Here is my Bridget Jones style cancer update:
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.
Friday, January 21, 2011
Saturday, January 1, 2011
Belated Christmas Thoughts
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.
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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.
Sunday, December 12, 2010
Ch-Ch-Changes
Two weeks. Until Friday, December 3. That was the estimated lifespan of my hair, according to my chemo doctor.
I used to shrug off the hair loss that was a guarantee with my cancer treatment. It will grow back, I told myself. It’s not like it is permanent, like a mastectomy. And I get to try out having better hair than my own. How bad could it be? But as I got closer to that two-week mark after my first chemo treatment, saying and hearing, “it would grow back,” became more and more of a sour statement.
The more people who told me that, the more bothered I would get. I know they were trying to help. But it made me feel like they were saying I didn’t have anything to be upset about.
Increasingly I thought about two breast cancer survivors I spoke with. They told me losing their hair was the hardest thing about their treatment. And that statement was coming from two people who had double mastectomies. People who had to wake up from their surgeries with no breasts.
I imagined walking by the bathroom mirror in the morning hairless. I’d never seen myself without hair. I envisioned this large, bald, egg-shaped head some of the people in my family have. Wow, that could really depress me for an entire morning. More and more, hair loss didn’t seem like a tiny hurdle to jump over. It seemed like a giant brick wall where I couldn’t see the other side. And that side could last as long as nine or ten months with the pause in chemo I would take when the baby was born.
As the two weeks got closer, my sister cut my hair real short on Thanksgiving. I figured it would be less disturbing to pull out handfuls of short hair than long hair. I made her fix the cut like five times, trying to see if I could like it just right. Her boyfriend was falling asleep at the table, waiting for the hair cut to finish to go home. He didn’t say anything. His eyes just got droopier and droopier. Sorry.
My preparations continued. I borrowed clippers. I bought six hats from the cancer society’s online site. I only liked one when they came in the mail. I had my wig trimmed. I didn’t like it suddenly. It just looked so much like a wig to me and not my hair.
I finally started to like my new short hair days before the two-week mark. Great, I thought. Just in time for it to go. Steve walked by one night and ran his fingers through it. Usually having my hair stroked is one of the greatest pleasures in my life. This time I snapped, “Do you want to make it fall out sooner!?” Wow, it was getting to me.
Maybe it won’t happen, I started to think. Nothing has changed so far. My mom tells me my aunt only lost half of her hair with a similar treatment. Maybe my pregnancy hormones will help keep the hair on my head.
Then the day before the two-week mark, I wake up and notice my scalp aches where I slept on it the night before. By Saturday morning, my scalp aches in places where I didn’t sleep. No hair seems to be coming out. But Saturday night, as I remove a barrette from my hair, a few strands leave with it. That is not normal. I run my fingers through that area. A few more strands fall.
It has begun.
From hearing others’ stories, I know there will come a time when I can run my fingers through my hair and get not just a few strands but a clump of hair. My wig consultant told me about the time her 4-yr-old daughter, who had cancer, was playing outside in a strong breeze. She could see the wind blowing the hair off her head. I think I’m going to hold off on the shaving party till I get a little closer to that.
It is really windy Sunday. The wind blows my hair up, down and around as I stand outside and struggle with Naomi’s car seat buckles. The movement hurts my scalp. That night I can pull five strands or more with each swipe of my hand through my hair.
There is no hair on my pillow Monday morning. But I can comb out several strands in some areas of my scalp. On Tuesday morning I usually get about 5-10 strands with each comb of the hair. I start wearing a hat.
By Thursday morning, the hair doesn’t stop coming out. Each time I pull out anywhere from 2 to as many as 35 strands of hair. I spend most of the morning doing this, wondering if it will end.
Answer: No.
The kids are running around doing whatever, spilling their cereal, eating each other’s cereal, spilling their orange juice, screaming, making me pictures. A Scooby Doo video plays all morning long. Fortunately, it keeps repeating once it stops. This is not our usual routine at all. I thought I would take the kids somewhere. But I just don’t feel like it. I’ve promised to make them new pirate swords from spray paint, glue, paint sticks & popsicle sticks that they can decorate. This offer seems to satisfy them enough. I keep thinking the hair will stop coming out. It doesn’t. I fill one small trash can 2 inches high with hair. I realize this means I should warm the clippers up soon. But my hair mostly just looks flat still. Maybe I can get a few more days before the bald morning mirror trip.
After I put Henry down for a nap, I let Naomi play beauty salon on my hair. She tries to put this 3-year-old headband on my head. She forces it on. The band is so tight and irritating. I pull it off and hair rains down. Then she starts combing my hair. More hair rains down. I try to gather it up to not make such a mess.
When will I shave it? Tonight? Can I wait till tomorrow?
It’s 4:30pm. I realize I’ve wasted an entire day and more obsessing over my hair. I don’t want to waste another day. It has to happen tonight. Henry wakes up, and I remember their grandpa is coming soon to get them to spend the night. Tomorrow we're supposed leave at 7:30 am to get my second chemo dose. I wanted Naomi to watch if she wanted to. She says she does. Steve won’t be home till late. So I will have to do it right now. I take the kids upstairs to the bathroom. I grab some scissors and a couple of Naomi’s ponytail holders. I’m praying I can do it without crying in front of her. I can’t cry in front of her. That would be a horrible experience for her.
Henry is still in a bad mood from his nap. He is screaming about everything and running around. It's no wonder since I practically ignored him all day. He asks me for something about every 30 seconds – to wash his hands, to put on his pirate costume, to get a drink of water, to put his pirate hat back on, to reach his new pirate sword. Naomi teases him some. It doesn’t help the screaming.
Meanwhile I’m trying to section off some of my hair into this tiny ponytail to cut off in one chop. Okay, I’m going to do it, Naomi, I say. I pause. I can't believe this moment is here. Then I press down on the scissors. They are so dull it takes a couple chops to get through the hair. I turn to look at Naomi. She is busy making Henry scream about something. She didn’t see anything.
Do you really want to watch? I ask her. She says no then yes. So I ready another ponytail. Both ponytails have been from underneath the top of my hair where the cuts aren’t so noticeable. As I start to close the scissors, Naomi flinches and says, “No.” Henry is screaming again. I have no clue what is about this time. The screams echo in the tile-covered bathroom and make it hard for me to think. I hack through the ponytail slowly again, show Naomi and realize I can’t do this anymore. What a disaster. I’ve heard about people having parties to shave their head. This is anything but that. I can’t do it with the kids alone.
