my diagnosis of advanced cancer: how to help my kids

Parent Cafe
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<p>Yesterday was a “shearing day”. My hair started to fall out in clumps and I decided that finally, it’s time to be a sheep. My husband was ready to do this for days now, and, I suspect, was looking forward to it. I guess it’s his idea of adding some sparks of variety and excitement to a marriage to the same woman for 25 years. He has way too much predatory interest in this, and I get suspicious. But, between this and philandering with a blue eyed, blonde 21 year old, my lot in life isn’t too bad. </p>

<p>He had all the equipment since S2 likes his hair really short and has relied on my husband to do the deed when he wanted to keep it within an inch during the summer. So, I meekly submitted myself to his unsteady, amateurish barber hands. I couldn’t bear to watch it done, so I stipulated no mirror in front of me. I was sobbing as I heard the snip snip sound of what little hair that was gallantly hanging on my scalp being razored away. He kept saying, how beautiful and sexy I was and caressed my rapidly balding head in between sweeping motions of running the razor like a bulldozer. This would have been such a touching, hallmark moment. </p>

<p>Except… I blurted out </p>

<p>“There is a pervert for every deformity!”. </p>

<p>That just ruined the magic moment… This mouth of mine, I can’t help it. </p>

<p>Speaking of a perversity, I must confess this was not the first time I suspected him of something like this. Some 26 years ago, we were both Ph.D. students at the same department in the graduate school. I remember when we just started to get to know each other. One day, we were supposed to see a movie together. He called earlier and said he was playing softball and since my apartment was just around the corner, can he come and take a shower before we go out. I said yes. He came over and went straight to the bathroom. By the way, this was the first time he was in my apartment.</p>

<p>He was in the bathroom for over an hour. I heard the sound of water running for a few minutes. Then silence of a few minutes. This went on interminably. I was pacing back and force in the living room, convinced that this man has a problem. God knows what’s going on in there!!! I wondered “What amazing luck of mine! I thought I found a pretty decent guy, and he turned out to be pervert!!!”</p>

<p>Finally he came out. He said, well, your bathtub tiles were all covered with dirt and slime, and I cleaned it all out for you. I murmured something to the effect that I am near sighted and when I take a shower, I take my glasses off, so I did not notice… </p>

<p>He then went on to my kitchen. He must have noticed that all the light bulbs are on strike, and made a mental note of it, because next time he came to my apartment, somehow all the light bulbs were miraculously back at work. </p>

<p>People stay together for different reasons. When somebody asks me what the secret for our long, and apparently, well functioning marriage is, I say “we have matching pathologies”.</p>

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<p>Well, I would never have thought that the story of a cancer patient shaving her head could make me laugh but, somehow, you managed that. I relate to that “mouth” of yours and have ruined more than a few moments of my own. It is a curse and a blessing. You are, and I’m sure you know it, blessed with that husband of yours. Pervert or not.</p>

<p>I’m sorry about your hair. I’m picturing you as beautiful no matter what.</p>

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<p>sunriseeast, I think I love you.</p>

<ol>
<li>you make me laugh</li>
<li>that (deformity/pervert) sounds exactly like something I would say</li>
<li>I believe that humor is the great elixir</li>
<li>I hope I would be as brave if I were in your situation</li>
</ol>

<p>(Unfortunately, the love of my life cannot see, nor does he care about, dirt, scum, slime, etc. The upside is that he wouldn’t care if I left it there. The downside is that I can see it only to well!)</p>

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<p>sunrise - What a great husband you have! I guess “matching pathologies” works. Sorry about your hair. I also see you as a beautiful, strong woman, with a smile on your face, and laughter in your eyes.</p>

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<p>Sunriseeast – What a wonderful guy – you’re lucky to have each other. I hope you’ve found some comfy hats/scarves so you keep warm.</p>

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<p>I occasionally send status update email to friends: some folks are too scared to ask how I am doing, so I let them know that I am doing well.</p>

<p>This time, the status update contained the same content I just posted on this thread. My husband was copied to.</p>

