At what price...

The FDA issues a strong risk advisory against a medicine I've been taking for almost five years. My doctors won't prescribe it anymore and they have no alternate suggestions. Since the medicine helps me digest food that I can't normally process due to gastroparesis, I'm stuck - literally. And I'm scared.

It's easy to understand the physicians' concerns about liability since the medicine can, according to the FDA, cause cardiac issues; however, the drug is available in other developed countries. Are we, in the U.S. to be deprived of this right? Is this "big pharma" running the show? Is it more lucrative for them to have those of us who rely on this drug end up in the hospital and, potentially, dehydrated, at the brink of starvation, and in need of radical surgery?

Here are my options:

1) Stop the medicine cold turkey and wait until I am sufficiently impacted and in enough pain to be admitted for emergency treatment.
2) Find and try supplements (pills, teas, oils, balms) from thousands of "natural" stores or websites that are eager to fill this gap.
3) Risk buying the drug from another country that only accepts e-checks.
4) Begin a purely liquid diet to see if I can manage it myself.

In the past few weeks, I've adopted a rudimentary combination that includes substituting the medicine with an organic supplement pill, edible oil and a custom herbal tea blend. I risked the purchase from New Zealand by supplying them with both my routing and account numbers from a personal checking account where it will take up to three weeks to get the darn, non-FDA approved pills. And, I am gradually switching to an all-liquid diet.  But, I'm angry. I can't eat and I can't poop. If this is TMI, you haven't been reading my blog very long because I share everything to try to help others. 

Lastly, I've also found a supplier of medical marijuana that I am now using for the joint pain from Lupus and my high anxiety that is attributable to constantly performing triage on myself every single day and trying to manage physical and cognitive medical problems WITHOUT all my doctors communicating with one another. It's exhausting. But you know that already.

The price tag so far for all the crap I've bought and tried this past month including my "regular" prescriptions is nearly $1000 and I don't know what, if anything will work. But the toll it takes on me is much, much higher. If another doctor fails to return my phone call, I'll, I'll .... do nothing or go to sleep. I've been a professional patient for 20 years now due to Stage IV Lymphoma and Lupus. Harsh chemotherapy is certainly the gift that keeps on giving!

There's one final possible solution discovered by someone in my online gastroparesis support group that I find hilarious. Eat sugar free Gummy Bears available on Amazon.com. If you read the reviews, you will laugh yourself silly. One of my fellow GP sufferers is actually going to try eating them rather than force-drink the gallon of medicinal liquid provided for a colonoscopy that we literally can't stomach.

At least there's a light at the end of the tunnel - pun intended - and it's possible that it will be gummy bears to the rescue!

Sugar Free Gummy Bears from Amazon.com

Lost in space...

"Danger, Will Robinson. Danger!" I wish I had Robot from the sixties television show Lost in Space to warn me when danger was near, like when I'm going to get smacked in the back of the head with yet another medical emergency.

Since I've been a 'professional patient' for 18 years, you would think I could easily recognize warning signs. Nope. It's always like an earthquake; a shattering of what I thought was a body working well.

It's like being lost in space ... surrounded by blackness, grabbing at stars or comets or flying objects that aren't within my reach. I think of George Clooney in Gravity letting himself come loose from the spaceship and slip, sliding away. It's somewhat beautiful yet scary as hell.

Last week I was hospitalized for internal bleeding. The source is as yet unknown and further testing is scheduled. I also found out yesterday that in addition to having Lupus and gastroparesis, I have Sjrogen's Syndrome. I'm still trying to wrap my head around that one.

So while the doctors toss out names of tests, medicines and supplements, I shut down. When family and friends wish me well or offer comfort, I shut down. I can no longer hide my disappointment in my ongoing poor health. I was once vital. Now I am idle.