Their grandpa picks them up. I return to the mirror. I want to attend my writing group that night; but I don’t want to wonder about how much hair is falling on my shoulders as I sit there. So I decide I’m going to do it alone.
I cry and cry until my eyes are swollen and red, and my nose is filled with snot. Then I play two Regina Spektor songs on my iPhone: “I cut off my hair” and “Samson.” Her songs are not really about anything, she says. But they both have lines about cutting someone’s hair all off. They calm me down, and I start chopping. It is too hard with the dull scissors so I fetch my Cutco kitchen shears. That does the trick. It gets easier with each chop. I realize I’m living a 5-year-old dream of giving myself my own haircut. The job looks like a 5-year-old did it too. That’s ok. The razor will take care of that. Next I run the razor all over my head, leaning over a trash can to make a little less mess. I finally finish.
I’m feeling angry. What a disaster this whole process was. It was anything but planned out. There was no party. Not that I think I would have handled a party well. I put on this shirt that makes me look like I have tattoos all over my chest and back and up and down my arms. The shirt echoes my feelings. I imagine myself looking like a stormy punk rocker, except I need about ten more piercings on my face instead of the zero I have to really complete the look.
I stare at my head. There are a few thin and bald patches, and the hair isn’t evenly shaved since I held the razor at different angles. But I actually have quite a bit of stubble on my head. I don’t cry. I actually feel relieved, like a huge burden has finally been removed. It is done. The wall is gone. I can move on. And it will grow back, I remember with no ill feelings.
Then I make another pleasant discovery. My head is not shaped like an egg.
I used to shrug off the hair loss that was a guarantee with my cancer treatment. It will grow back, I told myself. It’s not like it is permanent, like a mastectomy. And I get to try out having better hair than my own. How bad could it be? But as I got closer to that two-week mark after my first chemo treatment, saying and hearing, “it would grow back,” became more and more of a sour statement.
The more people who told me that, the more bothered I would get. I know they were trying to help. But it made me feel like they were saying I didn’t have anything to be upset about.
Increasingly I thought about two breast cancer survivors I spoke with. They told me losing their hair was the hardest thing about their treatment. And that statement was coming from two people who had double mastectomies. People who had to wake up from their surgeries with no breasts.
I imagined walking by the bathroom mirror in the morning hairless. I’d never seen myself without hair. I envisioned this large, bald, egg-shaped head some of the people in my family have. Wow, that could really depress me for an entire morning. More and more, hair loss didn’t seem like a tiny hurdle to jump over. It seemed like a giant brick wall where I couldn’t see the other side. And that side could last as long as nine or ten months with the pause in chemo I would take when the baby was born.
As the two weeks got closer, my sister cut my hair real short on Thanksgiving. I figured it would be less disturbing to pull out handfuls of short hair than long hair. I made her fix the cut like five times, trying to see if I could like it just right. Her boyfriend was falling asleep at the table, waiting for the hair cut to finish to go home. He didn’t say anything. His eyes just got droopier and droopier. Sorry.
My preparations continued. I borrowed clippers. I bought six hats from the cancer society’s online site. I only liked one when they came in the mail. I had my wig trimmed. I didn’t like it suddenly. It just looked so much like a wig to me and not my hair.
I finally started to like my new short hair days before the two-week mark. Great, I thought. Just in time for it to go. Steve walked by one night and ran his fingers through it. Usually having my hair stroked is one of the greatest pleasures in my life. This time I snapped, “Do you want to make it fall out sooner!?” Wow, it was getting to me.
Maybe it won’t happen, I started to think. Nothing has changed so far. My mom tells me my aunt only lost half of her hair with a similar treatment. Maybe my pregnancy hormones will help keep the hair on my head.
Then the day before the two-week mark, I wake up and notice my scalp aches where I slept on it the night before. By Saturday morning, my scalp aches in places where I didn’t sleep. No hair seems to be coming out. But Saturday night, as I remove a barrette from my hair, a few strands leave with it. That is not normal. I run my fingers through that area. A few more strands fall.
It has begun.
From hearing others’ stories, I know there will come a time when I can run my fingers through my hair and get not just a few strands but a clump of hair. My wig consultant told me about the time her 4-yr-old daughter, who had cancer, was playing outside in a strong breeze. She could see the wind blowing the hair off her head. I think I’m going to hold off on the shaving party till I get a little closer to that.
It is really windy Sunday. The wind blows my hair up, down and around as I stand outside and struggle with Naomi’s car seat buckles. The movement hurts my scalp. That night I can pull five strands or more with each swipe of my hand through my hair.
There is no hair on my pillow Monday morning. But I can comb out several strands in some areas of my scalp. On Tuesday morning I usually get about 5-10 strands with each comb of the hair. I start wearing a hat.
By Thursday morning, the hair doesn’t stop coming out. Each time I pull out anywhere from 2 to as many as 35 strands of hair. I spend most of the morning doing this, wondering if it will end.
Answer: No.
The kids are running around doing whatever, spilling their cereal, eating each other’s cereal, spilling their orange juice, screaming, making me pictures. A Scooby Doo video plays all morning long. Fortunately, it keeps repeating once it stops. This is not our usual routine at all. I thought I would take the kids somewhere. But I just don’t feel like it. I’ve promised to make them new pirate swords from spray paint, glue, paint sticks & popsicle sticks that they can decorate. This offer seems to satisfy them enough. I keep thinking the hair will stop coming out. It doesn’t. I fill one small trash can 2 inches high with hair. I realize this means I should warm the clippers up soon. But my hair mostly just looks flat still. Maybe I can get a few more days before the bald morning mirror trip.
After I put Henry down for a nap, I let Naomi play beauty salon on my hair. She tries to put this 3-year-old headband on my head. She forces it on. The band is so tight and irritating. I pull it off and hair rains down. Then she starts combing my hair. More hair rains down. I try to gather it up to not make such a mess.
When will I shave it? Tonight? Can I wait till tomorrow?
