My Sentiments Exactly

Alex writes:  This is an amazingly worded article published in Vanity Fair by the author Christopher Hitchens.  He was recently diagnosed.  I highly recommend it.  Hat tip to Suzan Woodruff who sent it to me. 

Topic of Cancer

One fine June day, the author is launching his best-selling memoir, Hitch-22. The next, he’s throwing up backstage at The Daily Show, in a brief bout of denial, before entering the unfamiliar country—with its egalitarian spirit, martial metaphors, and hard bargains of people who have cancer. For the whole article click here. 

By Christopher Hitchens•

Photograph by John Huba

September 2010

I Can Walk! I Can Walk! Alex Marches Upon The Earth Again!

April 6, 2010

One month and a few days after my "limb sparing surgery"  the strength and coordination in my leg is good enough again to take steps unassisted.  I am not fast and not without weakness or pain but the healing is picking up speed and so are the steps.  The numbness is abating as is fear and anger.  Now a few more "insurance" rounds of chemotherapy and I will be done.  Done! Done! Done!

There is no going back to the old ways of cynical, self-denying thinking.  I strongly believe that this medical odyssey was about getting the message about this.  I never believed it was meant to kill or mame me.  If I can maintain these lessons than I think I will actually be done with this cancer for this lifetime and will have fulfilled this idea that "cancer patients are the lucky one's".  The trite assumptions that there are no guarantees in life and that we take our health for granted can no longer be overlooked. 

Miracles abound.  It is miraculous that my leg was not made dysfunctional by the tumor.  It is equally miraculous that I did not have the tumor type that invaded my bone.  It is a third miracle that the tumor did not metastasize.  A further miracle was that the tumor was removed without destroying my nerves or blood vessels and was 99% dead.  For all of these miracles I am so very very grateful.

I would like to say that my stalwart approach to this odyssey helped me; it did in many ways.  I also must acknowledge there were so many dark and difficult days when negativity and cynicism overtook me, when my spirit felt defeated, when hope was in very short supply and I just felt like crap.  I also must acknowledge that I did the best I could with the tools I had under some very trying circumstances.  The fear and anger was so high for months.  While I was in it nobody could say what the outcome was going to be.  My Dr's, to my chagrin, were always guarded and never hinted to my progress as they didn't know either.  This left me to twist in the wind for months, following their program and my beliefs both good and bad without knowledge of success or failure. 

It was like a one hour TV dramas like CSI except the outcome was not known.  At a certain point we all know a show like CSI has to resolve itself because that is how that show always goes in a  specific time frame.  In reality we don't know the outcomes of our life and my medical odyssey provided plenty of drama as to how all of it would end up.  

I am so glad and grateful the hardest parts appear to be behind me now. 

Many thanks to all who have supported me through all of this chaos.

Notes Along The Way

One thing I learned is that having cancer can be nearly as difficult for those around you as yourself.  At first I found this insulting.  Wasn't I the one going through all the really hard stuff of chemotherapy and radiation and surgery?!  Now I see that Caregivers have it very rough also.  At the Wellness Community, for example, there are support groups for Caregivers.  When I was in a wheelchair for four months I could not do much of anything except receive my treatments and take care of the basics.  My wife, Denise, in particular, shouldered a very heavy load. Aside from the emotional burden, she was working a lot. 

Many people, I found, do not know how to talk to me about my situation.  It is amazing how many people are cancer experts recommending alternative treatments, a certain type of water, bad-mouthing chemotherapy etc...  At some stages of the treatment (actually nearly all) I could not hear any of that.  Not that I wasn't interested in alternatives but I had chosen a course, had lined up my team of experts both conventional and integrative and I had to keep my focus on that.  The time was not right to take suggestions. 

In recognition that everyone is trying to help and how difficult it can be to talk to people who have cancer I am republishing this from The Nick and Friends Sarcoma Foundation about what to say to someone who has cancer.  I found these recommendations very good. 

Do’s & Don’ts

Do you ever wonder what you should say to someone who has cancer, or to the parent of a terminally ill child? Most of us want to say something that will help ease their pain and encourage them. Unfortunately, the “helpful” things we say are often very hurtful. Sometimes we do not know what to say, so we don’t say anything at all, which is also hurtful. Your friends do not want to be treated differently or like there is something wrong with them. Yes, they have a terminal illness, but, they are still human beings who want to be treated as such.

Since we encourage people to visit our sarcoma friends and leave messages, we decided that we should offer some sort of training. Several sarcoma families helped us compile this list of Do’s & Don’ts based on actual comments. As you will see, some comments are very uplifting and supportive, others not so much.  To read the rest click here.

The Dream

 It has been difficult to write about my experiences over the last month.  The run up to the surgery was very stressful not knowing how my leg would be injured in an effort to save my life and remove the tumor.  The post surgery hospital stay was full of  emotional low points.  When I should have been ecstatic I was deeply distraught.  The emotional and physical stress of the surgery and anasthesia stripped me of any defenses I had and laid me bare and vulnerable.  I cried a lot.  

