My Latest WTF Moment

It’s sort of difficult running into people who haven’t seen me since I had long wavy hair and didn’t know I had cancer. When they recognise me (and it registers) I feel somewhat apologetic at the shock and horror they experience.

Then the usual happens. After the initial surprise wears off, they ask when I found out and how I am doing and tell me I look great, which is true, of course, so I smile and thank them. Ha ha.

Once in a while I get a slightly “different” response. The latest happened just the other day, in fact. I ran into a lady I hadn’t seen (well I had seen her but from afar and she hadn’t really seen me) since last fall. Let’s call her LB for short.

After LB and I exchanged pleasantries, she touched the side of my head and said “I wanted to ask you about this haircut!” Um, yeah. Je suis très chic, dontcha know. I explained that the haircut was not my choice and then the shock and awe part happened. It happened and happened and kept on happening and there were gestures and hands clapped over the mouth and lots of “Jesuses” and even a few “fucks” thrown in for good measure. And grunts and groans. And a “but you were so healthy!” It really went on for a while. It was like watching a broken fountain: the water just came out in fits and spurts and kind of all over the place. I just stood there waiting for it to be over.

She threw in a “we thought you were making a political statement!” I considered this. Hmm. This might have been a keen assumption had I also been sporting an eyebrow piercing or a fresh tat or had I been (at that moment) worshiping the devil, cultivating armpit braids or ripping up a picture of the Pope or something of that nature. But there I was, sitting cross-legged in my premium denim (no I won’t name names cuz then you will just have to run out and buy the same jeans) and a purple J Crew merino wool sweater (don’t care if you buy that) and flats. And I was wearing my diamond studs and mascara and shit. Let’s just say I wasn’t exactly channeling Sinead or a Nazi skinhead.

“Nope,” I said. Not a political statement. The malfunctioning fountain was interrupted by the speaker to whom we were supposed to be listening and as we turned our attention that way a warm wave of relief enveloped me. Saved at last. (Although during the speaker’s comments there were a few sputters and snorts, but they didn’t really rise to the level of what I consider to be verbal communication.)

Naturally LB wasn’t done with me. The questions started again the instant the speaker had finished. The pièce de résistance was when she looked at me and exclaimed “but I don’t understand; you have eyebrows and eyelashes!” “Yes,” I said. “They grew back. I didn’t have them six weeks ago.”

“Oh my God!” She cried. “What did you do? (imagine the crescendo building….) You must have looked like… a FREAK!”

Really? [Insert stupid Beavis and Butthead breathing noises and nervous laughter here.]

What did I do? Well I wore make-up. And then it was over and the shit grew back. And now here I am, for crying out loud. All freaky five feet nine (okay so maybe eight and a half) inches of me.

I’ve looked back at pictures of myself without eyebrows and eyelashes and hair and I do in fact look pretty weird without make-up on. But that is sort of besides the point, isn’t it, people?

Two excellent thoughts occurred to me during this episode:

No. 1: Thank God I didn’t run into LB while I had no eyebrows or eyelashes, the sight of which might have led to a water show that far outsputtered the one I witnessed.

No. 2: Boy will this be fun to blog about.

Luckily I have a sense of humour and am comfortable with my physical appearance. But here’s a little tip in case you aren’t sure: if you see someone who looks odd because they are bald and/or pale and/or have no eyelashes or eyebrows or you find out that at one time they didn’t have them because they had CANCER and had to have CHEMOTHERAPY for fuck’s sake, don’t say they look, or must have looked, like a freak.

Only am allowed to say that. It’s like people being allowed to make ethnic jokes about their own ethnicity.

At the end of the day I am really proud of my self-restraint. I could say a whole lot of other absolutely hilarious shit about LB now and make some truly witty ironic comments but because I am classy I don’t want to identify her.

Now if you’ll excuse me it’s Friday night and I have to get my freak on.

How to Talk to Someone Who Has Cancer: Take a Deep Breath and Pause

And now for the latest in instructional videos, Randall will discuss how to tawk (that’s Long Island for “talk” for you Indonesian readers who are confused) about cancer… just kidding. But seriously it would be great if he made a YouTube video about that topic. Really? You don’t know who Randall is? http://www.youtube.com/watch?v=4r7wHMg5Yjg Come on.

This is likely a topic that will require several instalments (yeah that isn’t a typo the English spell it with one “l” I know so weird they do same thing with enrol I almost can’t take it). So here are some initial thoughts.

From the time I thought I might have cancer (last December) through my diagnosis (early January) and throughout treatment (February through July) and beyond (now), I have talked to an awful lot of people an awful lot about cancer. It has been unavoidable, and given my propensity for yakking, not surprising. Talking about cancer helps me cope — I am not one to shut things like that inside and hide myself away from the outside world. Putting it out there, and in doing so putting myself out there, has allowed me to feel some sense of control over the situation or at least some sense of power, if not control.

What has struck me time and time again is that people do not know how to talk about cancer. Even other people who have had cancer have said things to me that I really couldn’t quite believe. And it continues to happen all the time. Which is great in a way, because it serves as nifty inspiration for this here blog.

Now before I get into it I want you to know that if you feel that you are being singled out because you remember having said something similar or God forbid identical to what I describe below, you’ll have to get over it and promise not to be offended, horrified, guilty, angry, defensive, defiant or any other useless emotion. In fact I am probably not writing about you or something that you said, so don’t be “So Vain” as the song goes. And if you did happen to say some dumb thing to me or to another person who has or had cancer, don’t sweat it. Just hear me out.

Oh and here’s another disclaimer for good measure: I am well aware that all of the below is just my own personal take on the topic. I bet plenty of people would disagree with me. In fact I invite them or you to post comments disagreeing with me unless your big inspirational comment is that “most people mean well,” because that is the most useless bull shit comment ever and people throw it out there all the time. Of course most people mean well. That isn’t the point. I am not talking about evil here. None of the things said to me that have bothered me was intended to hurt me. I am 100% positive of that. I am just talking about what I don’t like and why.

