Just What The Doctor (didn’t) Ordered

It’s official. Chemo is OVER! And I must admit, it was very anti-climactic. While something as momentous as this period in my life feels like it should be heralded as a rebirth, a moment to exhale, to celebrate the spirit of the fight, it was just another day in the chair hooked up to the whir of the IV poison going in my port. Oh well. That’s why I planned this huge family trip to Tuscany. I needed something to look forward to the past 5 months of feeling like crap. I need to hear that trumpet in my own heart, if not that of my family. So against the wishes of my oncologist, and after having to push it back a week to allow of my unexpected expander replacement and lavage, we were off!

I’m normally the kind of traveler that can’t sit still. I don’t really care for the beach, and the idea of vacation where you sit on the beach all day sounds like a form of torture to me. But this vacation I planned with a somewhat-out-of-the-way historic farmhouse in the somewhat-out-of-the-way historic Garfagnana region on Tuscany. Surrounded by panoramic views of the foothills of the Alps with an infinity pool and a home that dates back to the 18th century (but foundation much older), we didn’t leave the property for the first 3 days. I cooked. We picked and ate cherries straight off the tree. It was glorious. And peaceful. And calm…. And for the first time since November 15, 2013, after hearing the words “we found a mass, and it’s going to be cancer”, I remember who I used to be.

This is what relaxation looks like.

Input

Today just a quick question: I have a real urge to dye my hair platinum blonde. I never quite had the nerve to do it before, but the current me says “don’t be a pansy”. So I’m going for it.

However, I want to be sure it has been long enough after chemo. There is not as much information about this online as I had thought. The only direct answer I saw was “doctors will usually say wait at least 6 months.” It has been a full year since my last drip. I think this is plenty of time. My bf’s mother isn’t so sure (and is hoping I will settle on highlights instead). I thought I would query here to see if anyone knows the answer or has experience.

Thanks!

Chemo #5

Hey, remember that “this time last year” thing?

I’ve been off it for a while for ovious reasons, and I don’t plan on overly focusing on the past, but I do like being able to make the comparisons. While here I’ve been doing all this surgery stuff, last year I was having chemos #3 and #4. Three was a breeze. An absolute godsend. No drama. Neulasta worked. It gave me a second wind, made all the rest seem possible to get through. (So for all those struggling through, I wish you a random and unexpectedly easy chemo!) #4 was more usual, but I no longer threw up after any more. Although the “Neulasta flu” made me throw up randomly once or twice each time. This is also when Neulasta started a new side effect: making me feel like I had a fresh bruise all over my body. Everywhere. It hurt to have a massage. It hurt to lie down. It hurt to sit on the toilet! It hurt if Del even stroked my face. This usually lasted 36-48 hours.

Then #5 came. I just didn’t think I could do it anymore. I couldn’t even think about chemo without my stomach revolting. I remember the day before taking a bath. Thinking that I felt good and that I only had to do two more. Giving myself a pep talk. I thought “only 2 more chemos. You can do it.” And I promptly gagged. I decided I better not think about it anymore. In any capacity.

I didn’t know how I was going to drag myself back there and let them pour more chemicals in. My French friend Vanessa was coming back (the same one who shaved my head for me) and would arrive that morning. I got up and got ready, was dressed to go, still wondering how I was going to get the courage to go through with it again, when she arrived. I was happy to have fresh company and knew she would hep entertain me through it. But then she said, “I brought something for you, but it’s too heavy to carry up by myself. Can you come downstairs and help me?” A thought about the limitations of my bad arm flashed through my head but I went to help.

We got to the landing of the stairs and there at the bottom stood two more of my friends! All the way from L.A. and Oklahoma! We four started our flying careers rooming together in Chicago our first year, and every year we try to take a reunion trip somewhere. Sometimes it works and sometimes it doesn’t, but this year they decided to bring the trip to me! I was so happy and touched that I was all teary again. To this day I have found it hard to express how much that meant to me. They really got me through that chemo, and on to the next – and last – one.

So, once again rescued by good friends, a year ago today my second to last chemo was now history. And an exciting moment that should not go without mentioning:  now, before I’d even reached my last chemo, my hair would begin to regrow. A message from my healthy cells that maybe they accepted my mental apologies after all? I liked to think so.

Headlines

Today cnn.com has posted a story with the headline “Breast Cancer Chemo Raises Heart Risks“.

