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June 13, 2009 / Steven Pousty

Time for the two week update – more fun with cancer and chemo

I am sad and tired. First ground rule to this post – do not write “keep it up” or “you gotta be positive” or any of that nonsense in my comments. I know all of that already and you telling me that either makes me feel inadequate or annoyed. So let’s save us all the trouble and skip those kind of comments.

It has been a little over 2 weeks since my chemo and I thought I would fill everyone in and write a little to perhaps alleviate some of my sadness.

I HATE PREDNISONE! There I said it. That has been the worst part of the actual treatment part of the chemo medicines. 5 days at 100 miligrams a day and then an abrupt stop really stinks. Saturday night I did not sleep and the other nights I slept no more than 5 hours a night. When I am awake it feels like being a field mouse on crank. You have a ton of energy and all of it is for naught since you can’t really focus on anything for more than 10 seconds at a time. I found myself feeling anxious even with an increase in happy pills. It was interesting to take the dose with breakfast and start to feel the rush come on and then feel it start to all wear off at about 10pm at night. The crash after stopping was pretty sucky as well. My legs were twitchy, I had terrible mood swings, my face started breaking out…

That being said – I feel incredibly lucky that this is what I have to deal with. I am complaining here but the background to it is that I feel incredibly fortunate. The eldest daughter and I went to a Team in Training event last Saturday – I am an honoree this season. When some of the honorees told their stories you couldn’t help but cry. I knew I was fortunate before but there were new depths of appreciation. I am not currently suffereing from heart failure due to the chemo, I am not being put in a medical coma because there would be no way for me to deal with the pain – it could be so much worse.

Back to our story… I felt generally good the first week – even went to a meeting at work in San Diego. This last week has been harder. I am not sure if it is coming off the prednisone or if it is the killing of my blood cells (an intended consequence of my chemo) but I feel drained. And it is not the kind of drained that is helped by a nap, though I have been doing that. It is more this lack of energy and being just plain wasted. I have been able to work and go about my day but it just feels harder.

A second body blow came when I started suffering from alopecia (a fun way to say hair loss). At first it started in my nether regions when I was showering. Now don’t all you porn studios call at once, I am a bit occupied now with my cancer killing and loving my family.  Then yesterday I noticed that if I pulled on my beard and head hairs they would just come out. I knew this was coming and I told really care about it from a looks perspective. I have always told people that I hate shaving and that I would undergo electrolysis if it would really alleviate the need to shave. But this is a very real physical manifestation of my chemo and the cancer. I have been used to having hair on my head. For a large part of my life barbers would comment on my how thick my hair was and I would call it a weed and tell them to use a mower. It has not been as thick of late with a bald spot on the back and my widow’s peak, which my children love tracing with their finger. Never the less it is hard to have this happen to my body. Again I am fortunate that I am neither young nor a woman where there is much more societal value on hair – my heart goes out to them. Still, it is hard.

Another physical manifestation this week was grating parmesean cheese for the kids to put on their pasta. I nicked my thumb and it bled, which nicks tend to do. The difference this time is that it bled just a bit more and for longer than I expected. The chemo I am taking basically stops your bone marrow from producing new blood cells for a while so I will start to dip in the number of platelets for a while. Unfortunately for me this means my Pro hockey as well as UFC career have to go on hold for a while since I am not allowed to engage in activities that can cause bruises and bleeding.

The other hard thing that happened today is that my children caught a cold. In a non-cancer house this is really no big deal and I like tending to my sick children. It has a very fatherly feel to being able to protect and heal your children. But since I am near my nadir, which is cancer speak for when my blood counts are low, I have to be very careful about getting sick. A fever over 100.5, sore throat, and a long list of other symptoms become an immeadiate call to the Dr. Today we, the cp pack, had to try to figure out how to make that work. I was feeling sick myself and so nervous about what was happening to me, but at the same time I had to someone tell the eldest and the artiste that I could not really be near them today and had to spend most of the day in my cave room. It made me feel bad to tell my kids not to kiss me or hold my hand. I know I had to do it but it still feels terrible.

Perhaps my nadir in blood cells is matching my mood.