Okay now I’m going to get into it.

One thing that really ticks me off is when people find out you have cancer and they tell you exactly what you are going to experience. I touched on this in the very beginning of my blog in an entry entitled Assaulted at the Global Festival: Things Not to Say to a Cancer Patient. If you haven’t read that and aren’t gonna I’ll recap: a lady who was herself a breast cancer survivor came up to me at a crowded event and outed me as a chemo patient, asked a lot of personal questions, proceeded to tell me I was going to feel like shit, physically and emotionally and indicated I wouldn’t feel normal for probably a year to eighteen months after my treatment ended.

This was not helpful. She could have been completely correct about all of those things (she wasn’t), but even if she had been, it was not her place to tell me how I was going to feel. Nor did I particularly want to be identified as a chemo patient at this event, for which I had put on a cute outfit and make-up so that I would feel as normal as possible, thank you very much.

Before that episode, shortly before I had even had my surgery, a friend and I did a quick clean-out of my closet. I took the nicest clothes to the consignment store after donating the serviceable yet not resalable things to charity. The owner of the store asked me what I’d like to do in the event that an item didn’t sell. “Would you like to donate it to cancer research?” She asked. I looked at her. “Why yes, I would,” I responded. “As a matter of fact, I would very much like to do that because I have just been diagnosed with breast cancer myself.” Big mistake. That’s what I get for being a blabbermouth. She launched into a mini speech about the treatments I would have even though she didn’t know anything about my particular case. When I made the second mistake of trying to correct her on some points she stood her ground and said she’d had a number of friends go through it and that indeed I would be having x, y and z treatment as she had outlined. That made me wish I had just dropped the clothes off and shut up.

The long and short of it is, a lot of people have cancer. Far too many. But their particular cancer and how they feel, both physically and emotionally, and the treatments they will have and how they will respond to these treatments varies widely. If there is one thing I have learned it’s that this is a highly individual experience. You talk to enough people going through “the same thing” to realise that they aren’t going through all the same things. And you need to be sensitive to that. One person might sail through chemo and another might end up in the hospital with a bad infection for two weeks during chemo. One person might experience a side effect that you never experience and vice versa. And you just cannot know. So you shouldn’t assume.

It didn’t bother me when people told me what they had experienced themselves. It just bothered me when they told me what I was going to experience in specific, sometimes preachy terms. It isn’t fair.

Another thing that thrills me is the whole “I have a friend, relative, etc. who had the same thing and they died.” I am a big girl and I know that cancer kills people. But it really bothers me when the first thing out of someone’s mouth when they find out I had cancer was that their aunt or cousin or buddy had cancer and died. It’s hard not to focus on the sad stories, especially in the beginning. Or at least it was for me. It’s pretty terrifying to find out that you have cancer, and that you are mortal is already going through your head a fair bit. So having the fragility of your life highlighted by stories about people who have lost theirs isn’t really what the doctor ordered.

I have stewed about these things and why people say them. And you know what? I think it’s because people want to find some common ground. They want to say something to you so that you know they are empathetic, responsive. They trot out the dead cousin or the “you’ll feel like shitola for a year” yadda yadda yadda because they want to relate personally to you and to your situation. Not doing so seems unfeeling or awkward. Not doing so isn’t human.

My final pet peeve (for tonight) is when people I don’t know well (or at all) ask “did they catch it in time?” Translation: Are you going to die any time soon? I suppose this isn’t fair of me. I mean, it seems to be a perfectly legitimate question when you find out someone has a life-threatening disease to discover just how threatening it is. But unless you know the person very well or they volunteer information, try to get the answers to these questions from someone else or learn to live with the uncertainty. I have had the luxury of saying to people “yes, we caught it fairly early.” But I know people who would have to say that actually the prognosis isn’t too great. And is it fair to put someone on the spot with this question about how long they think they might be around? Especially if you don’t even know them? I don’t think so. It made me feel as though I was being put into a box: check (a) for going to live and (b) for not going to make it. No. Nope. I don’t like it.

I think that people ask whether you’ve “caught it in time” because they desperately want the answer to be yes. Their subconscious is thinking, let it be yes so that I don’t have to feel so terrible. So I can be encouraging.

It is awkward and just plain painful to hear from someone that they have cancer or some other serious problem, be it a health problem or that their wife just left them (unless they are a schmuck and you think they deserve it — the wife leaving, not the cancer). It is. I often feel sorry for people when I tell them about the cancer. I feel guilty for making them experience the shock of it. It is such a blow to deal someone else. And when they are still reeling from the punch is it any wonder their response might be a bit flailing? Of course not.

What I think would be really great is if people could just get comfortable with a pause. Even a long pause. Take the deep breath before you dive right in. You don’t have to say “the right thing.” There is no right thing. And if you jump right in in order to relate to someone you might inadvertently alienate them. That is certainly true of the people who have told me what it’s going to be like for me as if they know.

At the end of the day, you don’t have to relate personally to it and sometimes you simply can’t. That doesn’t mean you can’t talk about it, but do not underestimate the power of listening. Do not underestimate the power of a little bit of silence. Don’t feel like you have to fill the void. You don’t have to. You can’t fix it. And that’s okay.

Now for all you jokers who plan to comment that people mean well even after I warned you not to, resist the urge or tomorrow I’ll short-sheet your bed.

Carpet Dude

So at the beginning of our street, or the end, depending on how you approach life, there is a small carpet store. In it work two men whom I pass pretty much every day on my way to the tube, the grocery store, what have you.

My daughter Isabel began to wave to the man she sees most often, the younger of the two, many months ago. And now when I walk by this man and I exchange a restrained knowing smile (close-lipped, corners turning slightly upward), and sometimes a little nod or wave.

I have never spoken to him. I don’t know his name and he doesn’t know mine. I know him only as “carpet dude.” Yet he is familiar because I see him so often.

