Risky Business

I use to get so angry with my dad and they way he handled his diabetes. He’d eat all the wrong foods and justify it by taking more insulin. I would tell people that I hated watching my dad kill himself, because that was really what he was doing. I vowed as a diabetic never to put my loved ones through that and for the most part I am a responsible diabetic, I eat properly and check my blood sugars often.  My dad died when he was only 57, years of running maple syrup through his heart caught up with him. He always said he’d rather live and enjoy life verses being miserable and not eat the things he wanted. I had to learn to accept that it was his life and his choice, still though it is not easy to watch a loved one literally make the choice to kill them self when a treatment is available to extend that life.

I now have a better grasp on what my dad was going through mentally. I have had to make some difficult choices about my own treatment and life. The worst part with these choices is the dealing with loved ones responses, I think I now know why some days my dad would not answer his phone. Most likely one of us kids calling to give him grief ” what did you eat today dad?” Sheeshus, as an adult who needs that.  Since the first day I told friends and family that I had cancer, I’ve had to deal with well meant advice. No one reacted this way when I announced I had RSD, yet mutter the words cancer and woah nelly, circle the wagons – she’s dying.   I do not even think most of them know what type of cancer of have beyond that it was located in my tit. In fact I’d bet my stash of chocolate, 1/2 of then couldn’t tell ya which titty, but just that its cancer and cancer kills.

My Meeting with DR.

It’s taken me almost a week to settle down to write this, I needed to obtain some objectivity. I was pretty angered when I left the doctors office. He didn’t charge me a co pay for the visit, how nice.  For those just reading I have breast cancer. Long story short I made the choice to skip radiation based on the fact that I also have RSD. The radiation can cause the RSD to spread to my chest.  The doctor wanted to meet with me to discuss treatment options.

Doctor strongly advises that I get a double mastectomy now. He threw out a bunch of statistics about cancer coming back and blah, blah, blah. I can appreciate the good doctor doing his job and advising me. There is a more burning issue and I’ll get to that shortly. In the end I have decided, better said “we” have decided not to risk the RSD spreading. I will get check ups and if the cancer does come back i will then opt for the double mastectomy. Many of my family and friends not agreeing with this decision.

Insert catchy Subtitle

Okay, what really fueled my engines? The good doctor. All doctors I have been dealing with. Prior to the Lumpectomy I had informed the doctor of my RSD. This is a serious neurological condition.  The doctor performed the lumpectomy with no precautions to the RSD.  Shortly after the surgery I started noticing  signs of RSD in my left arm from where the node biopsy was performed.  I told the doctor, he brought me in to check for lymphodema, the test was negative. So the doctor refers me to a massage clinic and tells them I have fibromaylgia. Whut?  Fast forward now to this latest appointment.  I’m explaining to the doctor my reasons for passing on the radiation, I mention the RSD and how radiation has been shown to be a cause of RSD and thus the risk for spread to my chest. The doctor admits he knows little about RDS, Yes he says RDeee-S and repeats RDeeee-S several times.  I then mention that before my surgery a special block should have been given to prevent any RSD spread. I go on to explain RSD and the mechanics. I only first learned about the block from a blog reader. The doctor goes on calling the condition RDee-S. Really? Okay an honest mistake, but I am suppose to trust any further  treatment to a doctor that knows nothing about my condition? NOT! And quite frankly I am insulted that he is calling it RDeee-S and not RSD, I mean really even after I called it RSD back to him?

Silly me I thought this doctor would have my medical care in his best interest. I don’t get it. I use to run a business, I did branding campaigns for small businesses – it’s marketing.  When creating campaigns I researched everything I could about the business and the widgets they produced.  Yet this medical professional researched nothing about my condition and performed a procedure that caused my condition to worsen. If I created a careless campaign, I’d be fired. Guess what? I fired this doctor. Unbelievable.

The RSD Doc

Prior to meeting with my cancer doc, I had a appointment with the doctor who has been treating my RSD. I had explained the whole cancer treatment situation to her. Know what? She completely agreed with my choice not to have the radiation or the double mastectomy at this time.  Yes, I went to the cancer doctor pretty much with my mind already made up.  The RSD doctor had mentioned something very important, she said; “if this doctor is not understanding you’re RSD then we’ll find one who does.”  Very important advice that validated my feelings that my RSD was not being taken serious enough by any of the doctors treating my breast cancer.

When will the medical community wake up? So many do not understand RSD and refuse to learn about it. I’m angry at myself for trusting my care to a surgeon who thinks he knows everything and an oncologist who just shrugged his shoulders at me after I was in the ER twice in one day after my first infusion. Both of these treatments have advanced my RSD and neither doctor has a clue.  I should continue to pay them? More like a I should sue them for not having my best interests in mind. I now feel both were negligent in my care. I’m very angry. Some could say what choice did I have, it was cancer you had to have the treatments. Yes, but there were preventative measures that should have been taken in those treatments. I’m now left with RSd that advanced to my left arm from the surgery and, RSD that progressed from lower limbs up to small of my back form chemo. The oncologist said the effects would wear off, silly man – this is not the effects of chemo – it’s RSD and it is permanent. I still have trouble walking, I’m out of work and my home in financial stress.  I do not know yet how to explain my mindset without sounding like I am self loathing. I guess to put into perspective, would you go to the dentist to have a root canal done and end up with three teeth being pulled? If that makes sense.

It is Thanksgiving Day here in The USA, I’m up early writing.  I actually woke up at 4 am. Im happy that I slept again for about 5 hours straight, new meds. I am thankful for much in my life. Number one – my supportive husband. This has been a stressful ordeal on him as well.  I’m thankful for my son, who for the most part remains supportive and positive with me. He’s off getting me some coffee right now, I ran out two days ago and just have not been able to muster up the energy to leave the house. The cooler temps have made my RSD flare up something critical!

I think now is a good time to end this latest post. I’d like to thank all the readers for the constant support and kind words as well as helpful advice.