Walk With Me And Breast Cancer

I am going to get my fourth PET scan next month. I guess I never paid 100% attention to the pre-scan instructions before, as I figure as long as I fast for twelve hours I'm good; I was needing a glass of water that morning and did a quick google search to see if that was okay. To my surprise, there is a lack of consensus on how to prepare for this scan. One hospital suggests a low carb diet and nothing 6hours before, while another prescribes no exercise for two days plus a low carb diet the day before. My own hospital suggests no food or drink for four hours and refrain from glucose containing food. While there's no recommendation that those affected by cancer should follow a low carb diet indefinitely, I'm a bit bothered by these pre-scan suggestions.

Studying the effects of food on the body is so tricky. We don't eat just one food unfortunately. We eat combinations. However, given these PET instructions, I’m thinking about what any carbohydrate containing food does to my body. Am I feeding my cancer cells? The research isn’t very definitive. In the meantime, fasting may not be a bad idea. How can you say this to a foodie?

I've been on Halaven now for four months. Hard to believe it's been almost a year since my lymph nodes were affected, actually spreading with the previous medicine. My last PET scan marks a slowing down of growth, some nodes even shrinking. How I've wanted to hear those words.

Still not clear though. Constantly need to keep up on things. Xeloda left my toe nails thin and brittle. Other women before me tell me it will be a year before they become healthy again. My hair, thinning to the point of pretty much no hair, is starting to grow back due to a break in treatments and my dosage down to 60%. I only get 1.1 milligrams. Can you believe that? Only that much. So tiny, but can do so much damage.

The oncologist is talking radiation now. Giving it one more kick. Better than chemo maybe. Gosh I'd like to quit these drugs. Should I be celebrating?

I don't know.

There I am, that little boat in the water, trying to keep upright. Almost finished with my second round of Halaven. Whether its working to shrink down the tumor under my arm, I don’t know, but it seems to be getting smaller. No other symptoms except I unfortunately lost my hair after only a mere two weeks. It became a bit overwhelming for me when in the shower, after teaching yoga, the hair just rained down over my face. It felt as if I was swimming in seaweed and it wouldn’t let up. The doctor said my hair would thin. But really, who wants to walk around with skalp showing through strands of hair?

So, here I go again. My eyebrows and lashes are still intact, as well as other parts I guess. Just the damn hair. Oh well, I guess I get to grow back those fun chemo curls. I loved that. Just takes a long time. Other than that, I’m just tootling around on my new bike to work. I have to post of picture of that new beauty. Yeah, got my old job back. That’s another story.

Yeah, I'll admit it. I expected to come back in August with glowing reports of NED. No Evidence of Disease. But I didn't. I had to take a break from putting my feelings down. Isn't this supposed to be a fight that ends victorious? There wasn't supposed to be an epilogue. Merely yearly reports of a glowing healthy body.

But I'm not there yet. Six months of Xeloda only to find out there is no improvement. Instead only a creeping growth in my lymph nodes. Nothing past the margins of what used to be my breast, so all other places holding fort.

Next comes another drug, Halaven. The thing about this stage, is that there is no time limit. At least, when I initially started chemo in the “good old days,” I received a number, happily skipping along to each countdown. Now, there is no time limit, only until you can’t stand the symptoms anymore or there is no improvement.

As proof, here is the aftermath of Xeloda. It’s graphic. Sorry. My hands and feet take a beating and will most likely lose my big toe nails. At least with Halaven, one doesn’t worry about hand and foot syndrome, only neuropathy which can lead to nerve damage. My poor hands and feet. When I come out of this, I will treat you to the best mani-pedi and slather you with oils never imagined.

I start Halaven today.

My apologies for making a promise of returning in August but not keeping it. I won't beat myself up, though. You may have heard that I was on an amazing and wild adventure. Nine weeks of yoga teacher training in Acapulco. Read about it here if you wish. Pushing myself to limits I never knew was possible. I never cried, laughed, danced, and sweated so much. Sometimes we do these things to feel alive, after having dealt with months of hospitals and drugs, one just needs to do something different. It was the hardest nine weeks of my life, but the first time I was doing something for me. But, this entry is not about that experience. Little did I know that the nine weeks of training prepared me for something else.