It’s 4:30pm. I realize I’ve wasted an entire day and more obsessing over my hair. I don’t want to waste another day. It has to happen tonight. Henry wakes up, and I remember their grandpa is coming soon to get them to spend the night. Tomorrow we're supposed leave at 7:30 am to get my second chemo dose. I wanted Naomi to watch if she wanted to. She says she does. Steve won’t be home till late. So I will have to do it right now. I take the kids upstairs to the bathroom. I grab some scissors and a couple of Naomi’s ponytail holders. I’m praying I can do it without crying in front of her. I can’t cry in front of her. That would be a horrible experience for her.
Henry is still in a bad mood from his nap. He is screaming about everything and running around. It's no wonder since I practically ignored him all day. He asks me for something about every 30 seconds – to wash his hands, to put on his pirate costume, to get a drink of water, to put his pirate hat back on, to reach his new pirate sword. Naomi teases him some. It doesn’t help the screaming.
Meanwhile I’m trying to section off some of my hair into this tiny ponytail to cut off in one chop. Okay, I’m going to do it, Naomi, I say. I pause. I can't believe this moment is here. Then I press down on the scissors. They are so dull it takes a couple chops to get through the hair. I turn to look at Naomi. She is busy making Henry scream about something. She didn’t see anything.
Do you really want to watch? I ask her. She says no then yes. So I ready another ponytail. Both ponytails have been from underneath the top of my hair where the cuts aren’t so noticeable. As I start to close the scissors, Naomi flinches and says, “No.” Henry is screaming again. I have no clue what is about this time. The screams echo in the tile-covered bathroom and make it hard for me to think. I hack through the ponytail slowly again, show Naomi and realize I can’t do this anymore. What a disaster. I’ve heard about people having parties to shave their head. This is anything but that. I can’t do it with the kids alone.
Their grandpa picks them up. I return to the mirror. I want to attend my writing group that night; but I don’t want to wonder about how much hair is falling on my shoulders as I sit there. So I decide I’m going to do it alone.
I cry and cry until my eyes are swollen and red, and my nose is filled with snot. Then I play two Regina Spektor songs on my iPhone: “I cut off my hair” and “Samson.” Her songs are not really about anything, she says. But they both have lines about cutting someone’s hair all off. They calm me down, and I start chopping. It is too hard with the dull scissors so I fetch my Cutco kitchen shears. That does the trick. It gets easier with each chop. I realize I’m living a 5-year-old dream of giving myself my own haircut. The job looks like a 5-year-old did it too. That’s ok. The razor will take care of that. Next I run the razor all over my head, leaning over a trash can to make a little less mess. I finally finish.
I’m feeling angry. What a disaster this whole process was. It was anything but planned out. There was no party. Not that I think I would have handled a party well. I put on this shirt that makes me look like I have tattoos all over my chest and back and up and down my arms. The shirt echoes my feelings. I imagine myself looking like a stormy punk rocker, except I need about ten more piercings on my face instead of the zero I have to really complete the look.
I stare at my head. There are a few thin and bald patches, and the hair isn’t evenly shaved since I held the razor at different angles. But I actually have quite a bit of stubble on my head. I don’t cry. I actually feel relieved, like a huge burden has finally been removed. It is done. The wall is gone. I can move on. And it will grow back, I remember with no ill feelings.
Then I make another pleasant discovery. My head is not shaped like an egg.
Saturday, November 20, 2010
Club Chemo
“It’s different for everyone,” is the big chemo tagline. That means no matter how many cancer patient stories you hear, you can’t know what your chemo experience will be like – a frustrating concept for someone who likes to prepare.
I try to think of chemo as a positive, life-saving measure. But it’s hard when you read the warning labels: May cause hair loss, nausea, vomiting, diarrhea, stomach aches, constipation, heart arrhythmias, fatal heart damage, extreme fatigue, mouth sores, joint pain, easy bruising/bleeding, slower healing of existing wounds, and a temporary white blood cell loss that can make common viruses and bacteria life-threatening.
Those are the warnings for the drugs I’ll be taking for the next three months. The drug I’ll get for three months after the baby is born has these warnings: May cause nausea, vomiting, loss of appetite, change in taste, thinned or brittle hair, joint pain, unusual bruising/bleeding, permanent numbness and tingling in your fingertips, fever, chills, cough, sore throat, difficulty swallowing, dizziness, shortness of breath, severe exhaustion, skin rash, change in bowel habits, and infertility.
Fun stuff.
Yesterday was my day to join club chemo for the first time. I know I need to do it. But I don’t want to. Part of me hoped my membership papers might get lost in the mail, despite all the perks, like free snacks and drinks at the chemo lounge. Six months of club chemo feels like an eternity to me right now.
We walk through this door at the back of my oncologist’s office. There is a white sign with the word “Stop” in red letters. In smaller print it says to double check you have your bracelet, among other administrative things. Oh, how I just want to stop. Of course, I don’t.
Behind the door, the mundane doctor office transforms into a hospital setting - Club Chemo. A wide nurse’s desk greets you with a second check-in sheet. Behind the desk are rows of reclining hospital chairs, separated by curtains and adorned with IV poles. Party-time.
When I came in to this place for blood work two days ago and saw people receiving chemo for the first time, my waiting chair faced two bald, elderly women who looked like they would pass away if you blew on them wrong. Their bodies seemed to give them more pain than capabilities. I felt really sorry for them. It didn’t help my imagination problems in positive ways. Chemo is what I dreaded the most about my treatment. The older women were like living, moving posters of my worst flashes of imagination.
Today the patients near me seem to be able to walk. They don’t look overly sick. They have hair. I learned this morning that I’ve got about 14 more days of hair before it starts falling out. How can they all be in here for their first chemo session? Then I get another glance at a woman with long auburn hair in her 50s. She’s laying in bed with her eyes closed. I notice her hairline is slightly crooked, like she turned in bed and the movement pulled her whole head of hair down diagonally just a millimeter.
My nurse comes in to start my IV. Her name is Kelly - she'll be serving me my cocktail of drugs today. I like her immediately. Her scrubs have pink breast cancer ribbon print all over them. I’m back in my upbeat, nervous tone after a few teary moments in the bathroom. I ask her if she’s bringing my poison. She makes a gentle complaining face. She hates when patients call it that. It makes her feel guilty about her job. But she adds that no one should have to go through it. I apologize. I explain that I know I’m supposed to be visualizing more positive things: like the drugs killing the cancer, peaceful beach settings or the image of a tiny Chemo Shark being unleashed to chomp away at cancer (while accidentally eating other cells too). But my imagination isn’t working well today. I tell her I’ve brought distraction instead – in the form of reruns from Season 3 of 30 Rock.
