Yesterday I spent the day manning the door at a wine-tasting representing 16 different local wineries. Every year, this event chooses a different charity to which the proceeds are donated. This year, the beneficiary was the Seattle affiliate of the Young Survival Coalition, which supports pre-menopausal women with breast cancer.
Most people, as they came through the door, were thrilled to learn that the proceeds of the event would benefit @YSCSeattle. One woman, however, was not. She took exception to the fact that this charity focused on the needs of young women. “It’s all the same!” she insisted. I started to launch into the standard spiel, when she fixed a look on me that clearly said she would not hear more on the issue, and any further discussion was unwelcome. I let her pass with a smile, and turned my attention back to the door.
Since she wouldn’t hear me then, ya’ll get to hear me now. I’m here to tell you, it’s Not the Same. (Just let me be clear here: these opinions are my own, I am not speaking as an agent of YSC Seattle.)
It’s not the same
Cancer affects everyone differently, and it’s a devastating diagnosis regardless of age. I don’t know exactly why this woman took exception to the age focus of the Young Survival Coalition. I would have asked her, had I been able to engage in conversation; short of that, I can only guess. Perhaps she felt it was an issue of ageism, that young women are perceived as more valuable than older women. I can imagine her frustration if that is the case. But understanding how a young woman’s breast cancer is different from an elderly woman’s cancer reveals issues that are much more complex. An elderly woman’s life is just as valuable as a young woman’s life, but the issues they encounter as a result of their cancer are quite different.
We go through a number of different stages through the life cycle, and cancer affects people in each different stage of life differently as well. A three-year-old diagnosed with breast cancer may relate better to other toddlers with cancer than a group of 30-year-olds or a bunch of 80-year-olds. Regardless of where we are in the life cycle, we tend to relate better to peers within our own age group who have similar experiences and challenges.
The truth is that the vast majority of the services provided for women with breast cancer focus on elderly women. Aside from those sponsored by the Young Survival Coalition, I was the youngest by a good 20 to 30 years at most of the cancer related activities in which I have participated. Young women with cancer have different needs, socially and medically.
Lets talk about that for a minute
Young women with breast cancer tend to have much more aggressive cancers that are diagnosed at a much later stage, meaning it’s more frequently deadly.
Most studies exclude women under 40, meaning those with the more aggressive cancers are not included in much of the breast cancer research.
Well, that’s a little frustrating.
There are other issues as well. What happens if you are diagnosed with cancer at the height of your career? When women still have to work twice as hard to even approach equal pay with men, adding a cancer diagnosis significantly impacts your ability to make a living. And with health insurance tied to your job, that further complicates things. Sure, there’s FMLA that is supposed to protect your job, but that’s only if you work for a big company. And COBRA extends your coverage if you can manage paying 103% of the full cost, on top of your co-pay and the 20% the insurance doesn’t cover. These rules are there to protect employees, but it doesn’t always work. There are ways around them, and corporations can afford lawyers, employees can’t.
Then there is the whole issue of saving for retirement. We had to empty out our retirement accounts at 40 years old to get through my year of cancer. That means we’re starting over from scratch, zero retirement saved up at this moment. We’ve already accepted the fact that retirement is just not going to be an option, we’ll just work till we fall over.
Now, imagine the single mom trying to balance a career, raising her children, and cancer in light of all that.
It’s not the same
And it helps to be able to discuss these issues with others who have gone through it as well.
Then there is the sex issue. I’m not so naive as to assume that elderly women don’t have sex. Considering that I hope to live long enough to be an elderly woman, I’d like to believe there is plenty of good sex involved. I’d also like to think that in my 80s my husband and I will be celebrating our 50th wedding anniversary. I could be way off here, but I imagine that the impact of a mastectomy on a 50 year old marriage might be a little different than for a woman who just got married, or is planning a wedding, or still looking for the love of her life. I understand that is a huge assumption on my part, but I think it’s one worth considering.