<p>this is what he he said in his “reply to all” email.</p>

<hr>

<p>Usually I refrain from commenting about my wife’s writing. I came to realize a while back that for a couple to agree on what they experience together is futile. But on this occasion I will tell you something that only I saw: </p>

<p>She looks beautiful in her sheared head! </p>

<p>And I’m not saying this just to make her feel good. She looks quite younger, wise and serene. I recognize that some of it comes from the association that I have between a shaved head of an Asian and the Buddhist monks and nuns that we saw in the Far East But beyond that, her head is perfectly shaped and looks like the sculpture of Buddha, rectangular yet with very soft curves. She looks sooo profoundly wise, and it almost fell like the removal of the hair allowed me to look closer into her soul, to see her true self. Which, needless to say, I enjoyed. </p>

<p>I can go on forever describing it, but I’m thinking of organizing a petition, having people demand to see her picture. I doubt this will help, she may be shaved, but she is still strong headed, but hope springs eternal.</p>

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<p>^^</p>

<p>So sweet. I want a guy like that for my daughter.</p>

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<p>Sunrise, your H just made me cry. What a gift you are to one another.</p>

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<p>Sunrise,</p>

<p>Thank you so much for posting. </p>

<p>What mafool said.</p>

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<p>Sunrise… You are blessed to have such an amazing partner in life and he to have you. Your posts make me laugh and then leave a lump in my throat. I hope today is a good day for you. Thank you for sharing with us.</p>

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<p>SRE, I am SO going to remember this for the tough times in my life…I have a strong need to be in control of my life and of course, that isn’t always possible. </p>

<p>So, who knew you had a perfect head?! (I was truly dropped on my head as a young child, so I fear I would lack perfection.) When my D’s 29 year old dance teacher was going through chemo, the girls tried to talk her into getting a tatoo on her scalp. I’m sure that would be dangerous and hurt like the devil, but it’s sort of fun to think of what tatoo you’d get.</p>

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<p>scalp tatooing while on chemo is probably not a good idea: the danger of infection when the white blood count is tanking due to chemo. But, one could do it after chemo is over before the hair grows back… Hummmm, something to consider.</p>

<p>While we are all considering various juicy fantasies of “alternative” life style (wink, wink), I realized that I can now do a titillating strip tease show for my H by sloooooowwwwwwwwwwwly removing one layer of head gear after another. I can see him going OOOoooooooooooooo and Aaaaaaahhhhhhhhhhhh on this, a pervert that he is with a baldness fetish. How fortunate I am!!! With sagging T&A, now I have an entirely new avenue to explore and assert my womanhood.</p>

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<p>Sunriseeast - You are an amazing woman.</p>

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<p>How delicious that you have something to tease him about the rest of your lives…</p>

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<p>your husband is as much as a poet as you. I had my hair buzzed prior to it falling out. I had it done at the hairdresser’s in private. I was actually suprised that my head looked ok. when it grew back, it had a strange male pattern baldness that has improved. I have curly hair now. People say “you should keep it that way” as if I have a choice. It is supposed to go back to being straight. I am praying to keep some of the body.
My best friend since I was sixteen never called me once. I was terribly sick and I was hurt. I chose to ignore it, but I dont call her often now. I had the best friends helping me though and was so blessed. I would not have gotten through without my husband, sometimes he had to stay home with me as I was afraid, something would happen to me . I had never felt that way before or since.
Statistics are just to plan treatment. as well as staging. I am so glad you are responding. that is the important thing. doesnt matter what stage you are in if the cancer isnt sensative to the chemo.
You may want to look at the book Anticancer. It may speak to you. It had some things that just made sense to me.
So glad things are going well for you! Keep it up!
BTW my H and i just took a trip. not on purpose but the day we left happened to be exactly one year that I finished chemo last year. What a difference a year makes. Perhaps you can revisit your cruise soon(If you arent too busy withthe new job)</p>

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<p>downtoearth,</p>

<p>Very appropriate that you mention the Anti Cancer book. It’s one of the several books I ordered from Amazon a few days ago. I am already gearing up to manage remission and long term planning. </p>

