On August 21, 2015 my life was changed forever when I was diagnosed with breast cancer, specifically triple negative, stage 2 invasive ductal carcinoma, grade 3. I’ve wanted to blog about it here ever since, but immediately upon my diagnosis almost a year ago I felt like I was on an out of control train barreling down the tracks at full speed with no brakes. The cancer had control, the doctors had a plan, and my body was just along for the utterly terrifying ride. I was not able to organize my thoughts or focus on anything else but the cancer until the train stopped.
When I was diagnosed my husband took it stoically, but I cried. He had been telling me since my biopsy that he knew it would end up being cancer; I had managed to convince myself it was probably just a harmless cyst. After all, I was not yet 35, and everything I’d read or heard told me that my years of breastfeeding (many, many years – five children’s worth!) significantly lowered my risk of getting breast cancer. I was nursing my 21 month old toddler at the time (and probably found the lump as soon as I did because I was nursing, but dismissed it for months before seeing my doctor thinking it was just a clogged duct or mastitis). I ate well, I exercised. This simply could not be happening to ME.
Weaning my toddler from breastfeeding was incredibly difficult for me emotionally. We had to stop cold turkey because he could be poisoned by the chemotherapy treatments, but neither he nor I were ready yet. He was not old enough to understand and he cried often. After a particularly difficult time getting him to bed one night early on, I ended up sobbing on my husband’s chest. I’ve broken down a few times since my diagnosis but that night was the biggest and the worst of it.
Almost immediately after my diagnosis I met my team in a revolving door style appointment at the breast health clinic. I sat in a hospital gown on an examination table as one doctor came in after the other to meet me one by one. Some, like my radiation oncologist, I would not see again until 8 months later when I finished chemotherapy with my hematology oncologist and started radiation. Others, like my surgeon, I saw almost immediately as a date for my surgery was soon set. They all met together afterwards to create my treatment plan, and then phoned to tell me what that was. Surgery. 24 weeks (6 months) of chemotherapy. 36 rounds of daily radiation treatments.
Initially, I panicked. We have no family locally aside from my brother who rarely speaks to me. Unsure of how much of a toll the cancer treatments would take on my body or our family financially, and unable to cope with a lack of support as most of my good friends had recently moved away, I reached out to anyone. Several churches were able to help with meals for the first few months, but after Christmas that support dwindled away. A few strangers on our neighborhood Facebook page signed up to help with meals also, but many others accused me of taking advantage. They chided me for asking for help publicly and told me I should be ashamed or feel humiliated. I did. But cancer is a very humbling experience, and I was very sick from chemo almost immediately. The nausea especially prevented me from being able to cook meals for the family but the body pain and fatigue made it difficult to do anything.
I quickly learned who my real friends were, and even made new ones in the process. I also found that the people who I initially thought I would find the most support from, those with previous experience with cancer in their lives, could not cope with my cancer diagnosis and began to put more distance between us. They took my cancer very personally. At first I was hurt and mystified by this. Now having been through treatment myself I also feel deeply on a personal level for everyone I meet who is going through a similar battle. I want to help everyone, to do something for them, yet feel powerless to do so.
I was overwhelmed by the support we did receive. Matthew was able to get some help with gas money getting me to and from my frequent appointments through the Semper Fi Fund. The majority of my friends are a great distance away, but many of them sent cards, gifts, or care packages. I started a GoFundMe Page, and we received 30 donations, the majority from my friends online. Other friends sent gift cards. I could not have made it without the support we did receive.
Again, the donations slowed to a stop shortly after last Christmas, and we are still currently about $800 short of our goal. We have shouldered the financial burden ourselves, but have barely kept our heads above water. We are now debt-juggling and robbing Peter to pay Paul. I am very thankful for the health insurance we do have, but there were still copays and many hidden expenses. The irony is that last year due to the generosity of friends and more than one charitable donation we were able to give the kids the biggest Christmas they’ve ever had, and this year I’m not even sure yet how we will afford Christmas.
One of the unexpected costs from cancer ended up being suddenly needing an entirely new wardrobe. I made it through the first part of chemotherapy without much change, but about halfway through I gained about 40 pounds in about two months. I blinked, and the next thing I knew I had gone up four sizes. For several weeks I did not leave the house aside from treatment because I quite literally did not have anything to wear that fit, including underwear. Several friends donated things from their closets (which was amazing!) but it still ended up being very expensive.