I was a bit like an addict hitting bottom.  In terms of spiritual growth it was perhaps a good thing.  I would rather not have that kind of "enlightenment at gunpoint".   I am will be absorbing the lessons for a long time.  I do feel a much deeper sense of compassion towards myself and others.  There are many other feelings yet to be sorted. 

Then I awoke in the recovery room as if time had stopped.  June 30, 2010.   where was I?  What had happened?  Denise came in showing me a picture of what she later described looked like a lamb roast.  These were the pictures the surgeon had taken.  She was smiling and excited.   "This is what came out of you", She showed me a picture of a watermelon sized object but I was in such a haze I couldn't really register it.

Denise gave me a kiss and explained to me in my stupor that the surgery was successful.  She told me they got the tumor with clean margins.  It weighed about 15lbs. according to the surgeon.,  and that my nerves and blood vessels were not damaged.   I think I cried.  If I didn't then I certainly did over the next few days.  I didn't realize how emotionally shattering the whole experience had been.  But I couldn't keep the same level of denial that I had used to maintain before the surgery. 

The next thing I recall was the hospital room. I am pressing the button for the morphine pump.  1 beep meant I got some.  2 beeps meant I was pressing the button more frequently than 8 minutes and I didn't get any.   It was all hazy.

Over the next few days I would learn to move from the bed to a chair next to the bed.  Then I started using a walker and eventually crutches.  One morning I got a call from my Oncology nurse, Suzan.  she sounded very excited.  She explained to me that the tumor was 99% dead on the pathology report with clean margins.  This was as good an outcome I could have had.   I happily called my family to break the news.  Later that day the oncology nurse came to my room to bring me the pathology report.  "I am done with my cancer treatment right?"  I asked expecting agreement. 
"Well not exactly" she explained.  "Since you responded so well to the chemo.  Dr. Forscher is going to recommend three more rounds."  My heart sank.  Apparently it was not yet time to leave behind cancer patient consciousness just yet.  The hardest part was over.  My leg was intact I am cancer free and am aiming for a good recovery.

After 7 days I was discharged deemed to healthy to be moved to the acute rehab. unit.

Anger update and the upcoming surgery

I had this exchange with the woman who runs fightsarcoma.org.  Her husband died of a Ewings Sarcoma.

Alex writes:  Right now I can only listen to a person who has lost a loved one prematurely. It may be all I will ever be able to do or anyone can do.  It is nearly unspeakable.  But I do know from my experience to allow a voice for grief and anger is a very powerful healing tool.  

She responds:  Anger can cause many medical problems.

Alex responds:  Only if it is held in.  

(I have been done a lot of preparation to get through my own anger and fear about my upcoming surgery.  In particular I credit my hypnotherapist, Lynda Mallerstein, with helping me.  Notice I wrote my hypnotherapist and not hypnotherapy.  Most of what she did was not hypnosis although that part was great too.  It was the anger and fear release process work that made the hypnosis work. )

On Tuesday June 29, I will have a vena cava filter placed so as to prevent blood clots.  On June 30th, in the morning I will have the sarcoma removed from my leg.  

It is my feeling and will that I will have 3 very important outcomes from the surgery:

1. The tumor will be removed with clean margins.
2. My blood vessels, nerves and muscles will all be left intact.
3. I will be able to return to my life again cancer free and walking. 

Acupuncture Decoding an Ancient Therapy (From The Wall Street Journal)

Alex's note:  This is a good overview article with video and interactive graphics.

Acupuncture has long baffled medical experts and no wonder: It holds that an invisible life force called qi (pronounced chee) travels up and down the body in 14 meridians. Illness and pain are due to blockages and imbalances in qi. Inserting thin needles into the body at precise points can unblock the meridians, practitioners believe, and treat everything from arthritis and asthma to anxiety, acne and infertility.

As fanciful as that seems, acupuncture does have real effects on the human body, which scientists are documenting using high-tech tools. Neuroimaging studies show that it seems to calm areas of the brain that register pain and activate those involved in rest and recuperation. Doppler ultrasound shows that acupuncture increases blood flow in treated areas. Thermal imaging shows that it can make inflammation subside.

