Drugs, Fuzziness And Tattoos

bell.thumbnail Drugs, Fuzziness And TattoosChemo is finally over. Woot!

No more boring, six-​​hour-​​long days spent in the chemo ward… no more burning arms from intravenous chemicals coursing through my veins… no more mouth sores, numb toes and red eyes caused by those few remaining eyelashes accidentally falling into my eye socket.

And, best of all, no more fuzziness caused by that all-​​too common side-​​effect: chemo brain.

I’ve had eight chemo sessions in all. It’s been a really tough five months, not so much with the chemo itself but with its after-​​effects, ranging from complete exhaustion to complete hairloss. My failed attempts to retain whatever strands of hair I have left on my body seem like a constant, losing battle.

Thankfully, we’re done. And the hair will start growing back in. (Michel, my wonderful husband, seems to have noticed a peach-​​fuzz-​​like growth on my scalp the other day. Ah, I knew I loved him for a reason!)

There’s a bit of a break before radiation starts, as there is a mandatory waiting period between treatment types. They only start in another couple of weeks, so until then it’s a much needed break.

I’m scheduled to have five weeks of daily radiation doses. That means, 15-​​minute hospital visits, each day, for five weeks. (But the side-​​effects, I’m told, are a lot more manageable than chemo!)

I did have to go back to the hospital, though, for a radiation “preparation session.” That is, they explain the procedure in-​​depth, and take measurements of my chest wall to calculate and “mark” exactly where the machine will be placed during the procedure, as to not affect any surrounding vital organs such as the heart.

This gave me a temporary moment of glory of sorts.

You see, my mother called me from Florida the other day (she’s a snowbird and flies southward for the winter months, where some of my family still live), and I unwillingly caused a slight moment of panic when I told her, “Mom, I got my very first tattoo!”

She was relieved when I told her that my “tattoo” was really a tiny pinhead dot to guide the radiation machine that will be nuking my chest every day for the next five weeks. But I nevertheless relished those few seconds when I almost made my mother faint. She also didn’t like my follow-​​up remark, which was, “And guess what? My next one is going to be a nipple!” (The uncontrollable giggling didn’t help things, either.)

The toughest part of this entire process thus far is, chemo truly knocks the wind out of me for a few days after each session. I can stand the mouth sores. I can stand the exhaustion (mind you, it’s a great excuse to nap during the day!). But my biggest gripe is, above all, having to deal with “chemo brain.”

Doctors are not sure what causes this. But it’s very common among cancer patients. And I can tell you that there were moments when I felt utterly distraught by my lack of focused concentration, my low mental energy, and my short-​​term memory lapses.

My poor family had to endure those occasional moments of sheer fuzziness, where my foggy mind was a bit of a nuisance at times. Aside from not being able to work for longer periods of time to which I’m normally accustomed, my mind played tricks on me that even caused me to panic.

The other night, my husband and I were working. My youngest daughter was out, and it was past her curfew. My husband, who was the first to notice, asked me: “Honey, do you know where Paige is?” If there was such a thing as a panic button, it was certainly being pressed at that moment. My heart was pounding. My pulse was racing. My head was aching. We were scrambling to find out where she was.

But just when we were about to either jump into the car looking for my baby all over town, or call the police to report a missing person, in walks my daughter, all smiles and chuckles, which seemed even more distressing when she knew she just broke an immutable household rule.

Paige!” I yelled. “Where the heck were you? We were worried sick!!! We were going to go out and look for you! It’s past your curfew! Why didn’t you call? You’re grounded, little lady! You’re in DEEP trouble!”

And in a look of complete dismay and utter confusion, Paige replied: “But mom, I went to see the late movie tonight. I asked you yesterday, and you even gave me money for it!”

(D’oh!)

That’s what I mean. Thank goodness those days are over. (And I’m sure my wonderful family is just as happy as I am.)

Speaking of chemo being over, on the last day of chemo, the staff in the chemo ward got a little surprise — including any patients that were still in the room after such a long day.

In the chemo ward at the Ottawa General Hospital Cancer Centre, there are over 40 beds, each flanked by an intravenous machine. (Every time we’re there, all the beds are busy throughout the day. It’s amazing to me to see how many people suffer from this dreadful disease. Amazing and disheartening.)

At the end of the hall near the exit, there’s an old bell hanging on the wall, with a dangling cord. When patients leave after their last chemo treatment, tradition says that they must ring the bell on their way out.

During each session, my husband (who has been with me by my side each time) and I hear the bell ring at least 2–3 times. It’s a momentous occasion to say the least. The entire ward — nurses, doctors, patients and all — break into applause and cheer. It’s a wonderful feeling. And it’s also a great motivator.