On the good side, we had wonderful friends over for shabbat dinner last night, the nausea was not a big deal, I worked the last two weeks, my friends have been amazing (Dave B sent me kung fu hustle, one of the best movies ever; Naomi knit me an awesome hat; I got flowers from MJ, I have received a ton-o-emails, twitters, phone calls and other signs of love), my family has been loving and wonderful, I got an appt with the integrative oncology unit at the osher medical center, my tumors under my arm have definitely shrunk for now, and I am still waking up each morning!

This week I have my blood drawn on thurs. to check my blood counts and other various signs. I see my nurse practitioner to talk about how things are going. I think I am going discuss prednisone with her and then also some more about my slow metabolizing liver.

Time to turn it in for the night…

I need to share a little boy story tonight. So I am in bed feeling kinda sick, avoiding the girls with the colds, and generally feeling sad. The little boy comes in to share the joy of listening to the Shrek soundtrack playing on his Deigo CD player. He bounces on the bed for a while and then notices daddy is not feeling so well. So he stops listening and repeats a move I have done to him many times. He starts to rub between my eyes and down my nose with his little fingers. Such a sweet and gentle touch. I close my eyes and relax. Hooray for him and bring a soft moment to an otherwise relatively difficult day.

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12 Comments

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  1. Donna Favuzza Posta / Jun 14 2009 4:05 am

    Hey Steven –

    I keep reading your blog and you keep making me cry and laugh. Your story-telling is amazing. 2 things I picked up that we have in common (aside from where we grew up), I have Crohns disease (intestinal disorder). Diagnosed when I was 21. Had to go see a DR. in Manhattan who actually worked with Dr. Crohn at one point. (pretty impressive huh? I couldnt care less but all the referring dr’s where excited for me). the reason I was going there was cause I refused to take prednisone! No roids for me. Well anyway, I was given a script for over 100 mgs a day for about 6 months. But I unlike you was weaned off not stopped abruptly. But I totally sympathize with your lack of sleep, your field mouse on crank your lack of focus and for me…I ate like a bear. Due to the disease I widdled down to about 105 lbs, which was when I was fitted for a dress for which I would serve as maid of honor. 6 months later…no longer 105 lbs. My face was the actual size of the full moon and break outs??? yuck. Luckily I was able to loose the weight to fit in the dress so they didnt have to let it out. Oh and the alopecia…2 outta 3 of my kids have it. My oldest boy 9, and my daughter 5. My 2 year old however has the thickest head of curly hair. Been up and down the east coast looking for answers on that and pretty much all we ever get is a hmmmm not sure why, maybe you and your husband are related…Aint that nice? Well, a year and half ago I went to Brooklyn and found me the best Jewish wig maker I could and now my daughter had a beatiful head of hair when she wants one. Anyway, I hope Ive made you smile or maybe even laugh seeing as you were feeling sad. OH yeah the roids, for 6 months…imagine my mood swings…I was like a freakin werewolf…I cant believe my boyfriend at that time actually ended up being my husband…and cousin.(JK – thats according to the brilliant doctors who had no other answer to give on my kids heads)..Good Luck, I will continue to read as you fight your battle. One which I am sure you will win. When I think back to when I knew you, you were like a tightly wound up spring waiting to burst – you had sooo much energy. Im sure as much as chemo is draining that right now, you have a spare place somewhere in there with a ball of fire just waiting to explode. I wish you the best,

    Donna

    • Steven Citron-Pousty / Jun 14 2009 11:20 am

      Donna – thank you so much for your wonderful comments. Don’t you just love when Drs can’t say “I don’t know” and just leave it at that. What a jerk. My primary care doctor told me my tumor was just a fatty tumorbut there was something he couldn’t quite tell the texture of. Then he says well I should probably send you for a surgical consult but I don’t want to look foolish. To which I reply, between you and me I don’t care if you look foolish, I don’t want to die.

      That is so great that you found your daughter a great “sheitl” (yiddish for the wig). Have you thought about chinese medicine or some alternative therapy? I am pretty excited about going to the osher center. I am sure there has to be some good practitioners in the city. Western medicine doesn’t not have a complete understanding of how the body works. We do great for some things and terrible for others.
      Thanks for the great comment – it made me laugh. I had to share it with my wife.