She starts me on the easy stuff: the steroids, the saline, the anti-nausea drugs. Steve starts up the 30 Rock Reruns on his i-Phone (I wish I could get advertising fees for that product placement). We start giggling aloud. The distraction is working. I feel this intense appreciation for the actors on the show – that I could be laughing out loud as my chemo drugs get wheeled down the hall toward their target.
The nurse comes back with the Adriamycin. There are three long, one-inch thick syringes filled with the drug that looks like red Kool-Aid. They are the biggest syringes I’d ever seen. I did some research on the drug on Wikipedia. Scientists first discovered the substance in soil bacteria found at an Italian Castle. It almost sounds romantic. But its nicknames give its true effects away. “Red death.” It also is known as the “red devil.” It can damage your heart though the damage is unlikely at lower doses.
I try not think about it and look back at the screen. 30 Rock takes place at a tv studio for a comedy show. One of the actors has been fined by the FCC for swearing on live television. Instead of feeling shame at the punishment, he gets excited because he realizes he can afford the fine, which means he no longer has to worry about what he says on tv. He can just pay the fine each time. Of course the show’s producer is pulling her hair out.
I start laughing again as the nurse starts to push the first syringe into my IV. Every time she pushes, I feel something heavy flooding into my chest. I start taking deep breaths because this weighty fluid makes it harder to breath. She measures my oxygen levels. They check out. But she starts watching me like a hawk. One of the warning signs of an adverse reaction to the drug is shortness of breath.
I return to laughing. She continues pushing. Each time the weight feels heavier and heavier. I’m starting to feel really uncomfortable. I’m about to ask her to slow down when she pushes the syringe again. My laughter turns to tears, and all these images flood into my head of me gasping for breath while they run for some kind of antidote. I know part of the discomfort is emotional panic. But that knowledge doesn’t stop the tears for a few minutes.
We take a break. When the nurse continues, she does it much slower. The pressing feeling becomes more bearable. Next she brings the Cytoxan. It looks less scary. Just a clear IV bag. But my research reminds me that this drug is related to mustard gas. Awesome. This one just slowly drips into my IV. The nurse slows the dripping more after my reaction to the last drug. I only have to take really deep breaths a few times.
We finally pull out at close to 3pm. We’ve been there for nearly 6 hours. I’m feeling real tired, even though the IV was pumped with steroids. I stay awake only by working on this blog. That is about all the energy I can muster.
Today, Saturday, I’m feeling better. I’m waiting for the fatigue side effects to start kicking in. Will it be today, tomorrow, Monday, Tuesday? Will I be one of the lucky ones who don’t get it so bad? I don’t know. But I can feel our baby boy kicking. The doctors assure us the baby will survive the chemo fine too. But feeling him move is a relief.
Thank you to all who helped us with dinner, meals, cleaning and support after the surgery. Your kind acts have meant a lot to us.
I try to think of chemo as a positive, life-saving measure. But it’s hard when you read the warning labels: May cause hair loss, nausea, vomiting, diarrhea, stomach aches, constipation, heart arrhythmias, fatal heart damage, extreme fatigue, mouth sores, joint pain, easy bruising/bleeding, slower healing of existing wounds, and a temporary white blood cell loss that can make common viruses and bacteria life-threatening.
Those are the warnings for the drugs I’ll be taking for the next three months. The drug I’ll get for three months after the baby is born has these warnings: May cause nausea, vomiting, loss of appetite, change in taste, thinned or brittle hair, joint pain, unusual bruising/bleeding, permanent numbness and tingling in your fingertips, fever, chills, cough, sore throat, difficulty swallowing, dizziness, shortness of breath, severe exhaustion, skin rash, change in bowel habits, and infertility.
Fun stuff.
Yesterday was my day to join club chemo for the first time. I know I need to do it. But I don’t want to. Part of me hoped my membership papers might get lost in the mail, despite all the perks, like free snacks and drinks at the chemo lounge. Six months of club chemo feels like an eternity to me right now.
We walk through this door at the back of my oncologist’s office. There is a white sign with the word “Stop” in red letters. In smaller print it says to double check you have your bracelet, among other administrative things. Oh, how I just want to stop. Of course, I don’t.
Behind the door, the mundane doctor office transforms into a hospital setting - Club Chemo. A wide nurse’s desk greets you with a second check-in sheet. Behind the desk are rows of reclining hospital chairs, separated by curtains and adorned with IV poles. Party-time.
When I came in to this place for blood work two days ago and saw people receiving chemo for the first time, my waiting chair faced two bald, elderly women who looked like they would pass away if you blew on them wrong. Their bodies seemed to give them more pain than capabilities. I felt really sorry for them. It didn’t help my imagination problems in positive ways. Chemo is what I dreaded the most about my treatment. The older women were like living, moving posters of my worst flashes of imagination.
Today the patients near me seem to be able to walk. They don’t look overly sick. They have hair. I learned this morning that I’ve got about 14 more days of hair before it starts falling out. How can they all be in here for their first chemo session? Then I get another glance at a woman with long auburn hair in her 50s. She’s laying in bed with her eyes closed. I notice her hairline is slightly crooked, like she turned in bed and the movement pulled her whole head of hair down diagonally just a millimeter.
My nurse comes in to start my IV. Her name is Kelly - she'll be serving me my cocktail of drugs today. I like her immediately. Her scrubs have pink breast cancer ribbon print all over them. I’m back in my upbeat, nervous tone after a few teary moments in the bathroom. I ask her if she’s bringing my poison. She makes a gentle complaining face. She hates when patients call it that. It makes her feel guilty about her job. But she adds that no one should have to go through it. I apologize. I explain that I know I’m supposed to be visualizing more positive things: like the drugs killing the cancer, peaceful beach settings or the image of a tiny Chemo Shark being unleashed to chomp away at cancer (while accidentally eating other cells too). But my imagination isn’t working well today. I tell her I’ve brought distraction instead – in the form of reruns from Season 3 of 30 Rock.
