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Jelly, jelly so fine

Wednesday, February 9, 2011

Doctor Robert

I drove up to the Bay Area again yesterday, stopping off to stay with the greatest chef I know, Melissa Rossi and her boyfriend Gary in Berkeley. I was burnt out from the drive and we stayed home and had a simple supper.


They are hooked on the new Showtime series Shameless with William Macy and Joan Cusack and we watched it on demand. What a great freaking show. I am not a television guy and it's probably a good thing but I really recommend this frenetic series. I believe that there have been five shows since the series debut in early January.


It was hard because Melissa wanted to talk and whatever is going on with me has made it hard for me to communicate, recently. It's like something weird is happening inside my brain. And people are reacting very strangely to me. I said hello to two young chicanos in front of my store and one of them yelled and called me a puta. A little while later I repeated my entreaty with two older latina women and they acted like I wasn't even there. Another odd response happened this evening while checking into my hotel. I think I may need some quiet time by myself to get my mojo back. My circuits are obviously misfiring.


***


A friend came by the shop the other day to tell me that his wife had gone two years between mammograms and had been recently diagnosed with a very aggressive breast cancer. She is going to undergo a radical double mastectomy this week and then a particularly nasty chemo for a year. I wish her the very best. Women need to have regular mammograms. Catch these things as early as possible.


I started trying to relay any wisdom I had gleaned from fighting various cancers for the last 25 years. It is harder for my friend as his wife is gluten intolerant and the diet will be more difficult. But a few suggestions from me:


1. Eat a banana every day in the hospital. Hospital rooms seem to suck out all your potassium.
2. Don't be afraid to ask for crackers. Graham crackers are very nice.
3. Take charge of your recovery. Don't lay it on a doctor, no matter how wonderful he or she is. They say commitment is like bacon and eggs. The chicken (or doctor) has a certain level of commitment, but the pig is all in. You are the pig and it's your life. After the fifth recurrence of my bladder, kidney and ureter cancer, I found a new doctor, pissing off a very good friend. He got over it. It was the right thing to do.
4. Take as little pain medication as you possibly can. If you can tolerate it and can get over your moral qualms, smoke or ingest marijuana. I went through my last kidney removal on an aspirin and joints. My pain level never rose above two on a ten scale. Ditto my mitral valve heart surgery. When they put me on narcotics my pain level was always at eight or nine, my body craving more dilaudid and convincing me I was in pain. Pot helps you detach and view your predicament as more of a third party. Best thing around for nausea too.
5. Marinol is worthless. They pull everything fun out of pot and leave you with a stupid round pill that does nothing. Don't bother.
6. It is my experience that cancer patients all make up two lists during their travails: those that should have been there and never showed and one for those that came unannounced out of the blue and helped immensely. Let them help.
7. Kubler Ross talked about the five classic ways we react to grief - anger, denial,  bargaining, depression and acceptance. I reacted with anger. Lo and behold a Texas hospital did a study and found that angry people lived longer. It is okay to be pissed off.
8. When I first got sick in 1985, I got this huge lust for plums. They were bringing lugs in to the hospital room. Couldn't get enough of them. About a year later I was listening to a cancer doctor on the radio who said that they had found an acid under the skin of plums that helped fight cancer. Listen to your body. It knows what it needs!
9. After two or three years of not getting much better, I went to the biomedical library at UCSD and found every research study being done on my particular cancer everywhere in the world. I ended up seeing Dr. Sheldon Hendler in La Jolla and smuggling an unapproved drug up from Mexico, isoprinosine, as well as some other cutting edge stuff. I was getting lymphocyte enumeration panels from Specialty Labs and was able to chart my own t-cell recovery. I became part of a BCG research study. Do what ever you have to do, you have one life!
10. Tell the people you love that you love them. Don't be a day late.
11. If you need a long term i.v. try to get it in the arm instead of the hand. After a few days, hand placements can really hurt.
12. In my experience, the cancer itself never hurt. The stints hurt, the attrition of anesthesia and the whole hospital grind, sweaty sheets, becoming a human pinata, etc., but the cancer did not. But I was lucky enough to go through an immunotherapy program instead of chemo, there may be pain involved there.
13. If you do go through chemo, you may come back with curly hair.
14. Once you've had the visit from Mister C, you spend the rest of your life looking over your shoulder.
15. Cancer is obviously not an automatic death sentence. Cure rates have risen dramatically and many people who have faced the same cancers you may be facing are living long, rich, productive lives. Nevertheless some people may want to come around and start administering last rites. They tend to suck all of the oxygen out of the room. I kicked my own mother out of the hospital when I had my first surgery for indulging in this maudlin behavior. You may have to temporarily excise negative people from your life. On the flip side, on some occasions, certain asshole friends who you may have thought that you could count on, will now avoid you like the plague, as if the stuff was contagious. Let them go too.