  2. Fred Biebesheimer / Jun 14 2009 7:21 am

    What an update. Your comments ring home. I agree with the prednisone, the stuff is vile. And you can’t rally refuse it, cause the trials really suggest it is effect on NHL. I found that after the fourth day, I would gag if I smelled the stuff. I ended up talking mine with milk, it seemed to protect against the taste. Prednisone is the thing that still makes me sick to this day. After the second round, my heart would not stop racing; that was the symptom I could not stand the most, a freaking week with a racing heart! Eventually, my doctors began to prescribe an anti-anxiety med, this seemed to help a bit.

    When my wife ran her first TNT marathon for me I can’t believe how much I cried, I never new I was such a baby. Well, I guess you are normal. Oh, a cancer story from me. We had adopted a little mutt about two weeks before my diagnosis. She was “my dog.” While aloof, she would stick closer to me when I was feeling crappy. Unfortunately, when I felt like I was going to die, she would lay with her head near my face, and her breath would make me want to puke. As I began to feel better, she would gradually move toward the foot of the bed, and then to the edge of the room.

    In closing, yeah there are a bunch of people with it way worse, and it’s great your not dying, but don’t minimize how crappy you feel, the treatment is totally screwing with you.

    • Steven Citron-Pousty / Jun 14 2009 11:26 am

      Hey Fred – most of the NHL people I talk to hate the prednisone worst of all. I wish they could get something more targeted rather than something that basically throws your whole neuro-endocrine-hormonal system for a roller coaster ride. It’s like cluster bombing your body to try to get at one specific area. It certainly works but it does a whole bunch of collateral damage at the same time.

      Aren’t dogs great (except for their breath). They somehow have a way of knowing, far greater than people, when you feel sick and how their presence is important. Lydia, our standard poodle, slept by the side of my bed yesterday.
      Thanks for the great comment and I am dealing with the fatigue and symptoms one day at a time. They are real and so I need to manage them, but I also want to keep them in perspective – I have a tendency to mope and I don’t want to go down that path.

  3. Eric Bader / Jun 14 2009 12:21 pm

    Laughing and crying at the same time. What an incredible journey. Love you.

    Eric

  4. Patrick / Jun 14 2009 3:17 pm

    Steve;

    The most powerful act here is your scientific observation of the process. You are a Warrior! You are observing a battle! You are high on a hill, watching the ebb and flow. You are a Warrior! You are a natural; be there with it.

    Loved the boy story.

    Patrick

  5. Terry / Jun 16 2009 3:06 am

    Steve –

    I’ve been reading your posts and, despite the fact that I don’t know you at all, I’ve actually begun to feel some sort of odd bond with you and your family. What you’re going through sucks, plain and simple. I have thus far avoided the big ‘C’, but I have watched as two very dear friends were ravaged by it while simultaneously being ravaged by treatments that were only marginally less horrible than the condition itself. I know that what you’re going through sucks (with a capital ‘S’), and I know that nothing I can say will make it suck less. And I wouldn’t presume to blow sunshine up your butt by telling you it doesn’t suck.

    It’s nice to see that you’re not defining yourself by your condition, though. Sometimes that can be difficult to avoid, but is serves no good end for anyone. It makes my day to see that you continue to define yourself by your family, and that you’re aware of the fact that being a husband and a father is a source of strength rather than a drain of resources.

    Cheers,

    Terry

  6. AJ / Jun 22 2009 6:49 pm

    Hey Steve… I’m glad we got to talk a little the other day. It’s difficult to read some of the stuff you are going through since it reminds me of very similar experiences I’ve had with family members. Anyway, I hope you get that juicer soon. I’m really telling you that I’ve seen it dramatically improve the health of people on chemo and HIV drugs. I personally like anything with beets but you can get creative with concoctions like carrot/orange/ginger/apple or beet/celery/endive/carrot. You’ll really enjoy it.

  7. Naomi / Jun 23 2009 7:01 pm

    Don’t tell me I have to knit you a “Peter Heater” too… 😉

  8. TiMO / Jun 26 2009 11:47 pm

    I think the story goes you had to give up NHL and UFC for the Porn career…

    Well done Steve-O… get well and let’s get together soon. Tom

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