FREQUENTLY ASKED QUESTIONS OF CANCER GIRL

Q:  How did you get your cancer?
A:  Please pay attention here.  This is not MY cancer.  This is HODGKIN’S cancer, remember?  HODGKIN’S … not mine. My cancer would be much nicer and involve ice cream and martinis at a much higher level.  And it wouldn’t kill you, it would just stop by for a quick visit on the way to the store to pick up that yummy fudge you can heat up in the microwave and drizzle over cookies.  No, not MY cancer.  I’m just, uh, being forced to watch it for a time being.  Sort of like your neighbor asking you to watch his house and water the flowers while he’s gone.  You never wanted to agree but then again, you didn’t really have a choice – and the house can kill you.  Sort of like that.

But to answer the question – who knows?  No one apparently.  My doctor shrugs when I ask and makes a pffft sound when I suggest that maybe it has something to do with my father having cancer.   There is some research that shows a link between this cancer and persons who test positive for the Epstein Barr virus at one time or another in their life.  “Are you familiar with Epstein Barr?” asks my doctor.  “Is that that little Jewish place on 43rd?” I ask.  And we all get a good chuckle.  Oh Cancer Girl, you are soooooo funny!

Q:  How did they find it?
A:  By “it” I’m assuming you mean My Cancer, right?  The short answer is they did a biopsy on a lymph node and it contained Reed-Sternberg cells.  Short, but unsatisfactory.  The somewhat longer answer is, remember that lump on my ankle?  The one I laughed away and said “oh it’s nothing!”  well well well … turns out it WAS nothing.  However, it was also an indicator of something else and hey howdy, that something else was cancer.  The ankle bump (officially erythema nodosum) was the first thing that popped up.  Then I noticed an enlarged lymph node just above my collarbone.  Eventually, other lymph nodes popped up too and they were different, not like normal nodes that pop up when you have a sore throat or the neighbor's cat scratches you.  No, these nodes were hard, calloused, mean.  They wore their size 40 jeans really low on their hips and had chains on their wallets.  I should have known they were up to no good. Eventually, after much persistence on my part and a visit to the ER, one of the angry nodes was forcibly removed and sent up river to do time.  I had hoped the different nodes were just misunderstood ….but it turns out mother was right….where there’s stink, there’s sh*t.

I’m kidding.  My mother never said that.  (She did say, however, the one who smelt it dealt it – which I’ve found is often true).

Interestingly, during this time I had to have a complete physical with complete blood work.  It all came out perfectly clean.  Moral of this story?   If you feel like something is wrong, it probably is.  You are your responsibility.  So eat right, sweat once a day and check your lymph nodes. (note to men ... those AREN'T lymph nodes)

Q:  What’s the prognosis?
A:  Please note the wording of this question.  It is the proper way to ask “are you going to die and if so, can I have your Cancer Purse?”  I actually have had only one person properly ask this question.  Only one person that has looked me in the eyes and said “…and the prognosis?”  Everyone else that has asked hasn’t really asked.  They’ve hinted.  They’ve hemmed.  They’ve hawed.  I would actually prefer an outright “is it fatal?” or “will you die?” to the hemming and hawing.  I would prefer someone say “are you coffin shopping?” to the “soooo, do you expect … um … things to go …well?”

The answer to the question is the prognosis is very very very good.  I’m very lucky.  This truly will be a small bump in my road only as large as I choose to make it.  I posted a while ago about 100 Guns and I still feel that at times.  There is always the lingering fear.   Like when you wear white pants on the last day of your period. You know what I'm talking about.

Q: Do you lose your pubic hair?
A:  First, let me point out that this is another question that is asked, but not directly.  It is a question people, women mostly, are dying to ask.  But who wants to say the word pubic anyway?  You can hardly blame people for wanting to dance around this one.  But as they say curiosity killed the .. (ahem) … cat. So people usually end up asking.  Or trying to.  The conversation most often goes like this:
“Will you lose your hair?”
“Yes.”
“All your hair?”
“Yes.”
“ALL of it?”
“Yes.”
“Like you know, ALL of it?” (quick circular motion around the nether regions)
(Matching the circular motion but more dramatically) “Yeeees!”
And here is the prime moment for someone to say something stupid.  Something usually about Brazil.  And something usually about how lucky I am.  And I counter that by pointing out that I haven’t found any pubic hairs anywhere yet but since I know I’m losing them I may just be tossing them out the bottom of my pants legs when I walk about their living room.  That usually shuts them up.

