I think there should be some kind of trophy, or medal, or certificate of achievement, something anyway to mark the completion of cancer treatment. I understand why it’s not done, but nonetheless it seems like all this hard work and endurance should reach some point of crescendo, a climax, a triumphant overcoming of the evil beast rather than just sputtering out at the end with a casual “have a nice life.”
I have Herceptin infusions scheduled every three weeks for several months. One of those appointments was today. Today was a rough day; one of those days where everything seems a little more complicated than it should be. Keys are lost, things forgotten, I trip over my own feet, and I’m just doing good to remember where I am, and where I’m going. But I did manage to make it to the Seattle Cancer Care Alliance on time to have my port tapped for the blood draw.
After the blood draw we had the standard 2 hour wait till the doctor appointment, followed by my Herceptin infusion. Or so I thought. A long boring wait only to find out when we checked in that we missed the appointment; it was scheduled for an hour earlier. It took several phone calls and discussions between staff members, but they were able to squeeze me, and my now slightly elevated blood-pressure in.
Right off the bat, my doctor asked me if I want to have another baby. “I can refer you to our fertility specialist, if you would like.” Wait. What?
That was the farthest thing from my brain at the moment. I’d love for Gem to have a sibling, but I’ve been so focused on beating cancer, and moving mom out of her apartment, and the trip to Alaska, and then moving us out of our apartment that thoughts of baby-making, aside from the semi-regular baby-making practice, have not been on the agenda. I really thought this appointment would be more about the wheezing and extreme heaviness in my chest I have been experiencing since we moved into our new apartment.
Which I told her. So she listened to my lungs and wrote an order for a chest x-ray to make sure the cancer had not spread.
Then she proceeded to tell me that today would be my last treatment.
Wait. What?
I’ve got months of treatment left. Besides, if this was my last treatment, I would have baked brownies for everyone and scheduled a party or something. I love my doctor, I love my nurses – I want to celebrate and thank them. She looked back at the chart, checked again, yup, today would be my last treatment. I’m done. We’ll just cancel the extra appointments.
Then I was whisked off to infusion for the treatment, which was pushed through faster than usual so I could run down to radiology and get the xray in quick before they closed for the day. While all this was happening, the baby blew out her diaper, so my still-fearful-of-poopie-even-though-he’s-been-a-father-for-two-years husband had to deal with a very cranky toddler with more poop than her diaper could handle and not enough wet wipes on the planet while I proceeded to lose my cell phone running between appointments.
We finally got everyone back together and mostly cleaned up and in the car stuck smack dab in the middle of Seattle 5pm downtown gridlock when I discovered the missing phone. The phone they were going to call with the results of the scan.
…
Finally, we’re home. We have the phone, which no one has called. It’s 8 pm and no results yet. No news is good news, right?
So, either I’m done with cancer treatment- or I’m not, and in a very bad way.
I feel like I should be celebrating right now, but I’m more stunned than anything.
UPDATE: results are in – XRAY IS CLEAR! I’m done with treatment!
I guess it’s time for another update on the whole kicking-cancer’s-ass and getting-on-with-my-life situation.
Let me e’splain.
No, there’s too much. Let me sum up.
The Ugly
I finished up the radiation treatments and my skin is feeling much better, although it still looks dirty and scaly in a big square-shaped patch across my chest and collarbone. It’s not too much of a problem, although I look like I missed a spot while bathing if I wear a v-neck, or anything with a lower than crew-neck collar. That’s all fine though, and it will fade with time.
I just have a handful of Herceptin treatments left, and I’m done with scheduled treatment altogether! And my hair has grown back enough for me to have bad hair days frequently! Anna, I’ll be giving you a call soon so you can whip my poor confused locks into shape.
My lymphedema is not really under control, so I’m going to have to get (even more) serious about dealing with that, and find some time (and $) for more physical therapy treatments. The swelling isn’t too bad at the moment, but the pain is getting worse, and it makes my right arm essentially useless, even for little things like writing more than a couple sentences by hand. One of the best things I can do for my arm is not lift heavy things, but more on that later. I’ll also need more lymphedema sleeves and gloves (very pricey) as mine are getting stretched out and not snapping back into shape anymore.
The Bad
The side effect that is having the biggest impact on my life right now is fatigue. It just seems like it should have lifted a bit by now, but it keeps getting worse. Part of the problem: I went back to school full time in January, and that may have been a bit too soon. I was determined, and I decided that cancer had sidelined my life long enough. So back I went. Full time. Why? Because I hadn’t been challenged enough lately? That semester kicked my ass, and by the time it was over, I felt like I just wanted to sleep for a month. (I did manage to pass all my classes, but I have never in my life been so happy to get a C.)