It occurred to me as I hobbled by today (I am not injured I am merely suffering from lactic acid galore thanks to a pretty intense personal training session yesterday — it’s the good kind of pain though) that it’s funny how we see some people so often but never talk to them or get to know their stories. It made me wonder whether carpet dude has any clue what my story is. I certainly don’t know his.

These days when I pass by I am sporting a crew cut. But not so long ago I was wearing a headscarf and before that I had thick, dark wavy hair at various lengths (fairly long at first, then a bob, then a short cut for five days until I went all GI Jane and shaved my head… for more on that story and photos see Cold Cap: From Rapunzel to Rambo). Oh gosh I almost forgot that I also left the house on occasion in a pink wig named Candy Floss (and for more on that and photos see Zero).

I wonder if he noticed. And if so did he figure it out or did he just think that I like to change hairstyles frequently and/or am a real weirdo.

If it weren’t for my kids (the constants in this equation) I figure he might not have known that the lady with long wavy hair, the bald lady and the lady with the crew cut are even all the same person.

One day soon I might go in there and see about a new rug for the dining room and maybe some carpet for the bedroom too. I kind of hate to disturb the status quo of our relationship, however, because it is so amazingly low maintenance and stress free.

If I walk in there and speak to him and look at samples and get quotes and all of that it will complicate matters. God forbid there is some sort of problem with the order. Then I might be forced to avert my gaze every time I walk by. Life is complicated enough as it is.

But I don’t have to decide today or even tomorrow.

Maybe I will just go somewhere else so I don’t have to deal. Interacting with people can be so exhausting.

In light of this, it always amazes me how people feel they have to discuss the weather or some equally inane topic when they are riding an elevator together. Somehow it seems better than just standing there. Than just being for the thirty seconds it takes to get to your floor. It’s this uncontrollable feeling that you ought to interact, have an exchange. But you really don’t. You can just stand there and be.

I remember when I was working in the US they began installing TV monitors in the elevators in office buildings (reporting the weather and equally inane topics) so that you could pretend not to notice the other occupants and just stand there staring at the screen. Captivated — no relieved — by the loop of extraneous information for that whole half-minute ride.

This doesn’t seem to be as much of an issue here in London. People crowd onto the elevator and then they stand there until it reaches the correct floor. In the tube elevators they don’t even all stand facing the same direction since you aren’t always sure which way the doors will open, which is a really hard one for folks in the US to deal with.

The next time you walk into a crowded elevator in an office building I dare you to shake things up by facing the opposite direction in which everyone else is standing. It will make people really uncomfortable. But you have to keep a straight face. Or to really get them going pull a sort of Clockwork Orange look like this:

Or you can just make life simple and get on and face the same way as everyone else. The beauty is that you don’t have to decide today or even tomorrow.

How the Twins Made Out in Boston, Barcelona and London City Airports

For those of you curious about how I made out on my three flights following the bionic boob incident (well, it wasn’t really an incident, it just was what it was — see A Further Look at Airport Screening Issues), I’ll tell you now.

Yawn, stretch. What? I am still rather tired from all of our travels. It isn’t every day I fly across the Atlantic and then turnaround and fly to another country two days later with my family. For those of you well-seasoned travellers who do this all the time, oh you jet setters you.

So here’s the rundown.

Having set off the metal detector at Heathrow, I tried to keep one step ahead of the game at Logan Airport. As we approached the TSA agent checking passports prior to queuing for security (that’s waiting in line for you Americans, hacer cola for you Spaniards), I considered my options. The agent was a young woman in her twenties. All business but didn’t seem mean. So I decided to plunge right in with my story. “Er,” I said, “just to let you know, I have prosthetic devices that sometimes set off the metal detector. Any advice?” She told me that because I have two young’uns traveling with me, I would normally be sent through the metal detector rather than the body scanner (these scanners were rolled out in 2010 and Logan was the first airport to receive them). I haven’t researched this but maybe this is to avoid exposing children to unnecessary radiation although the scanner emits such low levels of radiation that it is supposed to be equivalent to what you’d be exposed to flying in a plane for two minutes — big deal. “Tell them that you want to go through the scanner, not the metal detector, but don’t say why.”

Okay, I thought. So when my turn came around I told the dude I wanted the scanner while Bill and the kids went through the metal detector. “Hip or knee?” The man asked cheerfully. Um, no, sir, TITS. Really? I guess it just wasn’t on his radar that I hadn’t chosen my very very very short haircut on purpose. Which I suppose is a good thing because it means that he just thought I was a regular gal, rather than a gal who just killed the fuck out of cancer by getting sliced, diced, nuked and blasted. Just a regular ordinary gal with a chic buzz cut asking for a body scan because of that ole war injury. Being frank and as I have told you, not easily embarrassed, I looked right at him and said “breasts.” I’m pretty sure he regretted having asked me, and I almost felt sorry for him. But it serves you right if you are going to speculate.

I stepped into position, arms over head à la Cops except there was no police cruiser. I held my position and wondered what my expanders would look like to the TSA agents reviewing the images. Would they know? Would they really have received the training that was supposed to have been rolled out last year?

Well you know what? They let me right through with my metal tatas, no questions asked. So I guess they did get their training after all. Score one for the US of A.

Next flight was from London City Airport to Barcelona. It was our first time at London City and I have to say it is a very pleasant little airport. I was really feeling it. Would definitely choose to fly from there again.

Having had success on my previous flight with the up front and frank “I gots a metal rack” approach, I decided to try that tack again. I informed the agent. He reassured me that all would be fine and let me show him the ID cards for my expanders. This time I bypassed the metal detector altogether and went straight to pat down by a female agent. And then we were on our way.

And this brings me to the final experience in Barcelona airport. I was particularly curious to see how this one would shake down because it was the first time that another language would be involved. I came prepared, having asked my excellent multilingual college friend Mark to give me the best translation he could come up with for prosthetic breasts. I speak Spanish but man am I rusty and I didn’t want to make a slight error and tell them I had prosthetic chickens or a bionic ass or something that might rouse suspicion.