I can’t begin to tell you how many times I told my husband how eager I was for when it would be my turn. I gave him, and the rest of the staff, a fair warning: when my time comes, you better block your ears, ’cause I’m surely ringin’ that bell! (Michel believed me, but I’m so sure about the staff.)

Some people ring it only slightly. Others ring it with one big clang. But that’s about it. To me, that bell meant more than you can possibly imagine. And people who know me know that I am definitely not the timid type. (In fact, the doctors and nurses at the chemo ward call me the “firebug.” Can you imagine why? Hmm?)

A few weeks ago, the moment we’ve all been waiting for had finally arrived. And I didn’t hold back. I jumped up and grabbed the cord (if you’ve ever seen me in person, you’d know I’m not a tall person), and like Tarzan swinging from a vine, I rang the bell so loud it could have woken up the entire hospital!

(My husband later told me that all the nurses turned to him, whispering, “Is she always like this?”)

Chemo or no chemo, however, one side-​​effect I wasn’t expecting, which threw me off somewhat, was lymphedema.

Lymphnodes are glands near your armpit that act like “traffic cops,” directing fluid to and from the breasts — from water to milk during pregnancy. When you have a mastectomy, where lymphnodes are removed (as it was in my case), breast fluid has nowhere to go. So it tends to build up in other parts of your body — mostly, your arm — causing it to swell like a balloon.

Sometimes, lymphedema can be very little and even unnoticeable. Other times, it can appear quite dramatically. I wasn’t aware of this. And I certainly wasn’t aware that some environments can contribute to lymphedema — such as while traveling by air in a pressurized airplane cabin.

Last month, I spoke at an event in Atlanta, Georgia. I flew in a day earlier, which gave me some time to prepare for my presentation. And moments before I walked on stage, I was focusing on the crowd, reciting my presentation in my head, and making sure the AV equipment was working and ready to go.

I speak on stage regularly, so I’m used to it. There are many things that go into making a successful presentation, and all of these took my mind away from a little surprise that “quietly” happened while I was on stage.

Right in the middle of my presentation, I felt a certain pain in my ring finger. I was only a half-​​hour into my presentation when I took a moment to look down at my hand to see where the pain was coming from. And to my complete shock, I noticed my bulging hand and fingers, which have swollen to twice their size causing my wedding ring to dig itself deep into my skin!

Sausage hand. Ugh.

(Thankfully, it stopped swelling after that point and the ring remained intact. I would have dreaded the mere thought of being forced to cut my wedding ring off my finger! The good part? My hand was still swollen enough to cover my entire face trying to hide the embarrassment from the whole situation.)

My doctor, Dr. Young, who is my hero and for whom I’m so thankful (by the way, look for a blog post soon about him, because he was such an amazing person!), prescribed a compression sleeve for the next time I travel. So hopefully, my hand won’t blow up like the Good Year blimp, especially while in the middle of an important presentation!

Lymphedema is permanent, but at least it’s controllable. However, another side-​​effect of chemo that’s much less controllable is menopause, and its trusty sidekick, “Captain Hotflash.”

Since breast cancer in women is often caused by estrogen levels, chemo forces you into menopause as part of the process. But now that chemo is over, and since estrogen cannot make a comeback or else it will put me at risk for a re-​​occurrence, I will be placed on hormone therapy to keep me in a menopausal state.

And that, unfortunately, will last forever.

My poor husband has to put up with our arctic-​​like bedroom nicely chilled from its wide-​​open windows in the middle of winter, or else he will wake up swimming in a pool of my sweat from having several of these hotflashes overnight. Yuck. Not a pretty sight. When my husband tells me I’m hot, this gives it a whole new meaning. icon smile Drugs, Fuzziness And Tattoos

But one thing that happened throughout this entire process is pretty fascinating. In fact, it’s almost eerie.

As a child in grade school, I had a dear friend who I used to hang around with all the time. She and I were best buddies. We were inseparable, it seemed. But, as you know, life happens. And as my mother moved us away from Ottawa, I lost touch with her and haven’t seen my best friend ever since. We’re talking close to 23 years, now. From time to time, I still stop and wonder how she is, where she is, if she has any kids, where is she working, and so on.

When I got married last summer to my Soul Mate, I was preparing to file the necessary paperwork to change my maiden name to my newly married name. But since I was diagnosed with advanced breast cancer just a few days before my wedding, I was literally whisked into the operating room upon my return from our honeymoon.

These events have forcibly sidetracked any attempt to legally change my name. So when I registered at the hospital, I had to use my maiden name.

Then one day, out of the blue, I got a phone call.