She starts me on the easy stuff: the steroids, the saline, the anti-nausea drugs. Steve starts up the 30 Rock Reruns on his i-Phone (I wish I could get advertising fees for that product placement). We start giggling aloud. The distraction is working. I feel this intense appreciation for the actors on the show – that I could be laughing out loud as my chemo drugs get wheeled down the hall toward their target.
The nurse comes back with the Adriamycin. There are three long, one-inch thick syringes filled with the drug that looks like red Kool-Aid. They are the biggest syringes I’d ever seen. I did some research on the drug on Wikipedia. Scientists first discovered the substance in soil bacteria found at an Italian Castle. It almost sounds romantic. But its nicknames give its true effects away. “Red death.” It also is known as the “red devil.” It can damage your heart though the damage is unlikely at lower doses.
I try not think about it and look back at the screen. 30 Rock takes place at a tv studio for a comedy show. One of the actors has been fined by the FCC for swearing on live television. Instead of feeling shame at the punishment, he gets excited because he realizes he can afford the fine, which means he no longer has to worry about what he says on tv. He can just pay the fine each time. Of course the show’s producer is pulling her hair out.
I start laughing again as the nurse starts to push the first syringe into my IV. Every time she pushes, I feel something heavy flooding into my chest. I start taking deep breaths because this weighty fluid makes it harder to breath. She measures my oxygen levels. They check out. But she starts watching me like a hawk. One of the warning signs of an adverse reaction to the drug is shortness of breath.
I return to laughing. She continues pushing. Each time the weight feels heavier and heavier. I’m starting to feel really uncomfortable. I’m about to ask her to slow down when she pushes the syringe again. My laughter turns to tears, and all these images flood into my head of me gasping for breath while they run for some kind of antidote. I know part of the discomfort is emotional panic. But that knowledge doesn’t stop the tears for a few minutes.
We take a break. When the nurse continues, she does it much slower. The pressing feeling becomes more bearable. Next she brings the Cytoxan. It looks less scary. Just a clear IV bag. But my research reminds me that this drug is related to mustard gas. Awesome. This one just slowly drips into my IV. The nurse slows the dripping more after my reaction to the last drug. I only have to take really deep breaths a few times.
We finally pull out at close to 3pm. We’ve been there for nearly 6 hours. I’m feeling real tired, even though the IV was pumped with steroids. I stay awake only by working on this blog. That is about all the energy I can muster.
Today, Saturday, I’m feeling better. I’m waiting for the fatigue side effects to start kicking in. Will it be today, tomorrow, Monday, Tuesday? Will I be one of the lucky ones who don’t get it so bad? I don’t know. But I can feel our baby boy kicking. The doctors assure us the baby will survive the chemo fine too. But feeling him move is a relief.
Thank you to all who helped us with dinner, meals, cleaning and support after the surgery. Your kind acts have meant a lot to us.
Tuesday, October 19, 2010
Calculations
To say I wasn't nervous walking into Johns Hopkins today would just be a lie. Today was the day I would receive my pathology report - the day I would learn how far the cancer had spread.
I tried to push the thought aside - the one that makes me cry. The one where I imagine how old my children are when the disease comes back in my brain, my liver, my bones or my lungs, and the doctors tell me it can't be cured. What if that is my story? How old will they be? Will they be 3, 6 and 8? Will they be 7, 10 and 12. Will they be 10, 13 and 15. My mind hurts at the thought. All those ages are too young for my kids to not have their mother. Then the tears well in my eyes.
We drive to the top of the parking garage. We take the elevator down, and I repeat in my head, "I'm not a statistic. Whatever the surgeon tells me does not determine my story." But I'm nervous.
I shouldn't have looked the calculator up. Once I found it, I should have ignored it. But I didn't. A calculator that would let me enter the details of my breast cancer and then tell me my life expectancy. You entered in the size of the tumor, how many lymph nodes were infected, what types of things made the cancer grow. I wouldn't know all the details till we saw the surgeon today. But I knew enough to play around.
I knew the tumor was likely under 2 cm, a good thing. I knew it fed off of estrogen and progesterone, a good thing, in a way with some new drugs available. I knew the cancer was in at least one lymph node. Not good. Worse. The surgeon said three of the lymph nodes he removed looked enlarged. If the cancer had visibly spread to three nodes, how many more had invisible amounts of the disease? Each lymph node with the disease meant it was more likely the cancer was somewhere else too, lurking, hiding, waiting for its time in a little corner of my body to escape chemo, escape radiation, escape hormone therapy and return to grow.
Beep. Beep. Bop. The calculations didn't look dire. But they didn't look good either. I gasped when I saw how much my long term survival chances dropped with each additional node found with cancer.
We entered the Outpatient Center and got our orange security bracelets. There were less people than usual waiting on the first floor for the elevators. We waited for one instead of taking the stairs. We arrived four minutes early for our appointment at the Avon Breast Center. As usual, there was a long line of people waiting to be called back into the second waiting room. As usual, all of them looked far older than us. We waited for nearly an hour. I took out some paper and a pen. I started writing questions.
When would my port stop hurting? When would I know the numbness on the side of my body was permanent? What should I do so I can lift my arm above my shoulder again? My arm swelled up again some. Was that bad?
Would I ask the one I really wanted to know? What are my chances?
Yes.
I looked at my list. What would I do when he told me the results? Would I cry? Would my mind keep seeing the same sentence over and over? Would I hear anything else he would say?
That's why I had my list. I would force myself to think.
Steve wrote work emails on his phone. "It doesn't matter what they tell us," he told me repeatedly. "The drugs are going to do their job." Steve was wearing the calm, confident face. I knew he didn't always feel that way. But he was doing a good job of making me believe it today.
The lady at the front desk called my name. Do you have any pain today? Yes. How much? Moderate. Do you want to discuss pain with the doctor today? Yes.
We're called immediately into the examination room. Steve helps me pull my loose t-shirt off. I can only lift my arms so far without pain, and I still have a long plastic tube shooting out of my body to collect the drainage from the surgery. I put on the hospital gown, sit on the examination table and wait. Several minutes pass so we start looking at the cancer staging flip chart. We've looked at this chart many times. It's in nearly every examination room we've sat in during the last two months. We start a familiar debate. Steve argues we're likely a stage III. He's preparing me for the worst news. I argue that there was a small chance, with just three lymph nodes infected, we could still be stage II.
More time passes. My back aches. So I lay down on the table and nearly fall asleep. Steve starts answering work emails again.