It happened on the 27th of June, the day after I finished with teacher training. My right side was swollen, puffing up so much that it hurt to lift up my arm. I reasoned, overnight flight, fluid balance, change in humidity, too much massage, all sorts of things. But I found a swollen lymph node under my armpit. I let it go. I was home and knew there couldn’t be anything else that could happen then. I was facing the unavoidable for a little while.

And then, August came and left me running. Tests, biopsies, scans, doctor’s visits, and oh yes, registering for unemployment. That word again, cancer. In my lymph nodes where the breast used to be, and creeping under my collarbone. The same type of cell as before, or rather, perhaps it never went away in the first place. Drug resistant perhaps. I am so happy that it hasn’t creeped in anywhere else.

Regardless, I’ve decided to become more militant now. Eating to boost my flailing immune system with a burgeoning list of foods that are set aside for the moment. Dairy, sugar, bread, white stuff, all out. My juicer has become my new friend. Meditation has become a new part of my life. 

Since then, I’ve been on several rounds of the drug, Xeloda, which is designed for metsies like me. Scans showing signs of shrinkage and my T-lymphocytes rising with each maintenance test.

See my new trick? I’m learning how to create word gifs in Powerpoint. And onto other new chapters in my life. This blog will be on hiatus until August or when the mood may strike me to write about BC again. I wish I could say never, but as long as the oncologist will be chasing me for the next 9 years, I guess I can’t run away.

Thank you all for following me and being a source of support for me. If I could have been of service to you somehow, then every word has been worth the write.

Dear students,

I know I’m breaking my own rules by being inconsistent with my theme, but I had to post somewhere, and you have shared part of my breast cancer journey regardless of whether you knew it or not.

You were the reason for getting out of bed when all I wanted to do was stare at the ceiling. You gave purpose to my day and paid me with patience at my crazy attempts to play business at usual when all I wanted to do was to hide away.

I couldn’t have ask for a more generous class to end my last days. You will never know how much of a gift it was to be surrounded by your positive energy.

Thanks for hanging in there. Know that I’ve got your backs. And good luck on the end of your journey. It will be difficult but you will pull through.

Breathe in breathe out

If ever I need a mantra, it is today. My last day of teaching. You may recall I lost my job last year, but I need to work for my severance pay. I don’t know what’s worse, getting let go immediately or this long and slow death over four months. Luckily I’ve been on partial leave, but it sucks to be forced to stay home after chemo, so this was the alternative.

A boob at every door

You know the morning rush. As my husband opens the front door to leave:

B: What’s this hanging on the doorknob?

Me: Oh, that’s just my boob. They told me they’d deliver it. I guess they just hung it there.

Like fresh baked bread. At least, that’s how it used to be at my in-laws house. Alas, no more.

I guess if you lose a little or gain a little, your foob doesn’t follow along with you. I’ve noticed my fakie getting bigger over the past months and realized it’s time to size down. Sigh. We get a free resize within our first year thanks to our national health care. And a replacement each year the next five years. Now I know why women amass several. That’s great for a country with the highest worldwide prevalence of breast cancer.

Anyway, I thought I would post the size difference between small and even smaller. Don’t they look like slugs? We have lots of them here in Denmark. They stop after that size I’m pretty sure. I guess I’ll keep the old one for whenever I travel to the U.S. For some uncanny reason, I gain a few pounds when I go home. Too much eating and sitting I guess. I’ll call that my U.S. breast. The other one on the left is the Danish one, for when I’m running around and riding my bike and not eating the foods that I eat in the U.S.

I know. Some of you are thinking, “Ah Chalida, couldn’t you have been a little less cliché?” But no. Only to tell you that I really get it now. I only understood the phrase in an esoteric way, as in time as a state of rebirth if one can imagine.

Let me tell you. I was in yoga class the other day and just had a funny thought. Since my diagnosis, I’ve been so antsy, more than my energetic antsy self, because I’ve been fretting about the time I needed to reach to survive the next milestone – one year. I’ve been so used to achieving milestones that I suddenly realized in the middle of Wind Removing Pose, “What if I become happy about the time I’ve been alive so far, instead of worrying about the time I have yet to reach?”

