Thursday, February 20, 2014

3rd Second Chance – Chapter 2.1

Back to my pacemaker and heart issues for a moment.

Remember that pacemaker lead I referred to in a previous post (3rd Second Chance-Chapter 2.0) that has moved from its proper placement on the left side of my heart to the center of my heart?  It's now time to address that left lead gone rogue.

My Arrhythmia Management Dr referred me to a Thoracic Surgeon with whom I have met and discussed the plan of attack.  The rogue left lead will remain in the incorrect spot that it had somehow migrated to. It cannot be moved back into the correct place, nor can it be easily removed.  Scar tissue has already fused it in its current place.  Therefore, it will remain where it is.  However, it will be disconnected from the pacemaker device. Thinking back, I believe it may have gotten jarred from its proper placement after a hard fall onto my left side a few months back. That fall occurred when my blood pressure bottomed out . No way to stop it once I feel it coming on - down I go.... hard.  I thought maybe I cracked a rib or my collar bone. That fall was painful. She (surgeon) showed me where and how she'll open my chest to gain access to the left side of my heart.  There are two options. The first option will be the least invasive.  Two small incisions will be made between my ribs to determine if this option is possible.  She'll attempt to guide a small camera past my fibrous scar tissue into the heart cavity. If she is successful with getting the camera paced she will then make a third small incision for the guided instruments and new lead.  If option one is unsuccessful due to fibrous scar tissue, then option two will be used.  Option two, will involve a more invasive process.  With this process, she'll make a 3-4" incision between ribs towards the front of my chest.  This will allow my ribs and fibrous scar tissue to be spread far enough to allow access to my heart.  Once the new lead is properly attached to my heart, the other end will be attached to the pacemaker device.  Another small incision will be made to access the device, which is under my pectoral muscle.  Either option, will result in a new permanent lead attachment, that will not move out of place, no matter how hard I fall.  Attaching the lead, surgically, will allow the defibrillator to work properly should I need it.  It will also aide by providing a beat to the left side of my heart as it fails on its own. Once the surgery is complete, I will spend a few (2-4) days in the hospital.  The date for surgery is set in mid March.

Next step will be to obtain a consult with a neurologist regarding the advancement of my RIBP, along with additional neurological symptoms, I am experiencing.  Most concerning to me is speech difficulty and advanced weakness in neck and left arm/hand.  Also, I am having increased tremors occurring with my arms and legs.  It'll be a much needed visit - I've been pushing it off for quite awhile.

Surviving, surviving survivorship, seems endless sometimes.

However, I've already spent, and will be very soon spending more quality time with family and friends throughout the next few months.  And then it will be a plan of more of the same.  Repeat.  Repeat.  Repeat.

I've learned that my quality of life is measured by these times with friends and family.  It's what makes surviving survivorship worth the rough days.  It can, and should, no longer be compared to 'who' or 'what' I was before.

My quality of life is equal to a simple phrase - Always, and in all ways, life is lived and loved, one day at a time.

Thursday, January 2, 2014

Cancer Survivor Calamities: Radiation Induced Neuropathy RIBP; RIPN; RFS; RIF

Wow!  There are so many acronyms relating to cancer therapies beginning with “R”.  This group of the four “Rs” is not a pleasant, happy group to be a part of.  No one ever actually asks to join this group.  It just happens to those of us who have received radiation therapy to save our lives from cancer.  This group of “Rs” doesn’t care how long ago you received radiation therapy.  It just shows up unexpectedly, like that one family member you dread.  And once you got it, it stays.  Hell, it even spreads itself around. 

The 4 “Rs” are:  RIBP (Radiation Induced Brachial Plexopathy); RIPN (Radiation Induced Peripheral Neuropathy); RFS (Radiation Fibrosis Syndrome); RIF (Radiation Induced Fibrosis)

No doubt there are more.

Most of you know I have all 4 of the “Rs” – progressing RIBP (Radiation Induced Brachial Plexopathy), RIPN (Radiation Induced Peripheral Neuropathy), RFS (Radiation Fibrosis Syndrome), RIF (Radiation Induced Fibrosis), and severe heart damage, as my most dominate cancer survivor calamites.

These casualties of cancer radiation therapies are far greater then I’ve imagined.  I have read about many others in various web journals, posts and blogs.  As we live longer and we have the power of the internet we are coming together, comparing symptoms, medical care, and creating friendships.  And as individuals, we can now come prepared with facts and information when we speak with our doctors.

