Sunday, May 19, 2013

the post i didn't want to have to write...

okay, i am just going to say this because i still have too many people to tell and not a good way to tell it. i've composed this blog post in my mind for a month now, much longer than i should have, but i think it is just my tendency to jump right to the worst-case scenario.  and well folks, this particular worst-case scenario just became a reality for me on friday.

so... here it is: i have breast cancer.  blah.  i have to put the blah right after the reality because it's how i feel about it right now.  sometimes i feel less blah.  i was hoping to write this when i felt less blah, but well, i just need to get this out and done and i have time now, so, there it is.

awhile back on facebook i posted the new york times article, 'our feel good war on breast cancer' (and if you haven't read it yet, please do).  i did this knowing i was scheduled for my first mammogram, but not those overdone routine ones she talks about in the article (the kind that well, who knows, may have caught this in me a year ago, but maybe not), but a mammogram to learn more about a mass i'd found in my right breast one night while getting ready for bed.  just there one night.  not there the night before. not there that morning.  not there a second earlier than i noticed it.  well, of course it was.  it's big.  from my own little bits of research that i've done when i'm not too research-averse, it seems to put me at stage three.  that, and the fact that it's spread to at least one of my lymph nodes.  this i know after having the mammogram, an ultrasound, a biopsy, chest x-rays, and an MRI.  what i don't know yet is if it's spread further.  on friday, the day i got the news, they did blood tests a CT scan.  i get those results next week.  and then probably they tell me what stage it's at.  maybe it's not stage three.  maybe the stage doesn't matter so much.  just that it's found now and i can start to treat it.

the current plan is 8 rounds of chemo, with a span of three weeks in between each round.  then surgery.  then hormone blocking drugs as mine is estrogen-receptor positive (and HER2 normal).  our seven week trip to the u.s.?  i don't know about that.

we haven't told william or henry yet.  of course william will understand to a much greater extent than henry.  henry still nurses and i am beginning to wean him because of this.  i know extended breastfeeding isn't everyone's cup of tea, but it worked for us.  it was a wonderful way of bonding with and comforting my children (i can stop a crying child in 2 seconds flat... i'm going to need a new strategy) and well, i'm so glad i was able to do it for so long but my boobs were probably so tired of it that they brought this whole thing on themselves.  just kidding.  in the last 48 hours i've pinned the blame on so many different things, but not nursing.  weaning henry now is just collateral damage in this whole unbelievable reality.

but i'll get past the unbelievability of it all.  i'm anxious, really anxious to get through these initial feelings.  i didn't think i would be asking, 'why me?'  but i do notice myself passing people smoking cigarettes, eating food they bought from 7-11 (those are big here), and wondering, in a completely objective non-malicious way, "huh, it's so interesting how completely random cancer seems to be."  but i guess, in a way, that's me wondering, 'why me?'  but i've told my family about this and i can hardly believe how many of my own family (and granted, there are a lot of people in my family) know someone, some young person, who has had breast cancer.  it's making me feel like it's actually not so unusual that i got this.  there are plenty of women in their 30s and 40s with breast cancer.  and everyone i've heard about so far, has gotten through treatment.  maybe my family is kind enough not to tell me about the ones who don't.  thank you for that!

i just read an article today from a girl whose mother was just diagnosed with cancer.  the reality for that family feels so much different from my own.  maybe it's because they have been getting telephone calls and i have been getting emails.  i can see how telephone calls would be hard right now and i have the advantage of prohibitively expensive international rates.  but emails.  those are different.  i can read and answer them in my own time, when i'm not feeling blah (or, if you're so lucky, you get one of my 'blah' responses).  the emails i've gotten with their positive messages have lifted me up so much.  maybe i'm easy to please in that sense.  words have a huge effect on me.  especially the good ones, so i know you'll get busy and i know life goes on (it better!), but if you think of it, if you're wondering about me, then please, by all means, send me an email.  and please, by all means, send greg an email.  i don't know if he wants them and i don't know that he'll always be very good at responding, but i do know i don't want him to get forgotten in this adventure/journey/mess and in many senses he has the harder job than i do and i won't always be able to give him the support he will need.  

i also have a few things i'm curious about but don't know that i necessarily have time to research, if you somehow have more time in your day (bearing in mind that i don't even have a job and my children have childcare... so i pretty much have more time in the world than anybody) and you want to help... i want to know what...

foods i should eat
foods i should avoid
vitamins i should take
vitamins i should avoid
exercise i should do
exercise i should avoid


can i ride my bike to and from chemo or should i get a ride?

and, do you have some...

words of wisdom that will make me feel brave?

and are you...

a funny person?  because i really appreciate humor right now.

and have you heard of the...

newest scientific breakthroughs that don't mention how screwed i really am?


anything else you can think of that you think will help because i'm not wise like you.

also, i want to mention, because i've asked you to email and to do all kinds of research and i will appreciate all of it, (even if you do none of it), i know i will because i've already felt all the love from the people i've told and it feels good, and so far i've been able to write everyone back and actually tell them how much i appreciate it, but sometimes, even without cancer, emails fall through the cracks or i put them off, and i'm afraid cancer isn't going to somehow make me a better emailer.  so, i apologize beforehand if you ever don't hear back from me, but know that i am writing you back in my head to say thank you.

and for listening to me go on and on right now, in this blah mood that i'm in... well, thank you for that too.  as i said in my email to my family... i have so much to be thankful for right now.