Then there is a knock. The doctor walks in. He's wearing a navy sweater that zips down halfway. His hair is cut close to his head. He wears glasses and has a goatee. He has a little extra weight on him. Each time I see him he reminds me more of a jolly family uncle then an oncology surgeon. We talk about the chart Steve's been compiling of how much fluid he empties from my drain. I almost forget the real questions for the visit. Then the doctor seems to remember too. "Let me go get your pathology report."
"Can I have a copy?" I ask.
"No," he smiles. Then says, "Of course."
He returns with the nurse that is a breast cancer survivor herself. They hold a stack of papers. The nurse seems to be smiling. I don't remember what they say next. I don't remember who asked what. I just remember one sentence. "The cancer was only in one lymph node."
The lymph node that had the cancer was bigger than the tumor itself. But no other nodes had the cancer. Not even a cell. And they had a lot of nodes to sample. They removed 17.
I could hardly think. I didn't even hope the news would be that good. I was just so happy. I felt like someone had given me a license to believe what I believed on most days. That it would be a hard year. But my baby would be fine. And I would beat the disease.
Steve was smiling. He offered to bring the doctor homemade humus, Lebanese style, with each chickpea shelled. He joked that it was far better than the Iranian hummus, where the doctor's roots were. The doctor started talking about high horsepower blenders and sneaking cabbage into his son's smoothies. The nurse continued smiling. The doctor hugged me. A first in my life.
I got out my list. I made sure I asked all my questions. But the answers hardly mattered compared to the phrase I kept seeing in my head. "One lymph node."
What are my chances? I'm not telling you. I'm not a statistic. But they're looking much better after today.
I tried to push the thought aside - the one that makes me cry. The one where I imagine how old my children are when the disease comes back in my brain, my liver, my bones or my lungs, and the doctors tell me it can't be cured. What if that is my story? How old will they be? Will they be 3, 6 and 8? Will they be 7, 10 and 12. Will they be 10, 13 and 15. My mind hurts at the thought. All those ages are too young for my kids to not have their mother. Then the tears well in my eyes.
We drive to the top of the parking garage. We take the elevator down, and I repeat in my head, "I'm not a statistic. Whatever the surgeon tells me does not determine my story." But I'm nervous.
I shouldn't have looked the calculator up. Once I found it, I should have ignored it. But I didn't. A calculator that would let me enter the details of my breast cancer and then tell me my life expectancy. You entered in the size of the tumor, how many lymph nodes were infected, what types of things made the cancer grow. I wouldn't know all the details till we saw the surgeon today. But I knew enough to play around.
I knew the tumor was likely under 2 cm, a good thing. I knew it fed off of estrogen and progesterone, a good thing, in a way with some new drugs available. I knew the cancer was in at least one lymph node. Not good. Worse. The surgeon said three of the lymph nodes he removed looked enlarged. If the cancer had visibly spread to three nodes, how many more had invisible amounts of the disease? Each lymph node with the disease meant it was more likely the cancer was somewhere else too, lurking, hiding, waiting for its time in a little corner of my body to escape chemo, escape radiation, escape hormone therapy and return to grow.
Beep. Beep. Bop. The calculations didn't look dire. But they didn't look good either. I gasped when I saw how much my long term survival chances dropped with each additional node found with cancer.
We entered the Outpatient Center and got our orange security bracelets. There were less people than usual waiting on the first floor for the elevators. We waited for one instead of taking the stairs. We arrived four minutes early for our appointment at the Avon Breast Center. As usual, there was a long line of people waiting to be called back into the second waiting room. As usual, all of them looked far older than us. We waited for nearly an hour. I took out some paper and a pen. I started writing questions.
When would my port stop hurting? When would I know the numbness on the side of my body was permanent? What should I do so I can lift my arm above my shoulder again? My arm swelled up again some. Was that bad?
Would I ask the one I really wanted to know? What are my chances?
Yes.
I looked at my list. What would I do when he told me the results? Would I cry? Would my mind keep seeing the same sentence over and over? Would I hear anything else he would say?
That's why I had my list. I would force myself to think.
Steve wrote work emails on his phone. "It doesn't matter what they tell us," he told me repeatedly. "The drugs are going to do their job." Steve was wearing the calm, confident face. I knew he didn't always feel that way. But he was doing a good job of making me believe it today.
The lady at the front desk called my name. Do you have any pain today? Yes. How much? Moderate. Do you want to discuss pain with the doctor today? Yes.
We're called immediately into the examination room. Steve helps me pull my loose t-shirt off. I can only lift my arms so far without pain, and I still have a long plastic tube shooting out of my body to collect the drainage from the surgery. I put on the hospital gown, sit on the examination table and wait. Several minutes pass so we start looking at the cancer staging flip chart. We've looked at this chart many times. It's in nearly every examination room we've sat in during the last two months. We start a familiar debate. Steve argues we're likely a stage III. He's preparing me for the worst news. I argue that there was a small chance, with just three lymph nodes infected, we could still be stage II.
More time passes. My back aches. So I lay down on the table and nearly fall asleep. Steve starts answering work emails again.
Then there is a knock. The doctor walks in. He's wearing a navy sweater that zips down halfway. His hair is cut close to his head. He wears glasses and has a goatee. He has a little extra weight on him. Each time I see him he reminds me more of a jolly family uncle then an oncology surgeon. We talk about the chart Steve's been compiling of how much fluid he empties from my drain. I almost forget the real questions for the visit. Then the doctor seems to remember too. "Let me go get your pathology report."
"Can I have a copy?" I ask.
"No," he smiles. Then says, "Of course."
He returns with the nurse that is a breast cancer survivor herself. They hold a stack of papers. The nurse seems to be smiling. I don't remember what they say next. I don't remember who asked what. I just remember one sentence. "The cancer was only in one lymph node."
The lymph node that had the cancer was bigger than the tumor itself. But no other nodes had the cancer. Not even a cell. And they had a lot of nodes to sample. They removed 17.
I could hardly think. I didn't even hope the news would be that good. I was just so happy. I felt like someone had given me a license to believe what I believed on most days. That it would be a hard year. But my baby would be fine. And I would beat the disease.
