In April 2004 at the age of 33 I was diagnosed with Stage IIIA invasive ductal carcinoma with lobular features and axillary node involvement. During my year of treatment involving surgery, radiation and chemotherapy, I chose to keep my close friends, family and work colleagues informed via email. These emails are reproduced unedited here on this page.
April 21, 2004
April 21, 2004
This is a very difficult email for me to send, but I need to let you all know what is going on with me as the news will spread soon enough, and better now to let you know the facts rather than second hand information......apologies for the form of mass communication, but in these circumstances I think it's best that I speak to all of you as a whole so that you
all have the same information.
Last week I was diagnosed with breast cancer. No one was more shocked to receive this diagnosis than I. I have no family history and am not considered to be in any risk factors yet still it's got me.
Although the cancer is somewhat advanced the good news is that it does look as though it has localized......I have just had body scans which are clear, thank god and my oncologist says that I am operable and fixable so my prognosis is good.
I have taken leave from work for the next 4 - 5 months. I'm starting chemotherapy next week for 8 weeks and then there'll be some surgery and then another 8 weeks of chemo. I am working with a fab oncologist (Dr Wonder Woman) and surgeon (Dr EN) out of Cornell so I'm in the best hands possible......if you're going to get this then NY is definitely the place ! In fact Dr WW is a specialist in young women’s breast cancer so she is on the cutting edge of all the latest treatments.
I have several messages that I want to get across to all of you.
Firstly, there is a fight ahead, but it is a fight I WILL win. Secondly, I'm over being sad about this - now I'm just angry which is fueling my energy for the fight ahead; so I'm not sensitive about the subject and am happy to talk about this if any of you have questions - I refuse to let this thing be a stigma.....people need to understand what this thing is all about.
Thirdly, if I had had a mammogram this time last year we would have caught this....I had a manual breast exam at the doctors on 2/18 and there was no lump, a month later the lump appeared which is when I found it and embarked on the path I'm on now...turns out this probably started 12 months ago but was invisible....the only way to detect early stage breast
cancer is to have a mammogram......the issue here is that the doctors and medical insurers don't advocate women under 40 having mammograms a) because they're
not considered at risk and b) there is some debate as to how effective the mammograms are in "seeing" young women’s tissue.......well ladies screw it - go against the advice and just have the mammogram / body scan / whatever and pay for it yourself if you have to - what
harm can it do and if god forbid there is something there (that is invisible to the touch) , you'll catch it ! I am the second person in my age category that I know within my circle of contacts to get this thing...the same story - she had no history blah blah, she is recovered now but her story is almost identical to mine.
Fourth - DON'T FORGET ABOUT ME !!! No need to tiptoe around me.....I'm not sensitive about this and life must go on....humor is a good thing !!! OK so I don't see myself out drinking with the Uni crew any time soon but I'm always at the end of a phone, email
and there'll be many days where going out to lunch is as good a reason as any to get out of bed and get dressed and comb my wig. Please also come and visit.....just don't come bearing cold germs or the like....immune system will be none too happy about this.
Fifth - I'm going to look like a freak - will be losing my hair and probably eyebrows, eyelashes etc will also probably lose a lot of weight (is it possible ???)....on the plus side no more waxing for awhile, but on the down side I'm not likely to make it to the pages of Sunday Styles for a bit......I may look a lot worse than I actually feel so prepare yourselves for next time you see me. In fact, I am having all my hair cut off this weekend to v. short hairstyle in order to make transition to baldy conehead less of an unknown.
Sixth - for the time being our Sept wedding date stands........hell A and I need a bright spot on the horizon and this date will mark the end of the chemo and a new beginning so don't get your erasers out yet. I may be a baldy bride but you can be sure I'll be glowing with good health on the day and will be joining you for Margaritas on the NJ Shore ! Timmy - I await your drunken speech and kind words on the day !
So what are the next steps for me ? I have a day surgery this Friday and then I start chemo next Wednesday. A and I will divide our time between our Manhattan apartment and his parents house in NJ....probably Mon - Wed in city and Thurs - Sun in NJ.
You can reach me on any of the following numbers and immediately telephone - I'm ok and spending this week still getting more tests and wrapping things up at work so am quite busy but we will talk soon as you can
be sure I'm going to get very bored as the days start to drag !
One of my projects during this time is to continue the education process - I'll be sending you regular emails to update you on my progress - we're all going to become very familiar with blood cell counts, chemo dosage amounts etc in the coming months......think of me as a very interesting science project.....actually this is really the case as far as my doctors are
concerned - they all love having me as a patient because they get to learn a lot about this disease as far as young women are concerned.
So friends, I will sign off for now.....I love you all very much and will be in touch again soon.