<p>I am rationally optimistic that I will go into remission after the chemo round. I am already feeling so good these day, and all the odd abdominal sensations from before surgery are all gone less than four weeks from the first chemo infusion. The real game starts with remission since this cancer has such a high recurrence rate. I am doing a lot of research to see how best to manage my condition post chemo.</p>

<p>I am looking forward to next winter - winter is the best time for the family trip. My two kids will have entirely different summer schedules (one of them with a quarter based academic calendar and the other with a semester schedule with early starting fall semester), and if they add internships and what not, their calendar has no overlapping down time. We hope to make the same trip we had to cancel. This time, though, we will get travel insurance. You never know…</p>

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<p>A comment on travel insurance–sadly and infuriatingly, it often doesn’t cover pre-existing conditions. Sometimes if you buy it with your tickets you can get coverage that does cover pre-existing, but more often not. We’ve learned to look for hotels that have generous cancellation policies and several times we’ve just eaten the airfares. Another alternative is to book easily cancellable vacations (lots of hotels let you cancel two days in advance) and then hope to book the other stuff on last minute cancellations; that’s worked for us as well.</p>

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<p>Anti cancer is about improving your bodies’ terrain, making cancer unwelcome, or at least uninhabitable for it.
Many things with cancer, insurance, and donating blood.
so glad you are thriving.</p>

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<p>Another chemo day on my own. I actually find this solo experience very peaceful and enjoyable. In that oncology wing, I am NORMAL. Everybody knows why I am there, and I don’t need to explain anything. I don’t need to reassure anybody. I don’t need to feel like I am letting down anyone with my situation. </p>

<p>Letting down people I love… This is my greatest fear, that, I may take those whom I love and who love me to dark places down in the abyss. 99% of my upbeat demeanor and relentless optimism is real and genuine, and I believe it’s based on reason, not delusion. Yet, there is this 1% of it - that reflects my desire to lift those around me, not take them down. </p>

<p>A desire not to be the millstone around their neck. </p>

<p>A desire not to be the dark cloud hanging over everybody’s head. </p>

<p>A desire not to strip the veneer of normalcy of their life.</p>

<p>And, more than anything else… A desire not remind them of the burial ground of life’s thwarted ambition and curtailed aspirations. </p>

<p>I am starting to have visitors who come to comfort me and leave uplifted and callers who were terrified of my condition and hang up inspired, and possibly, with an unarticulated sense of comparative good fortune and well being. </p>

<p>I would like to believe that I am giving each of them a gift of a pearl. An oyster, in an effort to minimize the irritation caused by a grain of sand inserted into the inner soft flesh, produces nacre to wrap this sand with. That iridescent elegance of a pearl reflects years’ worth of such an effort. </p>

<p>I need to create something wonderful of this disease that gives, on the book, less than 10% for five year survival. It’s important for me to find some beauty in this equation. I want to create a pearl. I HAVE to create the most beautiful pearl that will light up the whole room and envelope everybody in it with a soft soothing ambient light. It’s not vanity. It’s a survival instinct. I need to know that I created something wonderful with what I got. It’s the only way I know I can make sense out of it all. And, that “knowing” is what I need to survive. </p>

<p>Those who were given a gift of pearl from me ---- when they go home, they don’t need to know how it was created. I would like to imagine their faces light up with a smile while they hold the pearl up in the mirror. </p>

<p>The chemo room in the oncology center is my little sanctuary. It’s a place of much appreciated down time. The silent IV drip for hours - I am cherishing that monotony. With the curtain drawn, I can let it all out without having to worry about leaving an invisible trace of variegated emotions imprinted on the wall of the house that I share with my family.</p>

<p>I have a friend who insisted on accompanying me to be my companion, and signed up for the next chemo. I shall have her with me next time. But that will be the last companion. I am rather possessive of my secret spa. Even an oyster deserves a secret hideout.</p>

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<p>sunrise - I am already carrying the pearls you have given me on this thread. Be assured that your words are touching my life. As I was reading your post this morning I thought of you sitting in your “secret spa” wearing a pearl necklace. If you don’t have one it could be a wonderful symbolic gift to yourself.</p>