We inched forward in line. A young man checked our passports. I dove right in. “Tengo protésises mamárias,” I told him. I continued in Spanish, “sometimes they set off the metal detector.” I smiled pleasantly and awaited his reaction. He told me not to worry and said that if I preferred I could step aside and remove them. I couldn’t tell if he was kidding or just didn’t get it. Maybe he though I just had a stuffed bra or something. I neglected to tell him that removing them would involve an operating room and a plastic surgeon. In the meantime he sent me through to speak to a very pleasant woman in her forties or fifties. I repeated my story but this time added that it was due to breast cancer. She “got” it. Informed the agents and sent me on through. And this time I did not set off the metal detector.

But my husband did because he had all sorts of loose change in his pockets that he forgot to take out. It was rather nice to watch someone else get the full pat down for a change while I just waited patiently with the girls (and by girls I mean my children, not my boobs, in case you thought I was being cheeky).

So there you have it. A different experience at every airport. None terrible; some rather pleasant. I won’t get my permanent, no metal involved, silicone tetas for at least another five-six months, so there will be even more opportunities to fly the friendly skies with the twins. Perhaps they should get their own passports so that I won’t have to say anything to anyone. Speaking of which, my passport is nearing ten years old and you know what that means: time to renew. My photo is going to look a might bit different from the last one, but at least I have some hair for the event. By the time I take the picture I’ll be killing it with a sweet little pixie cut à la Mia Farrow in Rosemary’s Baby. But I will not be carrying Satan’s child, thank goodness.

 

Time Machine

Sometimes I wish I could just climb into a time machine and start over. How far back I’d go I don’t know.

There is a picture of me from the 1970s on a shelf in the office — maybe I am about four in it. I am sitting in a tree in a yellow turtleneck and red overalls (yes, the colours of McDonalds but as I said it was the 70s). Young, wide-eyed and full-cheeked. Fresh, innocent and… cancer free. There is something about passing that photo and looking into my own eyes that I now find very unsettling. I’d like to warn myself. Protect myself. Almost as if I were one of my own children.

I want that innocence back. I want the feeling of living without knowing that I had a life threatening disease back. I want to put the black smoke back into the box and then hurl that box into the abyss. When I think about this I feel like a frozen computer that needs rebooting. Something gets stuck.

But in life there is no rewind. Plus there is the fact that I am a total realist. An optimist, but also a realist. So my mind won’t let me pretend too much. Won’t let me be that four-year-old again. The smoke can go back in the box but the box will always be in the corner, sealed but present.

It is very hard for me to convey what I feel when I get stuck like this. It isn’t so much sadness, but confusion. And a touch of helplessness. Not helplessness against this bitch of a disease, because that I know that I can kill. Just helplessness against being where I am now, against finding myself in this most peculiar situation.

How do I make you understand? I am not dwelling or even obsessing. I am not freaking out about “the cancer.” Sometimes I am just sort of dumbfounded. This is it. This is where I’m at.

Whenever I get stuck, I think about all the good that has come out of this. How I have an easier time saying “no” when I don’t want to do something. How I don’t get quite as stressed about shit that in the grand scheme of things is not that important.

I know who my friends are and aren’t. I know that I am supported and loved by my family. I’ve a renewed interest in exercising and cooking. In savouring. And I find humour in the damnedest of places.

After my twenty-second radiation treatment this morning I went to have a complimentary therapy session (I get four — what a deal!). This is not a counselling session, but rather something spa-like. A massage or acupuncture or reflexology or aromatherapy. It’s one of the nifty perks of being a cancer patient. Which I won’t be for very much longer.

So when I went in to get my treatment and the nice lady ran through the list of things I could get I selected the scalp massage. I figured, hey, I’m pretty much bald, so I will get more out of this now than I ever will again. She’ll really get a grip on that scalp of mine, I thought.

Plus I have that nice crop of tiny little deep brunette (and white) hairs sprouting all over my head (ch ch ch chia…) and I figured they could use some stimulation. Grow grow grow!

The massage was good. I don’t usually enjoy massages except for reflexology, which is just the feet. But the scalp is good too. It occurred to me that the last time I had a scalp massage of any kind was when I was shampooed prior to my last haircut. Five days before one-quarter of my hair fell out and then I shaved my head. So it seemed fitting that I would have another longer and better one when the hair was coming back in with a vengeance.

I was sitting there thinking about that when the therapist started sort of tapping on my head (part of the massage) whereas before she had been doing more pressure points and rubbing. For a moment I felt completely ridiculous. Sitting in a chair, bald (well mostly) having someone tap on my head. It was like she was playing a bongo drum lightly and I was the instrument. But I went with it. And it was good. And I managed not to burst into laughter at the absurdity of it all.

Off Duty

Two weeks from today, provided there are no airplane delays, riots, floods or unwelcome and unforeseen side effects (such as a right thumb the size of a blimp) from treatment, I will be eating my breakfast in the United States of America (say that with a Southern drawl, please, emphasis on the “YOU”).

After those two short weeks I will have completed not only chemotherapy but also radiotherapy. Of course my treatment will technically continue for some time because I am now on Tamoxifen (endocrine therapy) and will remain on it for the next five years. I waited for two weeks after getting the prescription before popping the first white tablet because there are different schools of thought regarding whether to begin this drug subsequent to or concurrently with radiation. Some business about the theoretical possibility that cancer cells may be less active while on Tamoxifen and thus radiation somewhat less effective. But then there’s the whole get your body the protection of the Tamoxifen as soon as possible argument. I opted for “in the middle of” radiation, not wanting to carry the burden of an all or nothing decision and because it didn’t appear that anyone else was going to decide for me.

Taking that first pill was sort of weird. I kept staring at the box of tablets on my night table. I felt like Keanu Reeves in The Matrix in that moment before he considered whether to take the red or the blue pill and forever change his life. Go down the wormhole. This drug is powerful and it is excellent protection for those of us who had/have oestrogen-positive tumours, but many powerful good things come with a price, such as putting a woman through early and sometimes irreversible menopause. That may not seem like a big deal if you are already of a certain age or you are male and just don’t “get it” but to a forty-year-old who always thought she would have a third child it is not nothing. It’s unnatural and odd to think about such things before their due.

