Drugs, Fuzziness And Tattoos

Ring my bellChemo 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. :)

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.” :)

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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