I find articles like this a little strange simply because, well, doesn’t anyone getting treatment know that? They should. It’s not new information is it? It seems a little like posting a headline such as, “More than One Kind of Chemo Available” or “Breast Cancer Patients who Have Lymph Nodes Removed Risk Swelling in the Arm for the Rest of their Lives” or “Hey, Breast Cancer Sucks!”

Don’t get me wrong. I’m not knocking anything that works to keep the issue in people’s minds, keeps them thinking, keeps them realizing (as much as it is ever possible) that it can happen to them so to be aware. Maybe it is just to keep the cause in the headlines. I’m all for that! But if that’s not it, then it just seems odd to pick something like that feels like “old news” out of all there is to say on the matter.

I’m simply curious. Or am I missing something? (Quite possible.) Cause right now it seems the only thing I’m missing is a cush job writing breast cancer articles for CNN! Where do I sign up?!

Out with ‘Quasimodo’, In with ‘Frankenbabe’

As you can see from the title, my progress has merited a change in nickname from my boyfriend. I’m quite keen on the new one! Makes me sound like some sort of hot comic book heroine. 🙂

Otherwise, I’ve had all the people I know in chemo on my mind recently. I have several friends/acquaintances struggling through the stages where it’s no longer even mildly “interesting” (for lack of a better word) as something you never thought you’d have to learn about. Unfortunately, you’re now a pro and it’s just boring to feel bad all the time. And while I did feel bad a lot, it wasn’t necessarily the side effects. It was the guilt that I really detested about chemo.

That’s right. Guilt. This is because of the amazing fact that your body is simultaneously one harmonized organism, yet somehow one part can be doing something major that the rest of you doesn’t know about. Like the tumor, of course. I used to creep myself out on occasion with the realization that just because I had breast cancer didn’t mean (technically) that I didn’t have/wouldn’t get another. Here my liver could be going about its business and decide to freak out and become cancerous, thinking it was putting on quite a show, having no idea that its tantrum was nothing new. However, I figure if my liver could know what my breast was doing, it would be considerate enough not to pull that trick (ever). It would only be fair. But, alas, there are no such negotiations.

This relates to chemo in the sense that my healthy cells had no way of knowing that all these chemicals were for my own good. So a lot of my discomfort came from the knowledge that – as far as most of my body was concerned – I was just poisoning myself. And if that’s the case, how could I expect them to be motivated to hold strong against the onslaught? If my good cells knew what was going on with the breast, surely they would understand. But they didn’t. They just saw toxins being pumped in with my permission. They told me their hurt by the bald head, the bothersome gut, the acidy stomach, the ringing ears, the sore mouth, etc. And I wished there were someway to say to all the 99% healthy part of me, “I’m sorry! Just bear with me. I promise it’s not aimed at you. And if I didn’t do this now it’d be worse for you later.” Even though I technically felt fine during my chemo drip, it’s a real mind bender (the real phrase I want to use is quite impolite) to go somewhere, sit down and just let them pour gasoline into your veins. That’s where the associative nausea came from. I wonder if it’s the same for other patients?

I say all this not to put creepy ideas in the minds of women who might not have them already. I say it because I haven’t seen it said before and it’s no small “side effect”. If I am the only one, well, now you know my neuroses and I’m glad that others don’t have to deal with that guilt too. But if I am not the only one (as I suspect) than I say it to sympathise and say, I don’t forget how crappy it was. But my body understood in the end, and yours will too.

Angry Too

Today is a day to be angry. Today is the type of day when the relentless evil that cancer is sticks its head up and says, “Hey now, don’t you underestimate me! I am heartless and mean and I will be as difficult as I can be sometimes, just cause I’m a bastard.”

That is what’s happening to WhyMommy, as she struggles with setbacks in her chemo. My Cancer Twin, Jess, almost had to do more chemo herself, so I know how utterly gutting that can be. You draw all your energy to deal with the chemo from that promised end point, and then it dances a little further away like a carrot on a string. It’s so demotivating. So to all my readers, pop over to support her if you can. Hang in there WhyMommy. You are doing an amazing job. And we will all say prayers, cross our fingers, send positive vibes, or do whatever it is we each do to encourage your body to rally, for all the good soldier cells to get angry too and go into the battle with a vengeance, for the tumor to learn its place, cooperate and wither. After all, you’re doing your end of the bargain, it can at least do that same. You are in my thoughts. You are so in my thoughts.