And to borrow from the words of Timmy: from me to my cancer : BRING IT ON F@#$ER I'M READY TO KICK YOUR AS@ !!!!
April 27, 2004
Just a quick note to say that the surgery on Friday was ok - sick as a dog from anesthetic and a bit sore but no complaints otherwise. Thanks to all of you who called or emailed asking after me.
Friday was just a minor procedure so no big deal - the big one is about 8-9 weeks away.
Start chemo tomorrow - a bittersweet moment if ever there was one, then heading over to NJ for some R&R and good Italian home cooking - A's mum has been feverishly making chicken soup - about 30 frozen individual containers at last count !
I'll send another update soon.
Thinking of you all.
May 5, 2004
Well the news is in - so far so good. My body has been extremely receptive to the first round of chemo and would you believe that my tumor has already shrunk! And no this is not my imagination - my surgeon examined me yesterday and confirmed this to be true !!! Can you believe within 7 days this result - apparently this is possible - the drugs today are that good.
Unfortunately this does not give me early parole on anything - but what is does give rise to is a better sense of how effective my treatment will be - I am holding my breath at this point and hoping that the next rounds of chemo will keep delivering the same results......so to all of you meditators, religious worshippers, reikiists, positive thinkers etc whatever you are doing just keep doing it because it's working!
I also just want to put your fears at rest - I look great bald !!!!! Rather than let the cancer control me, I was proactive on the weekend and shaved off all of my hair, rather than wait for it fall out on my pillow and feel shocked and depressed by that - I have to say it was rather a liberating thing to do (no more shampooing, blowdrying etc) and I love the fresh air feeling on my head. Those who have seen me (and I have proudly shown them my bald head worn like a badge of honor) say that I look remarkably like Sinead O'Connor - sans the ripped up picture of the pope ! Either that or a very glamorous white supremacist........anyhow I've already decided that my post-cancer hairstyle will remain short (and probably curly if the rumors about regrowth are true)
Effects of chemo so far have been manageable - a couple of days with my head in a bucket (at least no more hair to dangle in !) and a feeling of having the hangover that won't end (Timmy you know what I'm talking about) and a loss of appetite for a good 5 days - nothing a good amount of bedrest and a handful of side effect drugs doesn't fix.......my doctor also
prescribed me anxiety pills to take if I feel like it.....I have given those to my mother-in-law and am "holding" if anyone's buying - I figure there's some street value with those babies!!!!!
So this week I have started planning surgery with my lovely Doctor EN (I LOVE this man - just so doctorish and delightful) and need to now go and audition plastic surgeons - after all my girls need to be in the best of all possible hands (so to speak)...scheduling for around first week of July at this point.
Anyway I think that's all of my news this week - love and kisses to you all - thanks to those who called and emailed this week and to my lunching ladies who came to hang out with me.....I'll be auditioning for chemo-buddy spots in the coming weeks so NY friends stay tuned !
May 15, 2004
Once again thanks to all who emailed and phoned this week - just know how much I love to get your messages and read about the things going on in your lives. Some people worry that their life details are boring and mundane.....but guess what folks, the boring and mundane details are in fact the spice of life and right now I just love to hear about these things as much as the most exciting tales......your little stories keep me in contact with you and in contact with the "normal" world so keep 'em coming - they mean a lot to me !
Thanks also this week to my boys from the bullpen who I enjoyed a very kosher lunch with at my apartment this week - hmmmm 4 males arriving at my apt in the middle of the day during the week.....what could the doorman be thinking ?????
So this week not too much to report. Another chemo treatment under my belt - 2 down 6 to go so nearly at the halfway point. Thanks to Deidra who was my chemo buddy this week and kept me well satiated with bagels and water, and lovingly read to me from US magazine - the two hours really flew by and Deidra will attest to the happy pills that I'm sure they give me in my drip ! The body is starting to undergo a lot of physical changes and the hair that I have left after the buzz cut has officially started to fall out.....fatigue is a big issue right now - I sleep for at least 12 hours a night and nap during the day, but I've come to grips with the fact that fighting this thing is my full-time job now so if the body needs that much rest then it's sure as hell going to get it !
Fighting some mental demons this week......perhaps I am watching too much Lifetime TV and Oprah but I think all the thoughts that run through your head are par for the course and I guess that I am going to have my "down days". In all of my reading, many times people talk about what's hard about having cancer - people talk about the hair loss, the chemo, the surgery blah blah blah - to me these things are not hard - they are just the things that a well person needs to undergo to stay well.....one of the hardest things is actually identifying myself as a person who now sits in this particular medical demographic.....the statistics say that I am in just 0.5% of the population........how did I get there ? A question that still remains to be answered by research.
