A Good Survival of Lymphoma – Having a Good Time Anyway

A Good Survival of Lymphoma - Having a Good Time Anyway

A Good Survival of Lymphoma - Having a Good Time Anyway

I couldn’t believe my oncologist was telling me I had to have my chemo treatment on my 60th birthday. I didn’t know what bothered me the most to tell the truth, having chemo or turning 60. I told my oncologist that this was mightily unfair, and in my usual manipulative ways, conveyed to her the logic of slicing a few days off here and there. However, she said to me, “Uma, you have a good chance of beating this and I’m not going to screw around with the dates.”

So there it was. I sat crying for at least 20 minutes, railing at the unfairness of it all when suddenly I thought, “My God, I’m really hurting myself by doing this. I’m getting all upset and probably destroying what immune system I have left.” So then I became defiant, and said to myself,”I’m going to have a good time anyway.” And I did. My friends gathered around me the night of my 60th, a special friend created a painting for me, and we had a jolly good time. Sometimes I think it was the first time I ever really understood what surrender was. It was a time when I really was aware of not having a choice but finding my choice when I let go.

As it turned out, my chemo nurses, two very funny and compassionate ladies, brought me a birthday cake. They were hysterical at the outfits I chose to wear to chemo. Since I was nearly balding, I wore a back ski cap which young gang members doff or au courant kidnappers wear, gray pajama pants decorated with little cats, a plaid new york yankees chicago bears hawaiian shirtworn because it was the only one that opened from the front for my port and bright azure blue cashmere socks given to me by a dear friend who also did my laundry. A few weeks later that outfit got me into trouble.

I was on my way to chemo, and it was an emotionally blustery day for me, angry and self-pitying that I had to drive myself. I didn’t make a full stop at a corner before turning on to the highway. Next thing I know I am hearing the siren of a policeman. So I pull over and hear, “Get out of the car with your hands up.” I thought that was pretty extreme for an illegal right turn. Eager to comply, I got out of the car with my hands up. The cutest cop stood there with his gun drawn and as soon as he saw me, he began to laugh. He said that my car was similar to one that had just held up a bank and combined with my black ski cap, I was an instant suspect. We both laughed and eager for a good time, as I always was, I asked him if he would like to escort me to the hospital, sirens blaring, etc. He demurred but since he was so cute, I considered asking him if he would like to frisk me, seeing that I hadn’t been frisked in a long time. But leaving well enough alone, I got into my car and laughed all the way to the chemo room, telling the nurses that story and forever being called a criminal by them from then on. I might add, their favorite criminal.

Interestingly, I had never been vain and thought I wouldn’t care if I lost my hair and in some ways, that was true, except when I saw myself without it. It wasn’t the hair so much as I looked so pitiful. Always having a weight problem, when I looked into the mirror I said to myself, I look like a fat concentration camp victim. And then the sadness wore in.

I remember one night very well, 3 am in the morning, looking at myself in the mirror, shaved head, blister on my lip from the chemo, terrible inflammation in my chest, writing to my spiritual teacher, saying, “Do you remember the story about the Tibetan monk, imprisoned by the Chinese for 20 years and when asked what the worst thing that happened to him, he said, “When they nailed my feet to the floor, I almost lost my temper.” And then I thought, “Screw that, I as a Jew, think that the worst thing is that I am about to lose my sense of humor.” But as I wrote about it to my teacher, I started to describe my brilliant and intuitive Indian born oncologist who in her high pitched voice could ask you to pass her a chapatti and with the same cheery detachment in her voice, tell you she was recommending that your pancreas and large intestines be removed by dinner. Of course, we all know what good-natured malice does. It eventually restores one’s good humor.

