I’ll do it a thousand times again

June 7, 2017, my (hopefully) last chemo treatment ever, came and went. I completed 6 rounds of TCHP and 12 more rounds of Herceptin. I’ve been doing this every 3 weeks for 1 year. Add 3 surgeries, probably a hundred needle pokes, nearly a million dollars, and over a trillion tears and it ends up being quite an eventful year. It must sound like a monumental understatement to say that I’m glad it is over.

I anticipated it being a day of immense relief and joy, like I would have pride in accomplishing something so hard and celebratory not have to do it anymore. Instead, I felt tired, ready to get on with it, and very, very worried. Treatment is over. There is nothing more I can do to keep cancer from coming back. In fact, if the cancer comes back, it will be Stage 4 and terminal. Instead of feeling elated at my last treatment, I felt solemn as this realization sunk in.

Immediately, my busy mind got to work cataloging coughs and aches and blaming a metastasis. A sore spot on my spine landed me back at Radiology for a bone scan.

Negative. Likely a result of the Shape of You Videodance class at Ballet Austin. Or was it that fall on the boat? Maybe it was that heavy, new bathroom door installation.

Remember, Rach, life is getting back to normal. Sore backs are normal for someone who dangles from aerial silks, stumbles around on boat docs in various states of sobriety, and flings herself across dance floors in 7 inch platforms.

Worrying about this for the rest of my life is just simply not going to be sustainable. I never worried about being hit by a bus or murdered before cancer so why start now?

When my busy mind starts to get the better of me, I remind myself that I did it. And I’ll do it again if I have to. I’ll do it a thousand times, for myself and my parents and Cindy and Cinco, for all the people that helped me this year. I’ll worry about it when it happens, not before.

Fortune Cookie Wisdom: Accept, Feel Better

A trip to my jolly dermatologist proved useful after all. My hair is falling out because of something gloriously juicy to say aloud: Telogen Effluvium.

This is a form of hair loss that is common after a traumatic event such as cancer treatment, surgery, even pregnancy, high fever, or a serious case of the flu. It is not the same as the hair loss associated with chemotherapy, though chemo may be contributing to the “trauma” my body has experienced. Basically, it is just serious hair shedding caused by a disruption in the hair’s growth phase.

Normally, hair grows from 2-7 years, then it chills for a few months, and then falls out to be replaced by a new hair. In my scenario, the 2-7 year growth phase was disrupted and the hair was pushed into its chill phase and now the fall out phase a little early and all at the same time.

The good news is that the shedding should end soon, based on how much easily fell out when the doc tested it. Also, it is pretty much consistent over my whole head so no bald patches will show. In fact, the doctor predicted that no one would likely notice (except me) since you have to loose 50% of your total hair before it becomes noticeable. He didn’t think that would happen to me. He believes the cold caps did their job perfectly: protecting the hair follicle from chemo circulation and preserving my hair.

More good news is that if the hair is falling out, it is already replaced by a new hair, though under the skin still. It should emerge shortly.

Hair grows about 1/2 inch (or more if you’re really healthy) each month so while it may take a while for my hair to be thick and pretty again, it should regain some volume within the next few months. It may even grow back wavy! Did I hear mermaid hair?!

The doc suggested I eat 2 servings of protein every day, 3 if possible, and make sure I’m eating food with lots of iron. When you’re healing from surgery or chemo, the body diverts vital nutrients like protein and iron to more important areas of the body that need repair than hair (things like heart, liver, brain, and skin). Hair is considered quite a luxury in the pecking order of nutrient allotment turns out.

Doc also said that Rogaine is a good option for me. Rogaine helps to grow new hair once it has fallen out. Normally, Rogaine is something you have to use ongoing because it originated as a solution to male pattern baldness. As soon as you stop using it, the hair it helped to grow falls out. Since I don’t have a type of hair loss that is ongoing, this isn’t a risk for me. Mine is a one-time incident. So, I can use Rogaine to speed up my hair growth but I’m not signing myself up for a lifetime of costly scalp treatments. My new hair won’t fall out after I stop using it because it is meant to stay in place on my head anyway.

While there isn’t anything I can do to make the hair stop falling out, making sure I have LOTS of good nutrients should help my new hair grow back quicker and in better shape.

So, first, I take big, deep breaths. Then, I eat a handful of almonds. Then, I keep doing life like a boss. It is very hard for me to feel helpless. But, I suppose learning to accept that some things cannot be controlled is a useful lesson.

KMAGYOYO

I’m frustrated. My hair is falling out. My eyelashes are thinning again. I don’t know why. I’m months beyond chemo and surgery. I should be past this! It makes me realize how not past this I am. That dark cloud hovers in my peripheral.

I tell my cancer team about my hair loss. They recommend I see a dermatologist. This is puzzling. By puzzling, I mean infuriating. They sure were good at making my hair fall out. But, making it stop or growing it back isn’t interesting to them. It is the ultimate in passing the buck. It is KMAGYOYO. It made me cry.

I get it. They did their job. I’m not going to die. But now I have to live.

For the first time in my life, the sensations of life and living are distinct. I always used to live to the fullest. I really did. Life and living were one in the same, an effortless marriage I took for granted.