Q:  How much chemo will you have?
A:  This is an easy one.  6 rounds of ABVD.  ABVD is the type (4 types actually) of chemo I take.  It is given in rounds.  One round is two doses given 14 days apart.  There is a 14 day waiting period between rounds.  Gosh, I guess this isn’t so easy after all.  Basically, 12 treatments given over 6 months.  I’ve completed 1 round (or 2 treatments).  After 1 more round (2 more treatments) we will redo the PET scan.  My doctor expects to see a clean scan at that time.  That however does not change how much chemo I will get.  Even with a clean scan, I will still have to complete the full 6 rounds.  That’s my “just in case” chemo.  I’m thinking it’s going to be pretty tough mentally to complete all those treatments after I see a clean scan.  The old “out of sight out of mind” thing but then again, it only takes one bad cell to spoil the whole bunch so there’s reason enough to complete my treatment.

Q:  How are you doing/feeling?
A:  This is a tough one.  The answer can change in an instant.  I can go from feeling fabulous to ferocious in less time than it takes for you to ask me if I’m doing okay.  I have this amazing ability to go from zero to pissed off in under 3.3 seconds.  And likewise, I can go from the depths of despair to glory hallelujah with a single scoop of ice cream.  This may be why my nurse practitioner keeps suggesting a mild anti-depressant.  The weird thing is that I feel obligated to feel good.  I feel like if I don’t tell you “I’m doing good!” you’ll be upset.  I feel like I have to say something positive.  And well, I don’t always feel good.  Sometimes I feel downright poopy.  But I don’t want to tell you I feel poopy because then you don’t know what to say.  And it usually leads to the next question.

Q:  Is there anything I can do for you?
A:  Yes.  You can check you lymph nodes often.  You can tell your spouse you love him or her.  You can be grateful for the little things.  You can make a donation to your charity of choice.  You can smile at the bald woman at the mall.  .  You can count your blessings.  You can stop taking everything personally.  You can stop worrying about if you have the right dress or the right shoes or the right car.  You can listen to someone when they are talking – really listen.  You can tell your child it is okay to ask questions to the lady that looks different. You can give someone a second, third or 70th chance.  You can hug your kid when she spills chocolate milk on her t-shirt.  You can tell your dad thanks …for everything.  You can send someone a card the next time they are going through something and just say “I don’t know what to say but saying nothing isn’t an option.”  You can tell your mom you are proud of her.  You can open the door for someone else.  You can remember that we are all connected.  You can ask for what you want instead of complaining or pouting.  You can stop trying to be who you aren’t.  You can say thank you to the waitress, the doorman, the person who holds the elevator.  You can give someone else a break.  You can worry a little less and start living a little more. 

You can do all these things for me. And I’m going to try to do them for myself.

That’s all for now.  Other questions?  If so, email or comment.  I’ll answer.  I promise.

Comments

[Catie Knight]

Hi, my name is Catie and we have never met, but there is a connection. My husband, Robbie, once shared a cubical wall with your husband, Steve. In fact, I am pretty sure you once worked in Wacky Barkley World and even worked with Robbie as well. Robbie misses Steve a lot and when they worked together, Robbie often brought home stories of the Kid and the friendship Steve offered.

Steve sent Robbie an email not too long ago to let us know how he has been. He sent us the "diagnosis mass email" and it had a link to your blog....so here I am. Actually, I have been checking in regularly. Yes, I will admit it, I am a Blog Lurker.

I have hesitated to post a message, mostly b/c we don't know each other, however, after reading today's posting I just couldn't resist.