Sara said...


I am a friend of Phyllis who is living in your wonderful house at Troy Gardens. She told me about your blog post as I am 3 years out from a breast cancer diagnosis. I'd be glad to correspond, can share what I've learned about some of your questions. You can e-mail me at

I certainly felt stunned. I appreciate your honesty about feeling blah which may at times feel even less than blah!

You probably can ride your bike to chemo, particularly at first. Everyone's response is different and changes along the way. Might want to find a barf bag for your handle bars... Just in case!

Hard news to digest. Sending love from Madison.


greg|regan said...

Hi Sara,

I know you a bit from 'Las Tres Abuelas'! Thank you for your message. I laughed at the suggestion of the barf bag for the handle bars. Could be a hot item to market for people living with cancer in bike friendly countries like Denmark! I hope to get in touch with you soon!


Anonymous said...

The danish cancer society has some brochures in english about the treatment .

Best wishes to you and your family.


nina said...

Well, you know what I think of all this (it mega sucks), so I wont repeat myself here, but I just want to say that your post is exquisite as always.

And I do support the idea of carrying a barf bag, otherwise people will conclude that you're one of those perpetually hungover types and I can just see you saying in perfect Danish -- no no, sorry, I have cancer -- and that may get tiring after a while.

Tell Greg that I think (we all think) that it sucks for him too.

Joe Beck said...

Regan, I am so sorry to hear this news. As far as information sources, there are outs of poor ones out there.
Anything from medscape will contain the best information from the experts. If you can manage to get through the jargon, you will be better informed that anyone short of an oncologist (I am only half kidding). Here are two to get you started, but there may be more there.

As far as food choices, IMHO you would be better served paying extremely close attention to your chemos. It might be helpful to learn everything you can about how your particular chemo works and what are the appropriate dosages for your situation (once you fuly understand it). Do not assume your oncologist has read the latest research papers. If you find a recent paper (in a real journal) showing that a different chemo has been giving better results, or maybe combination approach has recently been showing promise. If the paper is especially releveant to your exact type of breast cancer, then bring it in to show your oncologist to get his opinion. Dont be afraid to ask him questions on how he is determining the dosage or the drug, and then double check to see if this is current best practices. No one has the time to investigate your specific condition like you do. Obviously you should not be antagonistic or pushy, but a few intelligent questions will not be unwelcome, but might even be refreshing.

Joe Beck said...

As far as vitamins, I have not investigated this in depth, but I have heard of reports that large amunts if vitamins are more likely to help the cancer rather than help your immune system.
Rapidly growing cells (such as cancer) are more in need of nutrition than the more slowly growing cells in your body. Also extra amounts of antioxidants, such as vitamin C, can actually help protect the cancer from your immune system which uses oxidative damage to attack the cancer (antioxidants reduce oxidative damage you see).
This is all the more reason to focus on the medications rather than nutritional approaches.
Feel free to show me any papers or other sources if you want my opinion on them. I am not an oncologist or even a medical doctor, but I do have extensive experience in cell biology, receptor biology and pharmacology.

Anonymous said...

Maybe it's just an "It can't happen to me." kind of thing, but I just feel like it's going to work out.
I know that's not the useful sort of info you are looking for, but I hope it helps.


Barbara said...

What a brave and beautiful post! I found my way to your blog some time ago through my friend Nina's blog, and I love reading (and seeing) your adventures in Denmark and your delightful boys. Please know that your loyal readers out here in cyberspace are thinking of you and your family and wishing you all the best.

Susie said...

I was so sorry to read about your cancer diagnosis. I pray the next few days bring answers and some reassurance that you will be beat this. You've been through two natural births, heck, you can do anything :)
Thank you for your vulnerability in your posts. I have only one woman I know through another friend that has fought cancer. She was diagnosed as stage four, but made it and is strong today and doing well (with three little ones). We're praying for you and Greg and hope that your weekend flies by and you're able to get answers soon. Hugs from Wisconsin!

greg|regan said...

Erik, Nina, Joe, Lucas, Barbara, and Susie,

Thank you for your words! Sorry it's taken me so long to say thank you!