Friday, January 21, 2011
Hair remaining: 10 percent – with 99 pct of the remaining hair all residing in two dwindling patches on the back of my head. Highlights of the bald life: You get more minutes to enjoy a warm shower when there is no hair to shampoo or shave. Add a few more minutes under the hot spigot since you don’t have to use the hairdryer either. Awwww.
Eyelash/Eyebrow status: Still there though the eyelashes are getting pretty thin. Hoping to hold on to the eyebrows.
Other weird chemo side effects: My nails have started changing colors – from fleshy pink to a nearly white color with a purplish stripe through them. My thumbs look like they are about to grow a second purple stripe. I can’t decide what color to call them. Cancer White, Poison, Halloween Couture. Maybe on top of the eyeliner I have re-introduced myself to, I will start painting my nails on a regular basis for the first time in my life.
Baby: Growing fine and hitting the 50th percentile, according to the last ultrasound in early January. My high risk specialty group assures me they could induce a birth six weeks early with no long term problems, if needed for me to continue the next wave of more baby toxic cancer treatments that we postponed.
Arm Update: I regained nearly full motion in my arm around mid-December, a little more than two months after the surgery. This flexibility is very important for mother tasks like: picking up dropped blankets in the back seat of the car, catching kids running from timeout (Henry), and serving snacks to the nether regions of the car (minivans are great for space but require much more stretching for snack passing). Supposedly I’m not supposed to lift anything over 15 pounds for the rest of my life with that arm. Hmmm. We’ll see.
Blood Counts: I’ve been doing pretty well with white blood cell counts. They’ve actually gone up some, despite not getting the shot that is supposed to boast your immune system. On the other hand, my red blood cell percentages have been dropping, which might explain why I get out of breath eating a bowl of soup sometimes or sometimes feel light-headed when standing up for too long. Chemo is so awesome. My doctors like to say it is the pregnancy. I do get out of breath when pregnant – but never this much. Seriously.
Blog entries I should have made more timely:
January 20, 2011
The good news: I’m feeling much better today and my energy lasted most of the day. I’m not about to take my kids to the zoo alone or any sprawling, unenclosed space where kids who didn’t want to listen could keep running and running and running (Henry). But I put them in the car and drove them three blocks to the enclosed community center for tot time where they can run but only so far while I could sit. Thank you Tot Time. Community Center - Oh please, please buy some more gymnastic-padded climbing obstacles with that HOA money for new toys.
The bad news: It took me nearly the full three-week chemo schedule to get to this energy point level after my last dose (the third dose). This recovery time does not bode well for round 4 tomorrow. Chemo's side effects tend to accumulate with each dose, I've heard. But at least after tomorrow’s chemo dose, I’ll be half-way done with poison-based medicines - I mean chemo.
I was looking at my beautiful photo album (of our pictures the day before the surgery that some people gave me) and remembering all the things I used to do with my kids. (Thank you to everyone who gave me that. Reading all the kind notes brought tears to my eyes. It was so much more beautiful than what I would have put together myself – whenever that would have happened. There was a video of our family in the book too). I really enjoy the interviews on the video where Naomi lists all the things she does with me and to help me. She has probably used a tree’s worth of paper since the diagnosis for making me pictures and cards. Henry says on the tape that he likes “playing with Mama.” So after looking at the album and watching the tape, I really tried to push myself to do some of the old routines. We went to the Jump Zone Wednesday night with Steve. Burn that energy, Bobbleheads. Burn it.
I did some Big Girl School with Naomi earlier in the week where we sit down and work on writing letters, sounding out a few words, coloring and playing some word games.
I realized Henry knew none of his alphabet letters and sounds compared to Naomi at his age. So I tried to get him to sit down to talk about a workbook page.
Interest level: Zero.
I was about to give up but kept remembering a conversation with my friend Megan. We talked once about some educator who had explained to her how boys learn differently from girls – that their minds tend to get more engaged when active. I kept thinking about that and got an idea. I was really proud of myself. Henry is obsessed with pirates lately. So I taped up the letters of his name – one each on a piece of paper. Then I had him attack the letters with his sword as part of a pirate mission. This exercise still only lasted about five minutes. We did it the next day with about the same success. I was thinking it was a quasi-failure. But when I asked him to name the letters he learned a few days later, he said, as if pointing to signs hanging in the air, “H-E-N-R-Y – that spells me,” pointing to himself.
Of course most of these few good hours in the day were followed by lower energy where I didn’t engage the kids as much. When that happens, my kids tend to play okay for a short time. But eventually, they turn on each other, like wild animals vying over a half-eaten corn dog covered in ants. Naomi hyperventilates about Henry not following a rule, using her toys or starts teasing him slyly. Henry starts screaming at the slightest provocation at a pitch that kills brain cells.
Ay yey, yey. Maybe next week we’ll work on conflict resolution skills instead of alphabet letters.
