The stories that surround me

I have been feeling better as the toll radiation takes on me is not near what the chemotherapy was.  In my quiet moments I have my doubts but mostly I am carried (and moved) by the love and outpouring of support I receive on a daily basis.  I have a driver everyday, food delivered by school families 3x/week and steady stream of cards from relatives, patients and friends, people come to visit me frequently.  I honestly did not know I was this loved in this way.  I must have done something right!

I like stories of people that have triumphed over the odds.   Whether it is Lance Armstrong, a convicted murdered who won journalism awards in prison, or a movie about football (On Any Given Sunday).  I need these stories.  They are soul food for me now.  Everyone of them makes me cry.  I am now following this HBO miniseries about the Pacific war against the Japanese.  It too makes cry.  One of the characters, Eugene,  goes to war an innocent boy, becomes involved in near unspeakable horrors in battles and he overcomes his fears to perform with valor.  He becomes a man who will never be the same after what he has survived.  I relate to him.  So I cry a lot.  It helps me manage the fear of uncertainty. 

The plan thus far has not been evaluated for success so I am left with my own faith that all the treatments thus far are working or have worked and a bit of physical evidence.  The most important of which is my pain from the tumor is down significantly.  I take no pain medication other than Motrin (which I mainly take for fevers) and marijuana (which I mainly take for sleep).  Whatever pain I do have I think is from the blood clot in the effected leg, but that is not so bad thus far.  I take a Lovenox injection daily in my beely.  My thigh appears slightly smaller but overall most of the thigh is swollen and hard.  I don't know if this is good or bad.  I choose for it to be good.  My reasoning is that such a larger tumor as I had even if it were killed would not dissipate in a few weeks.  My surgeon has said that by the time he gets to the surgery the tumor will be dead or nearly dead.  I am hanging on to that. 

In the meantime I wait for my ride to radiation and try to get out of the wheelchair so my ass doesn't get sore.  

A Support Group of Two

I have been in radiation for a week now and a few days my right foot starts to swell.  So I go to see the Radiation Oncologist.  While waiting for the Doctor I start talking to his nurse.  He tells me that he has had a sarcoma in his intestines and lungs!.  So I am thinking this guy is Lance Armstrong like survivor, who has thus far beat the odds.  He said that occurred only 1 1/2 years ago!  I told him he looked great for having all that.  I was almost in tears.  A sarcoma success story with a case far worse than mine.  This is the motivational stuff I need to hear.  He is my new friend.  I got his phone number. 

The Radiation Oncologist recommended a doppler ultrasound (diagnostic imaging that shows blood circulation).  Sure enough I have a blood clot (deep vein thrombosis).  This can be potentially life-threatening but mine was caught before the clot heads upward towards the lungs (pulmonary embolism).  Probable cause:  the tumor pressing on the nerves combined with inactivity.  Just another something in the "this too shall pass" category.  Just like the rest of this whole odyessy.  So now I am receiving or giving myself 3 injections a day of Lovenox.  I am told the treatment for this is 6 months.  Seems like a lot of shots.

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. 

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.