Before diagnosis is really the worst time, because you don’t know what to do. It’s a time of real powerlessness. In my case, it seemed I was throwing up on a whim at all times. I later found out it had nothing to do with the disease, but occurred when my stress was at an all time high, a time when I had not discovered the joys of ativan. But more likely from ingesting some very high-powered dark green Chinese herbs that an herbalist had sworn had made her very young and strong boyfriend survive his brain tumor. This of course fed into my desire to take all those peculiar and heavily touted immune stimulating items I would never have touched before, but which began to lure me to them with their siren calls. “Cancer runs from me. Take me; I will heal you.”

It is also the time of looking for that vegetable juicer you gave to your hippie niece. And buying that 25-pound bag of carrots and dark green veggies. In your state of hysteria, you find yourself asking the veggies and juicer for forgiveness for having ignored them. I can’t tell you how many people who upon discovering they have cancer, start to slug down gallons of carrot juice. What they don’t usually know is that carrots being as sweet as they are can contribute to your diabetes or hypoglycemia, not to mention their tendency to turn your skin orange, also contributing to the suspicion that you not only have cancer, but hepatitis. Pre-diagnosis time is also a time when you make bargains to forever eat wheat grass and be kind to people whom you don’t like.

My sister, God bless her, immediately made me an appointment with a macrobiotic counselor. He was a true healer, and what I mean by that he didn’t have a ready made shtick that he would impose on me, giving me guilt about the choice I made to take chemo. Since I had been a vegetarian for many about 30 years years, was a holistic practitioner and masseuse, I subscribed to a holistic way of life and naturally considered chemo at the outset to be my worst choice. But surprisingly enough, especially to me, when I heard my diagnosis, I immediately turned to my oncologist and said, “When can the chemo start?” Knowing my background (I had given her many massages), she was as surprised as I. I had been classified as Stage Two and instinctively felt that chemo was my best chance for survival. And I didn’t want to be sorry while I was drinking wheat grass and taking enemas that my cancer was progressing. This of course was a very personal choice. My macro guy concurred with me, and said very simply to me, “You know, Uma, if you lived by the seashore or high in the mountains, you might have a chance of curing yourself naturally; but you don’t and I think your decision to take chemo is a wise one.” Thank you, Lino, for your wisdom, because I am still here and kicking.

I also remembered two holistic style friends, one an herbalist and the other an acupuncturist who had literally kept their heads in the sand during the early stages and as the cancer progressed, the acupuncturist belatedly started chemo. My other friend, the herbalist, attempted to treat her breast cancer with some red paste from Georgia. known for removing tumors from animals, and absolutely refusing to consult a doctor. I remember her calling me the last days of her life looking for some kind of pain medication and my begging her to see a physician.

As you can see keeping a sense of humor was an absolute necessity especially around the beginning of your journey. I withstood some very hysterically funny and sometimes annoying comments. In an effort to survive it all, I created my Top Ten List of the Dumbest Things People Say When you Have a Diagnosis of Cancer. Here they are:

1. I’m sorry, Uma, that you have lymphoma. My boyfriend died of that last year.

2. Do you have the good kind or the bad kind?

3. Uma, I’d like you to try these treatments. They were very effective on this woman who died last year.

4. Not to worry, my dog had lymphoma and after three chemo treatments, she is just bouncing around.

5. What must your karma be to have that?

6. I think you are so brave to be doing chemotherapy. I myself would die before I did it.

7. I once had a lump in my breast, but I really didn’t want it, so it went away.

8. I have some vitamins I would like to sell you. We could both make a profit.

9 I have this lump on my head. Do you think it could be lumphoma?

10. They say that people who have a lot of anger get cancer. Do you feel that’s true in your case?

You know when some of your old antagonists are afraid you are going to die, because they have started sniffing around you, wondering if it was time to ask your forgiveness now or whether they should wait until you are on your deathbed. I myself never believe in deathbed forgiveness. I know that it seems wonderful, but I truly wonder whether it is true forgiveness when you are still smarting from the pain of your childhood. I know everybody is really thrilled at the open hearts expressed, but my cynicism thinks that it is a short lived reunion and you as an adult are still suffering the results of that unloved childhood. I have felt that true forgiveness comes when you yourself feel that you are no longer victimized and you heal yourself from within. It’s not like somebody saying, “Dad’s dying; time to forgive.” I don’t think forgiveness automatically kicks in.