RIBP/RIPN/RFS/RIF continue to be the gifts that keep giving.  And I know they are going to continue down the road of my life, leaving behind destruction, physical pain, misery, and a hefty dose of emotional injury.  RIBP, RIPN, RFS, and RIF are disorders that do not go away.  Once the nerves are damaged, they stay damaged, and they begin to starve the attached muscles.  This is not fixable.   There are meds to ease some of the pain and uncomfortableness.  But, there is nothing that reverses the damage done, nor the pain that’s associated with it.  Having any of these is tough….

My right hand and fingers, along with my forearm, are utterly useless.  My right bicep and upper arm are weak and painful, but still a bit stronger than the lower arm.  Using my right hand and fingers to do simple tasks are no longer an option.  Simple tasks such as: pushing with enough pressure on any button on a keyboard or screen; picking up any item, big or small; holding a pen and writing anything; signing my name; touching an e-tablet screen and getting a response; nail clipping; uncontrollable tremors: which are just to name a few.

I’m finding my left arm and hand is following suit and starting to fade away.  My left hand is showing signs of the tremors, nerve pain, numbness, and marked weakness that I experienced with my right side. 

My head, neck, shoulders have had severe loss of muscle.  My overall weakness is evident.  The vertebrae, shoulder blades, and ribs on my back are quite visibly pronounced due to the loss of muscle.  My neck, back and shoulders contorted.  I have the “dropped head” syndrome.  I literarily have many moments when I cannot hold my head up.  I am constantly rolling my head from front to back, trying to loosen up the muscles, and relieve the pain, in my neck.  I am able to get somewhat comfortable as long as I have a seat whereby I can lean my head against the back, even if it means I have to scrunch down in order to do it, or if it has an arm rest I can hold my head up with my hand.  Both of which could be taken for laziness or an uninterested posture, which is not the case.  My back and neck are all pulled to the right as a result of the progression of RFS, RIF, RIPN, and RIBP. Tremors are noticeably evident as it takes me minutes to one-finger-type a few lines of text, only to go back and fix many mistakes.  I’m dropping things, finding it harder to carry anything in either hand/arm, do laundry, type, use a pc mouse, and pick anything up, no matter how light. My hand/arm will tremor and my finger will inadvertently choose something on the tablet screen or keyboard that I didn’t want. 

Cymbalta, Gabapentin, and Nortripyline, are the mixture of drugs I’m currently taking for the pain associated with degrading and dying nerves.  These drugs only take some of the edge off of the pain.  They do not take the pain, tingling, and tremors away.  They allow me to function.  They allow me to get some sleep, or should I say, they allow me to go back to sleep after the many disruptions of pain through the night.

And speaking of the night…. There are dreams I have that are disturbing.  Dreams about my right hand.  Dreams that I’m trying to hold onto someone, or something, of great importance.  I don’t remember the things I’m trying to hold onto, but I feel that there is consequence in letting go.  In a panic I awaken with my right hand in a grasping sort of position, of course not actually holding anything.  It’s like my senses are heightened, heart beating rapid, and my breathing quick.  It happens several times a week.  You’d think I would remember what I’m supposed to hold onto with a hand that can no longer hold.  Maybe one night it’ll be solved.

I recently learned that radiation damage to my phrenic nerve has paralyzed my diaphragm on the right side.  It’s been painful.  But I never knew what it was.  Without the aide of my diaphragm, my right lung only partially functions.  Hence my shortness of breath.

It’s possible, but not yet confirmed, that I may have what’s called Baroreceptor Failure.  Baroreceptors are nerve sensors located in all blood vessels.  These nerve sensors control blood pressure levels and react automatically to the body’s physical movements.  In Baroreceptor Failure, the message to the nerve sensors is interrupted, causing these automatic reflexes to fail.  The sensors automatic reflexes assist overall cardiac function by aiding with the regulation of blood pressure.  The baroreceptors located in my carotid arteries may be damaged by the mantle radiation therapy I received in ‘83.  This is what could be causing my blood pressure to drop upon standing and walking, as opposed to the blood pressure’s normal automatic rising.  Could this be yet another “R”???  Maybe it will have the name “Radiation Induced Baroreceptor Failure”??

Anyone out there have Baroreceptor Failure and/or phrenic nerve issues as a result of radiation therapy?  Please leave a comment.  I would love to hear from you.

I’ve just recently learned that due to the potential nerve damage to my blood vessels (Baroreceptor Failure) and my paralyzed diaphragm, I no longer qualify as a heart transplant candidate, because a new heart will not help these things.  But you know what?  A new heart won’t fix my left knee issues either.  Nor will it fix the arthritis in my joints.  So I find this decision made by the transplant group a bit hard for me to digest.

