospital admittance right around when I am leaving. But God is good so we survived that and all is well in the world with auntie and those dumb fluid levels. What sucks is that she was in the hospital the whole time I was having fun in FL.

The other big thing was side effects. I am currently on my third cycle of this chemo and I had yet to really experience some of the effects...until the actual day of my birthday! Beginning around 5am that morning it was time for me to endure just some of the effects that I read about. And let me tell you, its not fun having "bubble guts" on a boat in the early morning! Or on a boat at all especially when you are preparing to go and jet ski!!! and then parasail!! But again I know I hate when people say this but it could have been worse.

Birthday Celebration- The great parts!

Hey Everyone! So its been a while since I posted and wanted to give you an update!! May 23rd marked my 30th birthday and also my first year post cancer diagnosis. And what a year it has been. Around this time last year I was already in the hospital and I believe I had already had a lumpectomy and they figured out that I was already in Stage IV cancer: metastatic breast cancer that had spread to the liver and bone.

Well this year I really turned it up a notch and decided to get as much friends/family that I could get to come out and enjoy the weekend with me. And boy did it work out! This memorial day weekend all in all about 14 of us headed out to Key West and just took it all in for the weekend. Thursday we drove down from Ft. Lauderdale to Key West and it wasn't a bad drive. Thanks to the steadfast drivers Alfino and Mike for getting us down there and getting us around while we were there. And shout outs to our personal navigation systems of Khalilah and Aesha and whoever was directing in the other car because they sure got us to each of our locations...or to parking when we needed it!

Friday we lived it up like some tourists and walked around the area checking out the city...and the sale at Nine West!! Saturday was the great beach excursion where we enjoyed snorkeling, jet skiing, kayaking, parasaling and overall just chilling on the boat and enjoying the heat and enjoying the company. I must say we were looking fabulous and we had tons of fun! Sunday we hit up Denny's like old college times ( and the long kitchen wait) and then head back to Ft. Lauderdale where that evening we head out to Blue Martini and enjoyed some appetizers, music, cake and friends we hadn't seen in forever...that I hadn't seen in forever! Speaking of cakes...did I mention that over the weekend I had THREE cakes! Thanks to my girls Harmony and Myrna...those cakes were the BOMB!

I must say this weekend was just another example of how God has been so good in my life that he gave me another year and brought out so much people to help me celebrate. Just to show that there are many out there that care. Sometimes that's all you need to know... that there are people that care!

I wonder whats in store for the next year of life!!

Hair everywhere...except where you want it!

The new pics shows that I found a cute hair do that I like and I've been wearing it and getting compliments so that's great. (I actually went out a few times to more than the dr.'s office so that's always great to get a break from the apartment!!) But of course underneath the hair is the baldness that still sticks out as an example that girl you have cancer...and your body is still fighting it. Its like you know you have the disease, but when you have such an obvious example right in front of you its hard to forget!

Ok so being bald...yes its a side effect of the chemo and the radiation that I have had. But why is it now that hair is growing EVERYPLACE else except my head!!! I never had hair to shave on my legs or just random bush growing in certain body parts...until now. I find this crazy and a little amusing. Of course my more hairy friends tell me get a razor and get over it. But still its like man, lets transfer some of this hair growth to the bald dome and get that started! But I think I did see a few strands the other day and someone mentioned that I have one patch of hair in the back...so its making a comeback! Lets just see how long it takes!

Full Spine MRI Results

My doc called me with the updates of my full spine MRI and I guess results weren't too horrible. If you think way back to my initial diagnosis, at that time I had a fracture in my lower lumber and several compressed discs and had to get radiation to kill out some of that cancer and heal the fracture. I still have compressed discs and some other things going on in the lower back (some arthritis as well?) but apparently those items have been there for a while. Hence my 3 inch height reduction...yes I am finally coming to terms that I now am barely 5'4 inches vs. the 5'7 I use to be.