Saturday, January 1, 2011
The following excerpt is from an short address I was asked to give at a women's meeting for my church in early December on the theme of peace & joy. I know people who read this blog have different faiths and beliefs. So I hesitated in posting this message. But in the end, obviously, I'm posting it. I considered much of it my way of saying "thank-you" through the lens of my faith.
When I was asked to speak about peace and joy tonight, my first reaction was, “Peace and joy??? This is not the season of peace and joy for me. It is the season of dread, especially as I wait for my hair to start falling out.” About two nights ago, it really sank in… that I would lose my hair and lose it soon due to my cancer treatment. For some that know me, that might sound odd. I’ve joked about it for months. I bought a wig, had the wig cut. I cut my hair short to make its departure less disturbing. I borrowed clippers to have on hand to shave my head when it all starts falling out. But that’s just the way I am. Change is not real until it’s actually about to happen or happening.
But in other ways, this period of my life makes it easy to talk about tonight’s topic. In the midst of my health problems, I also have felt great peace and joy.
There is a scripture in my church that says when you are helping your fellow beings, you are serving your God. In our struggles, I have often thought about when the baby Jesus was born. People were so excited for this birth. Scriptures prophesied of it for years. Angels heralded it. Shepherds travelled from their fields to see him. Wise men searched the sky for signs of the event. Then when the sign was sited, the wise men travelled from even farther, bringing the baby valuable gifts of gold, frankincense and myrrh. I’m sure there were other gifts too – ones that didn’t make it into the account in the scriptures.
In the fictional Drummer Boy song, the boy runs with others to honor the newborn King, the baby Jesus. Everyone in the crowd is bringing their finest presents for the baby. The boy then feels embarrassed at what he can offer. He sings, “Little baby I am a poor boy too. I have no gift to bring that’s fit to give the King.”
He decides though to give the baby the best he can and plays a song for him.
When I tell my children the nativity story, I remind them that we can no longer bring physical presents to the baby Jesus to celebrate his birthday at this time of year. But we can give him other gifts: we can help others. We can try to be more like him.
I obviously am not the baby Jesus. I’m not tiny and helpless. I am a girl, not a boy. But in my health struggles, I have been touched by the many gifts and service people have offered us. Sometimes in seeing people help us, I’ve felt like I’ve had this ringside seat at the manger, watching people offer the best they can think of… from my neighbors pitching in to buy us a freezer to hold the frozen meals they would purchase for us, from someone recognizing my rocking chair was broken and offering to fix it, from my sister-in-law and her friend pumping milk nightly and freezing it so my child could have some breastmilk (later on her lactation consultant got a company to gift these two women electric breast pumps and bags to make their service easier), to my photo book, to the kind notes people have written, to people watching my kids so I could rest, bringing us meals, offering to run errands and countless other acts.
For us, there has been great peace and joy this season.
I also like this season because it reminds me again of Jesus’ wonderful role. In John 14:6, Jesus said to his apostles: “I am the way, the truth, and the life: no man cometh unto the Father, but by me.” When I’ve pondered this phrase lately, I’ve thought less upon the milestones that we need to achieve in this life, but tend to hear in it more and more that it refers to the person we need to become. With some caveats, for me it seems the way to return to the Father is not a set path but whatever path we need to become like Jesus.
Jesus showed us the way we need to treat others. He didn’t judge their worth on one action. He saw their entire worth. He spent time with the lowly. Not only did he preach to the people, but he helped them. The New Testamant is full of healing stories. In the cancer world, I’ve heard the statistic that 1 out of every 2 men will have some kind of cancer at some point in their life. For women, there is a 1 in 3 statistic. In a time with no modern medicine, I imagine these actions by Jesus were a precious gift.
And there are many instances where he helped people before he bothered to say one word about preaching to them or even at all. To the lady caught in adultery, he saved her life before he simply told her to go and sin no more. To the people who followed him so far into a desert land that it was difficult to find food, he turned 2 fish and 5 loaves of bread into a meal to feed 5,000.
For me thinking about Jesus brings me almost a magical feeling of hope - that someone did complete his mission on the Earth perfectly, even though no one else would. And even though he completed his mission without flaw, he would be happy with the best gifts I could offer, like he would have been with the drummer boy’s gift - if that story had been a true story.
In some ways we all are like the drummer boy. None of us can give every gift there is to give. Maybe our gifts are not even what others consider the finest. But from our talents and abilities and the people we know that only we can touch in certain ways, we can give our own unique and beautiful gift to Jesus – the best we have to give. And I imagine it would make him smile, just like the song, which finishes like thus as the drummer boy starts to play:
Mary nodded, pa rum pum pum pum
The ox and lamb kept time, pa rum pum pum pum
I played my drum for Him, pa rum pum pum pum
I played my best for Him, pa rum pum pum pum,
rum pum pum pum, rum pum pum pum,
THEN HE SMILED AT ME, pa rum pum pum pum
ME AND MY DRUM.