Steve was smiling. He offered to bring the doctor homemade humus, Lebanese style, with each chickpea shelled. He joked that it was far better than the Iranian hummus, where the doctor's roots were. The doctor started talking about high horsepower blenders and sneaking cabbage into his son's smoothies. The nurse continued smiling. The doctor hugged me. A first in my life.
I got out my list. I made sure I asked all my questions. But the answers hardly mattered compared to the phrase I kept seeing in my head. "One lymph node."
What are my chances? I'm not telling you. I'm not a statistic. But they're looking much better after today.
Wednesday, October 13, 2010
Recovery
I'm here at home, back from surgery. My surgeon seemed very happy about the success of the procedure, which makes me believe him a little more when he tells me I should just rest and not worry. Wait. Not worry? That is my job. I excel at worrying. I could win worrying contests. Go on to Olympic trials for competitive worrying.
But I digress. He was very happy and that was good because he was attempting new surgical feats in my surgery. Namely, he wanted to install my chemo port without using an x-ray or any other kind of radioactive imaging techniques. Let me explain first. A chemo port is a device the surgeon will place under your skin on your chest that hooks into a central vein. The idea is to give your veins in your arms a break that might start to weaken under the repeated chemo treatments. Usually surgeons use imaging to make sure the line doesn't accidentally go into your lung or the wrong vessel. But in consideration of the baby, he was going to attempt the procedure without imaging. Apparently his surgical buddies blanched at the feat. But he was very happy about the results. Hurray for confident doctors. Go Dr. Habibi.
So I'm happy about that accomplishment. The baby's heart rate was plugging away like normal after the surgery. I'm happy about that.
But honestly, I'm not happy about everything right now. I'm working on it though... with lots of naps, my mom's chicken rice soup and homemade rolls, some 30 Rock re-runs, and prescribed periods of not worrying. Here is a list of the things I'm not super happy about right now:
1. Who came up with the idea to make that an outpatient surgery? Seriously. Maybe other women fly through that surgery. My pre-op paper said it would take me about an hour to wake up from general anesthesia and get my pain under control. Three hours after I exited the operating room (and I woke up soon enough to remember exiting it), I was still half-incoherent, vomiting, and crying uncontrollably from the pain. But it was time to close-up shop. I was the last person in the recovery room. Here are some pills for your pain (that haven't been working so far). If you get home and still can't handle the pain, you can call about coming back. Awesome. Did I mention that I wasn't handling the pain too well when I was leaving? Did the tears not give that away?
2. I can't feel much of the right side of my upper body, especially my armpit, the right side of my chest and under my right arm down to my elbow at times. Yet I still feel pain. Might this numbness go away? Yes. Might some of it stay? Yes. When they pull out your lymph nodes sometimes the thinnest and most invisible of your nerves get cut. I didn't know about this side effect. I'm not feeling super happy about it right now.
3. My hand swelled up suddenly on Sunday morning. I couldn't close it. I spent the rest of the day with my arm hoisted up on pillows to help it drain. Of course I'm panicking the whole time that this swelling means I'll have lymphedema. We spent the day back at the hospital to see the surgeon about that issue yesterday. Apparently, the swelling is a normal side effect of the surgery. I shouldn't worry that the swelling means I will have lymphedema. I've been repeating those words in my head a lot in the last day. Did I mention that I worry a lot?
4. Okay maybe some people don't want to look at their incision. But I've looked. I was under the impression that you wouldn't be able to tell after the surgery that anything had happened since my tumor was almost in my armpit. But that was not my impression at glancing at my arm. To me it looked like someone scooped out a chunk of flesh from my armpit. My surgeon told me to stop looking at it, that it would look different when it healed, especially once they took the drain out. Really this is probably the least of my concerns. So I keep telling myself, "Stop looking. Stop worrying."
Truly the big concern is our meeting next week when we find out the pathology of the cancer - How far into my lymph nodes did the cancer spread? When will chemo start?
Right now I should just follow my doctor's orders in blissful ignorance: Don't worry. And rest. Thank you so much for everyone that is helping me follow those orders, especially that second one.
But I digress. He was very happy and that was good because he was attempting new surgical feats in my surgery. Namely, he wanted to install my chemo port without using an x-ray or any other kind of radioactive imaging techniques. Let me explain first. A chemo port is a device the surgeon will place under your skin on your chest that hooks into a central vein. The idea is to give your veins in your arms a break that might start to weaken under the repeated chemo treatments. Usually surgeons use imaging to make sure the line doesn't accidentally go into your lung or the wrong vessel. But in consideration of the baby, he was going to attempt the procedure without imaging. Apparently his surgical buddies blanched at the feat. But he was very happy about the results. Hurray for confident doctors. Go Dr. Habibi.
So I'm happy about that accomplishment. The baby's heart rate was plugging away like normal after the surgery. I'm happy about that.
But honestly, I'm not happy about everything right now. I'm working on it though... with lots of naps, my mom's chicken rice soup and homemade rolls, some 30 Rock re-runs, and prescribed periods of not worrying. Here is a list of the things I'm not super happy about right now:
1. Who came up with the idea to make that an outpatient surgery? Seriously. Maybe other women fly through that surgery. My pre-op paper said it would take me about an hour to wake up from general anesthesia and get my pain under control. Three hours after I exited the operating room (and I woke up soon enough to remember exiting it), I was still half-incoherent, vomiting, and crying uncontrollably from the pain. But it was time to close-up shop. I was the last person in the recovery room. Here are some pills for your pain (that haven't been working so far). If you get home and still can't handle the pain, you can call about coming back. Awesome. Did I mention that I wasn't handling the pain too well when I was leaving? Did the tears not give that away?
2. I can't feel much of the right side of my upper body, especially my armpit, the right side of my chest and under my right arm down to my elbow at times. Yet I still feel pain. Might this numbness go away? Yes. Might some of it stay? Yes. When they pull out your lymph nodes sometimes the thinnest and most invisible of your nerves get cut. I didn't know about this side effect. I'm not feeling super happy about it right now.
3. My hand swelled up suddenly on Sunday morning. I couldn't close it. I spent the rest of the day with my arm hoisted up on pillows to help it drain. Of course I'm panicking the whole time that this swelling means I'll have lymphedema. We spent the day back at the hospital to see the surgeon about that issue yesterday. Apparently, the swelling is a normal side effect of the surgery. I shouldn't worry that the swelling means I will have lymphedema. I've been repeating those words in my head a lot in the last day. Did I mention that I worry a lot?