My friends, I can’t tell you what a revelation that was to me. So much so that tears were streaming down my face. No bother. It’s hot yoga anyway, so doesn’t matter. My face is wet with either tears or sweat.

No one ever told me that hair would be a menopausal concern. I’m thankful that the hot flashes have subsided to a couple a day. Sleep has returned and I think I’m as lucid as ever, yet my family still groans at my rank sense of humor and inability to tell a story in any coherent way.

But this hair growth business. I’ve always considered myself to be fairly light on body hair and proud of a thick mane. The hair on my head seems to be growing in, but thinner to me as if straining to cover my scalp.

The facial fuzz however is new. I am sporting quite a set of sideburns. Someone tell me how to reduce my DHT. Yes, they will disappear into the curtain of hair I envision in a year, but now, they are well, visible. My kind hearted daughter tells me I could get a job as an Elvis impersonator. Nice.

Better shine my sequins. Or maybe I could audition for Cats.

Perhaps life or fate has a way of protecting you in some odd way. Graduation is one of my personal favorite celebrations, but this year, my last, was colored by interruption. Out with the old I guess. My brave face faltered in the end. I lost it at requests for group pictures.

If a hard to schedule geneticist says yes to a one hour meeting, then you take what you can get. A quick exit for me. I am no wiser as a result of this conversation. My lack of familial patterning, the mutation location on both BRCA 1 and 2 mind you, all turn up as flukes of nature. How much do we know about potential nutrient gene interactions? Still not enough.

The greatest fight is survival and thus my friends, I have decided to present myself once again on the chopping block and will have my ovaries removed. The good thing may be an oophorectomy increases survivability in us TN gals. Now I find this ironic as this cancer is non respondent to estrogen anyway, but we’ll have to have a read about the mechanism more closely.

But, how do I feel? So what if I’m not having any more babies, we still need our hormones. We kinda need them for things like maintaining bone density, joint and epithelial lubrication, skin turgor, heart disease prevention. Stuff like that. Aya, the only thing I can think about is De Niro. Well, lucky for him, he doesn’t have to worry about his ovaries.

It’s a hair thang

It’s week six since my last chemo and finally, a shadow of fuzz is starting to grow. The texture is fine, baby soft. Much unlike the coarse, thick hair I am used to. Perhaps that phase comes later. Regardless, I feel as if my life can now start. A positive sign of renewed growth. Funny how that little thing changes one’s perspective.

I’ve even caved and bought various oils and vitamins to encourage hair growth. Pantothenic acid, B vitamins, castor oil. My nails are especially benefitting nicely. However, there’s a saying that one should never watch a pot of water boil. Watching hair grow is worse. I drove my family members crazy with my daily, “Do I have hair yet?”

It’s interesting how cultural mindset affects the workplace. In the U.S. taking time off due to stress or illness is seen as a taboo, and fear of job loss an associated anxiety. In Denmark, it’s an expectation. The expectation is so strong however, that it makes it almost impossible to overturn.

I’ve had many people at work ask me given my condition and layoff, whether I was planning on taking time off altogether. Here’s the thing. Perhaps if I was healthy, I could count mental duress as part of the package and stay home and surf the net and go onto interviews like some of the others at work who were let go. The last thing a cancer patient wants to do however, is stay home after chemo. There’s a growing body of research showing returning to work provides sense of purpose, sense of well-being and contributes skills to the workforce. The under 60 survivor population is unfortunately becoming more present and that means workplaces need to consider them seriously.

Countries such as Sweden, the U.K. and the Netherlands protect workers from firing while on sick leave. The U.K. even considers cancer to be protected from work discrimination from the time of diagnosis and get this–continues for the rest of one’s life.

To ask whether I will take a sick leave after undergoing more than a half a year of treatment is rather insulting and insensitive. Folks like me want to live, dammit. I want to scream to everyone that I’m still here. But no matter how loud I am, my words fall on deaf ears. It’s almost as if I should go on sick leave because I can’t fight the stigma of people assuming I’m calling it quits.