I think you are an incredibly gifted person and I find your posts honest and inspiring. Mostly, though, I appreciate your humor and your ability to stretch towards optimism...even if, and especially when the stretch is painful.

Robbie and I talk often about you and Steve and how you're doing. I guess the point of this post is just to let you know there are two more people out there routing for you both.

[Catie Knight]

Crap....I meant ROOTING for you. Geez!

[Jenne]

Thank you Catie! I'm glad to know you are out there reading and rooting! Tell Robbie I said hello. Thanks for the comment and all the good wishes.

[Wendy]

This was one of the funniest things I've ever read about a serious subject. Gotta love it. You're helping me learn how to be a better friend, a better person. Thanks. It's great stuff.

[Jeff Risley]

Ok, seriously, I wet my pants...I mean I actually peed a little from laughter when I read this post. Jesus H. Christ you're funny.

And I figured it out...today when I saw you and said your shaved head "wasn't what I expected," and you asked, "What did you expect," and I said "I don't know." I really meant "I can't put it into words." But what I meant was I expected you to look less feminine with a shaved head, but I was wrong. You still look very much like the lady you've always been.

[Steve]

If chemo enters your bloodstream on the 15th day of the 3rd round, how many rounds remain? Sounds like an SAT question.

I would NEVER wear white pants on the last day of your period, ever. I just wouldn't.

Quit leaving your pubic hairs in my living room.

I'm grateful for the little things, and the big things. And I'm working darn hard on not taking things personally. Thank you for showing me the world - not necessarily THE world, but YOUR world. Mine's a better place with you in it.

[beek]

Ah, Sneek. I have just finished reading this for the fourth time : ) Oh, Cancer Girl you ARE sooooo funny! Thanks for the last question's answer. Good soup for sure. I love you today!!! "Little Jewish place"... I'm STILL laughing!!

[Val Cheimis]

Thanks for saying all the things I did not think to say to the people who asked me the same questions while I was going through Chemo and treatment. And they did ask. I know the mood swings well,and add that to the hot flashes I now have and it gives a whole new meaning to "look at that hot bitch". Keep us laughing. Please,it takes my mind off how hot I am.

[Bree Cush]

Your blog is wonderful. Everything about you shines through as I have the privilege of having known you and therefore being able to experience your mannerisms in 3D. I have learned, however, that I can't read it at work anymore. Because just when I think you are being outrageously hilarious, something so prophetic and heartfelt crops up and makes me cry. You are an inspiration!!!

[Jenny]

I saw your comment on one of my posts and came over to see your blog .... I love it! Another cancer survivor with a good sense of humor! As a fellow Hodgkin's survivor, I REALLY think it would be nice if Dr. Hodgkin's would come get his disease AND it's side effects ... They have most certainly over stayed their welcome. (Would love to include a link to you in my blogroll ... If not, that's ok too.)

[sunny bhatia]

how we use cell cycle to aid knowledge on cancer

[HodgkinsNewbie]

Your blog has been such a place of strength for me since I found it about a week ago. I, too, learned I have Hodgkins earlier this summer. The bummer is that I'd just had my second child. She was 7 weeks old when I found the swollen supraclavicular node. 4 weeks later (the day before my son's 2nd birthday and 2 days before my 33rd birthday), I got the diagnosis. So far, I've been very graceful and humorous with the process. Then, I got treatment #4 this past Thursday, and it's thrown me over the top. 2 bouts of vomitting (and the corresponding wetting of the pants from 2 vaginal deliveries) and feeling like I have the world's worst hangover. Urgh.

So, I just need inspiration (outside of my wonderful family) to help me get through the rest of treatment. I don't want to die. I don't want to feel like this either. I'll either have 4 rounds + radiation (pending radiation oncology consult) or 6 rounds. Mentally, I'm ready for the 4 rounds, not the 6. Help!

You are beautiful! Thank you for chronicaling your journey with your hair. I probably should shave mine, but I have enough not to be embarrassed to be seen publically, and I'm keeping it as long as I can.

[Google]

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