Showing posts with label Alex's Cancer Journey. Show all posts
Showing posts with label Alex's Cancer Journey. Show all posts

Tuesday, August 09, 2011

Cancer Prevention

In mid June, 2011 I had a partial lobectomy which has been challenging to recover from.  Video assisted Thoracic surgery (VATS) is referred to as minimally invasive surgery. I call it "laparascopy for the lungs".  It was only minimally invasive on the outside and for my doctors.  On the inside; way more complicated.

I am left with a lingering cough which I am told will go away.  I am also told that as this surgery heals I will not feel the diminished lung capacity except at the high end of aerobic exercise.  That is not my main worry. 

Having had two major surgeries chemotherapy and radiation in a year changed me.  Frankly, I am much clearer emotionally about fear and death.  (Dying slowly is a problem dying quickly is not).  My quality of life remains excellent although I have been shy about exercising much and tend to rest more in the afternoon. 

The really exciting stuff is the anti-cancer plan that I have undertaken.  This is a grey area of mainstream medicine.  Taking a wait and see approach with frequent scans is not good enough for me. I would much rather avoid the life-saving heroics of event management (chemo. radiation, surgery).  Prevention is way more murky.  You only know for sure it is working when something doesn't happen.  However, it is not all shooting in the dark.  There are plenty of blood tests (not the standard tumor markers), that give ideas about the underlying cancer promoting terrain.  There is also the lens of genetic profiling of the tumor to see what the tumor is under or over expressing to promote its growth so that can be targeted.  This was part of my reasoning for doing surgery versus radiation for the lung nodules.  It is also the way herbs can collaborate with drugs to have a more broad cancer targeting strategy than uni-targeted pharmacologic agents.

Currently I am without any sign of disease (NED).  I also have a statistical 50-50 percentage risk of the disease returning.  This is a motivating factor to understand what real prevention can look look.  Currently I am on three drugs.  Celebrex for its effect on cancer, tetra thio molybdate to chelate copper and soon I will be on the MTOR inhibiting drug Rapamycin (Sirolimus) at half strength with grapefruit juice.  Grapefruit juice makes many drugs toxic because it slows down their processing through the CYP3A4 enzyme pathway.  However, if you lower the dose of the drug than this problem is avoided.  At the very least it is a way to save money by getting more "miles per gallon" of the drug. 

I am also taking a pile of targeted supplements to work on my overall vitality and the underlying terrain of how the cancer may grow.  This is part is about correcting what is out of balance and about optimizing aspects of cancer fighting immune function and fortfying adaptive reserves.  For a small part of what I am taking see my recent post on curcumin.  

It is worthy to note, there are  financial issues with prevention.  Chemo. radiation, surgery are pricey but covered by insurance.  Taking a few drugs at half strength, including one that is not patentable and is only purchased from a compounding pharmacy is not enough money to keep a hospital running or interest big pharma to generate the big research dollars.  Yet there are still plenty of effective anti-cancer strategies that fall out of that expensive comb.  They are just not so well known.  There is also a lot out there taking advantage of desperate people.  I have found the experts that really know this stuff and I am being treated and trained by them.  As you can imagine I have a passion and close personal interest in this field.  Donnie Yance founder writes about it this way:
Collaborative Oncology: An Introduction to the Eclectic Triphasic Medical System (ETMS), a Clinical Holistic Approach to Cancer Care Utilizing Botanical and Nutritional Medicine as Targeted Therapies.  This approach presents a multi-lens investigation, which examines the patient‟s constitutional energetics, endogenous and exogenous factors, and specific biomarkers from blood, pathology and tissue testing. This information is used to strategically design protocols to alter the individual‟s biological terrain, including gene behavior and expression, so that it is conducive to health and vitality while actively suppressing disease

He goes on to say:

The Eclectic Triphasic Medical System (ETMS) is an innovative system by which healthcare practitioners implement more effective, comprehensive treatment plans fortheir patients with chronic illness or cancer.  The beauty of the ETMS is that it provides a framework for supporting the patient using the fullest degree of botanical, nutritional, and biomedical principles. Without overlooking the human being‟s constitution and environmental influences—or their unique manifestation of disease—the ETMS aims for balance and harmony in executing optimal care. It was designed as a way to employ the oldest healing principles in conjunction with the most cutting-edge science in both assessment and treatment. This approach inherently relies upon the broadest assessment tools on behalf of patients‟“whole” health, and accordingly applies the most appropriate therapeutics.

