I am so ready to get on with my life, but first I want to take a moment to say thank you to everyone who helped get me through the past 16 months since my diagnosis.
1. Gem
Look at that face. She is such a powerful motivator. And sweet, too.
No matter how rough things got, she was enough to get me out of bed – Even if that meant just going to the living room, and cuddling up with her on the floor.
It’s amazing how much she has grown up through this ordeal. Here she is just a week before I was diagnosed:
2. My Husband, Aaron
Aaron is my biggest cheerleader, the one who kept telling me that I CAN do this. He was the one who held me when I cried, and told me he would still love me no matter what, and made me feel sexy even missing a boob.
He wouldn’t let me get depressed, and he fills my life with music.
3. Mom
My mom was the one I could count on to drop everything, and come running at a moment’s notice
4. Friends who formed a little army of volunteers
Kristen, Mary Jane, Diane, Sommer, Carrie, Candice, Tim, Mel, Sharon, and Perry – I can’t begin to describe how much you helped me. From bringing meals, to babysitting Gem, to washing dishes, to just sitting with me or taking me outside for a walk, you really helped to carry me through.
5. The young women of the Young Survival Coalition
It’s one thing to experience sympathy and empathy, but nothing helps like meeting others who understand because they’ve been there. I have written about the Young Survival Coalition before, and I’m sure I will do so again and again and again going forward. These girls are my confidants, my hand-holders, my glass of wine with a side of giggles, and my sneaking out from a vegetarian retreat to bring back a side of bacon.
5. Debbie Cantwell and The Pink Daisy Project
A breast cancer survivor herself, Debbie started The Pink Daisy Project to help other young women deal with the overwhelming facts of everyday life that pile up while battling this disease. She came to my rescue by sending grocery cards so I could buy diapers, and hired a cleaning crew when I was too sick to deal with housekeeping. Debbie is truly a hero. Stay tuned: I’ll have more to say about Debbie in future posts. 🙂
6. Delia
Dee is one of my oldest friends, and she’s been there for me through thick and thin. When I was diagnosed, she flew out to be here with me during my mastectomy. She helped whip my house into shape while I was recovering, and watched the baby, and helped in too many ways to list in one post. She’s another one of those people that I can count on no matter what.
7. Old and New Friends; Some I’ve Never Met
Social media is an amazing phenomenon, and it has had a profound effect on my life. It’s brought me back into contact with old friends I haven’t seen in more than two decades, and it has introduced me to new friends, some I speak with every day, but have yet to meet face to face. These friends have followed me through the ups and downs, provided encouragement, hope, sometimes a little gift or cash, an ear, a shoulder – and often at 3 in the morning, when normal people aren’t available.
…
So now I’m done with treatment. I’m still contending with some of the side effects. I have some neuropathy, the fatigue is still slowing me down, and I’m typing with one hand because my arm is bound up to treat the lymphedema. But these are little, non-life-threatening issues, and we can deal with that.
Right now, my heart is just full of gratitude.
Now, we are looking forward. We are looking forward to Aaron getting a job. We are looking forward to me finishing my degree. We are looking forward to Gem being potty trained, and learning to read, and getting ready for pre-school. We are looking forward to a long, happy, and healthy life together.
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.
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.
This morning I heard the story of Aleisha Hunter, who was diagnosed with Breast Cancer when she was three years old. I had to rush right home to hug my baby.
When I was diagnosed with breast cancer, I understood that my daughter’s risk for developing cancer was increased, but it didn’t occur to me that she could develop it as a toddler.
That’s an odd thing for me to say; since my diagnosis, I have been drumming in to my friends and neighbors, and everyone with whom I interact online, that no one is too young to get breast cancer. I tell people not to let a doctor, or anyone else, be dismissive of a breast lump or discomfort, or suggest it couldn’t be cancer because of your age. It was easy for me to say a 20-year-old is not too young to get breast cancer, but my mind did not allow me to extend that caution to toddlers.
I spend a lot of time thinking about this diagnosis and how to manage the fear, particularly in reference to my daughter. How do I teach her to live her life at full speed, while still teaching her to take care. I don’t want to teach her to be fearful; I don’t want her to live a life of timidity and fear. On the other hand, I don’t want her to be dismissive of danger. Where do you find that balance? I have thought about teaching her to do breast exams, but the time frame I had in mind was a whole lot closer to puberty. Actually, that probably still wont change. But I want to find ways of discussing breast cancer and breast exams, not as a way of looking for a monster that is to be feared, but just a part of self care, like putting on a seat belt when you get in the car, not an anxious event, but one you wouldn’t overlook either.
But, as in other aspects of parenting, I think the best way to teach her to not let fear take control, to teach her to balance boldness with prudence, is to be a good example.
Hmmm….
I’m nearly done with treatment. I have two weeks left of radiation and then six months herceptin and then I just get on with my life, hoping the beast does not return. I can’t say it will be back to life as usual, because post-cancer life involves a bit of looking back over your shoulder. Post-cancer life means scans every six months to see if the cancer is regrouping for another attack. Post-cancer life means every ache and pain takes on a new meaning, it means asking “Am I being a hypochondriac, or would ignoring this ache be irresponsible?” It means paying extra attention to what lawmakers are doing – will their actions restrict my access to insurance or health care? Heightened awareness is a necessity. The trick, it seems, is to find a way to prevent that focus and attention from becoming a fixation and translating into fear.
And I’ve got to figure this out quick, because I have a little girl watching my every move.
My heart goes out to Aleisha, and her family. She underwent a full mastectomy, inluding lymph node disection, and is expected to make a full recovery. Thinking ahead to those awkward years of puberty and breast development, I hope she is able to develop and maintain a strong and healthy body image, and that she too finds a way to balance boldness with prudence.
I also hope that by spreading this story we can help save more lives. Breast cancer is not a disease of the aged, it can strike at any time. Please check your boobies.
A year ago I stood at the mirror, glaring at my left breast which was starting to show the strain of breastfeeding my baby. The good boob, the one on the right, remained as firm and perky as it was when I was 18. I couldn’t have guessed that all that perkiness was supplied by 11 centimeters of cancerous tumor.
I now have a scar that runs from under my arm almost all the way to my sternum. I have 5 little pin-sized tattoos that are used to line me up in the beastly machine that irradiates my skin – which is now burned rough and red from collarbone to abdomen, and breastbone to armpit. In the place where my breast used to be is an implant called an expander (Aaron calls it my bionic boob) with the mission of stretching the skin to hopefully make it possible for doctors to manufacture a new breast once I complete treatment.
My left side is scarred as well, with the tell-tale 2-inch horizontal line just below my collarbone where the medi-port was installed for my chemo infusions. Cancer survivors recognize each other by this this little scar that peeks out from any kind of V-neck top. The port shows through my skin, and my husband and I joked that with these implants and my bald head, I should have dressed up as a Borg for Halloween. Beneath the skin and ribs, my heart has been damaged by the chemo drugs as well.
The memory of wishing that my left breast was more like my “good” boob now brings a chill. But the left breast will soon become a scar as well, as I’m having a second mastectomy with my reconstruction this summer. The type of cancer I have has an extremely high rate of recurrence.
My attitude towards these scars is changing. Each scar tells a story, and since I’m still kicking, each scar represents a challenge I overcame. I’m learning to accept them as a kind of private little merit badge. Having a supportive husband helps. And since the perky boob, the “good” boob, turned out to be evil, it’s worth mentioning that just because something is pretty doesn’t mean it’s good.
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