If anyone would like more information on this subject there is a very good website ...
www.breastcancer.org which answers a lot of questions. I have also joined a support group / semi political group which is organized out of NY called The Young Survivors Coalition (there is a website but can't remember title).....a group specifically for women under 40 coping with breast cancer - another interesting site, but also a group who is very active politically in trying to draw attention to the issue of screening in younger women which as we all know now is almost non-existent other than self examination. I hope to become more involved with this group in the future and lend my voice to the cause.
Anyhow I think that's about all for now - love and kisses to all of you.
Talk again soon,
May 24, 2004
Week 4's update comes to you a little late.......nothing serious in fact quite the opposite....after the last chemo I was extremely fatigued for 4-5days following....even changing the channel on the remote was a huge effort !....but my reward for getting through that was a real energy spurt that came on late last week....interestingly the spurt followed some very positive news which is more related to the future but gave me a huge mental
lift.......I'm a strong believer that if the mental state is kept positive and spirits are lifted, this can only translate to the physical being sooner or later.....I think this is what happened.....my white blood cell count remained within normal range this time around, so no pesky little secondary illnesses. Still a few annoying side effects from the chemo which persist and I
expect are going to be cumulative in nature but these are a small price to pay on those "good" days when one is almost able to feel normal.
So this weekend I felt almost back to my old self and managed to be quite active over the weekend which was spent in NJ........looking forward to having more days like this so that I can almost forget the war that continues to rage on in my body.
Last week A and I met with some plastic surgeons and we were truly amazed at what is possible in the realm of reconstructive surgery. One doctor was from the Cornell Weill Breast Center and the other was from the 5th Avenue world of plastic surgery......both extremely brilliant, but given the nature of their practices, their approaches were very different. In the end I think we are going to go with the 5th Ave guy......we really liked his approach in that he is so strongly committed to achieving a result that is nothing less than perfect......after all that is what you are paying for......and he literally wrote the book on the subject which is now industry standard.....I continue to be so amazed at the luck we have had in getting in with these doctors - in all of my readings I continually keep coming across my doctors names being quoted in the latest research, procedures etc....I feel extremely comfortable with my A Team.
So this week I have another chemo, and S will be joining me as my chemo buddy this week with promises of a portable DVD player......I think I feel a viewing of Old School coming on....and what better place for all the mirth in that movie than in your oncologists office !
Hopefully the chemo fog will lift in time for Memorial Day weekend so that I can enjoy a good ole American BBQ......hope you've all got some exciting plans for the weekend.....
Anyway that's all for now.........peace, love and all of that stuff and will talk to you all soon.
July 12, 2004
Firstly I must apologize for my lazy correspondence since the last which must have been at least 6 weeks ago ???? Time seems to have gotten away from me......to be honest the chemo really knocked me around for a good 4 weeks and I was barely able to get out of bed....I also managed to develop pretty severe anemia which didn't help the fatigue situation. I felt like I didn't want to email at that point as my state of mind was not feeling too positive and I didn't want to depress you all.
But anyhow moving right along......my last chemo treatment (of the first round) was June 9th. My doctors and I made the decision to go ahead with surgery as soon as possible......there is a little bit of a mystery as to how the tumor has responded to the chemo and without pathology, treatment becomes based on theory and conjecture......my feelings were pretty
adamant on the matter....let's just take the bastard out......(folks don't panic...there's no doubt that I'm operable)..... So that's what we're doing.....this Thursday on July 15th to be exact..I'll
be on the table at NY Presbyterian for about 6 hours.......not sure how long I'll be in hospital....probably around 3 days....it just depends on exactly what they do and how well I heal.....we're still waiting on some more test results to determine exactly the surgical procedure but it will be a single mastectomy at this point.
So the surgery is a bittersweet milestone. On one hand it was great because they stopped the chemo in order to let my body (and mind) heal to get me in shape to be able to take the surgery.....after kicking the anemia (with the help of weekly shots of a wonder drug) I have spent the past couple of weeks feeling almost back to my old self....sans hair.......I told my oncologist that I was taking a vacation from the cancer for this time and that's really what it feels like.....ahhhh to be able to taste food again and feel like eating it and being able to digest it, go whole days without napping for the entire afternoon, have some color back in my cheeks etc... people, it's the simple pleasures in life that one really appreciates now.
Also like I said above the surgery will allow us to learn so much more about what we're actually dealing with and how best to treat this following the surgery and at the end of the day the surgery may be successful in removing 100% of the cancer or at least a huge
portion of it....so I'm excited from that point of view. Of course on the other hand, it's an emotional time.....losing a body part that I'm quite attached to (and perfectly happy with) is no laughing matter, but I have complete faith that my reconstructive surgeon will do a great job in putting me back together again.