The body image issues have been one of the most difficult things about having cancer. I hate that I no longer recognize myself in the mirror. Occasionally someone scrolls back on my Instagram account and likes a picture of me from a year ago, and when I receive the notification and look at the photograph it feels like a physical punch to the gut. My husband tells me at least I am here to complain about it.
Chemotherapy was hard, but radiation was in a way almost worse. During chemotherapy, I would get injected, go home, have a few rough days, just start to feel better, and then have to do it all over again. But there would always be a few days in between where I felt semi-okay and could get more done. I also had a very good idea of what to expect for side effects and while none of it was fun, nothing really came as a surprise. During radiation I had to be at the hospital every day, and my weeks started to gain a Groundhog Day movie quality of all blending together. It became difficult to keep track of other appointments or things on my to do list. Wake up, go to the hospital, put on a gown, get zapped by the machine, get dressed, go home over and over and over.
It’s also impossible to predict during radiation how burned each individual will get by the beams (some none at all, some quite a lot) so I had to wait and watch as my skin turned into second and third degree burns, all while still having to show up for treatment every day. I truly believe radiation treatment that never ends would be my own personal version of hell.
Through it all, my husband was amazing. He was at every appointment that mattered including every chemo, he tried as hard as he could to do everything I had previously done while still working full time, he often had to solely parent the children while home, he cooked for the family often while separately cooking for me. He dealt with me on chemopause when the chemotherapy put me through artificial menopause, and somehow managed to tolerate me when I became a monster from steroids. All while (mostly) staying positive for me and the kids.
Another huge source of support were my older two teenage daughters, especially my oldest, Sky. She shaved her head with me when my hair first started to fall out after my second dose of chemo. She along with her dad did the majority of the cooking for the kids, and both her and her sister Gwen would help keep an eye on the toddler if their dad was at work and I was too sick to do anything. Sky especially took my cancer diagnosis very hard, because we have always had a very close relationship, and her grades at school this past year reflected that.
Cancer taught me many things. One of the positives (yes there were positives! I tried to find at least one every day, even if it was small) was that cancer has greatly improved my struggle with anxiety. I still have attacks but they are much less frequent. I believe it has something to do with having to focus on just making it through each day and putting one foot in front of the other. I had to stop focusing on the “why” because that led me nowhere. Instead, “it is what it is” became my personal motto and I lived each day with an attitude of gratitude and acceptance.
About a week before radiation ended I asked my radiation oncologist if after treatment I would officially be in remission, and he replied that because my surgery had clean margins and I had no lymph node involvement that I had actually been in remission since the day of my surgery. The chemotherapy and radiation were just preventative measures to make sure it did not come back. On some level I suppose I already knew that, but it felt very huge to hear one of my doctors actually say that I am now cancer free.
Now that I have finished my treatments I’m still waiting for the sense of relief and celebration to come that I’m told by others that I should feel. It is hard to feel that it is over yet; I still have so many side effects that, in a way, it’s still happening. Before cancer I enjoyed hiking with my family and now I am in a wheelchair because my feet can not travel long distances. They sustained peripheral neuropathy, damage to the nerves caused by the chemotherapy. It’s very much like the feeling when your foot falls asleep and then your try and walk on it, I get both numbness and shooting pain along with a burning sensation. Instead of eventually waking up, the more I use my feet by putting weight on them the worse they feel. I can’t make it through the grocery store on foot any more. I can’t stand in front of the stove while cooking and I can’t manage the same level of housecleaning that I did before cancer. And I’m told it could be at least a year, maybe two before it starts to get better because nerves take a long time to heal.
While I might not look the same or feel the same now, I am excited to discover my “new normal” and I am relieved that I can step off the treatment roller coaster. My ultimate goal in treatment was to extend my life as long as possible so that I can be around for my kids, and though I have yet to make it to any of the big survivorship milestones I do feel like I accomplished that. For the next few years I might occasionally worry about it coming back but I refuse to let that worry consume me. I will live my life to the fullest because I am a survivor.