Chronic illness is a creepy, crawly thing that should come with warnings all over it yet there is still so much we do not know, particularly about autoimmune disease. To read that Sjrogen's is tied to lymphoma made me gasp, Of course I suffered the stage 4B cancer years before I found out I have Sjrogen's but there it is - in black and white for me to comprehend

Today, I just can't. Call it a pity party or whatever you choose. I feel badly for myself and angry at my body. Floating off in outer space looks pretty good right now.

Death with Dignity - Brittany Maynard

Coming to terms with anyone's choice to end one's life is a difficult process and I have an unusual perspective from three points of view:

• A recovered Stage 4B cancer patient who was told three times I would die during my harsh, year-long treatment.
• A suicide survivor - the term used when a loved one completes suicide as my brother, Steve Crohn, did a year ago August. 
• A compassionate, health-challenged woman who is contemplating my own choices when and if I get critically ill again.

As 29-year-old Brittany Maynard said: "It's not a decision you make one day and you snap your fingers." 

No, it's not. Seventeen years ago, at age 36 and married with two young children, I had to fight the urge to let go - to surrender to the disease and end the outright pain it inflicted. I was determined to live because of my children. However, when it was all over, I said I would never, ever do it again; that is, I decided then and there that if I was ever re-stricken with cancer, I would not fight it and I would let nature take its course. Now I'm not so sure. 

My brother chose to die with his dignity intact. Suffering from life's challenges, personal trauma and mental illness, he selected the date, time and place and how he would end his life. Found with a smile on his face I 'see' him that way today; joyous and in Heaven dancing with friends and family. As much as I railed against his actions for months, I have come to realize it was his decision and he felt it was best. I accept it but I will always miss him. I just don't question his decision anymore. 

Finally, here I am today with news just last week that my white and red blood cells are, for the first time since 1997, in the normal range. I am no longer immuno-compromised. It is truly amazing what the human body can do - in time. I still suffer from Lupus, fibromyalgia, gastroparesis, severe osteoporosis, depression and anxiety but I manage day-to-day with no thoughts of ending my life. 

If time is only going to make you suffer more, I do believe we should have the right to our own life-ending decision. Maynard, who had terminal brain cancer with just months to live, had to move to Oregon to have that option. Other states are beginning to craft legislation that will allow assisted death in cases such as Maynard's.

Yesterday, surrounded by family and friends, Maynard wrote:

"Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more. The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type … Goodbye world. Spread good energy. Pay it forward!" 

May we all have the option to die with dignity and grace. 

Britanny Maynard in People magazine

Dying to Live

Today is my birthday. I am 54 years old. Eighteen years ago I was pronounced dead on arrival at one of our local hospitals, suffering from a misdiagnosed cancerous tumor wedged between my heart and lung. I had Stage IV lymphoma. No one thought I'd live past that night let alone nearly another 20 years.

And live I have - sometimes with wild abandon and other times quietly and at peace. As stranger and stranger health issues crop up (due to the aggressive chemotherapy I received) and I remain a medical oddity, I triage myself and move on. Since I wasn't expected to live, no physician can predict the toll the cure took and how long it will rob me of certain abilities. Am I scared? Heck yeah.

This is why I try to choose to live each day as if it was my last while I dance like nobody's watching. That's doesn't mean I'm always Happy like Pharell Williams sings; nor does it mean I escape tragedy. Those of you who follow my blog know that I am brutally honest about the issues I face. No one is more surprised than me that I am able to face these challenges time and time again, especially the suicide of my brother, Steve Crohn.

I don't really want to celebrate this year. My brother's death occurred on August 24, 2013, just two days before my birthday. He sent me a card that arrived a few days later. It reads: "On your birthday, remember that every day is a gift. So pretend tomorrow is from me." At first, I thought it was a joke. Slowly but surely, I've come to accept that he was giving me permission to live many tomorrows even though he wouldn't be here.

At 54, I'm going to do something I vowed I would never do. I'm going to get a tattoo on my ankle of my brother's paint palette and paintbrush. The tattoo artist is working on a sketch now using his actual palette as a guide.