So folks, this week I intend to continue my vacation albeit with a minor interruption of having to sit a tax exam tonight but that's no big deal....I'm almost at the end of the school thing, and I owe a ton of gratitude to another student in the class, who has been a huge help in taking notes for me when I'm not able to attend class which is about half the time !
Also my Dad and brother are with me at this time, so I'm enjoying spending some quality time with them.
Anyway folks, wish me luck and keep me in your thoughts and prayers.....I need all the positive energy I can get this week. I'll email you again once it's all behind me and I'm in shape again to type on a keyboard.
Just remember, all of this is a good thing, every day that I get through is another day closer to wellness and getting my life back.
Love to you all, and I'll talk to you again soon.
August 21, 2004
I'm so sorry to be so lax in my email updates - it usually means one of two things....either that I'm feeling great and therefore packing in a ton of activities whilst feeling energetic or that I'm not feeling great and just don't feel like talking. I'm pleased to report that the reason my latest transgression is due to the former.
Since the surgery, my recovery and healing have been fantastic. I have almost regained all of the movement in my arm - due in no short part to some fairly intensive physical therapy, and my almost obsessive daily stretching rituals. My energy levels have been great so I have been packing in lots of active living in what remains of the summer into the last few weeks. I'm also pleased to report that I finally finished graduate school (gasp !!!) - I took my final exam 2 weeks ago and can confirm that I passed with flying colors - I must say after such a long haul (three years !!!) I feel much relief and satisfaction that it's done - the last two classes of course being the most challenging (due to the health issues) and I couldn't have done it without the support of the professors and a fellow student who was such a help in making sure that I was kept up to date with notes from the many classes that I had to miss.
So what's next you ask ? Well in four weeks A and I will be married - yes the wedding is still on and the excitement level is certainly building. So I have spent a lot of time in the last few weeks shopping for something to wear and finalizing the details. A's mother has been such a help and has taken on many of the tasks to take the pressure of me and A - prior to regaining my strength back it had been very difficult for me to pay any attention to the organizing aspect as I was simply too ill to be able direct any energy to the event -
September 30, 2004
Thought it was about time I updated you all and shared with you a sneak preview picture of the wedding hot off the press........there are more to follow which will be included on a website from which prints can be ordered....I'll send it out as soon as it's ready.
The wedding was so much fun, and our feet hardly touched the ground for a good 2 weeks. I spent the 3-day festival high on adrenalin (the wonders of mother nature) and was able to pretty much forget about the illness for that time. After a whirlwind time spent with friends and family many of whom flew in from afar, and a snatched few days of good health enabling us to enjoy a much needed mini-honeymoon in Vegas (and yes the house ALWAYS wins!) we're now back in the city, back to work for A, and back to treatment for me (my work) and back to reality with a bit of a thud.
I am now well into the second round of chemo, which we're experimenting with right now with the aim of allowing me to manage the side-effects to a point that I can get back to work part-time - a little bit of a waiting game which is frustrating for me as my mind is now certainly far more active on this new chemo than the fog-induced chemo brain that I came down with on the first round. So with the mind in gear, we now just need to get the physical under control.
I had a little day surgery on Monday to install what is known as a port to make treatments (which are weekly) more bearable as well sparing my veins which are just
starting to give up. The port is a little device which sits under my skin below my collarbone which is connected to the main vein in my neck - think of it as like an electrical socket - and I am literally now just plugged into my IV which is very quick and painless, and we are also able to draw blood in a very easy manner (yes have to have blood taken every week
to check white and red blood cell counts). As to prognosis, I like to think of this second round of chemo as the clean-up crew following what was by all accounts a successful surgery, and a little insurance to make sure I don't have a recurrence. I'll be on this round until Xmas.
So I'm still feeling very positive, am enjoying married life and really now have the end of treatment in my sights - my mind is alert and I am putting my spare time (when feeling up to it) to positive works - have become involved with a little charity set up by another breast cancer survivor which is designed to educate and empower the newly diagnosed - having been through the experience I find what this charity is doing to be extremely important and something I definitely could have used.
This weekend, some of my girls in NYC are participating in the Avon Walk - K, Li and KH are walking in my honor and they have raised nearly $10,000 so far - way to go girls and thanks to all those who have donated to the cause !!!!! All going well I'm planning to go and cheer them along on Saturday.
So I can't think of anything else at this point - stay tuned for news of the wedding website pics and I'll try and be more punctual with my updates ! If the email is quiet, it usually means that I'm screamingly busy with dr appointments etc or am just not feeling like talking - it's never usually anything serious so to those of you who tend to worry when they don't hear from me - please don't - everything is ticking along according to plan and I'm doing fine. Thanks to all of you who have emailed, called and visited and continue to do so - I just love to hear from you all and very much enjoy my visitors.
Talk again soon !