Strategies I am employing include:  chelating copper.  This is an unpatentable anti-angiogenic strategy.  Another one is chelating stored iron.  Cancer cells sequester iron far more than normal cells.  Yet another is herbal strategies to prevent cancer from Chinese Medicine and support various aspects of the cancer fighting immune system.  One important approach to prevention is not just to fight cancer but to get healthier.  It does sound obvious.  The flashy and exciting part of prevention may be the genetic testing and then applying a combination of drugs and natural treatment strategies to the findings, but the bread and butter of  regulating digestion, improving blood sugar control, getting enough sleep, staying calm and modifying excesses in the diet to improve overall wellness are also important.


I am doing all that I can to ensure a long and healthy life.  In the meantime the road is clear If you know of people that need help with cancer prevention or side effects of treatment have them contact me. 

Tuesday, April 20, 2010

People Helping People

Both Denise and I wanted closer connections with people.  I didn't think I would have to get cancer to do it, but it is a wonderful side-benefit.   Many many thanks and blessings to people in the Brawerman community who support me who bring food on a regular basis, who come to visit and who give me rides.  All this time we have a chance to talk and bond.  Not bad.   Way better than saying "hello" in passing. 

The website Lotsahelpinghands.com has been graciously set up in my name and coordinated by Mindy Freedman and Jodie Schroeder to coordinate needs with those who want to help.

Thank you all again and again for your support.

Alex

Fear and Statistics

My Oncologist at Cedar's in our first meeting offered me to review my statistical chances based upon a public computer program that is part of the Sloane-Kettering website.  I blindly said yes and he put some numbers in based upon the tumor type and size and the program spit out some percentages.  I didn't really hear the rest of what he said.  I wished I never agreed to go over that with him.  Why?  because the statistics don't (never) speak to the individual.  They apply by definition to groups.  Statistics are important to determine whether a therapy works or not, and what therapy to apply but as an empowered individual statistics must not dictate beliefs. 

Lance Armstrong writes this in his book about Statistics:
What are my chances?  It was a question I would repeat over and over.  But it was irrelevant, wasn't it?  It  didn't matter, because the medical odds don't take into account the unfathomable.  There is no proper way to estimate somebody's chances, and we shouldn't try, because we can never be entirely right and it deprives people of hope.  Hope that is the only antidote to fear. 
I wanted to live, but whether I would or not was a mystery, and in the midst of confronting that fact, even at that moment, I was beginning to sense that to stare into the heart of such a  fearful mystery wasn't  a bad thing. To be afraid is  a priceless education.  once you have been that scared, you know more about your frailty than most people, and I think that changes a man.  I was brought low, and there was nothing to take refuge in but the philosophical:  this disease would force me to ask more of myself as a person than I ever had before and to seek out a different ethic.
I can certainly relate.  

Round 2 of Chemotherapy in the bag

God bless you Ifosfamide.   I do not wish you upon anyone.  (Unless of course you really need it.)  I didn't move a whole lot between April 8 and 15th.  Some of those days I ate in bed by resting my cheek on the side of the plate and shoveling food in.  At least I was eating!.    I had been carrying a pump with me delivering this drug to me 20 hours per day and then going to the hospital in the afternoon's for rehydration, steroids and the antioxidant Mesna, a bladder protectant.  I am glad that is behind me.  A patient of mine who has experienced many chemotherapies in a long bout with recurrent cancer tells me that Ifosfamide is the most difficult chemo.   I only know about this one, but what she said made me feel good.   I wonder what Adriamycin will be like?  More specifically I have not figured out my process to get ready for it.  Lance Armstrong's book carried me through this round.  I could think, "If Lance could do it so can I".  I am always looking for good motivation these days.  Does anyone have any suggestions?

Is it working?
This is a good question.  I hope so.  All I know is that I have swelling in the tumor area.  Nobody officially has told me if this is good or bad but I have concluded it is a good sign.  The tumor area on my first MRI showed  a mass of fluids, and blood and so it appears to me the Ifosfamide has gone to the area to do it's thing.  But there is another answer here - radiation.

Radiation:
My Dr's scheduled radiation to begin on the day chemotherapy ended.  Apparently there is  a radiosensitization effect by doing this.  I had to question myself if I could really do it.  Wouldn't I be exceptionally miserable following chemo. and the last thing I wanted to do was start on something, anything else.  Part of my answer was that Vikodin was going to help me.  Why should I suffer with so much terror and leg pain and cancer?  It's hard to fight all three at the same time.    I don't have a good history with Vikodin.  I have, since this medical oddyesy began, passed out two times from Vikodin.  Once the Paramedics were called.  My desire to escape had been greater than my tolerance for the drug.  I think I got the message now finally, Vikodin in anything but very small doses drops my blood pressure.  Much like alchol, one drink is fine.  more than that -  not good.  So this was the third time I took too much in an effort to escape.  I didn't pass out mostly because my wife had the good sense to check my blood pressure when I was balling uncrontrollably about how shitty I felt and load me with fluids.  I am now back to Motrin as my pain killer of choice.