So what they did see is a new spot in the T9 area which is the thoracic spine. Its a small spot, I think 3mm, but it is in the actual spinal cord which is not good. So yeah it is not good news, but at least it's one spot. For now I am not really feeling any additional pain from that spot so we will just observe that area and pray that the new chemo will clear up this spot along with everything in the brain and continue to keep the liver stable. And let me give a shot out to my pain meds for my back because they sure do keep me going. I will now go back to admiring the pair of flat sandals that I bought today...I think this is the first pair of flat shoes that I have bought in years!! Can you imagine...no heels? flats? This is definitely a year of change for me! :)

Shopping and a New Look

Those that know me know that I love to shop and get a good deal. Normally I always score big at sales and end up with some pretty good pieces. Since being in Ohio I haven't really gotten out to go shopping and scoping out for sales like I use to when I had my transportation close by. Well this weekend my good friends came up for the weekend so Auntie and I got time to go out and explore and let me tell you I was loving it like a fat kid loves cake. For one, I had been saving up all my coupons just waiting for a chance to hit them up all at once. Also, with the big 3-0 birthday coming up I have been trying to see what "fantanbulous" outfits I can find for the celebration. Well I think I stayed pretty much in budget with my finds. But one purchase that I really like and didn't even plan to get was the "new look" aka HAIR! I now have a new look and I am thinking that I like it!

When your body is going through so much its like sometimes these outwardly changes can also be overwhelming because it is like the actual physical reminders of your sickness....your bald because of treatment...clothes don't fit the same because of drastic body changes...because of treatment. Its a lot to take in. And I will tell you all this; I am still trying to get accustom to this new very oddly sized 4/6/8 body that I have now that does not have any hips or bum. It is very odd to me and odd to dress and who knows when I will get use to that! I know that I will have to start exercising to stop the steroids gutt from getting out of hand...that will help the situation a little at least. That and not eating ice cream every single night!

The MRI revisited

One of the first blogs I have ever written is about the horrid MRI machine. Which still ranks as one of the most absolute evil machines that was ever designed! Since that initial encounter, I have had a few MRI sessions, much shorter than that first 2.5 hr one and I have found a way to manage. It is all about finding that mental spot to hide in and just wait out all the noise until you can once again free yourself from the grip of the devil machine! Ok. Well today I had a full spine MRI. I had been feeling like my back is getting "achier" and I want to make sure that the bones are not starting to act crazy. Well somehow, throughout the barrage of tests and other events that I have been battling recently, I must have forgot that a full spine MRI is like a 2 HOUR MRI. Something that I would have wanted to mentally prepare for! Well I wasn't prepared so hence I had to fight the battle of Gail vs. the sounds/attack of the MRI. I am still around to write this blog so you know I got through...but boy oh boy that junk is no joke. I started with a good plan: slow calm breathing, eyes closed, birthday celebration options on mind: all things to keep the breathing stable, the mind steady and the body totally still. For most of the time it worked. But when you just loose a smidget of concentration you can through off your entire focus and then its a matter of trying not to panic in that small space...which is really hard to do! You don't want to move and then have to retake pictures...that just extends the torture, but you don't want to have a panic attack in there either. Once again to another test I can just say Praise God its over and keep it moving!

A week down and still around

So I have a week under my plate with the new treatment and I am still around to talk about it! LOL. I must say that on the first day of new treatment I think I was just waiting around for the end to come...most of it all being mental. But again through God's help...and with Auntie here I got through it. Sometimes you think you are taking things all in stride and thinking man I got this under control and all you have to do is focus and have a plan and it will all work out. But sometimes you are just not prepared and it just hits all at once and its all you can do to just hold on for that moment and not just go completely in the deep end. I think I freaked out people a little when I told them that I wasn't really doing well because they are so use to me being fine and just going with the flow. Everyone has their ups and downs and its something that we may not be prepared for but its something that we know will happen and when it does just pray through it and wait for it to pass. And having some anti-anxiety pills accessible isn't a bad idea either! :)

After the shock is gone

Ok...so its been 3 days since the first dosage of new treatment and I am still alive to tell the story. Now the actually swallowing of the pills isn't bad. I mean how many pills have we all taken over time...I mean can anything touch cod liver oil tablets if you don't drink enough water with them? Yuck! But that first night, I think the overall situation just hit me all at once and with that came jitters, anxiety, panic all at once. All I can say is that it was ROUGH. Those of you who know me know that I can sleep anywhere at anytime no matter what the surroundings. But that first night had me up all night with 10 minute intervals of rest. Its hard to describe the feelings but I guess it was close to feeling like going crazy...how ever that feels. Now don't go calling the medics for me now please. I am ok...just giving you all a taste of what it was like. But as I say, God is good and he didn't keep me in that space. Yesterday was a great day and today is to. So once again its a matter of trying to enjoy the good times and black out the others!! And I think we all have noticed how fast time is flying by. I think that is to our benefit so that we can get through each day. So make sure that you are maximizing your days and making them count.