Sweat a "B" symptom

I sweat.  when I take NSAIDS.  I sweat when I take Oxycontin and Dialaudid.   I sweat a lot.   It never used to be this way.  All this started about 2 weeks before I was diagnosed.  Near daily I get a low-grade fever with severe chills.  I( assume they are good for me.  They are certianly not infectious.  They are one of my body's way of fighting the tremendous inflammation.   The chills are that kind when you have the flu and no matter what you do, you can't warm up until the NSAID kicks in.  That takes 45 minutes give or take.   It used to be that the cycling of chills and fever would take longer and the fever higher,  now I can generally defeat the chills in a 1/2 an hour with warm tea and Motrin.  I still wear the hoodie sweat shirt with the hood pulled down tight and a wool cap underneath when I get the chills.  
One of my regular times to take Motrin is around 2:45am.   This leads to sweating while sleeping.  Sweating in bed is a problem.  Imagine sleeping in wet tissue paper.  It feels something like that.  I cover my pillows with a bath towel and literally towel off in the middle of the night as needed.  In the beginning I used to change my shirt about 6 times per night but Now I am down to 2 or 3.  There is nothing worse than be awoken by sweat dripping in my eye in the middle of the night.  

Motrin (Ibuprofen) as an anti-inflammatory is good to take also for anti-cancer purposes.   When this medical odyessy is over, I would like to again sweat when I am exercising.

My New Bed

The other week an old friend of Denise's and a patient of mine came over to visit me.  She took one look at the bed I am sleeping on downstairs and wondered aloud how do I sleep in this bed.  I was defensive at first.  What was really wrong with my bed?  A lot.  When my son graduated from his crib to a bed we went to Ikea and bought him a bed.  He is now 13 1/2 so I figure the bed is over 10 years old.  The futon mattress after 10 years became "credit card" thin.  On top of that I became so used to the foot board that I  put a towel over the wood so I could rest my leg on it.  I am 6'6".  A standard twin is 6'3".  It is fabulously lush and firm at the same time.  I dreamed I was sleeping in a fancy hotel.
Because of the new bed I have nearly stopped watching TV because there is no TV in the room where the bed is. There is almost nothing to watch on TV anyway.  The couch in our living has been used for the past ten years as a trampoline and jungle gym by the kids and it is so worn out that it is like sitting in a bucket.   Next to go is the couch.

Thank you for the bed Michelle.

New Uses For The Iphone When Taking Narcotics

There is a great Iphone application.  It is the flashlight. This is how to use it.  I open up the email module of the iphone so it will stay lit and not go into sleep mode and there you have it -  wa la - light. 
 
In the past week I have been in severe pain as the cumulative effects of radiation show themselves. This has led to the necessity of taking narcotic pain relievers in the middle of the night.  I have always tried to tough out the pain.   Due to bad experiences with taking Vikodin earlier in my medical odyessy, I was so extremely cautious about using my Vikodin or Dilaudid prescription that I undermedicated myself.  I took pride in the fact that for the past couple of months I was only using Motrin. 
I got such severe pain that my leg started to swell in ways that Motrin was simply not going to cut down, not even close.   "Excruciating" was the word I used to describe the pain. So I needed my cell phone to open those child proof bottles in the middle of the night.
I also discovered that in pain management there are short-acting and time-released narcotics.  After meeting with the Pain Management people a few times I was able to get the dose right so I could take less pain medication and get more pain relief using higher doses of long-acting Oxycontin and using Dilaudid for breakthrough pain.  These drugs are like a god-send. They have made me functional again. The only unwanted side-effect thus far is constipation.

Getting through without antidepressants

Yesterday I had a talk with a friend about anti-depressants.  Do I need them?  I don't know but I don't want to get involved in another pill taking regimen.  Cancer is stressful and I am depressed in some ways but that is the nature of things.  I am in a situation that is not happy, fun or pleasant.  Most of the time I am scared.  What if...  they find the tumor has spread, or the radiation permanently damages me, or the surgery leaves me marred etc.... By crying I release the stuck emotion and allows me to come back to the present so I don't have to dwell on the anxiety.  Sometimes,  I cry when I call out to god in desperation "please stop my leg from hurting",  But most of the time I cry when I am triggered by the slightest provocation.  For example I cried yesterday when I had to go to the chemotherapy infusion area to get  a blood transfusion because it reminded me of when I was chemotherapy and how horrible I felt. I will have to go back to chemotherapy again. 

I read books I cry.  These are all cathartic sobs to release the stuck emotions.  It works.  I feel better after I cry.  I don't have to medicate that.  This may be hard for other people to see a grown man cry but that is how it is.  I am unapolegetic for that.  Besides they are more short bursts than long drawn out sobs. 

Lance Armstrong refers a few times in his book to the blessing of cancer.  What he meant is that in the depths of suffering and pain  personal growth changes you.  My emotional life, my constructs of who I am and what I thought I was doing in this life have been shattered by my struggles.   My gratitude and empathy for others sufferings has gone through the roof and my desire for life is now something that I don't take for granted.

I am motivated by wanting to live my life differently when this is over.  A few of the things I want to do is have a big party when I am cancer free.  I will invite lots of people.  I want to go to Bali or an exotic location in Thailand and after watching so much pastoral golf on TV I want to learn to play golf. 

In the meantime my day-to-day is tough, full of uncertainty and stress and that is just the way it is.

Thank you all again for your love and support