Most Recent Hair

It’s that time again. Almost exactly one year after losing my hair, it’s time to take a look at it. I had my hair cut just yesterday and took a photo yesterday for just this purpose, which is funny as I just also had several requests for an update today.

It’s not fixed, but there it is.

My curl is back exactly the way it was. Which is, yes, a good thing. I did love my curl, but it’s tough to contol on short hair though. If you’re surprised that it’s still so short, well, join the club. If it cheers you though, I have had several haircuts.

I have been cutting the back consistently, as I plan to keep the back short. I’m aiming, eventually, for something akin to a Victoria Beckham cut (the only thing I’d ever want of hers! Bleah.), but shorter. It has been regrowing for 10 months now. It’s been visible to the camera for about 7 or 8. As you can see if you compare to the May photo (in the sidebar), the last 4 months seems to have made frustratingly little difference. Even so, I do like this newest cut.

Overall it has generally grown quickly and consistently, but at one point it seems to stop getting longer… and just keep getting poofier and poofier! (As you can see in the photo; if my hair were straight it’d look much longer!)

For those judging their own hair growth, the back would be about 1.5, maybe 2,  inches longer if I hadn’t cut it. And the front? Well, that – as the only part I am willing to grow – seems at a standstill. The hairstylists all seem hellbent on trimming the bangs each time, even though I am adamant that it be left as long as possible. They claim they’re cutting the “fine ends” that need to go or else they are “shaping it”. Whatever. I trust them. And I like the new cut. I just can’t wait to have bangs to tuck behind my ear!

PS. I’ll take another photo once I’ve gotten to wash and fix it myself….

My Neulasta Rant

Update: Please note JackieG’s very helpful comment below, where she describes how taking Claritin might help your Neulasta pain! Thanks for the tip, Jackie!

So. Neulasta. My best friend and my biggest foe during chemo. Here’s my deal: everyone says Neulasta is the best thing ever because it works “every time”. Well I’m sorry but it doesn’t. Furthermore, the side effects for me were the worst part of chemo at the end, and all for nothing!

As I said the other day, chemo #2 found my WBC super low as well. In fact, I spent one night with fatigue so bad that I could not get up to get a glass of water. Well, I could have tried but I feared passing out. Talking too much had the same effect. All of this made me quite whimpery because my boyfriend and best friend just didn’t seem to get how I felt. Eventually my temperature began rising. I had such fear of returning to the hospital. I went in the bedroom and lay down all night, keeping an absolute vigil over my temperature and putting towels full of ice on my head when it rose. Call me crazy, but I seem to have kept the temperature at bay this way.

Chemo #3, I admit, was awesome. I took the Neulasta, and though the side effects were worse this time – not just bone pain, but headaches and the worst nausea ever – it worked as promised and my WBC never went below 4000. Although the day after Neulasta was the pits, it was all worth it. Chemo 3 was a cake walk. Thank god because it really gave me hope for the rest of my drips.

Never again would it work so well. Chemo #4 found Neulasta still making me feel indescribably horrid for two days, yet still my WBC nosedived to 1000 or so and didn’t come back up until just before my next chemo. I called the doctors several times, always feeling like it wasn’t working. I kept getting the standard “it sometimes take a week or so to work. You’re fine.” They didn’t seem to get it didn’t seem to be working at all. I asked on line and other women gave me the same answer. But when it DID work for me, I knew it. I could feel the difference. It worked the first week. It worked for chemo #3. Otherwise, I dragged on in fear of neutropenic fever until just before my next drip. At 1500 euros per shot (!), and days of hellish side effects, this seemed like a waste.

Finally I went to my oncologist in person. I told hi my concerns, I got the same “umm hmm. Don’t worry. It’s works. It can just take a while.” I told him my history several times and somehow, finally, I showed him the paper work for week after week after week of low WBC. He did a double take and seemed alarmed.

“Wait a minute….This is impossible, but it doesn’t even look like it’s working for you.”

I felt vindicated. “That’s what I’ve been saying for weeks!”

He gave me a serious look. “Do you know how much this stuff costs?” I told him I did. He repeated the figure anyway. “Do you know why we pay such a ridiculous sum every time?….Because it works. Because it’s guaranteed. That’s why. But you…I cannot believe this. I’m going to have to contact the pharmcutical people. I will talk to them and get back to you. I’ve never heard of this before.”