Apparently, my best friend who I haven’t seen in over two decades worked in the administrative offices of the cancer center! Luckily, while she was working in the backroom (which is why I never saw her), she came across my name. And being a Halloween baby, there aren’t too many people out there with my name let alone my birthday of October 31st.

So she knew it was me. And that’s when she recognized me right away. So she decided to give me a ring, and we finally got back in touch after such a long time. We couldn’t chat too much because she was working. But when I visited the hospital for one of my many tests, we finally met face to face.

We didn’t have much time to catch up — only to know that her life was frighteningly similar to mine. She has kids about the same age as I do, and lived practically in my own backyard, just a few streets away from my home!

Strange coincidence? Maybe. But in the end, this goes to show that, whatever the Universe does to you, you’re sometimes reminded that everything happens for a reason. And aside from being thankful for ending chemotherapy, I’m thankful to be alive, to know that I’m not alone on this journey, and to be so loved. Until next time, as the song goes:

You can ring beeeellll-​​ellll-​​elll.” icon smile Drugs, Fuzziness And Tattoos

20 Comments so far »

  1. Barb Rosier said on:

    February 26, 2007 at 3:02 am

    Sylvie, congratulations on finishing your chemo! And, I am so happy you reconnected with your girl-​​hood friend.

    Take care and keep smiling!

  2. Suzan St Maur said on:

    February 26, 2007 at 7:18 am

    Fantastic news that you’ve completed your chemo and rung that bell!

    I’ve been experiencing all the same symptoms including the “chemo brain,” hot flashes and lymphedaema. I think the lymphedaema is self-​​limiting, so what you’ve got now is as bad as it’s going to get. Mine cropped up suddenly too, about two months after my mastectomy, but has not gotten any worse.

    Tip: if you don’t want to wear your compression sleeve, sit for 20–30 minutes with your arm up, for example reclined in a lazy-​​boy chair with your arm holding a magazine or document up for you to read. I find that reduces the swelling quite considerably, and as I have to do a lot of reading for my work it’s quite a nice way to do it!

    From the appearance of the “peach fuzz” it sounds like your hair is on the way back — that’s a wonderful time. The first centimetre or two will be “damaged” hair as your hair follicles won’t have recovered fully, but it will still look quite nice and “chic” (think Kylie Minogue, the Australian singer.) My hair grew out curlier than it had been before and my hairdresser thinks that’s going to be permanent now — it’s nearly a year since I finished chemo.

    Good luck with the radiation sessions and keep on “ringing that bell!”

    SUZE

  3. Tatiana Velitchkov said on:

    February 26, 2007 at 9:14 am

    Dearest Sylvie,

    This is such a wonderful news! Not only did you finish your chemo, but you also found your long lost best friend :) You go girl! Keep smiling, keep strong, and the best of wishes to get through the radiation, and get back to being healthy in the shortest possible time!

    Warmly
    Tatiana

  4. June said on:

    February 26, 2007 at 10:33 am

    Having been diagnosed with pancreatic cancer last week and not knowing what’s in store for me, your brave words are an inspiration and I hope I can fight this the way you have.

    I stood close to you at Wembley last year and although I am only 5’2, you made even me feel tall!

    All my good wishes

  5. Patrizio Moi said on:

    February 28, 2007 at 6:43 am

    Dearest Sylvie,
    congratulation for finishing your chemo traetment.

    I think your mind set is very inspiring.

    I really wish you the best of health and happiness.

    Yours sincerely,
    Patrizio Moi

  6. Nell Taliercio said on:

    March 1, 2007 at 2:40 am

    I’ve been thinking about you a lot lately and happy to hear Chemo is done and over with.

    And, hurray for peach fuzz and super fantastic hubby’s!

  7. Audrey Shaffer said on:

    March 2, 2007 at 9:21 am

    Sylvie,

    Congratulations on finishing chemo! Radiation isn’t nearly as bad. Just get plenty of rest, lots of fluids, and keep an eye on the skin so it doesn’t get sore.

    You probably already know this, but make sure you see your dentist before you start your radiation. He can make you a mouth guard to wear during treatments so that your teeth don’t get damaged.

    When I had my radiation back in ’97, the doctors told me that it wouldn’t hurt my teeth. Six months later, the dentist took one look in my mouth and said “Oh no! When did you have radiation?” Dentists can spot the tooth damage immediately, no matter what the doctors say. Dentists even call it “Radiation Mouth”.

    I’ve lost half of my teeth from radiation damage. So see the dentist FIRST!

    And hang in there girl. You’re doing great! :D

    Audrey

  8. Lisa Manyon said on:

    March 4, 2007 at 2:17 pm

    Hi Sylvie,

    I am glad the chemo is over and send good thoughts your way.

