In case the title didn’t give it away, I have fantastic news! I am officially 100% cancer free!!!!!!! I had planned on drawing it out a bit, but I couldn’t help but give away the punchline first! I had been on my new regiment for a month before he asked me to do a few blood work tests. A few meaning 34. I had just enough blood to comply, and left the office feeling more than a little woozy. After impatiently waiting for two weeks, he emailed me the numbers and percentages. I stared at the page for hours, trying to decide if 2.5 was good for one and 3,000 might be a little high for another. Finally, I emailed him and asked point-blank when he thought I might be cancer free. I was promptly emailed back this:
Archive for the ‘My Story’ Category
“It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real, you can’t be ugly, except to people who don’t understand.” –The Velveteen Rabbit by Margery Williams. According to this, cancer has made me a real girl! I feel honored that I am made of tough enough material to withstand this sort of love from the universe.
I am constantly on the prowl for the silver lining in my days and today is no exception. I have completed round three of chemo and am still able to type and chew gum, but not much else. It feels like fatigue has settled in for the long haul but I’m content to sit on the floor for hours, playing with my daughter. The house has seen cleaner days, but who needs more than a pristine spot on the couch to blog from? I have those days where a walk on the beach is possible (thankfully,one of my my partners has very short legs that allow me to walk slowly!) and I even got a few bicep curls in!
Of course, baby number two decided that Braxton Hicks contractions fit into this picture of exertion, so the workout was quick. I’m realizing that I can’t be exactly who and what I was before cancer but that’s ok. My hair may have been loved off by chemo, and my joints may be loose from carrying two babies but I feel real. I feel connected to the community of men and women who have gone through similar circumstances. I feel strong every time I pass a chemo milestone. I feel excited when I think about meeting this new baby. I feel blessed every time I get to lay down for a nap in the middle of the day. I feel adored when my husband kisses me and rubs my feet. These aren’t things to be taken lightly. I know one side of the coin is filled with exhaustion, nausea and an overwhelming “to do” list, but with searching for the silver linings in each, I find myself blessed beyond measure. So, bring on the shabbiness and the eyeballs falling out! I’ll give you a list of positives that will make your head spin! Because being “Real” is worth all the hard work.
When I shaved my head 3 weeks ago, my husband used a #1 on the clippers. I got quite a few compliments on my haircut. I think some people thought I was an extremely hip, edgy pregnant lady who wanted a cool summer hair style. Then, it started growing back! I actually told my husband that I better start losing my hair soon, or I’d be pissed that I cut it for no reason. It turns out, the universe was listening to me that day. It started with a few stray hairs on my pillowcase. Then I started pulling at chunks, which came out with ease. I must have known somewhere in the foggy depths of my brain that buzzing my hair and losing my hair were actually two different steps in this process, but it still surprised me that I was actually going to be bald. It wasn’t horrifying or heartbreaking, but merely startling. I looked in the sink at all these tiny little hairs and couldn’t help but be thankful that they weren’t part of really long strands of hair. I am very accepting of this process, but it would’ve been shocking to see a sink full of 18 inch long pieces. I’m good with 1/2 inch pieces falling out. Then the falling out turned annoying. It felt like I got a haircut every day and all those prickly little hairs would poke me from the collar of my shirt, my pillow and the straps on my bra. I am obviously one to take matters into my own hands, so I decided to eradicate the situation. I went onto our deck and started pulling what was left. I used the reflection from one of the windows to ensure even baldness. When my husband came home from the grocery store, he exclaimed with laughter, “What in the world did you do??” (this is the cleaned up version for readers of all ages and my mother). It turns out, my “mirror” didn’t quite do the trick and I looked like a patchwork quilt. It was drastic enough that he immediately felt the need to take pictures from every angle to show me my handiwork. I was never promised that this journey would be pretty, and this was definitely one of those moments. It turns out, not all of my hair wanted to fall out at once. It could take up to a week and until then, those patches became my new punk rock look. We couldn’t help but laugh. This was one of those moments that I could choose how I handled something so obviously out of my control. I chose laughter and a very cute beanie. I feel that anyone who has to go through this shouldn’t feel alone, so I have decided to post the pictures. They may not be for the weak of stomach or those who can’t ever imagine losing their hair. I have found that a forthright honesty is the best way to share my story and I want to be open about every part of this journey. So, here is that honest portrayal for those who are following:
I think my doctors had a strategy. “Keep her busy with excessive appointments and blood work and she won’t have time to work herself into a tizzy about starting treatment,” they said in a booming “car commercial” voice. I realize this most likely isn’t the way it happened because my main doctors are women, but having Minnie Mouse say it doesn’t have the same authoritative ring. Regardless of which voice was used, I was in every doctor’s office and hospital having every kind of test done at all times of day, which left me breathless and brainless. I was getting an echocardiogram and CDC blood work. I went to a homeopathic nutritionist and filled prescriptions at CVS. I went to my pre-op appointment and had my glucose test done. By the end of this week, I felt qualified to start giving medical advice to other patients in the waiting room. However, the doctors succeeded. I was almost looking forward to starting treatment so I could finally rest. The appointments would be over. I could actually sit in a quiet room on a comfortable chair for two hours with nothing to do but read a book. Of course I’ll have poison being pumped into my system while doing this, but even that didn’t sound too daunting as long as I could take a nap.