The Shipment is in

So I picked up the package of my new treatments today...delivered to the apartment. So I got a good hard look at my "horse pills" that I will be taking and divided them up into my cute pill containers so I don't forget a day. On face value nothing major, I mean they are just pills like the many others I take and have taken in the past. But then you read some of the reading material that comes along with it that have such wonderful descriptions on side effects and "do's" and "don'ts" and it gets you to thinking, just what all comes along with taking these meds. But the point is the good outweighs the bad right? So no matter what the goal is to stop the cancer however possible.

So now its time to pray and man up to prepare to begin the new regimen in the morning. I think I have read enough online blogs and postings on these meds to know to have some Imodium ready for possible diarrhea and lotion for the possible "hand/foot syndrome" But still, the unknown is still scary and its hard to face.

Super Duper Cancer

Met with the doctor so have alot more detail on what is really going on. So as you know, I recently had whole brain radiation and I had the scans on March 20th to see the progress...and the progress was good. Only like 2 tumors were left and they were smaller. Well I got the report of my emergency brain MRI on Friday and in under a month those tumors have already started to grow again and now there is cancer in the fluid around the lining of part of the brain. So it seems that I am not a candidate to have breaks from chemo or any type of therapy! It seems that this cancer needs to be battled at all times.

So now I am looking at a new type of chemo combination which is all pill form: Tykerb and Xeloda. Tykerb is similar to the Herceptin that I was taking and Xeloda is the actual chemo therapy. Tykerb will be 5 pills in the morning once a day on an empty stomach. And then Xeloda is about 1/2 hour after that after a meal in the morning and then again in the afternoon after a meal...3 pills each time. The biggest side effects I am looking at are diarrhea and this thing called hand and foot syndrome where its like your hands and feet to itch and burn and can get really red and painful if left uncontrolled. So time for prayer on side effects and just good tolerance of these drugs. Its late so before my great grammar skills start to hit the toilet I will call it an evening and continue with the post later!

The're Baaaaaackkk

Hi Everyone! So I left you with some good news less than a month ago. I so thought that I would just continue with postings about my bald head and me looking forward to moving back to DE and a step towards "normal". But God's plans are not ours so I have to take it as he dishes it out and know that he will provide the strength for me to get through it.

Recently, maybe the last week to two weeks I had been experiencing some headaches and like a heavy feeling in my head when I get up. Thinking that it was just me jumping out the bed to fast I was trying to think that its nothing. However, I am not the one to just get headaches. So in the spirit of full disclosure I called my nurse and explained my feelings. And of course the ordered an emergency brain MRI. Well I did the MRI this morning and got the call back this afternoon. Once I heard it was my oncologist on the phone I figured it was bad news. So we know from the last MRI that there were 3 small spots left in the brain but they were smaller. Well it looks like they have gotten a little bigger. But that is the least...the bad news is that there is new growth/new stuff growing along the lining of the brain. I don't know where this came from but it took us all of by surprise...including the doctor. So here I am almost a year into this journey and facing chemo in the face once again.

I meet with the doc on Monday but I know that she will be proposing some new chemo where it is oral tablets taken every day. On one hand I am thinking that maybe because its different chemo, it won't be as toxic as my last chemo run. But also I think back to the young lady who is my age in the support group I attend who was on these chemo meds and it tore her stomach up (major diarrhea) to the point that they took her off the meds. Now I know that everyone's journey is different, but its just food for thought. Those that have been on chemo, knows how it is to be on it and how horrible you can feel. And after being on a break from all that, just the thought of coming back is as much scary as it is depressing. But as Jahaziel says in 2 Chronicles 20:15 "...Do not be afraid and do not be dismayed at this great horde, for the battle is not yours but God's" That's where Yolonda Adams got the song from! :) Easily said but very hard in practice!