But no rest for me.
Aaron graduates with his Master’s Degree at the end of this quarter (that part isn’t bad, in fact it’s awesome!!), which means we need to be out of the school provided apartment, and get one of our own. So house hunting commences. And packing. And job hunting. And how do you get an apartment when you don’t have a job yet?
Also.
Mom is moving back to Alaska to live with my brother, and somebody has to pack up her apartment (hi). She wants to be completely out of her apartment by next week, then she will live with us a couple weeks until we hit the road to drive to Alaska.
The Good
Did you catch that “WE hit the road” part? Yeah, Gem and I are driving up to Alaska with mom! So Aaron can finish classes (teaching AND as a student), hunt for an apartment if we haven’t found one yet, hunt for a job, and finish packing up the house while the baby and I are on vacation. Then we’ll move into the new place as soon as we get back, just a few days before our vacate deadline for this apartment.
I’m really excited about this trip, and I have so many old friends in Alaska that I dearly miss and can’t wait to see again. Most of them haven’t even met my daughter yet. Brace yourself for this blog becoming a bit of a travelogue in the near future. I’ve been known to take a few pictures while on vacation.
Curious what radiation treatment is like for cancer patients? This post will walk you through one day of radiation treatment for a patient with breast cancer (me).
Disclaimer: It is important to note that cancer treatments are tailored to the patient and their pathology, so there can be quite a bit of variation in the way treatment is experienced.
Here’s a peek into my experience getting radiated for breast cancer.
My first day with the radiation team did not involve radiation at all. On this appointment, I spent the bulk of my time in a CT Scan machine (no contrast) that was used to take measurements that would be used to design my specific treatment plan. They spent quite a bit of time aligning my body into a specific position, with my arms up over my head, gripping a post at the top of the bed.
Then I was tattooed: four little dots, one on each side at the bottom of my rib cage, and two down the center, one right in the middle of my breast bone, and the other, just below the bottom of my breast bone. They also placed a bag of chemicals under my head and shoulders; as those chemicals reacted to each other they formed a sturdy foam that conformed to my shape and would be a cradle that would hold me in this position for my treatments.
It took about a month to get the radiation plan squared away. Then they called me in for another appointment – no radiation this time either, but this was a run through to make sure all of the calculations were in order. On the last field, they discovered that the frame touched my chest, that’s why they do the run through, so they to called in the dosimetrist, physicist and a physician to make an adjustment to my treatment plan. They also gave me my fifth tattoo two inches below my collarbone. The next day I went back for my first radiation treatment.
Radiation is administered every day except for weekends and holidays. My plan was for 28 days, which was six weeks once you fit in the two holidays. The team was amazing. There was always at least two radiation technicians, and usually three or more, involved in my treatment each day. They worked together, double checking every single setting, and making me comfortable at the same time.
Radiation Treatment
The room in which the radiation was administered was behind a foot thick door.
The ceiling lights had pictures, just like the dentist, only the pictures are nicer.
Tools are laid out, and ready to go. Those markers, very important medical devices. These guys scribbled all over me every day.
When I first enter the room, I lie down on the bed and they put a band around my feet to hold them still, and cover me up with a warm blanket. Oh, I love those warm blankets. I fit my head and shoulders into the foam cradle, and there is a post sticking up at the top of the bed for me to wrap my hands around. The form and the post help a lot with holding still. The bed is driven around a bit to line my tattoos up with the equipment, and then to make adjustments for each field of the treatment.
The machine that administers the radiation is also capable of taking digital x-rays. Once a week, treatment started with x-rays to make sure everything still lined up correctly (this helps them course correct in case of swelling or changes in weight during the 6 week course of treatment).
There’s Jerrod, drawing lines on my chest. The lines were actually drawn on to make sure I was lined up correctly while they administered the field.
Brass Bolus
The first two doses of radiation are administered with the use of metal fabric called brass bolus. The brass bolus is used to help trick the radiation beam into focusing closer to my skin rather than deeper into my body.
If you think my breast is a weird shape, sitting up like that while I’m laying on my back, you’d be right. It’s not really a breast. The breast is gone. That’s an implant called an expander that was put in place during my mastectomy, and it makes it possible for me to get new boobs after I’m healed up from treatment. Aaron calls it my bionic boob.
The expander does require some working around when it comes to the radiation treatments. The brass bolus is used, rather than the foam bolus, because it conforms to the shape of the expander better. You can see from the picture below that its a bit slinky and hugs the curves. Once they get it placed just right, they tape it to make sure it doesn’t move.