All of this proved my feeling that, as serious as chemo is, and as good a service as one generally gets, after a certain point people stop listening to you. They assume they’ve heard it all. They assume that you don’t know what you’re talking about. It’s so frustrating.

My doctor called and emailed the company that makes it. They never got back to him about me. To my great disappointment, Dr. Awesome merely said, “Oh, yeah. They never got back to me. Oh well, we’ll just give it to you again and see what happens, then decide for round 6.” I couldn’t believe he was so accepting of them not answering his questions! In return, my only recourse was to think, “Oh well, welcome to Belgium. The land where people are used to being ignored.”

For chemos #5 and 6 it again did not seem to work, and the side effects got worse and worse. Now, after each chemo I didn’t get sick at all from the drip, but the Neulasta shot would put me on the couch practically unable to move with bone pain and intense nausea for 3 days. I swore I was going to refuse the shot for my last chemo round, but in the end I took it, on the small chance that it worked.

To all the people who argued with me that I was impatient, that I had to give it perhaps up to two weeks to work, I ask, what’s the point? If that’s considered “working” then I don’t get it. If the whole idea is to keep us from being hospitalized with neutropenic fever, it’s stupid to give us an expensive drug that makes us feel like ass and still leaves us unprotected for up to two weeks! I could be in the hospital by then!

I’m not trying to bash it. Apparently it’s great for many many many many women. Hallelujah for that! And if anyone understands more about this drug and can explain that I have misunderstood something about it, I would love it. In fact, I would much prefer to feel that I was wrong than to think there are women out there like me who were being left vulnerable and not listened to.

I know nothing is a panacea. And I don’t expect it to be. I’m just not sure that, when it comes to Neulasta, everyone else remembers that.

My most outstanding chemo issues

My chemo would become about 2 issues for me. Out of all the possible side effects and things that I dreaded, I had many of them (the racing heart, the ringing in the ears, etc.). But really it always came down to two things that made me miserable: hemorrhoids and Neulasta.

The first one is not an elegant discussion. It’s something I’d normally never openly talk about, but as a warning would have made all the difference to me, I’m putting it out there for anyone else it might help. Anyway, medical chat is no time to be shy, so here goes. I’d never had such a thing in my life (somehow I was lucky for 30 years I guess). So when the problems began I was not wise enough to catch on and take preventative measures. I didn’t realize what was up until the problem was in full swing. By then it was too late.

The thing is that one of the things that chemo really screws with is your mucus(es). This means that the nice little lining of slime that normally covers your intestinal track is gone. This is rough. Seriously, this problem had me terrified every single day. I’m still shy about going into detail, but suffice it to say that if anyone ever searched the caches on my computer they’d think I had some weird fetish. I tried everything out there and read up on the possible complications (which only served to make me more paranoid, which does not help the problem)! Everyday I wondered all day whether or not I’d need the bathroom. If not I was cheerful, but scared for the next day. It all sounds so silly, but it was terribly serious to me. There is no worse enemy to have than your own bodily functions. As this one brought pain sometimes akin to childbirth (so my research said. And if you disagree don’t tell me or I’ll never have a child!), Chemo passed largely as an anxious attempt to balance my need for fiber vs. my need for easily digestible foods vs. my need for vitamins and minerals vs. my inability to eat fresh foods (b/c of low WBC) vs. vs. vs. vs. vs. It’s a maddening cycle that any person in chemo will face in some form or another.

What did I settle on? Weary of taking any more meds than necessary I first tried taking 2-3 Tbsp of olive oil a day. This is an ancient remedy and serves to line the intestine. It’s also a disgusting remedy. I discovered that I can’t stand straight olive oil and eventually it made me want to gag (not to mention burning my throat). I went on to fish oil capsules. Fish oil is also gross. I would burp foul things for hours after taking them, but they were good for me if nothing else. Eventually I found a combination of things that got me through, which I will be happy to email with you personally about if you need. But out of all the things that I thought chemo would entail, living in terror of going to the bathroom each day was not one of them! If only someone had warned me…

My WBC count was the other monkey on my back. Just after chemo #2 my best friend came from NYC. I was so happy to see her. And she took me on a very generous shopping spree to buy me clothes that I could wear (since I was still having problems with my mastectomy wound and couldn’t wear a bra). Normally I would never have accepted such a gesture, but I knew that she really wanted to do this and we had a great time. She is awesome.