4. Okay maybe some people don't want to look at their incision. But I've looked. I was under the impression that you wouldn't be able to tell after the surgery that anything had happened since my tumor was almost in my armpit. But that was not my impression at glancing at my arm. To me it looked like someone scooped out a chunk of flesh from my armpit. My surgeon told me to stop looking at it, that it would look different when it healed, especially once they took the drain out. Really this is probably the least of my concerns. So I keep telling myself, "Stop looking. Stop worrying."
Truly the big concern is our meeting next week when we find out the pathology of the cancer - How far into my lymph nodes did the cancer spread? When will chemo start?
Right now I should just follow my doctor's orders in blissful ignorance: Don't worry. And rest. Thank you so much for everyone that is helping me follow those orders, especially that second one.
Thursday, October 7, 2010
Surgery Day
Tomorrow is surgery day. I'm packing this day full of stuff to the end. I'll get a forced nap in the middle of the day tomorrow. I can catch up on sleep then.
Today: Took kids to Storyville. Got lunch. Put Henry down for a nap and got props, clothes, snacks, back-up clothes for the family photo session and kids prepped. Kind friend then snapped pictures of us as we ran, watched caterpillars, blew bubbles, read books and ate cookies in a gorgeous golden field. The kids enjoyed this entire activity completely. They especially liked calling Ms. Jeri crazy. Then we grabbed a pizza dinner. Went home. I spent 40 minutes reading & talking to Naomi and waiting for her to fall asleep. She is excited that she gets to wear her dress from the pictures for school tomorrow. Next I read to Henry, rocked him and hoisted his sleeping body into bed.
I wondered, "When am I going to be able to do all this again?"
I'm so anxious to get in the ring and start fighting the cancer with something besides broccoli sprouts and a good attitude. But I don't look forward to the big unknown either.
Tomorrow the doctors at Hopkins will install a chemo port and remove a lump and about a dozen lymph nodes from my right armpit, more or less. I joke that tomorrow starts the era of the "arm-in-the-glass-box" because when they take out your lymph nodes, they (the pamphlets of the medical community) start advising you about the dangers of lymphedema. The big "L" is a swelling of your impacted limb that can happen because the system your body uses to drain fluid, infections, bacteria, viruses and to transport some disease-fighting cells gets blocked. If lymphedema happens and goes untreated, the swelling can become permanent.
So the pamphlets advise me to avoid the following things from happening to my right arm: bug bites, cuts, scrapes, burns, bumps, dry skin with cracks, tight clothing, carrying a purse, heat to the limb and air travel without compression bands. Hmnn....
To prevent such things from happening, the pamphlets suggest: wearing gloves while cleaning dishes and doing laundry, wearing gloves while gardening, avoiding repetive motions with my arm, wearing gloves at all times when it is cold, shaving with an electric razer, lotioning and examining my skin daily, refusing blood draws and blood pressure reads from the affected arm.... or I could just buy a glass box for my arm.
I joke. But lymphedema is one of my worries. I have many more. Chemo - What will that be like while pregnant and taking care of two young kids? Radiation - Same questions. Lately I mostly think about my kids. When will I be able to pick them up again? When will I be able to play with them again?
But it could be much worse. I could be that young mother in the news who doctors cut in half to remove cancer from her hip bone and spine. My kid could have the cancer. I could be hit by a bus tomorrow.
I have a lot to be thankful for. Thank you so much to all the angels who helped me get ready for this new adventure. I've gotten so many things checked off my pre-treatment bucket list. I feel about as prepared as I can be. Now I've got to eat a bowl of ice cream before my surgery-imposed fast and hop into the fighting ring.
Today: Took kids to Storyville. Got lunch. Put Henry down for a nap and got props, clothes, snacks, back-up clothes for the family photo session and kids prepped. Kind friend then snapped pictures of us as we ran, watched caterpillars, blew bubbles, read books and ate cookies in a gorgeous golden field. The kids enjoyed this entire activity completely. They especially liked calling Ms. Jeri crazy. Then we grabbed a pizza dinner. Went home. I spent 40 minutes reading & talking to Naomi and waiting for her to fall asleep. She is excited that she gets to wear her dress from the pictures for school tomorrow. Next I read to Henry, rocked him and hoisted his sleeping body into bed.
I wondered, "When am I going to be able to do all this again?"
I'm so anxious to get in the ring and start fighting the cancer with something besides broccoli sprouts and a good attitude. But I don't look forward to the big unknown either.
Tomorrow the doctors at Hopkins will install a chemo port and remove a lump and about a dozen lymph nodes from my right armpit, more or less. I joke that tomorrow starts the era of the "arm-in-the-glass-box" because when they take out your lymph nodes, they (the pamphlets of the medical community) start advising you about the dangers of lymphedema. The big "L" is a swelling of your impacted limb that can happen because the system your body uses to drain fluid, infections, bacteria, viruses and to transport some disease-fighting cells gets blocked. If lymphedema happens and goes untreated, the swelling can become permanent.
So the pamphlets advise me to avoid the following things from happening to my right arm: bug bites, cuts, scrapes, burns, bumps, dry skin with cracks, tight clothing, carrying a purse, heat to the limb and air travel without compression bands. Hmnn....
To prevent such things from happening, the pamphlets suggest: wearing gloves while cleaning dishes and doing laundry, wearing gloves while gardening, avoiding repetive motions with my arm, wearing gloves at all times when it is cold, shaving with an electric razer, lotioning and examining my skin daily, refusing blood draws and blood pressure reads from the affected arm.... or I could just buy a glass box for my arm.
I joke. But lymphedema is one of my worries. I have many more. Chemo - What will that be like while pregnant and taking care of two young kids? Radiation - Same questions. Lately I mostly think about my kids. When will I be able to pick them up again? When will I be able to play with them again?
But it could be much worse. I could be that young mother in the news who doctors cut in half to remove cancer from her hip bone and spine. My kid could have the cancer. I could be hit by a bus tomorrow.
I have a lot to be thankful for. Thank you so much to all the angels who helped me get ready for this new adventure. I've gotten so many things checked off my pre-treatment bucket list. I feel about as prepared as I can be. Now I've got to eat a bowl of ice cream before my surgery-imposed fast and hop into the fighting ring.
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