Of course no week is perfect, and a small curveball was thrown my way. I have been deemed “unveiny”. This made-up word means I don’t have those huge, snake-like veins that look like someone drew on your inner arm with a blue sharpie. I suppose there will come a day when I am grateful that it doesn’t look like I have track marks on my arm from all the vein and needle hide-and-seek games the doctors would have had to play.
Instead, they have opted to insert a port. What sounded like something simple actually turned into quite an ordeal. This special port will be inserted into the left side of my chest, hooking its little tube into a major vein. It turns out that there isn’t some magical way to insert this port and surgery was added to my list of things to do. We’re talking “I’ll be out for at least an hour” surgery. But that’s not the worst part. I have to stop eating at 8:00 am. Not a drop of water or morsel of food can pass my lips. I won’t actually be getting surgery until about 4:30 and coming back around at 6:00 AT NIGHT. And THEN, I’m whisked upstairs to have the baby monitored for an hour to make sure this little champion still knows how to karate chop. Here’s the problem: anyone who knows my mother or sister realizes that the women in our family have a serious issue with being hungry. In a matter of minutes it goes from sad to cranky to “horror-show,” with innocent bystanders scared for their lives if they don’t give us food. And this is on an average day. Now add seven months pregnant and I don’t even want to think about the attitude I will pull with anyone that tells me to eat yogurt after fasting for ten hours. I’ll start acting like someone who’s been drinking gin on an empty stomach, cussing and throwing things. I know this hasn’t happened yet, but I’m setting the stage for worst possible scenario, which may not be far off from reality. There is a chance I will be asked to leave the hospital and never allowed back.
This could turn into a very exciting day after all! There could be police reports of physical abuse to doctors, patients escaping to Del Taco in their hospital gown with their IV chasing them or even a yogurt being dumped down the shirt of my anesthesiologist. I promise to report all after I’ve eaten my weight in carbs and organic cherries, my latest and greatest craving. Send out that good energy today, because those doctors will need it as much as I will!!
If you don’t have a phone plan with plenty of unused minutes, a cancer diagnosis means it’s time to invest. The day after my diagnosis, the calls started rolling in. We had only told immediate family, so there was the “next day” check-in, making sure I still felt optimistic and was able to get out of bed. There were the calls from my midwife telling me that she was calling everyone she knew for a good oncologist recommendation. There was the call from my doctor’s office letting me know that other doctors would be calling me. I was even given a nurse navigator, an infectiously sweet woman, who started calling on a daily basis to make sure I was staying away from self-diagnosing myself on google. I started answering all these blocked calls from unknown numbers hoping one of them wouldn’t be the LA Times asking why we didn’t renew our membership. All the doctors had unlisted phone numbers, initially keeping me from being able to hunt them down. I think they wanted to make sure I wasn’t the kind of patient that would call them at 2:00 am and ask if I could get double D’s if I needed breast reconstruction surgery. And of course I wouldn’t ask such a thing! I already googled that question 🙂
I ended up with an oncologist that came highly recommended from someone else highly recommended at UCI. I didn’t have a whole lot to go on as far as friends going through breast cancer and giving me referrals. My friends haven’t quite hit this “normally” post-menopausal stage (which, as it turns out, is becoming more and more of a pre-menopausal situation). But I’ll get into statistics and numbers later!
Here’s the thing about doctors. From my first diagnosis phone call to my appointment with my oncologist, they both felt it necessary to tell me the worst possible scenario. Here’s the thing about me. I’ll run with what you give me. So, when I started hearing “surgery first” and “decisions about a mastectomy need to be made,” I already began envisioning my double D’s. In actuality, I started envisioning how incredibly exhausting the thought of major surgery was while pregnant and watching my now-walking little girl pull every book and DVD off the shelf while I reprimanded her from my bed, where we both knew I couldn’t move from. A vivid imagination, you say? Why yes, I am blessed and cursed with one of the best!
Here are a few initial steps needed to start the process of getting healthy:
• I had to go in for genetic counseling. They want to find out why a spring chicken like me is diagnosed with breast cancer. I have a 15-20% chance of having a gene mutation called the BRCA gene (stands for breast cancer, which is the first medical abbreviation I’ve heard that is understandable!). After this *cough, cough* $4,000 test – if it comes back as positive – a breast removal surgery is considered my best option. There is a 60% chance I’ll get breast cancer again in my lifetime without it, and those aren’t very good odds. Here’s the clincher though. If the test comes back negative, it doesn’t mean I don’t have a gene mutation, it just means they may not have the technology to find it. True, my chances are much lower of getting cancer again. The real beauty is when insurance steps in. With a gene mutation, I will always have the option for a mastectomy. I can have it now or when I’m done with treatment and feel ready to take on the task of multiple surgeries. I can even have it in a few years if I feel so inclined. If the gene mutation test comes back negative (which is more likely), I have to get the mastectomy with my first surgery or forever hold my peace. Holding my peace means if I decide I don’t like my chances of getting a recurring case of breast cancer, I will be paying for my breast removal and all reconstruction. So that $4,000 genetic mutation test turns into a drop in the pan and my *cough cough* turns into fainting at that price tag. This has a two-week wait time, so I’ll be a pro at thumb twiddling by the time they send my results!
• I met with my distinguished oncologist, who outlined the probable schedule. Cutting all the doctor fluff (ie long medical names that use every letter in the alphabet), the basic run down was surgery – chemo. If it hadn’t spread, we could induce labor early and start chemo after the baby (like morning sickness after birth instead of during!). If the tumor had spread, then chemo would happen as soon as I would heal from surgery, while I was still pregnant. After chemo, then radiation would happen if I’d decided to have a lumpectomy. Then I would be onto the joys of hormone-blocking medicines for 5 years. So, you’d better believe I’m having a killer 40th birthday in the south of France after my 30’s are done!
• My oncologist brought my case to a “specialist” board meeting (about 20 doctors weighing in, looking for the best and safest route to go for treatment). I requested that my midwife be allowed to attend, as she’d be the only one in the room that actually knew me and my preferences for the unusual (like a natural birth). I’m told the meeting was packed to the gills and all the doctors wanted a stab at this exciting case. After much debate and discussion, they made a conclusion: start chemo first. The surgery seemed like a pretty big task for the little human that I’m growing and they also felt that the tumor hadn’t spread yet, so we needn’t jump on the nip/tuck bandwagon too quickly.
Amazingly enough, that was all in one day! This team of doctors was moving and shaking and making sure the word “procrastination” wasn’t uttered by anyone. I found myself more than a little exhausted and in dire need of some R & R. Thankfully, I had written foot rubs into our wedding vows. I felt calm amidst the lightning speed at which everything was moving. It meant treatment was on the way, with a healthy recovery on its heels. Needless to say, it isn’t the summer I had anticipated. But who knows… maybe I’ll get a book deal out of it!
I can’t claim to be a very timely person. I feel like there is a 15 minute grace period in almost all situations. My husband is now pulling the old “we need to be there at 5:00”, when we actually need to be there at 5:30. We’ve almost missed flights, boats, appointments and the surprise part of a surprise party because of my internal clock.
However, when my doctor told me to call him at 3:00 pm for my test results, you better believe not a second after 3:00 pm went by before I called. He was too good to record a voicemail greeting, so all I got was an automated monotone male telling me that no one was available to take my call. I decided to give him a little space and didn’t try calling again until 3:04. Then 3:07. Then 3:08. Somewhere between 3:11 and 3:16, my husband suggested that we get out of the house. He also recommended giving my trigger finger a rest and leaving my phone behind so I wouldn’t be tempted to leave the sound of my grinding teeth on his voicemail.
The day was beautiful and we walked our daughter over to a park that sits right above the beach. It was a needed break from my anxiety and the people watching was better than tv. It was one of those rare situations with no phones, no camera, no technology of any kind. It felt freeing until one of the worst/best things happened.
We had sat our little girl on the grass to pick through dirt and bugs. The next thing we know, she’s up on her two chubby feet and proceeds to walk for the very first time! She walked all the way over to a far more interesting section of the park, adorned with teenage girl’s iPhones, candy wrappers and probably cigarette butts. My husband and I sat stunned, watching our little girl cross such a big milestone. I inform him that I might as well not finish her baby book since I can’t document this momentous event. I’m really looking for any reason to get out of listing every present she received at her baby shower.
We returned home at 5:00 pm with enormous Cheshire grins on our faces and a baby girl who is quickly growing out of the baby stage. We each have 5 missed calls and a text asking us to call my doctor back. I sat down with a pad of paper and pen and quickly hit redial. He answered and in an easy, conversational tone, informed me that I have stage 2 breast cancer. He continued in this friendly manner, telling me that it’s the most common type, it’s not growing too quickly and my chances of survival are excellent. I remember asking questions and assuming a friendly demeanor also, as if we were discussing restaurant choices for dinner. After a lengthy conversation, we ended the call and I looked down at my pad of paper that was meant to hold all the information from our call. Instead, I doodled chains of bubbles and wrote my name in different scripts. I realized I was terrible at cursive and fantastic at 5th grader penmanship.
He had no concrete answers about the next steps in surgery and treatment. My next job was to find an oncologist that came recommended from doctors I trusted. I added “sincere” and “exudes good energy” to the list of necessary requirements. My sleep that night was surprisingly sound. There was nothing for my brain to try to work out. I knew I had cancer and I knew I would get through it. I knew I had a husband that would move mountains for me, as well as rub my feet on a daily basis. I knew that I had a kick-ass daughter. I drifted off with the memory of her wobbly first steps and felt a quiet peace come over me.
It started as a lump while I was nursing my daughter. I insta-googled all possibilities and was immediately reassured that the chances of lightning striking the northeast corner of my chimney was more probable than me getting cancer. My midwife suggested getting it checked out because no one wants a lawsuit on their hands and I adore her too much not to listen. The doctor who did the ultrasound gave me a rather annoying pat on the head and said it probably wasn’t anything but why not rip a chunk of tissue out just to make sure? As appealing as that sounded, I opted for a vacation in Portland to watch my sister graduate from college and to eat lemon coconut saffron ice cream every day. I came home to our mail carrier delivering a certified letter requesting that I make my biopsy appointment or risk possible jail time. The jail time is a slight exaggeration but I did start to feel the gravity of the situation. My next simple check up became a mammogram (not fun when you’re 6 months pregnant!), another ultra sound and a painful biopsy. Yes, I cried and yes I blamed it on my hormones but that male doctor obviously didn’t realize the effects of stabbing a wildly hormonal woman on one of the most sensitive parts on her body. His request for me not to cry and placing a tissue over my face was slightly offensive but now makes for a better story.
I was hoping for a really impressive ace bandage wrap that would get me out of dinner and dishes duty, but all they gave me was one of those teeny, tiny circle band aids. The kind that you give kids when they haven’t really hurt themselves that badly but want to pretend it was a big deal. I picked up a Real Simple magazine (personal fav) while I waited for the doctor. Unfortunately, I turned to the worst article ever to find its way into a breast diagnostic center. The title was somewhere along the lines of “Why Men Leave Women with a Terminal Illness.” Of course I decided to read the whole depressing article. Dr. “Violent Biopsy” was taking his sweet time, which afforded me the space to read this article about a man called “Dan” and his bastardly ways. He left his wife the day before she started chemo, informing her he was having an affair and moving to the other side of the country. With that conclusion, my doctor re-entered and informed me that the lump looked suspicious and that he was going to push the test results so we would get them the next day.
Upon arriving home from my appointment, I blind-sided my husband and told him he better not leave me if “suspicious” turned into “cancer”. He assured me that I am stuck with him no matter what I tried to pull. I concluded the evening googling things like “suspicious looking” and “is it possible that a pregnant 31-year-old can get cancer??”. There are only so many credible medical websites and once I ran out of those, I started in on the yahoo answers, where people who have never gone to medical school answer complex and scary questions about life altering illnesses. Word to the wise: wait ’til you talk to your doctor and only use yahoo answers if it’s a question about cooking or how to get ketchup out of your white sofa.