Monday, June 10, 2013

Typical day at the hospital on Friday. Checked in to find that one MRI machine was down. Either this is an every day occurrence or it just seems to happen when I’m there.

Was finally called and was set up for the test. Entered tube and waited for it to start (for those of you who have had a MRI you know when it’s running). Next thing I know I’m being pulled out only to be told that this machine just went down (must have been my magnetic personality). The third machine was running and it would be approximately 40 minutes before I could get tested. OK – at this point what was another 40 minutes. Funny side note – the tech went out to advise Mark of the situation and the way she phrased it had him in panic mode. Said there was a problem with “fluids” and of course he’s thinking of an IV issue and had visions of me on the way down to ER. It wasn’t until she clarified that the fluid issues were with the machine and it overheated and shut down (maybe the problem is I’m HOT STUFF) and they couldn’t get it restarted that he calmed down a bit. In the mean time another tech came to see me and they decided to send me over the Brain Research Lab in another building so I had to get dressed and trekked about a mile through maze of halls to this dark area of the hospital (think your worst horror movie), through the doors and into the MRI area to get ready. The whole time I was thinking I didn’t want to see what was behind the closed doors to the lab. Once again set up and they started the test. Should be end of story – right?? Well with the MRI I have they run the machine for about 15 minutes taking 3D pictures, then pull me out to inject contrast and back in for another 12 minutes. The injection they give me is a butterfly needle so no honking big IV needle to worry about. The first stick in my inner elbow she missed. I suggest she use the hand where I’ve had them before. Got it in but because my veins are small and thin (at least something on me is) I believe she got some of it into my system but went to fast and blew through my vein. Although at the time all I could think of was how this wasn’t feeling to good but kept my mouth shut because all I wanted to do was get out of there. It wasn’t until we were in the car that Mark noticed my hand was all swollen up from what I assumed was the contrast that didn’t make it into my vein.

Since it was Friday and by the time I got out of there it was after 11:30AM I wasn’t expected any results until Monday so I tried to push it from my mind. I wasn’t too surprised when I got a call from my doctor on Saturday morning letting me know that the results were not too good. Seems there are two confirmed brain tumors and a couple that need more investigation. She is getting with the radiation team today to map out a course of treatment and options. She was surprised with the results since I am not exhibiting any of the usual signs – headaches, vision lost, etc. More surprisingly was the fact that I initialed the MRI because I felt a lump where my last tumor was and there was no signs of cancer in that area. I told her that maybe my body was trying to send me a message because if it wasn’t for the lump I detected we wouldn’t have pursued an MRI. Lesson Learned here is to listen to your body. From those of you have been following my journey over the past three years might remember that it was pleurisy that sent me to the hospital only to find that the cancer had returned. If it wasn’t for my body giving me serious enough signs to have a CT scan I probably wouldn’t be writing this today. LISTEN TO YOUR BODY! Don’t be afraid to approach your physician with concerns. That’s what they are there for and you shouldn’t be embarrassed or think you bothering them.

So I’m in the waiting game right now to see what the next course of action will be. I’m back on those dreaded steroids again. My doctor remembers how much I hated taking them so I’m only taking them 2x a day vs. the 4x a day they had me on last time. If you remember these make “Mean Doreen” come out besides the swelling and increasing my appetite. I’m trying to keep veggies and fruit around me to avoid scarfing down whatever I see.

I’ll try to post whatever I know to keep you in the loop. Not to bore you but there may be several postings this week depending on what I hear.

Keep those good thoughts and prayers coming my way. I truly believe that between keeping busy and my life normal I can get through this. It’s my family and friends who keep me going.

Keep On Dancin’

Wednesday, June 5, 2013

Don't Be An Ostrich!

I could never understand when I hear people with life threatening conditions say they have had enough and basically give up. To me giving up has always been a sign of weakness. My motto has always been “fight to the finish”. On my pink ribbon checks I even have the words “Never Give Up” printed along the bottom. To me, giving up has never been an option as demonstrated by running more then one marathon on a bad knee and refusing to stop until I limped across the finish line.

