Wednesday, January 11, 2012

At Least We're Breathing

Yesterday we got to see a beautiful little five-year-old girl named Maddie ring the bell to signal the completion of her radiation treatments. While Maddie and Mal were getting their radiation treatments simultaneously, we exchanged cancer stories with her parents. Maddie has a different cancer than Mal; one that is more aggressive and had spread to more of her body. It left her brain and invaded her sinuses. She's already been through surgeries as well as six-plus weeks of chemotherapy and radiation. We congratulated her parents on the completion of radiation, and they thanked us before stunning us by telling us that Maddie now has 37 more weeks of chemotherapy. Nine more months of pain. "At least she is still at home," Maddie's parents told us. "She sleeps a lot, but she can still be with her family."

Mal is now four treatments into her radiation, which will be 33 treatments in all. I guess I missed my chance to officially say that "we are the 9.09%," when three treatments were complete. All hokey Occupy Fractions jokes aside, Mal has held up fairly well so far. She has been a bit shaky waking up from her anesthesia naps after her treatments, but bounces back very well throughout the day. By noon she has been essentially normal, although for the last two days she did take extended naps. We have just started to notice fatigue outside of nap time, and she is still a week or so out from any expected hair loss. The scar where the tumor was removed has begun changing color from a dark purple to red, and we are not sure that is normal, but the doctors did warn us that there would likely be some skin burns near the site of the radiation treatment. Probably the worst part of the week for Mal has been a cough she has developed. She is getting a cold, and the frequent anesthesia and radiation are exacerbating it. Last night she woke up coughing so hard that she threw up in her bed.

Mal has also become accustomed to having her PICC line, and resumed normal use of her right arm. The twice daily heparin flushes to keep the end of the IV from clotting have gone from traumatic to annoyance for Mal, and as we approach the one week mark since her surgery to implant the PICC, we are hoping that eventually the practice becomes routine. Baths are still a bit difficult, but also seem to be getting better.

As well as Malorie is doing, Rachel and I are still struggling to find the perspective that Maddie's parents held. Sometimes we are happy, but other times it is more difficult to remain upbeat. Molehills seem to turn into mountains regularly these days. Where I used to be a pretty even keeled person, able to keep a cool demeanor and calm disposition during stressful times, now my moods seem to swing erratically through extremes. Joy one moment, anger the next. For every moment I spend with the kids, happily watching them play, there is also a moment of darkness, when I am frightened of the path to come. At times I worry more than I should, and fight to remind myself of the great blessings we have already been given.

So tonight I want to focus on "At Least," the statement that always seems to be a prelude to something we have going for us instead of the negative aspects of the situation. At least Mal's cancer seems to be controlled. Victory is hard to measure in this war, but we have won all the key battles so far. At least we have each other. Our family is drawing closer by the day, and this episode has redefined our relationships with friends, family and God. At least my job situation is stable. It is stressful to worry about pulling my weight at a time like this, but my coworkers have really done a lot to relieve that stress by being understanding and thoughtful. At least we're not hungry. We may be tired, but we're well fed, warm, safe and secure at night.

Things are probably going to get worse before they get better. And I know that I will continue to struggle to find perspective at the times I am feeling low. But thoughts of Maddie, and her family rallying around her in her moment of conquest over radiation all while knowing their difficult road ahead will help to remind me to keep "at least" on the tip of my tongue. We don't know how Maddie's battle with cancer will turn out... Mal's either for that matter. But at least we made it this far. At least we get to see those two courageous girls live to inspire us tomorrow.


  1. “To conquer frustration, one must remain intensely focused on the outcome, not the obstacles.”
    ― T.F. Hodge,

    The way I remove the darkness, is to listen to some of my favorite songs. I turn the radio or I-Pod way up and dance. It always seems to help even when I don't dance. You should try it. Most songs are an average of 3 minutes; I would rather take 3 minutes to improve my mood then waste 30 minutes dwelling in it.

  2. A dmirable
    T enacious
    L audable
    E fficaciousness
    A unt Carol Loves You
    S acrificial
    T ogether

    AT LEAST, you are all of those, and together you're sharing with the 4 of you, together, all that your family is and needs. And with the rest of your family and friends who are there with you every step of the way in whatever ways are needed, whatever, wherever, whenever!

  3. So many details in this tore at my heart. What a road you are on. Your perspective is incredible. Strength and comfort to all of you.

  4. It is a complete roller coaster ride- and you and Rachel are doing a wonderful job with it all- even though at times it may not feel like it. We continue to keep you in our thoughts and prayers.