The good part, radiation is not bad.  It is quick, thus far painless,  and most importantly it is having an effect on my pain level.  I may be walking sooner than later. 

Saturday, April 10, 2010

Alex's Unexpected Medical Journey

I was losing my hair anyway before I was diagnosed but not like this!  My wife tells me I look good without hair.  I am not so sure.  So now it is official here you see me as a cancer patient.   I am waiting for my 2nd round of chemo to start (4/8/2010).  My spirits are up and I am looking forward to chemotherapy start.  I was also nervous to be sure because I didn't know how I would react.   I am doing much better this round than the first.  The important point is that I chose to Win and this was not an easy to conclusion to come to.  I treat cancer patients but to find myself as a cancer patient was an entirely different thing.  So I will start with how I got my mind around all this chaos. 

First, I have a sarcoma in my leg. I haven't walked since the beginning of March as the tumor is pressing on my sciatic nerve. For weeks I was desperate angry and crying.  But I had to face my fear and mostly what I refer to as "my 1,000 generations of cynicism".  The cancer was still there, I still couldn't walk and I have a long and rough road ahead of me.  For this I have brought on many allies, including my rastafarian healer neighbor.   He taught me to work on mind and not on trying to control things that are out of my control.  I have also brought on a meditation teacher and a healer to reinforce this.  No matter how I thought about it there was still a mass in my leg.   I felt powerless, hopeless and desperate as if this thing could take me in some miserable way to a place where I would be living a diminished life!  But I realized, with help, that I so wanted to go to the negative.  I wanted to find cynicism (not hard) wallow in it and cry, beg god for my life and play this story where I promise god if you can just get me through this I will be good.  I was even thinking about becoming religious as a means out of this hell.  I envisioned myself as a sailor in a storm holding on to small boat waiting for the storm to pass. 

My group of healers reinforced to me that you cannot control many things in this situation but you can control how you think.  And with the help of some strategic acupuncture to open up my liver, which is to say unleash the part of my will and spirit that can see the bigger picture I was able to turn a corner and become clever and strategic about the big plan for winning.  I was no longer just clinging for dear life to that little boat.  Now I feel like I am able to keep the boat pointed into the waves and navigate.

The big plan goes like this:  Chemotherapy is working to kill the tumor and is going to work without serious side effects.  I will recover quickly from the the treatment.  There will be no metastasis.  This is my will.  There hasn't been any metastasis so far and I simply do not think it is in my cards (karma) for that to happen.   This mass is staying in my leg.   Right now I am on my second round of chemotherapy and am feeling pretty good relatively speaking.  The first round had to be cut short due to side effects.

Radiotherapy will start the day I finish this second round of chemotherapy and it will work in the same manner, without side effect and be effective as it is intelligently applied to the best of my skilled physicians ability.  I cannot control the treatment except in my own mind and that is where I work.  I have been told there is a good chance I will be back to walking with the radiotherapy so I am really looking forward to that.  I hope I can make the transition from chemotherapy to radiation without problems.  There will be another round of chemotherapy after radiation that will probably go like the current round I am on and then there will be the surgery that will preserve my mobility.  My excellent surgeon will remove the tumor with easy wide margins because the tumor after all this beating will be largely if not completely dead!.    For all this to go smoothly is the plan.  If it doesn't go as smoothly as described then the plans can change to assure success in a different ways.  No matter what success is assured as long as I can change the plans without going negative (that is the clever part).  So far getting control of my mind has been quite a relief.  It has allowed me and everyone around me to calm down.  That is huge.  It has also given me insight into keeping my own energy from getting bogged down  in others people fear around me or in their sympathy masquerading as fear.  I can only visit cynicism now it is no longer who I am. 

One of the more interesting things I have done is to stop wearing a watch.  Time is measured differently now as I actively wait for this round of chemo. to be finished or my pain to pass or for the blessing of walking again and I rest a lot.  I was so preoccupied with all that I have described above that I have not had time to read or write or do much of anything.  Yesterday for the first time I started to read, "Lance Armstrong: It Is Not About The Bike". He is an inspiration. 

I have been able for a few weeks now since I made this transition to maintain my mind and this vision of success.  I should also add that there will be a big party at the end of all this.  That is part of the vision to acknowledge the many that have helped me, loved me, cooked and cared for me.