Wednesday, May 27, 2009

Celling Out

Maybe it's just one of my weird neuroses, but I'd often get sunburnt on my scalp, or in the side part of my hair or along the front of my hairline where I didn't put the sunscreen high enough. When it would start to peel I couldn't help but scratch and rub it and watch the dead skin cells flake off like snow tumbling before my eyes. I had a similar experience today, but this time it wasn't burnt epidermis, but my hair itself. 

Since I've started working from home my personal grooming has taken a bit of a dive. With no one to impress but the mailman, I've been wearing my hair in an effortless knot on top of my head. But this morning I was feeling great and I had an appointment for a blood level check at the cancer center. So I decided that I would get all dolled up, actually blow dry and straighten my hair and wear pants that don't have an elastic waist. My goal was for the cancer center staff to not recognize me I looked so good compared to the sweat pant-wearing, makeupless wreck that rolled in last week. 

As I started to do my hair, I realized that all that time it was tied in a floppy pony tail it was slowly becoming detached. I ran my fingers through my hair in front of the bathroom mirror and they would come away wrapped with fistfuls of hair strands. I'd run them through again --- more hair wrapping around my fingers, getting caught in my wedding rings. It was disgusting, but just like picking at a sunburnt scalp, I couldn't stop. I continued to finger comb my hair until the fistfuls subsided to scattered strands. I knew that my hair would likely fall out as a result of the cell-killing chemo, but I don't think anything can fully prepare you for it. The worst part? Two days before my ER visit and the beginning of this adventure I had just gotten a much overdue full highlight and haircut. $130 (before tip, eek) down the drain. Now my beautifully high- and low-lighted hair was escaping my scalp strand by strand. I wonder if I can get a refund? I took this picture today for memory's sake if in case tomorrow I wake up and it's all on my pillow. 

It started with the loss of my nose hair, which I have no objection to. Last week not only did my nose hair disappear but with it went all of the nasal membranes in bloody, tissuey chunks. Now the inside of my nose is like a squeaky clean and smooth cavern. And it seems that my head is on the same path. It's almost like I can feel my scalp releasing the dead hairs. My scalp feels super tingly like I doused it in a deep conditioning foam or slathered it in Nair hair remover. The more it burns and tingles, the more comes out with each finger pass through. I just want to end the itchy, tingly scalp sensations and the site of the hair balls. Gag. 

Despite this thinning-like-a-balding-man experience, I did receive very good news today. My bone marrow biopsy results were negative. That means the Hodgkin's cells have not creeped into my bone marrow!!!! (exclamation points justified today). This is great news. Dr. Dailey is still keeping me at a Stage 4b Hodgkin's Lymphoma patient, but we rejoiced together in the fact that it's much better to be Stage 4b minus bone marrow involvement. 

Not good news, but not unexpected news, my white blood cell count took a big dip. We track my blood activity now like some people track the New York Stock Exchange. I've actually started a blood cell portfolio. One week ago my White Blood Cell Count was 10.0, today it is 1.8 (normal is 4.1-10.9); my Granulocytes were 8.8 one week ago; today, barely existent at 0.3 (normal 2.0-7.8). If I was scheduled for a chemo infusion today they would not be able to treat me as my body would not be strong enough to handle the drugs. 

Now I understand why Dr. Dailey did not want me working in the hospital setting ... my body is inherently defenseless at this point. In steps Neupogen, white cell booster shots that will get me back to fighting strength. I got one shot in the arm today and have to go back in for two more doses tomorrow and Friday. Like Barry Bonds preparing for a big game, I'm taking in injections to pump up my body for next week's chemo attack. I'll take the shots and bathe myself in Purell until Friday's finger prick when hopefully my body is back in the disease fighting game. Ka Pow! 


  1. You look beautiful. I'm so glad to hear about your strong bones, more good news will come.

  2. glad to hear there was some good news, karin! keep up your fighting spirit! hope to see you soon :) -ryan

  3. Hey, Karin..........

    There is more good news to come...THEN the great news will come...........and then is the real, fantastic kicker news that is fabulous and will be is only a matter of getting from this point to the last one...and is done and over and you'll have to pull out your stretchy things for your ponytail again, contend with renewed and MORE than you can ever believe nose hair which will be uglier than you EVER EVER dreamed you would have...then you will get a cold from time to time and your blood count will back to normal and your strength will be in hyper mode and Mr. Hodgin's ass will be out the door!!

    You are Beautiful !