I don't talk about my cancer experience much on the blog but it was a pivotal event of my life. I honestly can tell you that cancer was one of the greatest blessings that I have ever had. Because it taught me how to live for the moment. I never knew how long I had to live but I did know that I was going to live whatever life I had left to the fullest, on my terms. My friend John Favors told me that he loved me the other day and that he is choosing to surround himself with people who have faced death in their lives. An interesting perspective. I think that the prospect of facing death helped strengthen me. A few years ago I found out that I had less than a ten percent chance of making it three years after my initial diagnosis. Ha, I fooled them. But I did mention that if I knew that my chances were so shitty, I would have taken better care of myself.


I hope that all of you stay well. If anyone ever needs to talk about anything that they are going through physically privately with me, I am here for you. Once you have gotten the big C, you are part of my family. I want to help you in any way that I can.


Peace and Health.

13 comments:

Anonymous said...

We are all 4 airless minutes from death, my friend. If someone needs a brush with the Big D to start acting real, it's probably not going to turn out like A Christmas Carol. God bless us every one.

Blue Heron said...

While I appreciate your sentiment, in my experience cancer propels you into it's own special paradigm. Although I doubt there's anyone in this world whose life has not been affected by it, when you get the "C" word it's a whole new ball game. Hope you never have to experience it. I decided to write the post for those who will.

Bloodthirsty Liberal said...

Thanks for this post, Blu-Her. I've been busy tending to a sick friend lately, and the one way all of us in his support group can't reach him (yet) is in the realm of morale and spirit. He'll be okay (he knows it, but doesn't want to hear it); your experience may help us say things slightly less lame.

I do wonder, however, if your recent symptoms aren't a result of reading our blog at BTL. The power of our conservative argument is clearly at war with your calcified liberal tendencies. Give in, Robert, let your inner Milton Friedman loose. You'll be higher than you ever were on Acapulco Gold.

PS: I see now why you've defended pot so strongly, and will temper my scorn on my own site for its use.

Anonymous said...

Ok just one comment on the American version of Shameless - another ripoff of a superior British comedy that I started watching on IFC religiously many years ago...the British know how to throw a f*ckin-party. They make binge drinking seem like the norm.

grumpy said...

you've been your usual self the last few times i've seen you; i haven't sensed any sort of disconnect...feel better, though.

Anonymous said...

love the title of this post; one of my fave Beatles songs....g

Helen Killeen Bauch McHargue said...

I cried when I read this both for your suffering and for your victories. Thank you for being so generous with the advice for others with cancer. You are a true survivor.

I relate to having your "affect" off - mine is permanently out of kilter. Should we start a group?

Have a safe trip home.

Anonymous said...

great story. i often forget you have had all these medical problems.
i guess religion is not permitted.

Anonymous said...

You're a good man Robert. I am humbled and hope I never need the C-chat. Peace rc

Anonymous said...

i don't think all that eating at swanky restaurants is doing your health much good; you might wanna go vegan or something, eat tons of fruit and leafy green vegs; try blending raw spinach with chicken stock and garlic, it's delish and oh so nourishing...l'chaim!

Blue Heron said...

I don't want to talk about it.

Anonymous said...

I'm not gonna play my diseases are worse than yours. Cancer, heart disease, what's the diff? They both lead to the same hole in the ground. But I've never seen any 5K runs for heart disease, the biggest killer of them all. No obits with "he bravely fought his HD til the end" stuff.
Stop fishing for get wells. We are all born astride a grave.

Blue Heron said...

Who the hell is fishing for get wells? - all I said was that I felt like shit.