You do find it difficult at this time to hold a grudge. A woman with whom I had a hard time when finding out I was ill came to me and said, “I hear you have cancer.” And when I looked at her face, I saw the struggle was off the table. I didn’t have the time or strength to hold onto my anger with her and neither did she. Strangely enough, when I recovered, we picked up where we had left off, but this time I made a serious and successful attempt to let go of my anger with her because as Carly Simon sang, “I didn’t have time for the pain.”

There were other benefits at having a potentially terminal disease.

1.People cut you a lot of slack; you don’t have to be so “on”all the time. When you are on chemo, you have that wonderful diagnosis of “chemo brain” It’s the time when your brain is not firing on all cylinders and there are many lapses between the utterance and the thought. When things get boring, or somebody is speaking overly long, you can just look blank and mutter “chemo brain” and all is forgiven.

2.People are more inclined to offer assistance to balding women, especially if you don’t wear your kerchief. That is a true and glaring statement of your physical health. Don’t be afraid to go without your kerchief. You are giving people a chance to express some kindness, which is good karma for them. It’s almost the closest to feeling like a monarch or at least a movie star.

3.If you are like me, never having had real time off from work, you get to sit around and watch Law and Order without feeling guilty, because the only thing that is expected of you is to survive. Nobody gives you a hard time because your only job now is to fight for your life and survive.

4.You are given an automatic, if invisible, cancer card. This entitles you to discounts at sales even if the sale is long over. I have experienced when people noticed my bald head, they would give me the sale price even if the sale were over.

5.You can go to the head of line in most lines with people smiling at you.

6. People take you out to dinner a lot. I was convinced that they had said, “This is a good time to take Uma out because she probably won’t be eating that much. ” What they didn’t know was that my tastes had changed and upleveled considerably. I only wanted to eat at the really nice restaurants. I had started to treat myself nicer and take better care of myself; I even bought new clothes. It had suddenly become very important to me to look good. I didn’t want people to say, “Poor Uma, she doesn’t look good.” I wanted to be flattered. I considered one of my survival tools to be people looking at me happily instead of pityingly,remembering a friend who had cancer for 25 years and made people happy because she always managed to look beautiful.

Lastly, if I was to say what was the really great benefit of cancer, I would say it gave me the chance to get more real, to drop a social mask we all wear. I didn’t have to put a face on what was happening. If somebody inquired of my health, when I felt ill, I said so, and when I felt well, I told the truth. I was later told that because I answered matter of factly rather than self-pityingly, people were more comfortable and natural around me. Nobody wants to be around self-pity, even if it’s deserved.

When a very close friend of mine learned of my diagnosis, I saw her immediately go into cheerleading mode. She said, “Uma, you’ll write a book; you’ll use this to its fullest and you’ll become famous, etc.” I looked at her quizzically and said, “Lily, I don’t know if I’m going to survive.” We just sat there and looked at each other. I couldn’t put a face on what was happening; I couldn’t pretend that I wasn’t looking at impending death. I just became me and in that place I remember along with the fear, a sense of relief.

As a therapist, I preferred working with people who had cancer because they seemed the most authentic. Cancer wipes a mask off and if you survive, you hopefully retain that same authenticity in your life. That is a great gift – to be just you without a mask. Most of us don’t know that we even wear ones; we become so anxious to please our family or our friends in subtle and not so subtle ways. But when you have a life threatening illness, it is time to do whatever you can to preserve that life. I didn’t know that life meant as much to me as when I became fearful of dying. And as my mask wore off, I felt my true self begin to emerge. There came a richness and fullness that I will always be grateful for.

write by Sherhonda Johnson