    I noticed you were listed on the Wonder Women of the Web conference line-​​up and am sorry I couldn’t make it there, although, my guess is you had to pass, too.

    I admire your strength, courage and ability to share your trials and triumphs with the world.

  9. Colin Arthur said on:

    March 6, 2007 at 5:05 am

    Ring that bell!!!
    Hmmm sounds like there could be a song in that phrase.

    Way to go Sylvie, you finished Chemo and are an inspiration to others. I just got a call from a friend in Atlanta whose swim coach just got diagnosed with Stage 4. I’m not sure what that means but her name is Margaret and she could use some prayers about now.

    There is a little more detail and your picture on my blog. Thanks for sharing your experiences so people like Margaret don’t feel quite so alone.

    Colin

  10. suni said on:

    March 6, 2007 at 10:06 am

    prayer works! You have been on my mind. I am glad that all is going well with you. My father still has residual effects from chemo on his brain from 2 years ago but he is mostly normal now. God bless you!!

  11. Andrea Lambert said on:

    March 6, 2007 at 11:01 am

    I’m sure I heard that bell ringing all the way in downtown Ottawa! What a fabulous victory Sylvie!!! I’m so happy for you!

    You’re an inspiration to women everywhere.

    From your honory member of your cheering squad.

  12. Linda said on:

    March 6, 2007 at 5:34 pm

    Your words are very encouraging. My baby sister is starting her chemo on 03/​15/​07. She has a lot of concerns. She is extremely nervous and stressed out. I am hoping she will make it through her 7 cycles with good results like you.

    Thanks for sharing your experience and for inspiring others who might be going through chemo and radiation.

    We are in the heart of Texas.

    Linda

  13. Laura Strebel said on:

    April 15, 2007 at 3:19 pm

    Sylvie,
    I’m so happy you are done with chemo. Yes, it is no picnic but you came through it beautifully.

    Now the radiation part… Don’t be afraid to ask the doctor for special creme if you experience any radiation burns. There is a prescription creme in a little tube that is just for radiation burns. I went through two tubes and wish I’d started earlier. I just accepted that I would get burned because of my light skin and didn’t realize how bad the burn was till the doctor said it was the worst she’d seen and asked to take a picture of it. (She’s been doing radiation therapy for over 20 years!) I had only had two weeks of treatments at that time and still had a month to go.

    People think the worst patient is the one that complains about every little thing but the truth is, the one that doesn’t say anything and just thinks that’s the way it’s supposed to be is the one that causes the doctors to climb the walls!

    Speak up, ask questions, complain if there’s something not quite right and keep on doing well. When treatments are done, get on with yur life. No one can live it like you do.

    Laura

  14. Paige (your daughter remember?) said on:

    July 16, 2007 at 10:01 am

    AHHAHAHA I remember that day!
    “Mom, you even gave me money for it!“
    LOL MOM YOUR SO CUTE.

  15. Andrew Christiansen said on:

    August 17, 2007 at 6:54 pm

    nice post!

  16. Laura Strebel said on:

    October 21, 2007 at 10:29 pm

    Sylvie,

    How are you doing girl? It’s been, what, 8 months since you posted on “Drugs, Fuzziness and Tattoos”??? How did the radiation treatments go and what are you on now? Please update how you are doing. As you can see there are people rootin’ for you.

    Laura

  17. Carol Tiffany said on:

    March 5, 2008 at 6:13 pm

    Hi Sylvie,
    I just came across your blog while searching for something else. My husband is now going through is second bout with cancer and seems to be doing very well.
    I wanted to let you know about something that helped me with hot flashes though. Drink anywhere from 2 to 8 oz of pomegranate juice a day. It works for about 70% of the women. It tastes pretty good. And I could actually sleep through the night.
    Keep up the positive outlook and good luck.
    Carol

  18. suni said on:

    March 28, 2008 at 4:10 pm

    praising God with you!

  19. Francine Ciaccia said on:

    November 1, 2008 at 5:28 pm

    Sylvie — congratulations — you did it! Please tell me it didn’t take too long for your eyelashes to grow back… I swear — I’m struggling with that more than anything for some stupid reason. Eyelashes! I feel lame even worrying about it, but still.… and forget the false eyelashes — the glue is beastly.

    Hope you’re doing great!

    All the best,

    Francine

  20. shercyramos said on:

    August 24, 2009 at 9:31 am

    Congratulations for finishing your chemotherapy. Your article helps me understand what cancer patients are going through. I can’t imagine the pain and the suffering, but your article shows me how admirable you are facing this challenge in your life. My prayers are with you.

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