Thursday, April 22, 2010


A fellow stem cell transplant recipient told me that the high-dose chemo you receive before the transplant is the one that "really makes you stand up and pay attention." Well, it got my attention for sure ... and this isn't even the super killer stuff yet.

During my high school project graduation, I shimmied into one of those huge padded plastic sumo wrestler costumes to go at it with one of my friends in the ring. The ridiculous nude color sumo padding complete with a little blue sumo thong weighed a ton. To lift the little sumo arm or leg took so, so, so much effort and I remember when I was knocked down by the force of my opponents plastic belly, it took a solid five minutes to be able to muster the strength to get back up, flailing around like a beached whale. After getting on my feet I was so out of breath and my heart was beating a mile a minute. Never mind the sweaty skin-against-thick-plastic claustrophobia feelings. I write about this because this is exactly how I feel right now. Like I'm carrying around the weight of a sumo suit.

I have been weak and extremely lethargic the past few days. Wiping down a counter top or even carrying my laptop up the stairs are enough to force me to sit down and catch my breath afterward. Once I do sit down my heart will race and race from the "exertion." It's a different feeling than the tiredness and foggy headedness that I felt with the ICE. It is more reminiscent of the aches and fatigues I would get from the ABVD - but super sized. I got the strength to do some very gentle yoga out on the lawn today and now my muscles ache from it. It's as if every molecule in my body is so occupied with recovering from this chemo that it can't handle anything else but shuffling from place to place in the house and yard.

As tired as I am, sleep is hard to come by. I'm up at very strange hours and have those feelings of being just too fatigued to sleep. The Ativan helps with that and I find that it both calms the nausea and helps ease me to sleep.

I am eating, though what I eat is a bit strange. For example, today has been Kashi Autumn Wheat biscuits, two super thick yogurt and berry smoothies, and one spicy andouille chicken sausage. I'm just glad that I can keep food down and just listen to what my body asks for. I find it so odd that despite my normal pseudo-vegetarian diet, my body keeps craving the texture and greasiness of chicken sausage.

I can't drink water anymore. I drank so much in the few days following chemo that my body is almost rejecting it now. I can't stand the taste and smell of straight up H2O, but am able to add Crystal Light or drink Gatorade to make sure that I'm not getting dehydrated. My tongue feels like it is wrapped in a thin fuzzy blanket so a lot of things taste differently. My sense of smell is incredibly attune right now and that may have something to do with the taste changes as well. No one else can seem to smell it, but all I smell in our house is a dead, rotting animal in the wall (I heard it scratching for its life last week). It makes me so nauseous so I've been burning scented candles all day and relishing in those scents.

Earlier this week I was nauseous and tired, but I was able to get things accomplished and did not feel like the living dead as I do now. Everything is happening as it is supposed to. This is the expected feelings-of-crapiness timeline that I was told about. My reason for my weakness was reaffirmed yesterday when I went to see Dr. Dailey for blood work and learned that my white blood cells are down to 0.3, another new record. My immune system is nil and he expects that it will remain this way until at least through the weekend. So the neutropenic precautions are back in full force. Lots of Purell and I need to quarantine myself at home as I am at great risk. If I spike a neutropenic fever it's immediately to the hospital I go.

The hope is that by early next week the stem cells will have done their job to grow new cells and the Neulasta shot I received on Monday will also kick in with some white blood cell building action. I may need some blood transfusions in between, which is why I need to go into the clinic every other day to check my blood counts. My platelets and red blood cells are expected to drop rapidly as well. Luckily, I am able to do this locally with Dr. Dailey's practice rather than having to drive all the way to Yale.

For now I'm just trying to give my body what it needs and in a not so subtle way, right now it's telling me that it needs to rest.


  1. As awful as it sounds---and I know it is---it makes me happy to know that things are going as predicted---if you felt great right now--???? You will feel like a million bucks soon and be rid of this monster--for good---hang in there Love to all Bev xoxo

  2. Oh your analogy of how you feel to a sumo wrestler was so visual, so great! But I must ask, why did a Project Graduation event have you dressed as sumo wrestlers? And was the pseudo sumo wrestler photo you posted of you?
    Stay away from germs and let the healing proceed!!
    ~Nina Chapman

  3. This too shall pass, and new cells will grow! In the meantime, rest up and keep those scented candles burning. It isn't your imagination - I've gone through the dead animal in the walls and the smell is awful. But as awful things do, that too will pass. Hang in there... Judy xoxo

  4. Karin, It sounds like you're doing exactly what you need to do: listening to your body and acting accordingly.

    You have your map from the doctors about what to expect, so it's just a waiting game (albeit a painful one) until you go through the required steps and are restored to your excellent health, vitality, and high-energy self once again.

    It's just a matter of time. This is the universe giving you a much-needed break. You need this time. You are learning so much, and there is a reason that you have this time now where you can't do all the things you'd normally do. I am 1000% confident that you come through this, and when this illness is over and done with, you will see how everything went exactly as it needed to.

    Keep listening to yourself, don't worry for a *second* about what you think you "should" be doing. You're supposed to be doing exactly what you ARE doing -- resting and healing. You WILL come through this and what you're experiencing now will be a fuzzy memory one day soon.

    Whenever you need to, go back to your breath and just *be*.

    Love you, Lisa

  5. thinking of you Karin, I know that smell and these country houses attract them. Candles are the way to go and also essential oils may help. Got lavendar???