Time for some good news

As you know I had radiation for 15 days late Jan/early Feb because of several lesions that they found in my brain. Well I had the MRI done today and met with the doctor to go over the results and next steps. So the results were...wait for it.....

Out of the MANY lesions that covered the brain (his words) the majority of them are gone now and the three that are left are substantially smaller...we talking less than 1cm!! And he showed me the brain scans so I saw those stink spots with my own eyes. So now I can exhale and stop thinking that every little headache I got was another tumor growing! Another example of how God is soooo good to me and is taking care of every aspect in my life. Words can't even express my gratitude. Let me tell you all, you can never give up even when things look like they are at their worst because God is always in control and he knows whats best even when you are wondering on what his plan could be.

So given that the radiation is still working, I don't get another brain scan for another 3 months. So now that the brain seems to be in good condition, I think my oncologist will hold off any new chemo until my next review of the liver in 5 weeks. So as aways (it seems) I am waiting on more scans to see what my next next steps are. But for now I am moving forward...so back to the Delaware apartment hunt and the hunt for a "fantabulous" wig to cover this coconut head.

Results and more waiting

Today was the day for scans to see if there had been any recurrence of the cancer. I did a bone scan and a CT scan of the chest, abdomen, and pelvis. And the results are....well mixed. The bones are "stable" so that means there is no change, which is good. The chest was also clear. And then there was the liver. So the last time I had scans, it showed that there were only a few very small (less than 1cm in size) lesions still in the liver, but because there were so small and so few I was able to go on a break from chemo. This time around, in addition to those lesions, the tests also showed a few additional ones that were even smaller in size: less than 1mm in size. So one of two things happened: either these spots were there the last time but the machine didn't pick them up or they are truly new growths. The official report says: "Mild disease progression with several new subcentimeter hepatic lesions"...I mean why they can't just speak English!

So next steps...well we moved up my next ct scan to 6 weeks from now so we can keep an eye on these spots and see if they are growing. If they are then we can talk about therapy at that time...I was told that I would be on some different chemo drugs than I was before....lets hope for less puking please!!

The next BIG thing is the MRI of the brain that I will be getting next Friday (3/20) If those tests are clear then we are clear until the next CT scan. If they are not, then it will be back on treatment to take care of the brain and these small lesions. So once again we are back to waiting to see what happens. The only one that knows what's next now is God as he holds all things in his hand. So I will just fall in place and take what he gives me...which I know whatever it is is for the best. HOWEVER sometimes you can't just help but get a little scared. But no worries...I will man up in time! :)

When it Rains

I have been blessed to have my aunt up here with me taking care of me. And yes I have been relishing in not having to cook and getting food brought to me...who can ask for anything better than that. Well, recently my aunt started to feel under the weather and it ended up escalating to us going to the hospital and emergency surgery. But no worries, all is well, and she is currently recuperating as we speak. But it does push the point on why does it seem that everything happens at one time. Just when you think you have a break, something else happens which leaves you again having to cling to God to get strength to get through it. But maybe that is the plan! Through our lives we are bound to have ups and downs, and sometimes more downs it seems. But that is what will build our character and help us in our christian walk (if you are a christian). Sometimes things need to get real bad (in our minds) to help to lean on the one person that can really help us. Hence I try not to think about my situation too much and just focus on other things because it could always be worse. and no matter what I am still blessed.

Getting on Schedule

As you may know I am currently on a break from the chemo therapy and really just waiting for my next set of scans in March. So now that I am back to working from home, I have been trying to get back to some sort of normal by trying to get on a schedule. So far I have been failing big time! So far the only thing that I do regularly is wake up, open the laptop and log into work. After that my wonderful auntie will bring me some tea with breakfast and then its work work with cnn or soaps in the background. One of the things about working from home means that you can work all the time...so I know co-workers must wonder what's going on when they receive emails at 2 in the morning! Oh well...just trump it up to dedication. But I know that is not healthy to stay up that late night after night...and I know I have to get myself back on track to normal hours so I can start to get on a routine. If not, then I will be looking to take naps in my cube during the day...don't think that will be acceptable at work!