As I work to revise my book DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness, I am mindful of the many changes that have occurred in my life since I first wrote it. The title will change, the 'innards' will change, its scientific references will be updated and I will have to stop myself from writing a brand new book.

That's okay. I'm here; even if I had to die a hundred deaths in the past 18 years to stay.

Holy Smokes!

I'm a little pissed off. It is no longer possible for me to deny that the rich and/or celebrated get better medical care because they can afford preventive medicine.

My new integrative/functional medicine doctor ordered dozens of blood tests that show I am out of range in critical areas. For example, with no known heart disease in my family (other than when my parents were nearing their demise) I am at immediate risk for stroke or heart disease unless I do something about it. I am 52, albeit with the physical body of a 62-year-old due to the massive amounts of chemotherapy I received during my lymphoma treatment and the subsequent radioactive tests that I have been undergoing for the past 15 years.

I also learned from my lab results that:

• I am pre-diabetic. My body is not processing insulin properly. No one in my family has diabetes.
• My kidney function is extremely low.
• I have zero vitamin D even though I've been taking supplements for years.
• I have zero estrogen and progesterone - again after taking medication for at least a dozen years.
• Gastro-intestinally, I'm a mess. 
• I'm dangerously dehydrated even though I drink the requisite amount of proper fluids each day. 
• My body is in acute stress due to the above and is working way too hard to maintain itself.

I guess I could have told you that because of the way I've been feeling; but to see it laid out on a three-page lab results form with the highlighted out-of-range areas is quite scary and makes me angry. 

Traditional medicine will wait for the stroke and then treat you. They will wait for renal failure and then start dialysis. They will let diabetes overcome before starting any kind of treatment that could prevent it from happening. Our physicians are taught to treat the event or the symptom, not to prevent any of it years before it might happen. 

I asked Dr. Dalal Akoury to rate me on a scale of one to ten with ten being the worst. She gave me a seven. However, she also gave me great hope. She's created a Road Map or treatment and recovery that will address all of these areas and more. She will help me live a longer and more satisfying life and wean me off of many prescribed medications that have been doing harm to my vital organs and are, simply, no longer working. 

I can't tell you exactly what she's going to do yet because while she rattled off (from her genius mind) all my treatment options, my mind was wandering. I was thinking how sad it is that everyone can't get these tests done (they cost up to $2,000) or work with a preventive medical doctor. I have elected to do this and rationalized (rightly, so) that if I can get off of just two or three chemical medications, I will save up to $400 a month in co-pays. 

So what makes sense in this restless and, perhaps, reckless Obama-care state of mind? The pharmaceutical companies will continue to make tons of money. Doctors will do even less preventive medicine - if they did it at all - and treat, treat, treat. I guess it costs more to keep us alive then to have us die. I also plan to meet with my excellent and progressive-thinking cardiologist and review the blood test results with him. I want to know if he would do this same type of extensive testing if insurance companies paid for it or patients could afford it. I want to know his opinion. 

As I've written before, I'm baring the good, bad and ugly of this new medical journey of mine. As a 'professional patient,' my modus operandi is to take the lead, even when I'm too damn tired to do so. I'm placing my very life in the cradle of a new type of medicine that is really 'old school.' Identify and fix  early using the very best natural foods and plant-based medicines that are available to us. Apparently one of my intravenous treatments with Dr. Dolly (as she is affectionately known) will contain Niacin to help my digestive system, skin, and nerves to function. It is also important for converting food to energy. 

As Dr. Dolly says, health is the new wealth. It is up to us to take charge of our own healthcare in whatever fashion we choose. But, make no mistake, it is up to you and you alone.

I'll let you know how it goes. 

In the meantime, I hope you'll check out my new website at www.dyingtoliveamy.com. The book WILL be available soon - I promise. I just had to make sure it was perfect!