As only Roseanna Roseannadana can say “If it’s not one thing, it’s another….”

I will need to have additional testing to confirm a diagnosis of Baroreceptor Failure.  If confirmed, there is medication to help control it, but there is nothing to fix it. 

This all fucking bites, to say least.

My brother once said to me “you can’t get cut a break”.  He’s right.  All of the cancer victims who have made it through heavy doses of the lifesaving toxic therapies will have some sort of late effect side effects, months, years, or decades later.  Many will have developed heart problems, such as cardiomyopathy.  Many may fall victim to nerve loss, pain, numbness, tingling in fingers, hands, toes, and feet, loss of muscle mass, body contortion.  Sadly, many may develop secondary cancers.  Or, they may have all of the above. 

Again, at the sake of repeating myself, this fucking bites.

So now I take time to network again with organizations, advocates, and the many friends I have made along the way.  Back into the advocating mode!  I love the friends and connections I’ve made.  And if I’ve helped one person out there know they are not alone in this wild, wild, whacky world of our cancer toxic therapies, long term side effects -  I would have accomplished my quest.  But of course that doesn’t mean I will stop!  It fuels a fire within! 

What a difference a year makes in regard to finding web information on RIBP, RIPN, RFS and RIF.  They have been recognized by multiple neurological hospitals, physiological clinics, and universities.  Hell, they’re even recognized by national and international levels.  But more and more of us are finding that our primary care docs don’t have a clue about it.  Even worse, some of our oncologists and onc radiologists still haven’t obtained this knowledge.  What the fuck!?! 

Personally, I, along with many other survivor advocates, know that we survivors are thrown into the wilderness once our cancer therapy ends.  The oncologists say all indications of your cancer appear to be gone – push us out the door with a good luck pat on the back – and instruct you to see your primary care doc for any future medical issues. I can honestly say that I felt, abandoned, lost and fearful. 
Through my web of networked connections, I’m finding that on a national level we are being recognized as a unique patient, with special medical needs.  And that is key my friends!  Once it can be governmentally identified it can be lobbied so that it is a requirement within insurance medical coverage. It would become its own specialty group of medical staff of MDs, PAs, RNs, etc., who would be trained to care for the cancer survivor.  Instead of that push-out-the-door-pat-on-the-back treatment received by the Oncology Office, you’d get a pat-on-the-back-now-we-are-handing-you-to-a-specialized-knowledgeable Cancer Survivor Physician!

But, for now it still boils down to the fact that we gotta look out for ourselves.  I’ve always said we must be our own best advocate.  Do the homework.  Gain the knowledge.  Go to the primary care doc prepared with knowledge, and lots of questions.  If your PC doc is reluctant to acknowledge your late effect side effect(s), then find one that will. Getting a physiological doc is another good source and who should be current with the damages of radiation.  I have a great PC doc, who is willing to obtain facts, and to educate herself with the knowledge needed to address my personal issues.

I was able to snag a few of the “R’s” website publications that may be helpful – most are related to Hodgkins Lymphoma, Head & Neck, and Breast Cancer victims.  Some of these publications are dated back to 2006 or earlier.  That doesn’t mean they are outdated.  The info regarding cancer therapy toxicity remains the same.  The awesome thing is that it is being recognized by Oncs and PC Docs who are keeping current on their patient care – and – that we as patients are better equipped by obtaining and sharing the knowledge!

I’d love to hear from anyone else out there who has had chemo or radiation therapies, that suffer from the late effect side effects of cancer treatments.  Please, please leave a comment.  It would be helpful for me, and for others who may have found this blog post.

RIBP-RIPN-RIF-RFS Resources  Abstract – Nov 2011  Dr Michael D. Stubblefield  Updated March 26, 2013 “Radiation-Induced Brachial Plexopathy”  
San Juan VA Medical Center Last Modified 12/27/12  “Radiation-Induced plexopathy (RIP) is a neurologic impairment of transient or permanent nature as a sequel to radiation therapy”   May 1, 1996 British  “It must be acknowledged that RIBP is essentially an incurable condition, as unrealistic expectations reduce the chances of producing useful improvements in quality of life”  Oct 9, 2008  Nerve transplantation via surgery  -  “Radiation-induced brachial plexopathy is an uncommon but devastating late complication seen in patients receiving radiation therapy to the chest wall and axilla. “  September 15, 2009   brachial neuropathy 22 years after radiation therapy for fibro sarcoma: a case report  March 1, 2012  “Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer”Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer

Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer

Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer

Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer