This past summer SheWired contributor and our friend Tatum de Roeck was diagnosed with breast cancer. The co-host of Cherry Bomb and of her own interview style show on SheWired T-Time with Tatum began blogging about her experience shortly after her diagnosis. Via her writing, she shares the intimate details of taking breast cancer one step at a time in a blog that is incredibly emotional and moving but always infused with Tatum's lightning-quick wit and her ability to remain positive.
Tatum has graciously agreed to share her story with readers as we embark on October, Breast Cancer Awareness month. We will be posting her blogs on SheWired throughout the month.
20 Pounds or Death– written on October 13, 2011
It was a beautiful sunny morning and the only thing I had to do is get dressed and go to the doctor’s office for a follow up. There was no one I needed to impress at the doctors, no after-doctor parties to attend, no cameras around to document what I looked like and yet I was in a full-scale wardrobe melt down.
I’m not a stranger to this phenomenon. I have spent a larger part of my life, than I want to admit, wailing in front of my wardrobe in the throes of what I call ‘fat attacks’. It is when all my clothes either don’t fit or make me look frumpy, this inevitable leads to a ‘life attack’ where I feel I have failed at everything because I can’t afford cute clothes and I can’t work out enough to look good in what I have. This leads to anger, tears, bargaining and on a good day promises that I will do better in curbing the fat and life failures if I can just find an outfit. On bad days I feel so disgusting I won’t go out in public
Having a fat attack while on chemo is like a fat attack on crack.
I am officially, certifiably, not just in my head but in my waistband fatter that I have ever been. I also don’t have hair. On a tall slender lady that could look exotic; on a lean athletic body could that look militarily sporty; on me - I look like a squat little man.
Without a head covering I look ridiculous in girlie clothes like a guy who just stuck on a dress for a Halloween costume. If I put on earrings with my bald head I look like a bad, bad drag queen. I am scared of wearing mascara in case the action of putting it on makes my eyelashes fall out. I am scared of wearing foundation in case I will sweat it off and make it patchy with my numerous hot flushes. I am frequently nauseous so I don’t want to wear anything that constricts my stomach or frankly anything that is uncomfortable including high heels.
The average woman with breast cancer gains anywhere from 10 to 20 pounds during treatment. The reasons for the gains are numerous. Each round of my chemo is 2 pounds of liquid being pumped my system. For each cycle I am given steroids to counter the bad effects of the chemo. Steroids encourage weight gain and for me they make me insatiably hungry. The nausea also makes me want to eat, it sounds weird but if feels like as long as food is going down it isn’t coming up. The chemo and subsequent low blood counts also causes extreme fatigue, which means less exercise. I try to still walk and do yoga but everything is harder and it isn’t anywhere near my usual level of activity. Plus, and here is where is gets really really fun, the chemo causes menopause. The hot flushes mean I am rarely asleep for more that 2 hours at a time. I haven’t slept a full night in months.
Lack of sleep also causes, you guessed it, weight gain. Plus the menopause is causing my body to think it is shutting up shop on babies so there is no need to look cute to attract someone. I can feel my body start to shift to look like a woman in her 60′s. Dinner lady arms and indistinct hips from stomach here I come.
When you add up all the factors it is actually amazing women only put on 10-20 pounds.
My closet was not designed for headscarves and clothing combos. My outfits were meant for hair. With stupid pieces of cloth on my head I either look like a fish wife, an orthodox Jew, an old Greek lady in mourning for her dead husband, a middle eastern middle-aged mum out doing her shopping, an alternative white girl trying to look like an African lady and not pulling it off, a pirate, a Romanian peasant and if the scarf is too tight I look like a thug in a scull cap. The one thing I can’t look like is me.
I knew a wig would help but on that sunny day with temperatures nearing a 100 degrees combined with my own ‘private summer’ of hot flushes it just wasn’t feasible.
I knew logically that all this is a small price to pay for life, but my hormones, lack of sleep and a lifetime of wanting to look cute and presentable made me feel otherwise. I cried for 3 hours. I threw clothes on, threw them off, picked them up and threw them down. I tried to start with a scarf and match an outfit, then grab an outfit to match with a scarf. My room looked like a stage-5 hurricane had just come through.
I felt like I had just fast-forwarded 25 years of my life. There is nothing wrong with being 60 but I don’t want to feel it at 36. I haven’t had time to adjust to feeling older but my body is just racing there on warp speed. I felt old, unattractive and helpless to fight it.
The truth was as much as I wanted to look cute, stretch-waisted pants sounded delicious, oversize Chico’s flowy blouses would be perfect. Me and my best friend have a pact that if one of us ever shops at Chico’s it is all over and the other has to shoot them. I hated myself for feeling that I might just give in and be frumpy. I hated myself for being too fat before this all started and then I just hated myself. I imagined years and years of hating myself of always feeling old and never having sex again, I wondered if the choice of 20 pounds or death was really all that clear.
I was so late for my appointment I had to just grab any body-covering garb quickly. I put on the wig, a cleava-licious dress and a big pair of glasses and ran to my doctors. I can usually always girl up and stop crying when absolutely necessary but not on this day. I cried all the way into my appointment, and all the way out of it. I only stopped crying when I ate an amazing vegan French dip sandwich.
I got home, took off my wig and changed into yoga clothes. They have the stretchy comfortable waist, by wearing them there is the promise of impending activity, no make up looks appropriate with it and there is absolutely no need to wear heels.
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Cansah– written October 31, 2011
A friend of mine told me about a way to distinguish between two types of cancer. There is ‘cansah’ said in a up inflection and ‘cansirrh’ with a heavy tone.
‘Cansah’ is a one-time thing. It follows a linear pattern that takes a patient from diagnosis, to treatment, to survivorship and eventually it all becomes a distant memory of, ‘hey remember that time you had cansah’.
‘Cansirrh’ is the opposite. It can lay dormant and then reappear in a new location. It can become a completely different type of cancer that have the doctors scratching their heads. ’Cansirrh’ carries with it the terrible fear of one day hearing the doctor say ‘you may want to get your affairs in order.’
People tell me all the time that I will be fine. How I hear that word ‘fine’ also depends on the inflection. A friend of mines husband didn’t quite know what to say to me but I could see by the intake of breath that he felt he needed to say something. He put his hand on my arm looked me straight in the eye and slowly said “You’ll be fine”. It was perfect. I felt loved and I believed that he wanted the best for me. The down inflection on the word fine gave it weight and seriousness, showing an understanding that the journey isn’t easy but he had every faith in me getting there.
Then there is the other kind of ‘fine’. This one comes with an up inflection, is said speedily and often with head cocked to the side. ’You’ll be fine, my grandmother had breast cancer and she is fine, my neighbor had breast cancer and she’s fine” I call these people ‘finers’. The true test of whether or not I am talking to a finer is if they would use a more sympathetic tone if they knew I had period pains. They make breast cancer seem light and breezy.
This makes it virtually impossible to say anything but nod and agree that I will be fine. I feel like it also confuses the issue of being fine in the future and being fine with it in the present. I am not looking for sympathy but I do feel that walking around saying everything is up tone ‘fine’ is doing a disservice to all those other people going through this. I don’t want to have some one else have to hear in a breezy upbeat tone ‘my friend Tatum had it, I saw her during treatment and she was fine.’ My fear is that if I say anything contrary to a finer it will look like I am complaining or worse yet, that I would have committed the unthinkable crime a person with cancer can commit; not being positive.
I want to believe I have up-tone ‘cansah’ and that I will be down-tone ‘fine’. I have moments when I believe it completely and I have other times when I am petrified.
It is like being on one side of a beautiful field, filled with long green grass full of buttercups and daisies. In the distance are blue mountains, babbling brooks and adventure. All I need to do is walk to the other side of the field. I set off on my first step, which is when I am told it is full of land mines. It is still possible to walk across the field unharmed but suddenly the ability to take each step is increasingly filled with fear. Especially when I realize other people are walking across the field and I can hear explosions.
Here are some things that to me sound like land mines
1. I read a particular treatment study of people with Stage 1 and 2 cancers. The study only accounted for 90% of the people. I was irritated about the missing 10 %, and then I remembered, they had died.
2. Being in a Look Good, Feel Better makeup class for people with cancer and hearing about the woman across from me tell the group she was a 20-year breast cancer survivor. I was so happy to hear that great bit of news. Then she added, “I’ve now been diagnosed with ovarian cancer and I’m 56″. My math skills are usually bad but in this instance worked at light speed. She was my age when she had breast cancer and probably thought she had ‘cansah’. It hit me that the threat of cansirrh might never go away.
3. Every time I hear “my mom died of cancer,” “my dad died of cancer,” and “both my parents died of cancer.” I wonder if my unborn child is going to say one day say one of those sentences about me.
4. My radiologist told me that if breast cancer returns there is a one in 4 chance of dying from it.
5. The days when it really hits home there are odds on my life for five-year survival.
6. The nights when I lay in bed believing that I will be all right but remembering all the people I have met and heard about that had their cancer return, spread or be found in a new location. They are no different to me, there is no bubble of separation that keeps me safe, it is just random.
7. The moments when I speculate as to whether or not I have the BRACA cancer gene and I wonder what I will do if the test comes out positive.
8. When I think of the future and I hope I don’t have medical PTSD every six months while I wait for my breast and ovarian screening results. I hope I am not one of those people who suffer with permanent side effects of the chemotherapy.
9. When I hear about people who looked fine on the outside but underneath it all never got over the fact they had breast cancer. Never let their husbands see them naked, never felt like a whole person and never regained their self-esteem.
I know that none of these things might happen to me as I journey across the field but I don’t want to go arrogantly charging across with a banner that reads ‘I’m going to be fine because I’m me and people told me so.’ I also don’t want to be paralyzed with fear. On some days I take a step while looking up at the beautiful sun and I feel great. On others I look down and am scared I might die.
Although I might not get to say it to finers, this journey is not up-tone fine. Although I want more than anything to hear, ‘Hey remember that time you had cansah?’
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Results– written on November 1, 2011
I met with my surgeon yesterday to do last looks on the lump before I go into surgery.
The doctor, who is normally quite chatty especially about organic gardening, fell silent while ultra-sounding my breast. I’m getting increasingly adept at reading ultrasounds especially after I gave up looking for a baby in the black and grey fuzzy screens. I couldn’t see any ominous blobs lurking on the ultrasound so I guessed her silence wasn’t a bad thing.
Usually the surgeon takes a picture of the ultrasound, measures the tumour and we compare it to how big it was on the previous visit. Not this time. I asked her about it and she said there was nothing to measure. It is still in there, but now it is so small and indistinct it no longer has a readable length, width or depth. The last time it was 1.3cm in length and it didn’t look like it would go away completely so the doctor didn’t put in a little tiny plastic flag inside on the site. At the end of the scan yesterday she said, “We should have put in a marker.”
A few months ago I had a bi-lateral breast MRI that confirmed my cancer in the left breast and also gave recommendations to follow up regarding some suspicious activity in my right breast.
On Wednesday I had the same MRI and although I don’t have all the official results, the MRI specialist called my doctor and said it looks great. The cancer in my left breast has had a “substantial decrease” and is now a “non-mass like enhancement,” which is a fancy way of saying it is no longer a lump so it couldn’t be measured. In especially fantastic news the right breast is free and clear!
The bad thing about chemotherapy is that it attacks the entire body; the good thing about chemotherapy is that it will attack cancer anywhere in my body. Since I am at a slightly elevated risk for ovarian cancer, which is hard to detect, this chemo could have also knocked out any cells even thinking of dividing down there too.
It would be fab if all this meant I could get time off treatment for good behaviour, however I still need to do surgery, chemo, radiation and then take a drug called Tamoxifen. The surgery will be to take out the last of the cancer cells as well as a clear margin. Pathologists will analyse the cells, thats when the doctors will decide if I need a second surgery and how much more chemotherapy to give me. My surgery date for my lumpectomy is the morning of November 15th.
I am going to celebrate today by buying myself a yummy expensive health drink.
You can follow Tatum on her blog here.