But I did it. And have been on it for a week now. I don’t think I have noticed anything (probably too early) apart from the occasional hot flash (hot flush if you are Breeteesh but to an American a hot flush might denote something else entirely, if you catch my drift) in my face, which could be totally unrelated. The chemo may have knocked me into temporary menopause in any event, so the effects of the Tamoxifen may go less noticed for me. Time will tell.

So this is how these two weeks will go: I will finish radiation, dutifully schlepping to the London Clinic for treatment every morning, and meanwhile I will begin to pack for our trip. Every day I will run my hands over my now slightly fuzzy each day slightly fuzzier scalp (it is irresistible) to monitor my salt ‘n’ pepper chia growth (see previous post). I will stare at my brow bones and lash lines in search of baby fine hairs. I will take my once daily Tamoxifen. And then that Friday will come and I will be done with radiation and about to fly across the ocean for, I think you will all agree, some well-deserved r&r. Off duty at last. Not even thinking about the further surgeries down the road some months away.

But it occurs to me that I will not really be off duty. Ever. I will relax and, not having to undergo any treatment other than that pill every morning, my stupid fucking breast cancer will fade from the forefront of my mind. But it will never really go away completely. Even after the Tamoxifen part is over. I figure every year it will get a little bit easier and occupy a little less thought depending on what else is going on in my life and in the lives of those around me. It’s just part of the deal now. I, like so many before me (and with me), some of you who are reading this right now, will have to lug it around even when it becomes almost imperceptible, virtually weightless.

I’d love to have your thoughts on this. How does it feel one year out? Two years out? Twenty years out? Do you have scars or tattoos that you see every day in the mirror and do they remind you every time? Or don’t you even “see” them anymore? Do you worry every time you have a check-up or a scan? Do you laugh at cancer jokes in movies without thinking that on some level they apply to you differently? I suppose these things are highly personality driven. I do not imagine that I will be seized by worry very often if all goes according to plan. But I know I’ll have my moments.

One of my problems is that I have never been one to let myself off the hook. So if I stop thinking about it for very long my mind will admonish, “Emily, stop focusing on how long it will take for your eyebrows to grow back or [insert other trivial beauty crap] and remember that you were diagnosed with cancer in January of 2012.” At which point I may have to tell my mind to shut the fuck up. Because once in a while I really would like to be… completely… off duty. Killing it passively.

 

All Thumb

Thanks to all you optimistic well-wishers who thought or pretended to think that the thumb would actually resolve on its own. But really? Alas, such was not the case.

Meanwhile we had plans to go to a beach party (in the 50-something degree drizzle) Saturday night in Beaulieu in the New Forest. I had some concerns about taking the thumb to the country. The first of which was whether, given its size, I might be required to purchase it a seat on the train to Brockenhurst.

I decided to risk it. Somewhat comforted by the fact that both my rads oncologist and my dermatologist (not the one at Hammersmith) had a look at it Friday and said I wasn’t in imminent danger of it exploding. When I spoke to my rads oncologist she said she really felt the nail should come off after all, so we could clean up the area and get a proper look at things. Her people made me an appointment to see a “Taxol nail” specialist on Tuesday (that would have been today) to determine whether the eleventh-hour diagnosis from the dermatologist at Hammersmith Hospital last Wednesday was correct, and presumably, to remove the nail. Delightful.

So off we went Saturday morning to Waterloo Station to catch our train.

It decided to rain all day so we ate lunch and then lazed about at a charming 350-year-old B&B (Pepperbox House) on the High Street in Beaulieu, napping (well not me cuz I don’t nap) and reading. I finished Solar. We dressed for the party, the theme of which was verdant green. I did wear a nice bright green cardy. But I had to whip out Candy Floss — surely you know her by now — for the finishing touch. Very pink and very green but not at all preppy. Not easy to do, that look, but I think it worked. And white jeans of course because they are so practical in the rain. And platform espadrilles — also a solid choice for soggy outings.

Sorry but I don’t have a photo.

There was a lot of green at the party, including Astroturf in lieu of carpet which I thought was a groovy concept. I might have to put some under my dining room table. Just think, it would be like having a picnic every meal! Neat! And no water required. Just add food and ants.

The party was quirky and fun. A hodge podge of people of varying ages and plenty of finger sandwiches, Pimms, wine, kiwi mojitos (I should have had one), cakes and later smoked pig and home-made pizza. There was a sassy magician with a dry sense of humour and a chihuahua, and a ukulele band from Bristol (?).

The girls dragged Bill outside and collected seashells from the beach in the whipping wind and watched the horses gallop around. In Beaulieu there is a law or something that animals can roam free and graze where they want to so there are horses and cows and other four-legged critters everywhere you look. Sometimes they all decide to cross the street together and stop traffic. I would like to have that kind of attitude. Just decide to wander into traffic and fully expect it to stop. Devil may care.

We decided to pull out at about 9:45 because it was getting late for the kiddies. They didn’t get to sleep until about 11. Oops. For a change we each took a child and a room so I slept with Isabel. That night my thumb started to hurt again and woke me up about four times. I was also awakened by Isabel who in the middle of the night started vigorously stroking my bald head. I wondered what the hell she was doing and rolled over to look at her. Her eyes were open but unfocused and she was clearly fast asleep. Must have been an interesting dream. Too bad we will never know whatthat was about.

Come Sunday morning the pain was bad and the thumb looked terrible. Even worse than the day before.  See Exhibit A below.

Now I ask you, if you were walking around with this thing for several weeks would you not have a hard time focusing on other things? Needless to say I was concerned about and distracted by my right thumb. I couldn’t ignore it because every time I tried to do anything there it was.

