Be Your own Health Advocate...Noone else can be!

Well have had a challenging week with my health, was knocked down...but am rising back up...you have to, well we always have a choice...and I choose to fight..I have had some disappointments with our healthcare system and some major frustrations in lack of communication...this is what I have learned.

Do not give up on your instincts, and sometimes when we think that the experts or physicians totally have it together, we may be trusting too much.  I started chemo 4 cycles ago or 8 weeks ago, when I met with my oncologist I had been battling blood clots that were in my lungs and chest but with injections they had been managed and even had approval to travel so great sign, as blood clots on their own can be quite serious..

After 4 rounds of chemo which I have tolerated decently, I have had ongoing shortness of breath, if you spend any time with me and I am chatting or walking it sounds like I have been smoking cartons of cigarettes and have played a few rounds of bingo...Raspy not sexy and slightly winded...

Always mentioned this to my oncologist which during 3 rounds was someone different who was replacing my oncologist for vacation...really not much attention was paid to it as anything serious they would check my O2-which was decent sitting and dismissed...

Fast forward 4 treatments which we were going to wait 6 treatments but wanted to find out if the chemo treatment was making a difference...I get the CT scan which I tell you am not the greatest fan of and the fill in oncologist calls says you have some blood clot issues and need to up your dosage on your fragmin a blood thinner I am taking..but do not have your final results your regular oncologist will catch up to you next week...ok check... will get that rectified...done.

See my regular GP on Monday Doctor Pungur, has been a God Send through this whole process, as she is not numb to the caring part of her role, and does everything in her power to make a difference.  She is understands the increase in dosage does not have the CT report yet but based on what I am telling her feels good that this is the next step...notices my breathing challenges and writes up a requisition to have my lungs assessed, and recommends I get some 02...my dream of having my own tank on wheels and dobber and multiple rounds of bingo in my sexy wig is getting closer to my reality..I am excited. Really I need something to help fill my days. Think of the fundraising I could get accomplished for Hockey probably have it all done in a month!

Pungur calls Tuesday and says she thinks I should maybe be in the hospital based on what she is now seeing in the CT report...I said have you caught up to my oncologist, who is steering the ship?  She catches up to OC and she says should be ok based on dosage bump?

Call on Wednesday from Pungur's office saying you cant drive...ok I am now like WTH is going on? I call my oncologist from the Cross Cancer who hasn't called me yet all I have at this point is a regular scheduled appointment to get routine blood work follow up, and chemo scheduled for next Tuesday...

She gets back to me at the end of the day...I am like what is going on?  She says my chest is loaded with blood clots one has attached itself to the bottom of my heart and arteries, and lungs and there are multiple clots going on that can break off and potentially be fatal.  Oh that's nice you were going to tell me when?  What am I supposed to do with this informtion?

The chemo has not been working and has potentially caused the blood clots...which can happen, and I know this, but here is where things went wrong....they dropped the ball on monitoring my blood clots, we could have known weeks ago when breathing issues were an issue that complications were occuring...her oncologist didnt even know I had blood clots even though I told him...I am like what is your next plan?  Well we will change up the chemo to see if we have better results....

Here's the deal, I am not a number I am a human being...even in Distribution and so many of our businesses, we would get back to our customers or our own team,with any issue withing 24 hours, never mind something as serious as your life.  We need to expect the highest level of accountability from people that are responsible for treating our health issues.  We need to demand it. Communication is everything, at all stages, do the doctors  become so numb to the human condition that they stop caring,  Dr Pungur excluded...she Rocks...are they so overworked that they keep up and everything falls through the cracks, and balls get dropped....not sure, but will find out on Tuesday if my Oncologist is with me in this fight, and is ready to get aggressive, and manage my case more effectively keeping her team informed, being a Leader and doing what's right...or if this is all she has and is at her most productive, well then I have some decisions to make...

Onward and Upward....