Now I’ve had the experience many only have towards the end of their life…the slow decent into just hanging on, not knowing if you’ll get to come back. Chemo really takes you there. It is unspeakably difficult. The recovery is snail paced. I’m impatient.

The doctors solved my one big problem but created a million other, smaller problems that I’m now trying to sort through. And I realize that I’ll be sorting through them with just my worries and my calendar. Time, it seems, is the only real cure.

Put It In My Mouth

Let me tell you one serious, fundamental, non-negotiable fact: I love food.

Between the throat-swelling heartburn and malfunctioning taste buds caused by chemo, eating ranged from uninspiring to impossible. It was physically painful to eat at times. A sensation most of us don’t notice after swallowing, I could feel my tender esophagus attempting its wave-like motion to move food down. Ouch! Meat, bread, even my birthday cake was not possible. I choked down over-cooked noodles and ice cream or didn’t eat at all.

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Card from a dear friend that I framed for my kitchen. That’s how much I love food.

When I could eat, the taste of food, even food I love, was severely muted (bland) or incredibly intensified (think mildly spicy became aflame, pickles turned wasabi harsh). Some foods even tasted as though they were spoiled or rotten. Water had an unfamiliar medicinal flavor. Wine was disgusting. Eating, a ritual I have always enjoyed with giddy enthusiasm, became a dreaded chore.

Every 3 weeks, I would feel good enough to stuff my face for a few days and then do it all over again. Chemo’s repetitive torment is the worst.

I’m nearly 3 weeks from my final chemo treatment; the “stuff my face” phase. But, I don’t have to do it again!! A trip to Trader Joe’s yesterday nearly brought me to tears. I bought dill pickle potato chips, chocolate almond trail mix, sourdough, and chicken breasts. I spurlged on charcuterie and expensive cheeses. Can somebody say frozen pizza?! I luxuriated in the aisles with dream-like hypnosis. I went through again to catalog what to get next time and lovingly touched labels like a junkie at a 1970s NYC after-hours nightclub. Glory hallelujah! I can eat again!

For those of you going through chemo or preparing for it, eating will no doubt be a challenge. I’m sorry to say I had to learn some food-related lessons the hard way. For example, just because I felt good enough to leave the house didn’t mean I could order fried chicken with poblano gravy and fries.

Fortunately, some foods were both easy on my digestive track and tasted ok. I went through gallons of ice cream over the last 5 months which may explain why I didn’t lose any weight during my treatment. Strangely, sushi was a pleasant surprise. The soft fish was easy to swallow and the tanginess of soy sauce and roe was a delight. Everyone is likely wildly different in this area. I wish you the best and, most importantly, want to remind you chemo ends and life gets (sorta) back to normal. Last night I made beef stroganoff! You’ll be tucking into your favorite dish again soon too.

Now for a grilled Italian truffle cheese sandwich and tomato soup with a salad and an ear to ear grin.

No Mother’s Day

Cancer has caused me to face a great number of things, mostly all difficult, some unexpected. One thing I’ve found most difficult to talk about is its effect on my fertility. I will not be able to have children after this.

How that makes me feel is still in progress. I didn’t have a strong desire to have children for the sake of them. I’ve always maintained that if I found the person I determined worthy enough to combine DNA to create our superior offspring we’d make those decisions together. I was also open to deciding with my partner to remain childless. I intended to put it out of my mind until such partner was discovered and I did. So, when I was sideswiped with the realization cancer would take that option away I didn’t have a plan.

At first I felt that I should do something so I met with a fertility specialist. He had options, the recommended being find a donor and freeze fertilized eggs before treatment. A less recommended option was to freeze unfertilized eggs. These options took time and/or a relationship I didn’t have.

Finally, there were drugs I could take that would suspend fertility in the hope my ovaries would regain function post-treatment (Lupron was one recommendation). This method would entail a very fast, brutal decent into temporary menopause. I considered it. I even spoke with Livestrong Foundation about financial assistance as fertility treatments are not covered by my insurance.

In a moment of courageous defeat, I simply said no. I was too overwhelmed, too scared, too heartbroken for any more decisions or procedures or drugs.

I told myself I don’t have to feel sad about never being honored by my partner to have our children. I told myself I don’t have to feel left out of the pride I know parents feel. I told myself I might not have been good at it anyway. But, that’s a lie. I would have been great at it.

So, I’ve settled into telling myself that something more terrible than cancer would have happened should I have been a mother. For something to happen to your kid is very likely the most painful experience. In fact, I’ve seen this pain in parents that have lost children. I see it in my own parents’ faces as they help me through my disease. I think of cancer as sparing me that pain.

I also realize time is running out for me and perhaps the parent path was just never in the cards for me. I accept the decisions made in my life without regret, including my decision to value quality relationships and spontaneity above the biological gift of bearing children.

I’ve gotten used to the idea of not being a mother I think. When I’m honest with myself, it is a bit of a relief. I wasn’t completely sure I wanted children so really, the only thing taken away is the option. There are plenty of benefits to being childless, benefits I’ve been enjoying for 35 years. I’m sure I’ll be fine and, on the flip side, I maintain families are made of love and commitment, not just DNA.