Saturday afternoon my dermatologist called and arranged for me to have an MRI Monday morning to check (again) if there was a collection under the nail or any evidence of bone infection. When I went to get it yesterday morning, after getting up early, taking a taxi there and changing into a gown, robe and slippers, and then waiting, they asked if I had any bits or pieces in my body and I told them about my boob expanders with magnetic ports. I had figured they would be all right because the MRI was just of my thumb. Not so. Apparently the whole thing acts as a magnet so once you walk through the door you are no longer in the safe zone. I had images of my expanders busting (pun intended) through my chest. “I’m not going anywhere near that thing,” I said.

So I decided to use modern technology to my advantage and texted my dermatologist. No can do MRI due to bionic tits, I said. Or something to that effect. Do u want me to get ultrasound while I’m here? He responded immediately. Yes he was down with that plan. Or something to that effect. So we did one and guess what? There was a big-ass collection of fluid behind the nail, 7mm deep. Gee, I wonder why it was deformed and uncomfortable. He said it would be sensible (I love the English) to see a hand surgeon and could I try to get an urgent appointment. By the way do you Americans and persons other than the English know why surgeons are referred to as “Mr” rather than “Dr?” I do but I’m not going to tell you right now. Maybe later. If you’re nice.

Anyhow I called and they squeezed me in for yesterday afternoon. Turned out the hand guy was at the same office as my boob guy. Good karma, I figured. I liked him and his confident but not at all cocky manner.

If you get queasy easily or are eating a big juicy burger right now, please read on.

Bill and I spoke with him for a while. Then he took me into the back while Bill was banished to the waiting room.

He shot the base of my thumb several times with local anaesthetic with an enormous needle and proceeded to drain that sucker. Out came about 10ml of bloody fluid, not counting the part that gushed out and wasn’t collected in a small vial. Then he sliced the nail away from the bed at each side and folded the nail back like a hatch. He made a tourniquet out of a rubber glove and clamp the base of my thumb to stop the bleeding and examined the nail bed. It looked good. Pink and healthy. No obvious sign of infection. He cleaned it thoroughly with saline. After this, he decided to leave the nail attached at the base because he saw the new nail growing underneath (which he showed me) and didn’t want to disturb it or further traumatise the area. The collection had been so impressive and the pressure so great that the nail bed was concave like the basin of a pond. After all of this, however, the thumb was much closer to its original size. It started resembling a thumb again rather than an unhealthy sausage.

Finally, he dressed it by inserting a piece of gauze between the nail and the nail bed and wrapping the thumb with gauze and more gauze. Until it looked like a small white potato.

So now I have this big white thumb for the next week. Should come in handy if I decided to hitch-hike to radiation.

Who knew killing it would be fraught with so many weird-ass side effects. I give this one a big thumbs down. But here’s to hoping that it is finally on its way to resolution, with a lot of help from Mr Hand Surgeon.

Nailing It

The thumb issue persists. It is the size of a small country. As Mike Myers put it in So I Married An Axe Murderer, “that’s a virtual planetoid.” (Yeah I like quoting Mike Myers.) And it is slightly numb and a wee bit painful as well. Not to mention it looks disgusting.

So this afternoon I hauled ass to Hammersmith Hospital (a walk, one Overground, a tube another walk and a bus later) and saw the infectious disease doc. She said she didn’t think it was a bacterial infection at all but rather maybe a fungus. And had I ever been to Arizona to the desert. Really? A fungus? Arizona? I was skeptical. The nail wasn’t thick and it just didn’t seem right… and I have been to Arizona but twenty years ago. But she called in a dermatologist and they conspired to remove my nail and do a biopsy of the nail itself and some skin underneath. Ew. I swigged the last bit of my tea and put the cup down on the saucer.

I was not feeling it. In fact, I seemed to be having an out-of-body experience as I allowed myself to be led downstairs to sit among nameless patients to await this unwelcome procedure. Now look. I am not what you would call squeamish. I remind you — in February I underwent a bilateral mastectomy. And I got eight hours of sleep the night before it sans sleeping pill. I have endured a number of other procedures in my life as well, including several eye surgeries while conscious. I could go on but who has time?

Something about this just didn’t feel right. I furrowed what’s left of my brow. I waited for a few minutes. Then the fire alarm began to sound. Deafening repeated bursts of ringing. No one reacted. Not the patients. Not the staff. I looked around. Nothing. Finally someone came up and said “oh it’s just a test or the fire is in another part of the hospital.” Gee, that’s reassuring. Are you fucking kidding me? I don’t get that mentality. But that’s just me. I’m a lawyer type. Highly analytical and skeptical. I cannot help it.

Finally, after about ten minutes, the alarm ceased. I waited. And waited. I started to freak out, but quietly, inside. It was hot in there and crowded. The air was stagnant and the clock ticking. And the appointment during which I agreed to this procedure was brief. Thoughts raced through my mind. How did I get here? How could this be happening? Why am I upset by a mere fingernail when a few months ago I had them cut out all of my breast tissue? What if it isn’t necessary? Doesn’t reveal the answer? Who invented liquid soap and why? And meanwhile, how will I type? How will I blog?

Finally they called me in. The doctor explained the procedure. He would inject the base of my thumb with anaesthetic and then saw the nail in half and cut about a millimetre under it and remove it. Then he would cut out a square of flesh beneath it and send all off for biopsy. Wet and dry vials awaited their contents, ready and labeled with my name and birth date to be sent to the lab. Entranced, I arranged myself on the table. The doctor swabbed my thumb with alcohol. I mentally gritted my teeth and succumbed to my fate.

“I just want to have my colleague take a look at this,” he said. A moment later, the colleague poked her head in. “Has this patient been on taxane drugs?” She inquired. Well, yes, as a matter of fact I have. Taxol is a taxane drug and that was what I had four times as the second half of my chemotherapy.

“This is acute onycholysis. Grade IV. It is due to the taxane drug she was on. Don’t do anything. It will resolve on its own.” I stared at her. Everyone got all excited by the diagnosis. I was excited not to have my nail removed surgically even if it will fall off on its own. The new nail is apparently already growing back underneath it and the discolouration on the sides of my nail is a subungual hematoma. The numbness due to pressure on my nerves.