Now let’s talk about fertility. I don’t know how 80 year old women feel about their fertility, or lack thereof, but 20- or 30-somethings with a rapidly-ticking biological clock tend to think about it quite a bit. To have it suddenly and abruptly threatened or destroyed adds another layer of stress to the young woman facing a breast cancer diagnosis. Once you’ve survived cancer, your dreams have to be rewritten. Adoption? Sure, for those who are willing to adopt out to a cancer survivor. But don’t forget that cancer has already depleted finances, so the exorbitant fees charged for adoption are even more difficult to overcome. Surrogacy? Also an option, provided you are financially able to preserve the eggs before treatment and pay for the fertility services and the surrogate after treatment.
Most women diagnosed with cancer at an older age have adult children. That is a completely different situation from a woman who is diagnosed with breast cancer while she is still breast feeding her baby, or worse, while she is still pregnant. Imagine having to decide whether to proceed with chemo during pregnancy, or postpone it until the baby is born.
My breast cancer negatively impacted my daughter’s health. We had to emergency wean her for the mastectomy, and she lost two pounds; that’s a huge loss for an infant. It was several months before she was really thriving again. After the mastectomy, I couldn’t pick her up either, compounding my feelings of guilt while my baby was failing to thrive. What got me through this difficult time with my sanity intact? Being able to connect with other young women who had been through what I was going through. Being able to see that it is possible to raise bright and vibrant children while going through this dark experience made all the difference for me.
A room full of elderly women with breast cancer would never have been able to help me get through this in the way that the young survivors did.
It’s Not the Same.
And I’ll bet an 80 year old woman would not be very comfortable sitting in our support group either. She might have trouble finding someone with whom she could relate as well. The Young Survival Coalition doesn’t focus on age out of disrespect for elderly women, in fact reaching old age is one of our goals. We focus on age because young women are an underserved demographic of breast cancer survivors, and this is a way to get them some sorely needed support.
A year ago I was blissfully ignorant
A year ago my baby was still a baby, and I was just a new mom trying to do it all
A year ago I was clueless that something was trying to kill me
A year ago I was a little frustrated with the pain of breast feeding
A year ago I figured it was just mastitis – again
A year ago I made an appointment to see my doctor
The next day I went in
“I’m not sure that’s mastitis – I’m ordering a mammogram”
Five
Long
Days . till that mammogram
“Hmmmm… dense tissue, lets try an ultrasound”
“Is it cancer?”
“I can’t make a diagnosis”
“What else could it be?”
“Well, that’s just it… . let’s do a biopsy”
My favorite chemo buddy, Gem, accompanied me to my Herceptin infusion on Friday.
We also brought along a horse (of course), and some coloring materials.
I made several attempts at taking a picture of us together where I didn’t look stoned or have my eyes closed
no luck.
but this picture just cracks me up – what WAS she looking at? And my chins could be used for counting lessons.
We piled string cheese, cookies, apple juice and magazines together and had a picnic right there on the bed. If you have to get chemo, and hopefully you don’t, a picnic in the middle of the bed is not a bad way to spend the time. (Also, don’t try to take your kid to chemo till you’ve had several rounds of chemo and know what you’re getting in to and how much your child can handle. SCCA, where I get my treatment, provides individual rooms for patients rather than bunching them all into on big room.)
About the Herceptin: If you are confused because several months ago I triumphantly proclaimed that I was done with chemotherapy, that’s understandable. Technically I am done with chemo. Herceptin is actually a biological agent, and (thank goodness) doesn’t have the debilitating side effects of regular chemotherapy. But I still call it chemo, because it’s easier than describing the difference. It’s administered the same way and by the same people as the chemo treatments..
The type of cancer that I have is HER2+, which is an extremely aggressive cancer with a high rate of recurrence. The one good thing about HER2+ cancer is the development of the drug Herceptin, which is able to specifically target the HER2+ flagged cancer cells, meaning there’s no wholesale assault on the body. Herceptin does not leave me nauseous, or fatigued, or cause pain like the other forms of chemo.
The big downside to Herceptin is that it is hard on the heart, so hard that I have to have a MUGA scan every 3 months to measure my heart functions. I just recently re-started the Herceptin after having to take a break because of reduced heart functions. The work of the medical oncologist seems to me as much art as science – a delicate balance combined with trial and error. It’s really amazing what they do.