I felt a little faint during the shopping but hung in there. I’d had Neulasta, which is “guarenteed” to work, so I wasn’t worried. When the time came to go to my blood tests I was severely disappointed to discover that my WBC count was nevertheless 1100. I’d gritted my teeth through the shooting pains it causes for nothing. The disappointment wiped me out as much as the low counts. Three years to get her to visit me in Europe and the rest of Wendy’s visit was spent on my couch. Boo.

Why hadn’t the Neulasta worked? That was something which I would struggle with for weeks and weeks. And weeks. The first obstacle was to get someone to listen to me! Try telling your doctors that their favorite most expenisve wonder drug that “always works”, doesn’t always work! They aren’t too prepared to believe you. trust me, I tried.

Tune in next time for my Neulasta rant…

Chemo #2

In general, chemo was a quickly established routine at least as far as certain things were concerned. I would get a headache during the last drug’s drip. I would go home and get ill almost exactly 2.5 hours after my drip. I arranged my chemo for the afternoon, so that by the time I was finished the evening was upon us. I would come home, change immediately into my pyjamas and crawl into bed, hoping to sleep through the worst of the sensations.

For chemo #2, two Brussels friends volunteered to come with me. This was an unexpected and touching gesture, especially as one if them was a guy. Chemo is just one of those experiences that I assume most people would not be eager to watch. It’s uncomfortable and highly personal. Call me sexist but it just seemed like the kind of thing that many friends – particularly guys – would rather opt out on. But I was proven wrong when both Dan and Pia voluntarily took off work and sat by my side for the long hours.

As usual, my hospital would surprise me with thoughtfulness. Usually one only gets a bed the first time, (a reclining chair the times after). However, my head nurse had taken note of me the first time and reserved me a bed again in advance. “You were quite upset last time, so I just wanted to make sure you are as comfortable as possible. I’m sure you’ll be a pro now, but still….” I wanted to throw my arms around her for her thoughtfulness.

To get to the good part: we chatted all through chemo and this time, indeed, it was much less traumatic. No tears, all casual. Del also surprised me by getting off of work early and showing up. The nurses did not mind that was exceeding the limit of visitors (another advantage of taking chemo late in the day).

Then, Dan and Pia insisted on coming to our place to “hang out, watch a movie.” I tried to tell them that it would not be a pleasant night for me and it wasn’t very appropriate for social calls. They didn’t seem to get it. I didn’t mind them being there when I got sick, but it was if they didn’t quite believe me. So I was a good sport and they came over and ordered in Japanese food. I clenched my jaw against the smell and tried to participate by asking for rice. (Which I couldn’t eat because the restaurant foiled my plan by putting some fancy seasoning on it. Bleah.) It was a challange but I made it through the smells of their dinners.

We put on Napolian Dynamite. All was going well. Then, right on time, 2.5 hours after chemo, I ran out of the room, tossed a few cookies, put myself together and re-emerged from the bedroom. Dan and Pia were scrambling to get their things together. “Oh, my, we should go….no really, we should go.” You would have thought that they had walked in on quite something else. Poor things were tripping over themselves to get out of there. I was sorry to make them uncomfortable, but to be honest a part of me found it humorous. It was hard not to sing, “told you so…” just for the fun of it. But I didn’t. They weren’t quite ready to joke about it yet. (My chemo twin, Jess, on the other hand, had a good laugh with me later!)
I managed to keep Del company for the movie and then gratefully crawled into bed, willed myself to go to sleep immediately. With new drugs in my arsenal, I thought I was going to make it through the night. I slept well until Del came to bed a few hours later. I woke up and had to go to the bathroom. As I set there peeing, the urge to throw up hit hard and fast. Obviously I couldn’t jump off the toilet that quickly, so I clamped my hand over my mouth. You know how well that works: there I was in all my glory, sitting on the john and throwing up in my lap! (As Del just said, “ahh, the good old days.”)

I think I may have giggled about it a little right then, which you can imagine struck Del as strange from the other room. A few paper towels did the trick and it was not so bad. And I made it through the night with no more problems. Most importantly I learned two good lessons: 1 – survey the nausea situation before blocking your only receptacle. 2 – Most importantly, no matter how bad the last chemo was, there’s plenty of hope that the next one will be better!