Photographs were taken. I smiled pleasantly as I agreed to sign a consent form to be part of a publication on the subject — anything to help someone else who presents with this nonsense in the future. “Just email me,” I said. And suddenly I was free to go.

The bad news is that because I am analytical and skeptical I am still not convinced this is the right diagnosis. But time will tell. I have been on enough antibiotics to kill a small horse and systemically I am well. So we’ll see. Lee Press-On Nails, here I come.

I stand armed with two publications on the topic which I will hand over to the oncologists. If the diagnosis is correct, surely persons taking this drug should be checked for such a condition and it should be recognised when it presents itself.

Boy oh boy. Killing it has had more than its share of weird side effects, hmm? I sure hope that the colleague dermatologist nailed it.

Achilles Thumb

I have had four radiation treatments now. Seems to be going well. If you would like to know more about the rads experience (or how by accident I peed on my own leg after a struggle with camel toe) read my last post, entitled Meet Trilogy. So who would have thunk that the bane of my existence, after sailing through chemo and with four short weeks of rads to go, would be my right thumb.

That’s right, I have a thumb infection. It appears to be under the nail, which was damaged by Taxol, the chemo drug I was on for the second half of my treatments. How the infection got under there I have no idea, as there is no obvious cut or other point of ingress. But man is it obvious the thing is infected. Here, see for yourself (caution, don’t eat while reading this — oops sorry too late):

No I did not alter that image. That would be my right thumb. It looks, my friend Susan pointed out, like a toe. A big toe. Naaaaaaaaaasty. It feels awesome too, let me tell ya.

The whole thing started just about two weeks ago when I was awakened in the middle of the night with excruciating pain under my right thumb nail. It was dark so I didn’t look at my thumb. I just figured it was the last of the effects of the Taxol rearing their ugly heads after  treatment. Pain under the nails is something I experienced frequently during chemo, but not on this level. It woke me up again about four times that night. And in the morning I took a gander and that sucker was red and swollen and clearly infected.

So I called my GP and (after seeing me) he prescribed Augmentin. Didn’t touch the infection. Frustrated and a little concerned I asked my oncologist when I next saw him, which was about a week later. He spoke to the folks in the chemo treatment suite and we decided to try another antibiotic: Flucloxacillin. After a day or so the pain was better and I thought it was working but then the discolouration began to spread and the pain to return so I decided it wasn’t working and asked my radiation oncologist (four days later) what to do. We decided I would go to the dermatologist. So I did.

The derm took me off the second antibiotic, ordered an urgent ultrasound, and put me on Clindamycin, a broad-spectrum antibiotic I had never been on before.

I asked him if they would have to amputate (I was sort of joking). He said, deadpan, “I don’t know.” Good Lord, man. That isn’t funny! He said “well, anything is possible.” Although true, this is not a nice thing to say to a cancer patient who didn’t really think it was possible she would get breast cancer at the tender age of 39 and who can now well imagine the news that the top of the thumb will just have to go.

The ultrasound revealed thickened flesh but no abscess (no accumulation of fluid) behind the nail and the bone appeared to be normal. All good things. So I went home and took my first clindamycin and then another before bedtime and went to sleep. It didn’t look better in the morning nor did it the day after that, which was yesterday. I painted my nails red for the 4th of July party (even though it was July 1st — details) at the American Ambassador’s residence. That made it look somewhat better. The thumb became “Big Red.” I faithfully took my meds at the allotted hours that day and this morning I woke up and it was significantly… worse. Shit.

After fumbling through getting the kids ready for camp (it is hard to make sandwiches without using your thumb) I called the dermatologist. He was away until Friday. Super. Then I had to skedaddle off to radiation so after my treatment I asked them about it and the doctor there took a look. She ran through the good things: no redness, no systemic symptoms (I feel well and don’t have a fever, etc.) and said that antibiotics take time and I should give it at least 72 hours and that if the thumb still wasn’t improving they could admit me to the hospital for intravenous antibiotics. Delightful.

“Worst case scenario,” she said, “you lose the finger.” “WHAT?” I cried? “Oh sorry, the fingernail.” That is definitely a distinction with a difference. Next time spare me the heart attack.

It doesn’t help that at the moment I am reading Ian McEwan’s Solar. There is a scene toward the beginning in which the protagonist travels to the North Pole to study global warming. After a number of mishaps involving cracked goggles, subzero temperatures and failure to empty his bladder anytime in recent history, this dude stops his snowmobile to take a piss and his unit freezes to his zipper. He has to pour booze from a flask he happens to be carrying on the thing to get it unstuck and then as he mounts his companion’s snowmobile he experiences a terrible pain and then feels something small, hard and cold drop down his pants and settle by his knee.

Naturally he believes that his penis has broken off following the peeing incident. We later learn that this is not the case, but I felt for the guy. I really did. I looked down at my thumb and shook my head.

Then tonight my husband (the one who hasn’t had a day off in over a month) came home early so I could go to the movies with Susan. We saw Friends with Kids. It was cute, albeit predictable.

I walked to the theatre and on the way I spotted the broken off tip of a banana lying sadly on the pavement. Hmm. It looked just like my thumb above the joint, except more yellow. I didn’t like it.

I was just about to settle down and read my older daughter a chapter in Sky Island when the phone rang with a “withheld” number. It was my radiation oncologist. She had contacted an infectious disease doctor who is a friend of hers about my case. This doctor said that one can develop a nasty and persistent infection of the nail bed and that I should be on a combination of strong antibiotics to deal with it and also of course be seen. I said I was already on clindamycin. That was one of them. The other, it turns out, was Ciprofloxacin a/k/a Cipro (yeah, the stuff you take if there’s an anthrax scare). “Really? Together?” I asked. “I happen to have some in my stash of meds from chemo.” It was true. I have meds out the wazoo from all of my chemo and Cipro was always on hand in case I developed an infection. And it was the right dose and everything. So now I am on BOTH.