One thing that continues to bother me, however, is the unfairness with which parents sometimes treat the childless. I may not know what it’s like firsthand, sure. But I can comment on some children’s issues. I do have a stake in the future of humanity after all and I’m not beyond spending time with young people as a non-parent. In fact, I feel I have a lot to offer.

So, parents, please do not pour salt in my tiny wound by assuming I don’t “get it” because I don’t/can’t have children. You never know who might end up feeling you don’t “get it” when you strike a nerve with someone that had their mother’s day taken from them without permission.

Complain. Repeat.

Halfway should feel a little more triumphant. Instead it just feels like a lot more work yet to do. One thing  I’m trying less of is privacy. I want to try to help others who go through breast cancer treatment with this blog if I can, if for nothing else than an alternative to the endless forum discussions I haven’t found useful. Here it goes.

Heartburn has been threatening me in a merciless way. I’ve never had heartburn before so the sensation is new (as is the prevention and treatment). And this is no ordinary heartburn. The esophagus is literally burned by the chemotherapy drugs. So, simply avoiding flaming hot, delicious Indian curry isn’t going to help.

At first I felt pressure on my sternum that I interpreted as a side effect of Neulasta, the bone marrow stimulant injection I get about 27 hours after chemo to speed up white blood cell replacement. I had heard it could cause bone pain. Turns out, the sternum thing wasn’t bone pain. It was severe, no good, very bad heartburn that made even breathing effortful. They prescribed Protonix, an antacid, which helped during round 1 and 2. I could tell it was getting progressively worse though and by round 3 I was in serious trouble. I couldn’t eat solid food without choking. After many phone calls complaining of my symptoms, my oncology nurse has now prescribed Dexilant which worked overnight like a miracle. My advice is to always keep complaining if you feel uncomfortable. There is no harm in it. You don’t have to feel bad.

Also, don’t be afraid of Neulasta. I almost refused it initially, so terrified was I of bone pain described by others. I have had no bone pain and my blood counts equalize within just a few days of chemo treatment. My body heals. I feel better. It means faster bounce back so you’re in better shape for the following round.

My only complaint about Neulasta is that the injection machine they adhere to my belly keeps fucking up, blinking red or otherwise confusing everyone. The first one did, in fact, malfunction. But, when it works, it has helped me and beats the hell out of living life in a bubble, avoiding friends, pets, and public places for fear of a hospitalizing infection. Try it at least once to see if it works for you.

On that note (and perhaps most importantly), avoid assuming the side effects others experience will happen to you. I had plenty of people try to scare me with tales of their own terrible chemo side effects. It did not help me in any way. In fact, I needlessly delayed bringing up the pressure in my sternum because I had “heard” that sternum pain was expected with Nuelasta. I could have saved myself a few days of heartburn!

Everyone truly is different. I’ve had comparatively few side effects actually and none that I can’t handle so far. I find it better to go forward with less information on side effects and gather it only as needed. Remember, the people on those forums, bitching endlessly about their side effects, are only on there because they are in the worst shape. Those that aren’t in terrible shape are out living life because they feel fine. (Except those that write blog posts on Friday nights…those people are cool.)

In summary, assume you will have no side effects until you have them and then complain about them like mad to your nurses until they fix them. [Drops the mic.]

Suprise! Alcohol didn’t work.

I drink. I drink a lot. I assumed my blood was Kate Moss-thin. No such luck. I developed a blood clot in my left armpit because of the Power Port I had “installed” the week before.

A port is a little plastic device placed underneath the skin of my chest with a direct line to my vena cava. It is where they will administer the chemotherapy drugs.

I was adamantly opposed to such a thing at first. Pictures of them online varied from an obscenely repulsive alien trying to escape the chest wall to a door knob sticking out of one’s torso. I’m an aerial dancer. I live in sundresses. I can’t have strange stuff sticking out of me like a robot for all the world to pity. I demanded a talented surgeon and I’m glad I did.

It really isn’t that bad. I’m scrawny so, yes, it does stick out a bit, maybe a centimeter or so. But, it saves me from being jabbed and bruised by newbie nurses with needles in the arm. Apparently, mine is particularly pretty. I’ve even been asked to model mine around the chemo room.

Blood clots, however, are not pretty. My arm turned purple and felt tingly. It was a little swollen. I could tell it was vascular so it was back to the doctor for an ultrasound. I was terrified my pretty port would need to be removed or worse. Instead, I used a heating pad and was put on Xarelto, a blood thinner that doesn’t have alcohol restrictions.

The only thing that sucks is that is does restrict my exercise. I can’t lift much without aggravating the clot which means continuing my aerial silks classes is right out. I’m crushed by this, especially because I anticipate keeping the port for the full year of treatment. I miss being in the air a lot.

On the bright side, my boyfriend and I had an unforgettable moment at a folk music festival. A drunk bartender asked what the lump in my chest was and I was able to answer without crying. My man gave me a very precious compliment about answering the drunkard with grace.

Every day is an up and a down.