GI Jane is Back

One of the effects of radiation is hair loss...but unlike chemo that makes you loose all your hair..everywhere...radiation makes it fall out in patches based on where you had the treatment. Given that I just had treatment to the brain, the patchy hair is all on my head! So it was time to have another interaction with the razors and go bald again. At least this time there is still peach fuzz left...the dome isn't as shiny as it was the first time. So lets see what hair texture I end up with in a few months...I say back to "kinks"! Oh by the way, with the bald head I have to photograph with the glasses...make me look more presentable!

Hurry up and wait

Its been a week since my last radiation treatment and the reduction of steroids has begun! So I am slowly waiting for the "moon face" to go down and for the body to stabilize back to pre-steroids form. Even though it will be interesting to go back to the pre-steroids body, because I wasn't in that for so long either.

The body has been going through it seems like a constant change....very sick, to chemo, to some recovery, to radiation, to now hopefully more recovery. So right now I am down to "maintenance" that I have scheduled every 3 weeks. My next set of scans aren't until March 12. So I have alot of time to wait around to see if I am getting better or not. And the wait itself is horrible! Because any little feeling that doesn't seem right makes me think that things may be going down hill again...was that a pain in the stomach? oh no its spread...wait was that a headache? oh no its still in the brain...wait, did my eyesight just get blurry?

But you know that is a part of recovery I assume. That's when you have to have the faith that everything will get better!

The Radiation Routine

The countdown is on...four more days for radiation treatment and then we can close the chapter on these sessions. It is hard to explain what going through radiation is like...well brain radiation, but it has been an experience. One of the most ummm..."interesting" parts of this experience has been the van rides that have been taking me to my daily radiation. The Cleveland Clinic provides a great free service that takes patients free of charge to and from radiation treatment . However, given where I live, I am the first patient to get picked up and the last person to get dropped off. So we are talking over 6 hours of just sitting as patients are picked up and dropped off.

My actual radiation sesions are at 12:15 every day and last for less than 5 minutes...really quick sessions. So the daily routine goes as follows...wake up, drink some tea, take the first dose of steriods at 8am. Read some scripture and try and get the mind right before dragging on some clothes to get ready and meet the van. Meet up with the van at around 8:40am and get settled for a few hours of driving. Arrive at the hospital, take the second dose of steriods at noon. and then wait to get seen Get the radiation and then wait to get back on the van for some more driving. Arrive home at around 4pm....or earlier if your lucky.

Not the most fun of situations...but at least it is almost done!! And I guess i could be more sociable with the older folks that ride the van...but I think they think i'm shy...or quiet or something....everyone knows how shy I am! :)

Beauty

Today I had a support group meeting and we did the pick a word exercise. That is where we pick a stone from the bag and when called on, we turn it over, read the word and share how that word is playing a part in your life. So tonight I got the word "beauty". So of course my first comments were to let them know that I have had to redifine my beauty definition as I lost all my weight (and my butt!) and my hair and other features of your "beauty" that you come to get use too. But seriously speaking, I think that cancer has allowed people to see more of my inner beauty. When its all said and done, the physical parts of beauty were never made to last. It all eventually fades away and if you have been banking on just those parts then you have been setting yourself up for failure. The real aspects of beauty is what lies deep inside...your personality, the way you interact with others, and the way that you can bring out the best in others.
You can always get some hair weave and some good mascara to bump up the physical, but if you don't have any substance, there are not enough MAC make up counters in the US that will help you out with that! (and I love me some MAC makeup!)

F-E-A-R a four letter word

In my house the use of certain four letter words were forbidden of course. No foul language in the house. Now I find myself staring another four letter word dead in the face: FEAR. I would be lying if I said I wasn't scared at this new part of the journey that i'm on. I guess I woudn't be human if I didn't get a little frightened. When I first thought about whole brain radiation, my thoughts went immediately to those cartoons when they have like those radient beams coming out your head! And then I thought about brain damage and anything else that could go wrong. Of course the doctor set me straight on the real deal with radiation and what it really consists of. So then my fears focused around the actually side effects, and going through them. Its just all a bit much! But the big part is not staying in that feeling of fear and getting stuck in a rut. So I try not to think towards the future too much, because the uncertainty of what is to come is very scary. I also try and remember that the bottom line is that I am not in this journey alone. God has really brought me a very long way and he is still right beside me taking care of me. Once I remember that, I can get through these radiation treatments and whatever else might come afterwards. My good friend sent me this scripture and it is so true:

Psalm 56:3-4 - When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?