These past three years have brought new light to the words Never Give Up. The words are easy enough to say, but until you’re put in a position what do they really mean. When I first started this journey a good friend of mine who was diagnosed a few years before me with the same condition told me that this would now consume me and be a way of life from now on. I remember wondering what the heck she meant. I went through it once 8 years before so what would be different now?? Well it took awhile for it to register but I now understand exactly what she was telling me and how the words never give up would change. Once you’re “sentenced” you can never get away from it. It’s on your mind 24/7 with sleep as your only escape. You may not show it in words or actions to your friends and family but believe me it’s there. 

By nature I’m a very positive person. My nickname with close family and friends has been Pollyanna throughout the years (for those of you who don’t get it look up the Disney movie Pollyanna with Halley Mills). Like Pollyanna I too like to play “The Glad Game” which consists of finding something good in every situation. But the more time goes by it’s getting harder and harder to stay focused and keep a positive attitude. I think a lot has to do with dealing with doctors. Don’t get me wrong, I love my doctors and have a lot of faith in them. But as the late Gilda Radner said “It’s always something”. I call it the “but” clause.

Case in point – I had an appointment yesterday with the Pulmonary Doctor to get the results of the bronchsoscope. I was feeling pretty confident since after the procedure he gave a positive report and just needed to get back the results of the specimens he was growing to see if there were any infections. At chemo last week my Oncologist's nurse mentioned to me that so far from what they saw there was no signs of infection and everything was looking good. So I was feeling pretty good when I met with him. As expected he said everything looked good when he did the procedure and every viral, bacterial and fungal infection he tested for all came back negative. No signs of infection or cancer cells were detected. Great news until the big BUT (and I’m not talking about what I sit on) came out of his mouth. What followed his BUT was that if the inflammation on my lungs doesn’t show signs of improvement by my next CT Scan (July 9) that he wanted to do a biopsy to get more tissue to test. Ok, as much as I don’t want to go through the procedure I could live with it. Then came the next BUT – if nothing shows up then they will have to assume (although with no positive proof) that it’s the treatments causing it and I would have to stop the chemo. WHAT??? Stop the drug that has improved and kept stable the cancers for almost a year and a half?? You're kidding me??? Basically it’s called CYA (as in cover your ass). In my opinion doctors and hospitals would rather take the routine way of treating patients, even though history has shown it’s not successful, then be a pioneer and explore new ways to treat diseases. I understand it has to do with liability and lawsuits (maybe we should blame the attorneys) but let’s not sugarcoat it. Those with advance stages of cancer are going to die eventually. There is currently no cure, just advances in prolonging life. Maybe if there wasn’t such a cavalier attitude towards filing lawsuits we wouldn’t put the medical profession in this position. But until things change, the protocol in administering drugs such as chemo is always going to be business as usual instead of pushing the envelope. It make you wonder how a drug such as chemo was ever developed (it was actually developed during WWII for chemical warfare and further developed at Yale as a treatment for cancer) and the first patient treated with this sort of attitude. Maybe there weren’t as many lawsuits back then. Until we push the envelope with treatments we’ll continue to have Band-Aids and never a cure.

So, getting back to my opening statement about people giving up, you could see the BS that’s thrown at you until you finally have enough. Gone are the days of just getting positive news from your doctor without the dreaded BUT (I should have t-shirts printed with the words NO MORE BUTS). Today is filled with test being ordered by doctors in order to cover their butts to avoid lawsuits. Unless something changes, tomorrow will be filled with robot-like physicians taking in the information and spitting out a predetermined answer based on the disease rather then taking the patient into consideration.

With that said, being the positive person you've grown to love, I’ll continue to fight for my treatments and do whatever it takes to see they continue. If there’s one thing I’ve learned is you have to become your own advocate and question things that you don’t understand or doesn’t make sense. Don’t be that ostrich with your head in the sand letting everyone else make decisions for you, Be a part of the team and when you don’t agree with the ways things are going speak up. Take charge of your most precious possession – your life!

Don't be an ostrich! (I've been waiting for a chance to use this picture I took over a year ago)

Thanks for listening!

Keep On Dancin"