Once they get everything lined up perfectly, the team leaves the room. There are several video cameras and the room and they can hear me and speak to me, so it’s not like I’m completely isolated. I don’t feel the radiation, but the machine does hum while it’s being administered. Then they come back in, position the equipment to focus on the another area, and repeat.
Boost
For me, there were two positions with the brass bolus, then two more that focused on my collar bone, and then the final shot involved this contraption; they referred to it as “the boost.”. The purpose of this last shot was to put an electron field right up under the corner of that expande.
Much of the time while they were lining me up, the lights were out so they could more readily see the lasers and make other measurements with light that was projected on to my skin.
Every member of this team was so professional, at the same time, they were able to crack a joke, and keep me laughing through treatment. They made it so I didn’t dread going in every day.
Thank You
Today is my last treatment, so I want to take a moment to shout out to the team. Dr. Janice Kim, Dr. Ermoine, Dane, Jarrod, Randall, Lorena, Jeannette, Sue, Jenny, Talina, Tony, Kelly, Christine, Rowena, and Sheree (and I’m so sorry if I left someone’s name out) – thank you so much for taking such good care of me. And thank you for tolerating the photo shoots while you were working.
I hope this post will help ease your mind if you are facing radiation treatment. If you have received a cancer diagnosis and are wondering what you can expect from treatment, you might also check out my post: Walkthrough of Chemo Day for a Cancer Patient.
Encapsulate the year 2010 in one word. Explain why you’re choosing that word. Now, imagine it’s one year from today, what would you like the word to be that captures 2011 for you?
I didn’t have to think very long or very hard to assign a word for this year. Cancer consumed my energy and time, but the one word I would use to describe this year is hope. Hope is what drives me, what gets me out of bed every day. Hope is what I see every time I look at my daughter. Hope is why I subjected myself to all the ick of treatment.
For what am I hopeful? A cure? Of course. And until then, I’d like to battle this cancer back, and not have any recurrence.
I’m hopeful I’ll have many more tomorrows.
I’m hopeful I’ll outlive my daughter’s childhood.
But there’s more than that – I’m 40 now, it’s about time for a midlife crisis. Imagine what happens to a midlife crisis when the universe says this might actually be the end of your life.
I’m a late bloomer: at 40, I’m still working on getting my bachelors degree, I haven’t yet started a career from which I could eventually retire, I’ve never been off this continent, I’ve just been married a few years, and my daughter isn’t even two yet. This mid-life crisis had already been messing with me when I was diagnosed with stage 3 breast cancer.
There is so much I want to do with my life. Most importantly, I want to be the one to raise my daughter, to guide her through adolescence and into adulthood, and to be there for her if and when she starts her own family. I want to get old with my husband. I want to travel around the world. I want to finish my degree – for myself, but also as an example to my daughter. I also want to write a book, and more than that, to make a living as a writer. I’ve wanted to be a writer since I first comprehended that someone wrote the words I was reading when I was in Kindergarten. I have two big ideas for non-profits I want to get started. I want to make a mark on the world. I want to make a difference. I want to make the world a better place.
So hope it is: Hope that I can be here to raise a confident, intelligent, and compassionate young woman, and Hope that I can finish my degree, muster the confidence to start submitting my writing for publication (perhaps even some travel writing from all the adventures The Husband and I will have together), and get the ball rolling on righting some wrongs in this world.
That’s a lot to pack into one little four-letter word.
She had warm eyes and the sweetest smile, but it was her wit that took my breath away. You had to pay attention because her comments were quiet, under-the-breath, but they would make you snort-laugh and shoot your champagne out your nose.
To be honest, I didn’t know her very well, we only met a few times, yet here I sit with a hole in my heart. I wanted to know her better. I intended to get to know her, but we ran out of time, and now it will never happen.
Elizabeth belonged to my support group, the Young Survival Coalition, a circle of friends all battling breast cancer much too young. Daughters and grand daughters, sisters, friends, wives, and mothers of young children – a group of women I embrace, knowing full well that it will lead to my heart break again, and again, and again.
This is where it gets real. You might think losing my hair or the amputation of a breast would make it real, but those are such trivial things when death becomes an issue. I know that in the years to come, some of these women I hold so close to my heart will die. I know I might be one of them. There is so much love in this group, and so much understanding. These women comprehend the pain, the fatigue, the body image issues, the adjustment to life with this monster inside, and worst of all, the fear that someone else will end up raising your child. They live with it, too.
This is the first time since my diagnosis that someone I know died of breast cancer. I hope I never get used to it.
Godspeed E-beth, and love to your husband and children.
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