Every single one of my New Years Resolutions have already been derailed, in the first six weeks of the year.
My resolutions weren’t anything revolutionary or out of the ordinary. Not even all that difficult really, with the exception of that 33 grams of fat thing (multiple sources recommending this as a means of preventing a cancer re-run). That one is REALLY difficult.
Exercise daily
Become skilled at yoga
Keep daily fat intake under 33 grams per day
Eat 7-9 servings of vegetables per day
Take at least one picture every day
Get my house organized, and keep it looking nice
So what’s going on? Why can’t I stay on track with these relatively simple and straightforward changes? Well, aside from the fact that I’m a full time student, and I have a toddler that climbs on me like a monkey all her waking hours, and I’m still recovering from 2nd degree radiation burns over half my torso, I’ve had a few writing gigs lately as well as some other opportunities to learn and gain experience doing exactly what I want to do for a living. Mama’s been a little busy. Maybe, for starters, I over-committed myself. Maybe I need to give myself a break.
So what to cut? Most of the items on the list above are recommended to prevent a recurrence; the house, well that just needs to get done. Obviously I can drop the picture a day idea, but that leaves 5 things – major changes for a 15-hours-a-day-on-the-computer-while-eating-junk-food type of girl like me. Bear in mind that the vast majority of the computer time is spent on school.
I read a wonderful article a few weeks ago about creating sustainable change in our everyday lives. I really wish I could remember where I read it; I would give the author some link love here. The article stated that in order to make a real and lasting change, we need to make one change at a time, make it really stick, before adding the next change. Over the course of the year, devoting 6 weeks or more to each individual change, we can create sustainable change in several areas with a much higher degree of success than the “I’m going to change everything all at once” approach.
Change is not something you do once and then get on with your life. It takes practice. You fall down and then you get back up again. Over and over and over and over again.
So that’s what I’m going to do. I’m going to decide to make a change, but I’m not going to change everything at once. I’m starting with the eating 7-9 servings of vegetables per day, and if I don’t hit my goal one day, I’ll keep trying the next day. Once I’ve built a practice of eating vegetables, I’ll add working out every day. That doesn’t mean I’m not going to exercise between now and when I start working on that resolution, it just means that the focus on habit building for that particular change will be delayed.
I’m still a bit overwhelmed by the amount of kitchen time eating that many vegetables will take. I’m now accepting applications for volunteer prep cooks if you’re interested in chopping vegetables.
You are starting to learn the power of manners, and the call and response of some of our social conventions. You’ve had Thank You down for a little while now, and you are getting so much better with Please. It’s so cute when you say please, you clasp your hands together and look up at me with those big, earnest eyes. Oh, I’m such a sucker for that look. But the one that really cracks me up these days is your discovery of the bless you response to a sneeze. I can tell when you’re going to do this, because you smirk and get a twinkle in your eye first, and then “ah… ah… choo!” you fake sneeze to see if you can get someone to say Bless You. You especially love doing this in elevators.
You are a very compassionate little girl. You’ve latched on to the word OK, and it holds a great deal of meaning for you. If I cough, or trip, or make any kind of an owie type of sound (my official line is that I don’t curse in front of you, even if I stub my toe) you ask me if I’m OK. “K? K? K? Mama, K?” You will keep asking until I say “Yes, I’m OK.” And then you give me the biggest relieved smile. Of course you also expect me to ask you if you’re OK if you stumble, or choke on your milk. Not that I wouldn’t anyway.
This carries over on the playground, too. If another child is crying, you’re right up in his face asking if he’s OK. But these poor kids don’t understand what you’re asking them. The other day you dropped your babydoll, Molly, and then you got down on your knees, bent down and kissed her, and asked her if she was OK. She didn’t answer, either. “K? K? K, baby?” Oh, my heart.
Grandma introduced you to Cheetos
You are so genuine; you’re not consumed with what others think of you. I hope you can hold on to that attitude. It can be really tempting to get caught up in the opinions of other people, and even put on an act to pretend to be the person you think they want you to be. I’ve done that myself on occasion, and I don’t recommend it. That approach leads you away from happiness, not towards it. Being true to yourself is the big part of being happy.
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.
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