Another Test...for the Testimony

Although I am on a break from chemo, I still have to get maintenance drugs every 3 weeks. So on Thursday I went in to get my fix of Herceptin (for the cancer) and Zometa (for the bones). My nurses and counselor at the Cleveland Clinic are excellent by the way. So I mentioned to my nurse that I have been having some small headaches ever so often and it had been happening since the beginning of the week. The docs and the nurse always say please tell them about any aches and pain that I may have...just to be safe. So they scheduled me for an MRI of the head for that same day...just to be safe and make sure everything is Kosher. If you have read my earlier entries you know that I absolutely HATE the MRI machine...but you gotta do what you gotta do.

Early Friday morning my phone rings. Its always a bad sign if your doctor calls you early in the morning to give you test results. This call proved that point. The MRI shows several "lesions" in the brain...the cancer has spread to the brain. Devastation, Hurt, Sadness, all these emotions at once along with tears after hearing the news...but I try and remember that God will give me the strength to get through this.

With the initial shock over, I meet with the Radiology Oncologist and listen to the detailed diagnosis and treatment plan. Seems that I have several "lesions" (aka tumors) in my brain so our best bet is whole brain radiation. After listening to the details and the list of possible side effects, I get mapped for my radiation treatments. What they do is make a mold of the head/face and then they map out where the radiation beams will hit on the mask so when you come they are always hitting you at the same spot. The mask will also make sure your head is completely still when they do the procedure.

So I will get 15 sessions of radiation. And the thing with radiation is that it continues to work after the sessions are done. Radiation itself is only like 10 minutes and is painless. It's the side effects that are problem with radiation: fatigue, hair loss, skin changes, headaches, nausea, and hearing changes...and those are the short term effects. Just when I was getting use to my nice, soft, chemo straightened hair, here comes radiation to zap it away. Oh well, that is the least of my worries! Bottom line is that God is in control no matter what happens, and he once again will get me through this. He has never forsaken his children and I know he wont leave me alone.

And What is Normal?

So now that I am on a break from chemo, I am assuming the next step is "feeling normal". But really what does that mean? Well here is what I am waiting on. I'm waiting on my tummy to feel normal and want food on a regular schedule...no more funny stuff tummy. Just food no nausea.

Now I know I have complained about the hot flashes...but if you got them you would complain too! So next on the normal express is for hot flashes to cease and desist...or at least not be so intense. Although I must admit they have gotten much better since I have been on this break. And even though there is a chance I might be in menopause to stay, it looks like these flashes may be headed towards the door.

Next is the itching/burning/stinging that I was getting in my hands and feet. Well Praise God that I don't get that anymore. The last stinging incident was put to rest on the shores on Brewers Beach in St. Thomas and since then, I haven't felt that...its all about the celebrating the small things people!

Lastly is just that feeling that everything is ok. I know there is no definition for normal, but to me its just that routine of "normal things" get up, go to work, eat, come home, work out, eat, sleep...and feeling ok while doing all of these things. Maybe its like a switch that will be turned on in my system where I will just one day be like "yeah, this is it...i'm back to normal." Or maybe its gradual and one day I won't even realize that I have been thrusted back into this cycle of normalcy. Either way I look forward to either scenario with baited breath...okay maybe thats to dramatic...but you know what I mean!

Caribbean Therapy

One of the first things that I was able to do after I heard that I am on a break from chemo was go on a vacation. God blessed me with enough health and strength so that I could make the trip to St. Thomas for Christmas. As some of you may know, ever since I left for college I have been home for Christmas every single year. After everything that has happened this year, at first I thought that I would have to break that tradition. But God allowed me to get on that plane and relax at home for a week. I really think that there are therapeutic benefits to warm weather and sunlight. The water might have been freezing, but I sure did hit the beach a few times and immerse myself in that nice clear water. Just to be able to go outside and see a perfect blue sky just does something to your attitude that anxiety pills can't touch!