We’ll see how that works out. And I will see this doc on Wednesday. Meanwhile, I told my radiation oncologist I thought it was awfully funny that I had breezed through chemo only to be felled by an infected thumb of all things. “Yes,” she agreed, “it is your Achilles.. ‘thumb'” we said in unison. Giggle, snort.

I’m going to Wimbledon tomorrow. Of course it will probably rain all day but whatever. I will still have fun. If I can’t watch any tennis I will eat strawberries and cream and take meds every five minutes. Then Wednesday I get to find out more about how to kill this stupid infection if it has the nerve to look this disgusting for another day.

Good thing I am not a hand model.

Meet Trilogy

I wasn’t quite sure what to expect from rads treatment but after three rounds I have some thoughts. In some ways it’s exactly what I imagined it would be but in others it is quite different. It conjures all sorts of images and feelings. I’ll share some of them with you.

For one thing I never expected to feel like I was in a James Bond movie. You know the part where, as Dr. Evil so aptly put it in Austin Powers (the first one not one of the lame sequels), the villain places Bond and his flavour du jour in “an easily escapable situation involving an overly elaborate and exotic death?” That’s sort of what it’s like when they arrange me on this enormous and rather intimidating machine and then proceed to fasten my torso to the table. This keeps things in position but it isn’t like I couldn’t just pull off the tape and get the fuck outta there if I wanted to.

Of course it isn’t a perfect parallel seeing as the folks doing the arranging and taping are nice to me and are actually trying to save my life. Never mind. It is, however, pretty freaky when they leave the room and the weird noises start, first a high-pitched sound like out of a sci-fi movie, then the whirring and clicking as the head of the machine slowly glides into position and prepares to fire, then silence… and finally a flat buzz at the photon beam is delivered, first via one angle and then after the head repositions via the opposing angle.

When that happens I try to visualise something fierce à la Chicks I Dig Vol. 1, like one of my super heroines shooting any naaaasty cancer cells that might have stayed behind with laser beam eyes. Or maybe a cancer-hating dragon scorching the heckety heck out of any stragglers with its fiery breath.

You don’t feel it. And it’s fast. So different in so many ways from chemo, which took hours and from which I often experienced side effects as the poison was flowing into my veins. Radiation is not without risk (duh) or side effects but it (so far) feels less patently sinister.

A few minutes later they come through the doors and announce “you’re done. See you tomorrow.” It’s like having a job but a really short one. And I don’t get paid. But it is five days a week. Okay I guess it isn’t really like having a job, unless you consider killing it a job. It has been quite a job, as a matter of fact. And I think I’m pretty good at this job. But I hope to change careers soon. There are so many of us doing this job. It just ain’t right.

My machine is called Trilogy. Trilogy is large but I do not fear her. She is a sort of gentle giant. She is there to help me. With her flat, round head and deliberate movements she conjures for me a great tree sloth with special powers.

When I arrive at the radiation centre I descend to Basement 3. I am called to treatment and remove my clothing from the waist up and slip on a johnny leaving it open in the back. I enter the radiation chamber where Trilogy awaits. I slip the robe off and lie on a table with my arms over my head. The staff gently position my body so that laser beams align perfectly with my three tattoos, one between my breasts and one on either side of my rib cage on my sides. Once they are satisfied that all is perfect they place, for the first twelve treatments anyhow, a flexible bolus over the right side of my chest. My final thirteen will not include this.

They tape the bolus to me and the table. After this they leave the room and the alarm sounds (that weird high-pitched wavy alien sound) telling them to get the f*&% out of the room. Then the other noises begin and the party starts.

Then in a flash I get dressed again and am outta there. Ready to do it all again the next day. Once home I apply some Calendula- (marigold) based cream to the treated area in the hopes that it will minimise the sunburn effect and promote healing. The cream is called “My Girls” and I slather it right on my girls and my chest and under arm.

Yesterday my radiation oncologist showed me pictures of my scans and planning, which depicted the angles of the beams and which areas would be treated. It was unsettling to see the top of my right lung in the line of fire even though she had specifically told me about it. Apparently the scarring to that lung will be minimal and I won’t notice the effects of it. But still. On a positive note, turns out the portion of the left breast that is getting a dose is pretty minimal so at least for now I have stopped hand-wringing about that wrinkle.

After that thrilling technical description I thought you might like to be entertained. But if you are easily grossed out then stop reading right now. I’m not kidding.

This morning I decided to go to treatment in workout attire so that I could get one in right after it was over. I pulled on my Lulu Lemon extra longs and took the tube to Warren Street and then hopped on a random bus (the 27?) — there are loads of them on Marylebone Road and they get me 20 seconds away from the door of the treatment centre which is ideal when I am running late having had to draw on eyebrows or some such thing.

I visited the powder room upon arrival and tried to adjust my gym pants (pants in American means trousers not underwear, thank you) to eliminate that terrible thing that happens to women when the seam sits a certain way. Yes, you guessed it. Camel toe. Unacceptable.

I don’t know why but my LL’s tend to give me that sometimes and I do NOT like that look at all. Then I decided I had to pee, having made those seam adjustments in vain. I squatted (I have long legs and I don’t sit on public toilets, people). Somehow being, shall we say, more bare in certain areas can apparently cause some control issues. The long and short of it is that I peed on my own leg. When I sensed this I stopped mid-stream and looked down at the back of my Lulu Lemons. Yup. I peed on my own pants too. Super.

So in the space of two minutes I discovered that (a) I had camel toe and (b) I peed on myself. But that didn’t rain on my parade (so to speak). Nope. I was in a good mood. I just took some towels and water and soap and washed off those pants and redid my seam adjustment and moseyed on into treatment. Nobody the wiser.

I know that was TMI (too much information, come on, older set. Keep up!). But I just had to tell about it. It was a killer start to my morning.

Just so you know, below is a simulation. I have my robe on because although I love ya I don’t want to share that much. We took this right before my treatment began. You can see I am still smiling from the bathroom incident five minutes prior. Please be a dear and don’t post this pic on “Am I Hot or Not,” if that site even still exists, okay?  G’night.